I didn't just want to make another "what I'm thankful for this year" post just because it was Thanksgiving so I held off a bit. But as I pondered what I wanted to write about I realized I do want to share what I'm thankful for.
I struggle a lot you see; doubt, fear, anger, depression, anxiety. I try and keep one foot in front of the other but I look around me all the time, at the wind and waves and it terrifies me and I lose sight of what God is doing and I start to sink. I cry out to Him and He always lifts me up but as I continue to struggle on sometimes I wonder if the storm will ever be over. Gently the Spirit whispers what do you have? Not, what do you NOT have? What do I have to be thankful for? Oh so much.
Salvation, my relationship with Christ.
A wonderful and caring husband. I pause here because I want to tell you a little bit about my partner and my best friend. He's not perfect, no and sometimes I really get upset with him, but OH the blessing of having him in my life. My companion who is never grossed out by me or my problems. I have sat trembling, naked, drugged with 3 or more tubes coming out of my body dragging around containers of fluid, caked with blood and mucus, crying and in pain and he has patiently and tenderly cleaned me up and kissed me. He prays for me and is patient with me. He knows just how to make me laugh and sometimes he can even read my mind. Those vows we took together, we have seen more worse than better, much more poverty than riches and much much more sickness than health and he's never complained. Thank you God, for Shon.
My family. My parents, my brother and my in-laws. They have all sacrificed for me and I can't even begin to repay them or show my gratitude enough.
My friends, my dear friends who have stood by me and listened when I needed to talk, who visited me when I was sick and who cheered me up when I was sad.
My doctors. Oh how thankful I am to be within an hour of the Cleveland Clinic. When people spend their life-savings to go to this hospital and see the same doctors that I can see. They're not just the best at what they do they genuinely care for me. They are kind and compassionate, they can make me laugh and they do they're best to help me. That God brought us here when I never even thought I'd want to live in Ohio.
My k-pouch. I'm so thankful for my k-pouch. Despite everything I went through to get it and any other problems I might have as a result of all my surgeries I would do it all again in an instant. It's important that I remind myself of this because I AM having other problems now that may very well be a result of so much surgery. Its hard too because webmd just can't help me and my regular doctors are so befuddled by my anatomical abnormalities they don't know where to begin. I may be heading back to the CC soon so please pray for me.
Its too easy to lose sight of the good things, easy to forget the things that I have and mourn the things that I don't have. To wish for more money, better health, nicer things, a better job. But I'm trying to be thankful every day, because everything I have is a gift from God.
I hope you're thankful too.
Saturday, November 24, 2007
Wednesday, October 31, 2007
Poster Kock Poucher
Thats me.
I saw my dear surgeon today and that's what he called me - a poster Kock-poucher. He even suggested that I write in to a journal that the Cleveland Clinic publishes called the Pouch-O-Gram and tell them my story. He said that the Kock pouch just isn't done very often anymore because it requires a tremendous amount of skill in the surgeon and a very motivated patient but it's a great option for people like me. He said I should let the world know how much I love it.
My visit didn't start off that great though. It started with being stuck three times just for blood. The nurse said I didn't have veins that God just drew lines on my arms. They did eventually get it though and the tech really was good. She was kind and she took care to be as gentle as possible and distract me by talking.
Then I went upstairs and when the nurse was taking me back I passed Dr Remzi in the hall, he said to the nurse "please be quick, I need to leave in 15 minutes." As I sat in the exam room after the nurse left though I felt distraught. I don't want to feel rushed, I don't need a lot of attention but I do need some time where he's not running out the door. So I just started to pray, I prayed that God would give Dr Remzi the opportunity to go do what he needs to do and then come back. I prayed "Oh God, if I could just have his undivided attention for 10 minutes - I'd settle for 7 if I can speak clearly." He came in shortly after I finished praying. I had been standing and leaning against a wall when he came in and he took a look at me and my stoma (Looks good!) then he mentioned an email I had sent him last week informing him of another problem I'm having. He said "You look concerned and I don't wanna rush you. I have a meeting I have to go to. Can you wait? I'll be back at 4pm" (it was 3:15) YES! Thank you, thank you, thank you God.
So he came back in promptly at 4 trailing his nurse and a Fellow. Now the most uncomfortable part of the visit came, he wanted to examine my perianal wound to make sure it wasn't the source of any of my new issues. Not only did I have to kneel and "assume the position" but this stupid table actually bends in the middle and jacks your rear high into the air so the doctor can get a really good look. Well now that my dignity has left the room.....
My consolation was that it was short-lived and probably the last time that will ever happen again, a fortunate side effect of having the rectum removed!
After that we got to talk, and I told him that I wanted to tell him the good things in my life since surgery and not just come in to talk about problems. He heartily assented and I related the following:
#1 I sleep through the night, all the time. I haven't slept through the night since I was 12 (before I had UC and lost my colon) and now I do it all the time. I don't have to get up to go to the bathroom and I can't even begin to express how awesome that is.
Dr Remzi was grinning from ear to ear at this point
#2 I go to the bathroom 4 times a day. 4 times a day. There is no way to relate to you people with colons what that kind of freedom means to me.
I was practically choking back tears of gratitude and he was still grinning and he turned to his Fellow and said "Look at her! She's a model of the success this surgery can be. I was reluctant to do this and I made her wait but she proved to me she was motivated and just look at her!"
Thats when he said I was a poster K-poucher.
I saw my dear surgeon today and that's what he called me - a poster Kock-poucher. He even suggested that I write in to a journal that the Cleveland Clinic publishes called the Pouch-O-Gram and tell them my story. He said that the Kock pouch just isn't done very often anymore because it requires a tremendous amount of skill in the surgeon and a very motivated patient but it's a great option for people like me. He said I should let the world know how much I love it.
My visit didn't start off that great though. It started with being stuck three times just for blood. The nurse said I didn't have veins that God just drew lines on my arms. They did eventually get it though and the tech really was good. She was kind and she took care to be as gentle as possible and distract me by talking.
Then I went upstairs and when the nurse was taking me back I passed Dr Remzi in the hall, he said to the nurse "please be quick, I need to leave in 15 minutes." As I sat in the exam room after the nurse left though I felt distraught. I don't want to feel rushed, I don't need a lot of attention but I do need some time where he's not running out the door. So I just started to pray, I prayed that God would give Dr Remzi the opportunity to go do what he needs to do and then come back. I prayed "Oh God, if I could just have his undivided attention for 10 minutes - I'd settle for 7 if I can speak clearly." He came in shortly after I finished praying. I had been standing and leaning against a wall when he came in and he took a look at me and my stoma (Looks good!) then he mentioned an email I had sent him last week informing him of another problem I'm having. He said "You look concerned and I don't wanna rush you. I have a meeting I have to go to. Can you wait? I'll be back at 4pm" (it was 3:15) YES! Thank you, thank you, thank you God.
So he came back in promptly at 4 trailing his nurse and a Fellow. Now the most uncomfortable part of the visit came, he wanted to examine my perianal wound to make sure it wasn't the source of any of my new issues. Not only did I have to kneel and "assume the position" but this stupid table actually bends in the middle and jacks your rear high into the air so the doctor can get a really good look. Well now that my dignity has left the room.....
My consolation was that it was short-lived and probably the last time that will ever happen again, a fortunate side effect of having the rectum removed!
After that we got to talk, and I told him that I wanted to tell him the good things in my life since surgery and not just come in to talk about problems. He heartily assented and I related the following:
#1 I sleep through the night, all the time. I haven't slept through the night since I was 12 (before I had UC and lost my colon) and now I do it all the time. I don't have to get up to go to the bathroom and I can't even begin to express how awesome that is.
Dr Remzi was grinning from ear to ear at this point
#2 I go to the bathroom 4 times a day. 4 times a day. There is no way to relate to you people with colons what that kind of freedom means to me.
I was practically choking back tears of gratitude and he was still grinning and he turned to his Fellow and said "Look at her! She's a model of the success this surgery can be. I was reluctant to do this and I made her wait but she proved to me she was motivated and just look at her!"
Thats when he said I was a poster K-poucher.
Wednesday, October 10, 2007
Off Topic ---- Contentment
So the whole reason I created this blog site was so I'd have a place to come and rant away my frustrations with my health, to explain to people whats happening with me now and journal really. Its been incredibly therapeutic for me to come here and write everything thats on my heart and mind. Say things that I wouldn't have the courage to say face to face....
And I told myself when I started doing this that this was supposed to be about that, and I'm not going to write if I don't have something to say or something I needed to get off my chest. Too many blogs end up being ridiculous and mundane. This is not "A day in the life of Katie." But something has been on my heart a lot recently and while its not entirely health-related I did want to "get it out" so to speak.
I think one of the biggest things that God has been trying to teach me over the last 3 years is contentment. He stripped me of everything that I took pride and security in: My independence; we were quite independent in Chicago. My job; I took great pride in being a Media Producer at Wheaton college. My health, whats better than being young and healthy? My dreams of where I expected Shon and I to be when we'd been married 5 years. On our 5 year wedding anniversary (Aug 18, 2006) I was having an outpatient surgery to repair my fistula.
Of course my natural reaction to having everything taken away (and taken away all at once) was just to get angry. God why did you bring us here? Why is Shon having a hard time getting into school? Why don't I have a better job (I worked at Chic FilA) I've got a college degree! And why oh why oh why won't you fix this fistula and let me go back to normal? I was miserable for a long time.
And now? Now the fistula was never fixed and I ended up having another big surgery and now I'll be different the rest of my life. I don't work at Chic Fil A any more but I have a job that does not challenge me or interest me. Shon is still in school and it is hard for him. We still live in his grandfather's house. But my perspective? Oh, its changed completely. I may be different but I'm only in the bathroom 4 times a day now - hooray! My job pays the bills and keeps me busy, I have excellent health insurance. Shon is in school and his grandfather pays for it, no student loans for us and we don't have to pay rent at the house, just utilities. We may be poor by American standards but I know that we are rich. We don't lack for anything that we need and God so often blesses us by giving us things that we DON'T need. When I started focusing on that instead of looking at everyone around us. Comparing myself to them and asking God why He didn't do some of the same things for us. It was like He just kept saying "My child, I have a plan for YOU and it is different from the plan I have for THEM."
So I am learning to be content. The first step was to let go of the dreams I had for Shon and I and what I thought would make the best life. The 2nd step was to stop comparing myself to everyone else around me. After all, what do I need that God has not supplied? And the 3rd step? Well thats the hard one..... keeping it up.
And I told myself when I started doing this that this was supposed to be about that, and I'm not going to write if I don't have something to say or something I needed to get off my chest. Too many blogs end up being ridiculous and mundane. This is not "A day in the life of Katie." But something has been on my heart a lot recently and while its not entirely health-related I did want to "get it out" so to speak.
I think one of the biggest things that God has been trying to teach me over the last 3 years is contentment. He stripped me of everything that I took pride and security in: My independence; we were quite independent in Chicago. My job; I took great pride in being a Media Producer at Wheaton college. My health, whats better than being young and healthy? My dreams of where I expected Shon and I to be when we'd been married 5 years. On our 5 year wedding anniversary (Aug 18, 2006) I was having an outpatient surgery to repair my fistula.
Of course my natural reaction to having everything taken away (and taken away all at once) was just to get angry. God why did you bring us here? Why is Shon having a hard time getting into school? Why don't I have a better job (I worked at Chic FilA) I've got a college degree! And why oh why oh why won't you fix this fistula and let me go back to normal? I was miserable for a long time.
And now? Now the fistula was never fixed and I ended up having another big surgery and now I'll be different the rest of my life. I don't work at Chic Fil A any more but I have a job that does not challenge me or interest me. Shon is still in school and it is hard for him. We still live in his grandfather's house. But my perspective? Oh, its changed completely. I may be different but I'm only in the bathroom 4 times a day now - hooray! My job pays the bills and keeps me busy, I have excellent health insurance. Shon is in school and his grandfather pays for it, no student loans for us and we don't have to pay rent at the house, just utilities. We may be poor by American standards but I know that we are rich. We don't lack for anything that we need and God so often blesses us by giving us things that we DON'T need. When I started focusing on that instead of looking at everyone around us. Comparing myself to them and asking God why He didn't do some of the same things for us. It was like He just kept saying "My child, I have a plan for YOU and it is different from the plan I have for THEM."
So I am learning to be content. The first step was to let go of the dreams I had for Shon and I and what I thought would make the best life. The 2nd step was to stop comparing myself to everyone else around me. After all, what do I need that God has not supplied? And the 3rd step? Well thats the hard one..... keeping it up.
Friday, September 28, 2007
Midnight ramblings
I've been struggling lately in figuring out just exactly what is going to be normal for me. I would say that about 80% of the time I feel really good. Really good like I've never had surgery and everything is great. Another 15% I feel so-so. Maybe my pouch is bothering me or I'm concerned about something (health-wise) or just feel out of sorts. That last 5% is feeling bad. Feeling bad like moderate abdominal pain or nausea, enough to make me leave work early or curtail my activities for the rest of the day. And every time I have one of those days where I feel bad I get worried, whats wrong with me now? Is this going to get worse? What if I throw up? What if the pain becomes severe? Am I going to end up in the ER again? What if I'm just being a big baby?
I don't trust myself, I want to be wise so when I feel badly I really take it easy (more so than I would've done 2 years ago). So many problems can be made worse by NOT going to the doctor. I've learned that lesson, now I've got to keep the pendulum from swinging in the other direction. I try and keep myself calm at least outwardly but I panic internally. I talk myself down. No matter what God's in control. But I don't want to spend any more nights in the hospital, the mere thought makes me want to burst into tears.
When I feel good I'm on top of the world and then when I don't feel so good I begin to despair. I'm praying constantly. O God, am I going to be sick the rest of my life? Really chronically ill where I can't hold down a job? Will I be healthy and well? Can I lead a really normal life again? Or will I float somewhere between? Right now I feel its the latter. If you were to ask me if I considered myself healthy more than likely I would respond "yes" but when I look back over the last month at how many days I left work early because I felt sick I get discouraged. Perhaps I'm not as healthy as I'd like to believe. Sometimes I think I'm overreacting to the pain I experience. But how can I measure? Who am I supposed to compare myself to? You? Thats hardly fair.
I don't want to make a huge deal out of the things I've been through and how my life has been altered but I can't ignore it, its impossible and unrealistic. Perhaps I just don't know how to manage living with a chronic illness. See, back when I was a kid I was told I had UC and once had my colon out I continued on happily cured. Now I'm told I have Crohns disease and to tell you the truth I've never really believed it. It seems ridiculous that the best doctors on the planet can tell me that and I think they really don't know what they're talking about. After all, I don't have the symptoms that Crohns patients have.... or do I? Perhaps I need to settle down and give it some thought because right now I just don't know what it all means.
I believe that God not just allowed but chose for these things to happen to me. I'm done being mad at Him for it (at least for now!) He's got this huge and amazing plan and I'm a part of it. I don't know what my part means, but I know that God only does GOOD things, everything He does is excellent. I want to be a part of that, even if my part is hard and scary and I don't know what is going to happen next. But I covet your prayers because this trust thing doesn't come naturally to me.
Pray that I would use discernment with regard to my health...... celebrate the good days and act and think wisely on the bad.
I don't trust myself, I want to be wise so when I feel badly I really take it easy (more so than I would've done 2 years ago). So many problems can be made worse by NOT going to the doctor. I've learned that lesson, now I've got to keep the pendulum from swinging in the other direction. I try and keep myself calm at least outwardly but I panic internally. I talk myself down. No matter what God's in control. But I don't want to spend any more nights in the hospital, the mere thought makes me want to burst into tears.
When I feel good I'm on top of the world and then when I don't feel so good I begin to despair. I'm praying constantly. O God, am I going to be sick the rest of my life? Really chronically ill where I can't hold down a job? Will I be healthy and well? Can I lead a really normal life again? Or will I float somewhere between? Right now I feel its the latter. If you were to ask me if I considered myself healthy more than likely I would respond "yes" but when I look back over the last month at how many days I left work early because I felt sick I get discouraged. Perhaps I'm not as healthy as I'd like to believe. Sometimes I think I'm overreacting to the pain I experience. But how can I measure? Who am I supposed to compare myself to? You? Thats hardly fair.
I don't want to make a huge deal out of the things I've been through and how my life has been altered but I can't ignore it, its impossible and unrealistic. Perhaps I just don't know how to manage living with a chronic illness. See, back when I was a kid I was told I had UC and once had my colon out I continued on happily cured. Now I'm told I have Crohns disease and to tell you the truth I've never really believed it. It seems ridiculous that the best doctors on the planet can tell me that and I think they really don't know what they're talking about. After all, I don't have the symptoms that Crohns patients have.... or do I? Perhaps I need to settle down and give it some thought because right now I just don't know what it all means.
I believe that God not just allowed but chose for these things to happen to me. I'm done being mad at Him for it (at least for now!) He's got this huge and amazing plan and I'm a part of it. I don't know what my part means, but I know that God only does GOOD things, everything He does is excellent. I want to be a part of that, even if my part is hard and scary and I don't know what is going to happen next. But I covet your prayers because this trust thing doesn't come naturally to me.
Pray that I would use discernment with regard to my health...... celebrate the good days and act and think wisely on the bad.
Thursday, September 13, 2007
Another Cleveland Clinic adventure
Do you ever feel like your life is surreal? Today as I was walking down to the break room at work to refresh my coffee I was just bouncing along happy with how the day was going and looking forward to lunch when I was struck forcibly with a memory from yesterday. Yesterday at the CC right about that exact same time I was flat on by back being worked on by my surgeon and watched intently by 3 nurses. It almost didn't seem real, except for the memory being incredibly accurate and intense and of course my familiarity and intimate knowledge of CC since I have spent so much time there. It occurred to me how strange it was that one day I'm subjected to the most bizarre and often painful procedures and the next day I just go on with life. I guess there's really no other way to do it.
Well, normally I head my adventures under a specific title of Colorectal or Gastro, but since I happened to have adventures in both yesterday I'll stick with the generic heading.
So I started the morning with an appointment to see the ET nurse (stoma nurse) about the mucocutaneous separation I have that is not really healing well. I was up there 6 weeks ago and was told at that point it wasn't deep (good) and to just pack it with a special powder when I change my dressing. Well it didn't really get better so I'm laying on the little exam table and the nurse and I chat about kock pouches etc and she decides to bring in a 2nd ET nurse who has a little more experience than her. This new ET nurse and I chat and discuss the situation, she measures the separation and then I point out this little bump at the top of the separation, she takes a good look and says she doesn't like the look of it and she wants to call in my surgeon since he is in the office. She mentions something along the lines of "he may want us to take it off with Nitrous" I think to myself, maybe she's talking about freezing it off, like they do for warts. But I don't want to ask because if I haven't mentioned it before, I have an overactive imagination. I just decide to wait.
In walks my surgeon who says hi then gets some gloves on and starts inspecting me. Then he asks for a probe. Well I know whats coming because last time anyone stuck a q-tip (probe) in there it hurt, and I wasn't disappointed this time either. So he starts poking around and I'm trying desperately not to flinch and the nurses are saying "don't hold your breath! take nice, slow deep breaths...." Then my surgeon announces that he thinks its an ulcer and we need to do something about it. He says he wants to inject a steroid and something else "Is that ok?"
What kind of question is that? Is that ok?? NO. Well, yes, "do what you need to do" is what I say but what I think is OH MY GOSH HE'S GOING TO STICK A NEEDLE IN MY BELLY who wants that? So off the nurse goes and Dr Remzi starts pacing the room deep in thought. He's normally very chatty with me so I find this new behavior a little alarming. The nurses try and distract me with questions and comments about how I like my k-pouch. The other nurse returns with the syringes which I try not to look at.
Dr Remzi says "I'm going to have to hurt you darling"
*sigh* "how bad?"
"I'm not going to lie to you, its going to hurt a bit, hang on to Vicki"
Vicki obligingly offers me her hand and I take a deep breath.
I don't know how many times he had to stick the needle in all I know is that he injected me in various locations around my stoma and not only did the needle hurt but also whatever was in the syringes too. I was gasping and squeezing the life out of that poor nurses hand and Dr Remzi (who is so very kind) tried to distract me by asking questions
how is your husband? fine
what does he do? he's in school
what's he studying? computer science
kids? no
how are all your parents? good, my in-laws just moved to Texas
do they like it? yes they can golf year-round
Finally it was over and I just lay there panting.
Dr Remzi "I'm sorry dear"
Its ok, I know you wouldn't hurt me if you didn't have to.
A follow-up is set up for Oct 31 - please God, let everything be healed by then, I don't want to repeat that
So then I just cover my poor stoma with a piece of gauze and shuffle off to the Endoscopy clinic to have my scope with my GI. Then when I was changing the gauze fell off and I discovered that it was covered in blood which oddly enough made me feel better. What I guess I mean is that seeing that blood helped me think I'm not too big a pansy. Then thankfully I had about 45 minutes to calm down and reflect that none of my other scopes have been very painful and that after all it would be interesting. I also contented myself by watching and listening to other patients and found myself thanking God that I no longer have a rectum and therefore will never again fear a colonoscopy, rectal exam or enema. I truly never ever believed I'd be thankful to not have a rectum but there you go, God works in mysterious ways!
My DOCTOR came back and pushed me down the hall towards the scoping room. I twisted around on my chariot to stare at him. "I've never been pushed by a doctor before!" I exclaimed.
Dr Shen laughes "Its good exercise"
"Wow I feel really special"
He laughed again and then we met up with the nurse who was no less shocked than I (I could tell by the incredulous look on her face).
So we get into the room.
Have a driver? No
No sedation then? Uh, I was under the impression I wouldn't need any (slightly disconcerted)
Well, some people can't handle it, I tend to humor my patients
Ah. Starting to wish I brought a driver.
So he starts to insert the scope. Its funny, I intubate 4 times a day every day but having that scope go in was something else. Probably because he's a little less gentle then me. Well it wasn't pleasant, then came the air. Geez I feel like a balloon. Remember those little animals in "Shrek" that they blow up into balloons? That was me. And I'm once again grunting and panting but of course completely riveted by watching my innards on on the big screen in HIGH DEFINITION. How cool is that?
The doctor is thrilled and even my untrained eye can tell that my pouch is disease free! Hooray! A disease-free pouch is what I've been praying for. Thanks God! We inspect the valve and then the terminal ileum (which means the last bit of small intestine that has not be transformed into a pouch). Everything is clean. "Now we take some biopsies" says Dr Shen
Cool, never bothered me before.....
"Open" says Dr Shen and we watch on TV and I see this little pincher pop out and plunge into my pouch HUH (I think I felt that)
"Close" then the little pincher yanks out a bit of intestine and pops back into its home ACK! I DID feel that! And I must have flinched because the nurse said "you felt that didn't you?"
"yes!"
"Open" out comes the pincher
"Close" out comes a piece of my intestine
ACK that was worse than last time! It literally felt like someone pinched my intestine. Can't explain it better than that
"OK, two more"
"open" I'm not watching anymore
"close" *gasp*
"open" Ok this isn't fun anymore
"close" thank God
"Ok we're done, scope out, you did great boss! But, if its too much, next time, bring a driver"
The thought occurred to me! But now I'm feeling better as he not only removed the scope but the majority of the air in my pouch too. And after all, it was relatively short-lived the bonus being I was alert enough to watch and ask question.
The long and the short of that visit is that my pouch is pristine - NO PILLS and NO DISEASE - Yea God! He wants me to continue on 6mp pretty much indefinitely. We want to keep the disease at bay and he doesn't want to risk a flare. I agree. When I decided I wanted to get the Kock pouch despite having crohns disease I knew I was signing up for long-term med use. But one med isn't bad and I don't have any side-effects so.
It was kinda a rough day. And I was so exhausted when I came home I went to bed before 9pm. Then I woke up cheery and well-rested and went to work! See what I mean about the surreal life?
Well, normally I head my adventures under a specific title of Colorectal or Gastro, but since I happened to have adventures in both yesterday I'll stick with the generic heading.
So I started the morning with an appointment to see the ET nurse (stoma nurse) about the mucocutaneous separation I have that is not really healing well. I was up there 6 weeks ago and was told at that point it wasn't deep (good) and to just pack it with a special powder when I change my dressing. Well it didn't really get better so I'm laying on the little exam table and the nurse and I chat about kock pouches etc and she decides to bring in a 2nd ET nurse who has a little more experience than her. This new ET nurse and I chat and discuss the situation, she measures the separation and then I point out this little bump at the top of the separation, she takes a good look and says she doesn't like the look of it and she wants to call in my surgeon since he is in the office. She mentions something along the lines of "he may want us to take it off with Nitrous" I think to myself, maybe she's talking about freezing it off, like they do for warts. But I don't want to ask because if I haven't mentioned it before, I have an overactive imagination. I just decide to wait.
In walks my surgeon who says hi then gets some gloves on and starts inspecting me. Then he asks for a probe. Well I know whats coming because last time anyone stuck a q-tip (probe) in there it hurt, and I wasn't disappointed this time either. So he starts poking around and I'm trying desperately not to flinch and the nurses are saying "don't hold your breath! take nice, slow deep breaths...." Then my surgeon announces that he thinks its an ulcer and we need to do something about it. He says he wants to inject a steroid and something else "Is that ok?"
What kind of question is that? Is that ok?? NO. Well, yes, "do what you need to do" is what I say but what I think is OH MY GOSH HE'S GOING TO STICK A NEEDLE IN MY BELLY who wants that? So off the nurse goes and Dr Remzi starts pacing the room deep in thought. He's normally very chatty with me so I find this new behavior a little alarming. The nurses try and distract me with questions and comments about how I like my k-pouch. The other nurse returns with the syringes which I try not to look at.
Dr Remzi says "I'm going to have to hurt you darling"
*sigh* "how bad?"
"I'm not going to lie to you, its going to hurt a bit, hang on to Vicki"
Vicki obligingly offers me her hand and I take a deep breath.
I don't know how many times he had to stick the needle in all I know is that he injected me in various locations around my stoma and not only did the needle hurt but also whatever was in the syringes too. I was gasping and squeezing the life out of that poor nurses hand and Dr Remzi (who is so very kind) tried to distract me by asking questions
how is your husband? fine
what does he do? he's in school
what's he studying? computer science
kids? no
how are all your parents? good, my in-laws just moved to Texas
do they like it? yes they can golf year-round
Finally it was over and I just lay there panting.
Dr Remzi "I'm sorry dear"
Its ok, I know you wouldn't hurt me if you didn't have to.
A follow-up is set up for Oct 31 - please God, let everything be healed by then, I don't want to repeat that
So then I just cover my poor stoma with a piece of gauze and shuffle off to the Endoscopy clinic to have my scope with my GI. Then when I was changing the gauze fell off and I discovered that it was covered in blood which oddly enough made me feel better. What I guess I mean is that seeing that blood helped me think I'm not too big a pansy. Then thankfully I had about 45 minutes to calm down and reflect that none of my other scopes have been very painful and that after all it would be interesting. I also contented myself by watching and listening to other patients and found myself thanking God that I no longer have a rectum and therefore will never again fear a colonoscopy, rectal exam or enema. I truly never ever believed I'd be thankful to not have a rectum but there you go, God works in mysterious ways!
My DOCTOR came back and pushed me down the hall towards the scoping room. I twisted around on my chariot to stare at him. "I've never been pushed by a doctor before!" I exclaimed.
Dr Shen laughes "Its good exercise"
"Wow I feel really special"
He laughed again and then we met up with the nurse who was no less shocked than I (I could tell by the incredulous look on her face).
So we get into the room.
Have a driver? No
No sedation then? Uh, I was under the impression I wouldn't need any (slightly disconcerted)
Well, some people can't handle it, I tend to humor my patients
Ah. Starting to wish I brought a driver.
So he starts to insert the scope. Its funny, I intubate 4 times a day every day but having that scope go in was something else. Probably because he's a little less gentle then me. Well it wasn't pleasant, then came the air. Geez I feel like a balloon. Remember those little animals in "Shrek" that they blow up into balloons? That was me. And I'm once again grunting and panting but of course completely riveted by watching my innards on on the big screen in HIGH DEFINITION. How cool is that?
The doctor is thrilled and even my untrained eye can tell that my pouch is disease free! Hooray! A disease-free pouch is what I've been praying for. Thanks God! We inspect the valve and then the terminal ileum (which means the last bit of small intestine that has not be transformed into a pouch). Everything is clean. "Now we take some biopsies" says Dr Shen
Cool, never bothered me before.....
"Open" says Dr Shen and we watch on TV and I see this little pincher pop out and plunge into my pouch HUH (I think I felt that)
"Close" then the little pincher yanks out a bit of intestine and pops back into its home ACK! I DID feel that! And I must have flinched because the nurse said "you felt that didn't you?"
"yes!"
"Open" out comes the pincher
"Close" out comes a piece of my intestine
ACK that was worse than last time! It literally felt like someone pinched my intestine. Can't explain it better than that
"OK, two more"
"open" I'm not watching anymore
"close" *gasp*
"open" Ok this isn't fun anymore
"close" thank God
"Ok we're done, scope out, you did great boss! But, if its too much, next time, bring a driver"
The thought occurred to me! But now I'm feeling better as he not only removed the scope but the majority of the air in my pouch too. And after all, it was relatively short-lived the bonus being I was alert enough to watch and ask question.
The long and the short of that visit is that my pouch is pristine - NO PILLS and NO DISEASE - Yea God! He wants me to continue on 6mp pretty much indefinitely. We want to keep the disease at bay and he doesn't want to risk a flare. I agree. When I decided I wanted to get the Kock pouch despite having crohns disease I knew I was signing up for long-term med use. But one med isn't bad and I don't have any side-effects so.
It was kinda a rough day. And I was so exhausted when I came home I went to bed before 9pm. Then I woke up cheery and well-rested and went to work! See what I mean about the surreal life?
Wednesday, August 29, 2007
Pills, Pouches and Problems - Oh my
Well I've started my week with a nice little conundrum. I was on my k-pouch webboard reading a post by a woman who had a couple of pills pop out of her stoma several hours after intubating. Firstly this is an issue because the kock pouch is a continent pouch which means its not good when stuff comes out when there is no catheter in the pouch (although we later determined that the pill probably was pulled into the valve by the cath and then just worked its way to the surface). Then 2 days later another one came out and then a few days after that, another one! Well this posting prompted a lot of speculation on what sort of pill it was and why it was coming out now. This lady said that she very rarely takes pills all her vitamins and calcium pills are chewable because pills don't dissolve well in the pouch.
Well this is news to me! Pills don't dissolve in the pouch?? Oh no and they can't exit because they won't fit through the catheter. And this of course prompted a couple of stories by other k-pouchers who were in the hospital when other people actually had to be opened up again and all these undigested pills scooped out of their pouches. One lady who takes a time-release medication for a very serious condition actually ended up overdosing because the pills all hung out in her pouch and released the medication at once. It made her very sick.
I am 3 1/2 months now with my k-pouch and how many pills have I taken? I started to count, well I've been on 6mp since June (thats 1 every day 2 months = 60) then I started my multivitamin and calcium supplement about 3 weeks ago (thats 2 every day = 40) oh and I take tylenol fairly frequently, probably 4-6 a week since I got off.... OH WAIT I took about 60 pain pills in my first month post-op!!!!
So now, as you can imagine, I'm freaking out. Geez I could have an intestinal pharmacy going on! So I do the only sensible thing I can and that is STOP taking any more pills (except 6mp) Thankfully I have a scope in 2 weeks so whatever is in there we’ll be able to get out quickly. So I email my GI asking about the whole pouch-pill-problem. To which he responds almost immediately (he's a great doctor) and here's what he says:
Hi, Katie, Yes, we do have patients with pill stuck there. There is a pt, I removed 224 tablets from the K pouch with endoscopy last year. Yes when we do the scope, if there are pills stuck, will remove them.
I'm not sure what my first thought was upon reading this email. Surely I never doubted that if there were pills in my pouch he would take them out. Relief of course in discovering that they can be removed via the stoma and I wouldn't need surgery if I do indeed have pills in my pouch. But what almost made me laugh out loud is that fact that it sounds as though he’s somewhat amused by the thought. Now I’m friends with this doctor (as good friends as patient/doctor can be) and I like him very much. I feel I know him and his personality pretty well so I’m not insulted or scared by the fact that he seems to find the situation funny in fact it does something to elevate my fears because if he were truly concerned he would’ve said so at once. However I’m still a little anxious because of the 6mp and wondering if there is a liquid form available or if I should start crushing my pills so I emailed him back my concerns. He replied again almost immediately (did I mention he’s a great doctor?)
Nope, Katie, most pills (medicines including 6MP) are quickly dissolved in upper small bowel. Only these dietary supplements often gave us trouble.
Now here it is about 24 hours later and I’m feeling better about it because it doesn’t seem likely that there will be many (if any) pills in my pouch because I haven’t taken a lot of supplements and hopefully they really are digested but I still can’t help pondering it all in my brain. And God has gifted me with a very great imagination that I sometimes wished I could put a bit of a blanket over.
And so this creates a small amount of trepidation for me and my up and coming scope. Will there be any pills in my pouch? If so, how many? How long will it take to get them out because it’s going to have to be one at a time if he’s taking them out through my stoma. And I can just envision myself on the gurney looking up into the TV monitor and watching as the Dr starts fishing them out. And I’m gonna be full of air and groaning because of it and the nurse will be saying “ok you’re doing great, breathe in… breathe out….” And I’ll be gripping the handrails and the Dr will be saying “65…66….67….68…. wow there are quite a few in here…..”
Good Grief. Imagination in overdrive!!!!!!!!!!!!!!!
Well this is news to me! Pills don't dissolve in the pouch?? Oh no and they can't exit because they won't fit through the catheter. And this of course prompted a couple of stories by other k-pouchers who were in the hospital when other people actually had to be opened up again and all these undigested pills scooped out of their pouches. One lady who takes a time-release medication for a very serious condition actually ended up overdosing because the pills all hung out in her pouch and released the medication at once. It made her very sick.
I am 3 1/2 months now with my k-pouch and how many pills have I taken? I started to count, well I've been on 6mp since June (thats 1 every day 2 months = 60) then I started my multivitamin and calcium supplement about 3 weeks ago (thats 2 every day = 40) oh and I take tylenol fairly frequently, probably 4-6 a week since I got off.... OH WAIT I took about 60 pain pills in my first month post-op!!!!
So now, as you can imagine, I'm freaking out. Geez I could have an intestinal pharmacy going on! So I do the only sensible thing I can and that is STOP taking any more pills (except 6mp) Thankfully I have a scope in 2 weeks so whatever is in there we’ll be able to get out quickly. So I email my GI asking about the whole pouch-pill-problem. To which he responds almost immediately (he's a great doctor) and here's what he says:
Hi, Katie, Yes, we do have patients with pill stuck there. There is a pt, I removed 224 tablets from the K pouch with endoscopy last year. Yes when we do the scope, if there are pills stuck, will remove them.
I'm not sure what my first thought was upon reading this email. Surely I never doubted that if there were pills in my pouch he would take them out. Relief of course in discovering that they can be removed via the stoma and I wouldn't need surgery if I do indeed have pills in my pouch. But what almost made me laugh out loud is that fact that it sounds as though he’s somewhat amused by the thought. Now I’m friends with this doctor (as good friends as patient/doctor can be) and I like him very much. I feel I know him and his personality pretty well so I’m not insulted or scared by the fact that he seems to find the situation funny in fact it does something to elevate my fears because if he were truly concerned he would’ve said so at once. However I’m still a little anxious because of the 6mp and wondering if there is a liquid form available or if I should start crushing my pills so I emailed him back my concerns. He replied again almost immediately (did I mention he’s a great doctor?)
Nope, Katie, most pills (medicines including 6MP) are quickly dissolved in upper small bowel. Only these dietary supplements often gave us trouble.
Now here it is about 24 hours later and I’m feeling better about it because it doesn’t seem likely that there will be many (if any) pills in my pouch because I haven’t taken a lot of supplements and hopefully they really are digested but I still can’t help pondering it all in my brain. And God has gifted me with a very great imagination that I sometimes wished I could put a bit of a blanket over.
And so this creates a small amount of trepidation for me and my up and coming scope. Will there be any pills in my pouch? If so, how many? How long will it take to get them out because it’s going to have to be one at a time if he’s taking them out through my stoma. And I can just envision myself on the gurney looking up into the TV monitor and watching as the Dr starts fishing them out. And I’m gonna be full of air and groaning because of it and the nurse will be saying “ok you’re doing great, breathe in… breathe out….” And I’ll be gripping the handrails and the Dr will be saying “65…66….67….68…. wow there are quite a few in here…..”
Good Grief. Imagination in overdrive!!!!!!!!!!!!!!!
Saturday, August 11, 2007
3 months
My k-pouch is officially 3 months old today! Hooray! Feza and I are doing great and I love having him in my life. Yes my stoma has a name and its a "he". You can call me strange but only because you probably don't know anyone else with a stoma. But, in the world of ostomies stoma naming is incredibly common, probably 80% of ostomates do it. Its a world apart from you, I know. If you'd like to sneak a peak into a day in the life of an ostomate than I encourage you to read some posts on this forum from the united ostomy association or how about this one on the j-pouch group
I know you've probably heard me say it a million times but for me it isn't old yet I'M INTUBATING 4 TIMES A DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That's the coolest thing in the whole world. Sure, you'll hear me grumble about Feza occasionally, its in the nature of a stoma to be troublesome and if he's anything like his namesake than he's got quite a sense of humor too. But really, he's a blessing and I'm so grateful to have him.
I am also 12 weeks post-op now and really feeling quite well. I still have a day or two here and there where I don't feel well, but I'd say about 85% of the time I feel great. It's nice to feel really healthy and well again too! I have most of my energy back now, though I haven't started exercising again (I used to walk 2 miles 4-5 days a week) I'm sure I'll start again soon once the weather lets up a bit.
In the interest of full disclosure I'll have to admit a couple of things that aren't going so rosy. #1 is I'm having some separation between my stoma and my skin, a kind of ravine (if you will) between my stoma and the rest of my stomach. The actual term is mucocutaneous separation. Well, about a month ago I went and saw the ET nurse (enterostomal - means special nurse trained in ostomies) and she said that I need to pack it with a special powder every day and if it gets worse I gotta see the doctor. Well, it hasn't gotten better and I really can't tell if its gotten worse or not. Some days I think yes and other days I think no. Whats a girl to do? I don't wanna make another trip to Cleveland just to have the Doc look at it and say "keep packing it with powder and if it gets worse call my office" No thanks. Its one thing to go to the nurse at CC and its another thing to go see the doctor. This is not a fear issue, please don't accuse me of that! This is a time issue. When I went to see the nurse I was at the clinic less than an hour - that's practically unheard of! But when you go to see the Doc, well, lets just say that your afternoon is shot. And if you need to go, well its worth it, but if not, well....... I'm just not convinced I need to go. And though I used to be the kind of person who would put off going to the doctor, I'm not that way anymore and I'll be on the look-out.
Well #2 problem. *sigh* Its my OTHER incision. My stomach has healed nicely, lovely really and my jp drain wound looks much better even at 12 weeks than I thought would ever be possible. But after sitting for 6-8 hours I'm still a bit sore and there's draining. Still. I was told it could go on "for a while" and its beginning to bother me. These types of wounds can be notorious for taking their time in healing and especially since I thought the draining would all be over after this surgery I find it very discouraging. My surgeon says its normal and I believe him, I'm just tired of it.
Oh and I just found out I'm going to have my pouch scoped Sept 12th. I called to try and schedule it for December and it wasn't ordered so I emailed Dr Shen to ask him if he still wanted me to have it. He said 'YES! Please call my office again tomorrow' But I didn't get the chance because they called me and they said OK you're all set for Sept 12 at 11am. I just said OK. But when I saw him in June he said 3-6 months and I said I was leaning toward 6 but apparently he was leaning toward 3. Oh well. It'll be interesting to watch anyways..... maybe I'll have another funny stoma-spewing poo story to tell (if you don't know what I'm talking about, check out my Adventures in Gastroenterology post from March).
So here I sit with my 3 month-old pouch, enjoying feeling GOOD and happy that it appears that my health problems are behind me! No matter what though, to God be the glory.
I know you've probably heard me say it a million times but for me it isn't old yet I'M INTUBATING 4 TIMES A DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That's the coolest thing in the whole world. Sure, you'll hear me grumble about Feza occasionally, its in the nature of a stoma to be troublesome and if he's anything like his namesake than he's got quite a sense of humor too. But really, he's a blessing and I'm so grateful to have him.
I am also 12 weeks post-op now and really feeling quite well. I still have a day or two here and there where I don't feel well, but I'd say about 85% of the time I feel great. It's nice to feel really healthy and well again too! I have most of my energy back now, though I haven't started exercising again (I used to walk 2 miles 4-5 days a week) I'm sure I'll start again soon once the weather lets up a bit.
In the interest of full disclosure I'll have to admit a couple of things that aren't going so rosy. #1 is I'm having some separation between my stoma and my skin, a kind of ravine (if you will) between my stoma and the rest of my stomach. The actual term is mucocutaneous separation. Well, about a month ago I went and saw the ET nurse (enterostomal - means special nurse trained in ostomies) and she said that I need to pack it with a special powder every day and if it gets worse I gotta see the doctor. Well, it hasn't gotten better and I really can't tell if its gotten worse or not. Some days I think yes and other days I think no. Whats a girl to do? I don't wanna make another trip to Cleveland just to have the Doc look at it and say "keep packing it with powder and if it gets worse call my office" No thanks. Its one thing to go to the nurse at CC and its another thing to go see the doctor. This is not a fear issue, please don't accuse me of that! This is a time issue. When I went to see the nurse I was at the clinic less than an hour - that's practically unheard of! But when you go to see the Doc, well, lets just say that your afternoon is shot. And if you need to go, well its worth it, but if not, well....... I'm just not convinced I need to go. And though I used to be the kind of person who would put off going to the doctor, I'm not that way anymore and I'll be on the look-out.
Well #2 problem. *sigh* Its my OTHER incision. My stomach has healed nicely, lovely really and my jp drain wound looks much better even at 12 weeks than I thought would ever be possible. But after sitting for 6-8 hours I'm still a bit sore and there's draining. Still. I was told it could go on "for a while" and its beginning to bother me. These types of wounds can be notorious for taking their time in healing and especially since I thought the draining would all be over after this surgery I find it very discouraging. My surgeon says its normal and I believe him, I'm just tired of it.
Oh and I just found out I'm going to have my pouch scoped Sept 12th. I called to try and schedule it for December and it wasn't ordered so I emailed Dr Shen to ask him if he still wanted me to have it. He said 'YES! Please call my office again tomorrow' But I didn't get the chance because they called me and they said OK you're all set for Sept 12 at 11am. I just said OK. But when I saw him in June he said 3-6 months and I said I was leaning toward 6 but apparently he was leaning toward 3. Oh well. It'll be interesting to watch anyways..... maybe I'll have another funny stoma-spewing poo story to tell (if you don't know what I'm talking about, check out my Adventures in Gastroenterology post from March).
So here I sit with my 3 month-old pouch, enjoying feeling GOOD and happy that it appears that my health problems are behind me! No matter what though, to God be the glory.
Monday, July 30, 2007
The Throne deposed!
This the end of the reign of the toilet in my life.
It sounds silly, I know. But thats only because you don't know what its like to have your whole life revolve around your access to the bathroom. Admittedly, my lot has been easier than those who suffer with ulcerative colitis or severe chrons disease. 20 trips to the bathroom a day is common if you're in a flare and some people go even more than that. But even 8-9 times a day sometimes urgently and getting up at least once every single night is rough too. I got so used to it sometimes I don't think I even really woke up. The bathroom was such a huge part of my life that toilet dreams were a weekly (sometimes nightly) occurrence. Dreams? Yeah. Of course plenty of the standard no tp, no clean seat, no privacy etc etc But some really crazy ones too lets see like.....
an outhouse guarded by wolves
a bunch of stalls at the top of a stadium with no doors
and my personal favorite - a toilet museum with no public restrooms
You don't forget dreams like those!
I stopped having them though - no more toilet nightmares, no more running to the bathroom right after a meal, no more fear of eating on a road-trip, no more hunting for a bathroom in stores, restaurants, malls, parks.
A couple of years ago I was out to lunch with some friends when one of them asked "where's the bathroom at I wonder?" and my other friend said "ask Katie, she always knows where the bathroom is." It's true, like I had an internal compass that pointed me in the right direction.
And the crazy thing is that this hold, this magnetic attraction that has kept such a hold of me almost my entire life I didn't even realize when that hold began to loosen. That is, until just a few days ago. I was on my way home from worship practice at church and just thinking about how things were going with my k-pouch and it hit me like a ton of bricks. I only intubated 4 times the day before. 7am, 3pm, 7pm and 10:30pm, that the other times I just went into the bathroom to pee. That knowledge began to settle down into my brain and well, I almost started to cry. Maybe that sounds silly to you, but then you don't know what its like to be a prisoner of the toilet and you can THANK GOD for that.
I'm released now. I love my k-pouch. Ask me if I care that I stick a tube in my belly -- I don't!!! I'm finally free. The throne is deposed and its control is broken.
Thank you, thank you, God (and thank you Dr Remzi too)
It sounds silly, I know. But thats only because you don't know what its like to have your whole life revolve around your access to the bathroom. Admittedly, my lot has been easier than those who suffer with ulcerative colitis or severe chrons disease. 20 trips to the bathroom a day is common if you're in a flare and some people go even more than that. But even 8-9 times a day sometimes urgently and getting up at least once every single night is rough too. I got so used to it sometimes I don't think I even really woke up. The bathroom was such a huge part of my life that toilet dreams were a weekly (sometimes nightly) occurrence. Dreams? Yeah. Of course plenty of the standard no tp, no clean seat, no privacy etc etc But some really crazy ones too lets see like.....
an outhouse guarded by wolves
a bunch of stalls at the top of a stadium with no doors
and my personal favorite - a toilet museum with no public restrooms
You don't forget dreams like those!
I stopped having them though - no more toilet nightmares, no more running to the bathroom right after a meal, no more fear of eating on a road-trip, no more hunting for a bathroom in stores, restaurants, malls, parks.
A couple of years ago I was out to lunch with some friends when one of them asked "where's the bathroom at I wonder?" and my other friend said "ask Katie, she always knows where the bathroom is." It's true, like I had an internal compass that pointed me in the right direction.
And the crazy thing is that this hold, this magnetic attraction that has kept such a hold of me almost my entire life I didn't even realize when that hold began to loosen. That is, until just a few days ago. I was on my way home from worship practice at church and just thinking about how things were going with my k-pouch and it hit me like a ton of bricks. I only intubated 4 times the day before. 7am, 3pm, 7pm and 10:30pm, that the other times I just went into the bathroom to pee. That knowledge began to settle down into my brain and well, I almost started to cry. Maybe that sounds silly to you, but then you don't know what its like to be a prisoner of the toilet and you can THANK GOD for that.
I'm released now. I love my k-pouch. Ask me if I care that I stick a tube in my belly -- I don't!!! I'm finally free. The throne is deposed and its control is broken.
Thank you, thank you, God (and thank you Dr Remzi too)
Thursday, July 12, 2007
Back to normal
I guess that's what I'll call this, my new "normal".
Once again I join the ranks of people who only see the doctor once or twice a year. I'm healthy enough to do just about everything that I used to, just still waiting for the stamina and energy to come all the way back. Its exciting for me and its strange all at the same time.
Strange because my new pouch requires a lot of micro-management for the time being. This next whole year will be an adjustment period as I try to work out my new "normal". My eating habits have changed drastically as have my bathroom habits. I'm still trying to figure out what foods I can eat and in what quantities. Fruits and veggies are still really low on the list because I just can't tolerate them. And right now I go to the bathroom because of what time is it, tell me if that's not strange. I'm still trying to get the hang of getting the tube in fairly quickly. Most of the time now, I can get it in in under 5 minutes and I guess that's good considering I've only been doing it 3 weeks. But since I'm a baby k-poucher little things still freak me out, a little blood here, and odd pain in my stomach.... these things will iron themselves out eventually.
I still haven't intubated at work, something I will be doing for the first time next week. I'm nervous and concerned and when I'm nervous and concerned my stomach muscles tighten and that makes it impossible to get the tube in. The longer it takes to get the tube in the more concerned I get. And the biggest tips for getting the tube in when it's difficult?? #1 Relax. Sure, I'll do that. #2 Put the cath in the freezer for 30 minutes. At work? No. #3 Lie on the floor while inserting the cath. Once again, at work? NO. I wouldn't lie down on my own bathroom floor. Back to #1 I guess.
If you think of me next week, pray that I can get the cath in easily.
What is my new normal? Well now it will include having a cath, bulb syringe and lubricant with me at all times. I'll keep a set in my car, in my purse, at home and at work. If I were to get food poisoning or some other emergency I'd have to intubate immediately and you can't exactly just stick a straw into your belly. I'm also considering getting one of those medical bracelets that alerts medical professionals about a severe allergy or medical condition because the type of internal pouch I have now is so rare that most people have never even heard of them. I need them to know who to contact about it if I'm unconscious.
And what does normal mean anyways?? The truth is I'll never be normal. No, I won't. I'm forever changed by the things I've been through, especially in the last 2 years. I'm not trying to make myself out to be something special or anything but the truth of the matter is I have NO idea what it is to walk through life with the most pressing concern at my next doctor's visit being my cholesterol. I don't know what it's like to have the bathroom be an afterthought because as long as I can remember access to the bathroom has always been my top priority.
I think I have an idea of what it must be like to be a survivor of some horrible accident. What I'm saying is, I've been through this huge and crazy ordeal and now its "over" (I hope) now I'm home and back at work and supposed to go back to doing everything I did before. The only thing is I don't feel the same. I feel shell-shocked I suppose. Like I just landed back on earth from some place else and no one around me has any idea what I've been through and no one is like me.
People say things to me like "don't obsess about my health conditions" or "don't let this problem define who you are". Are you kidding??? It's not just this last surgery that has shaped my personality and feelings, thoughts and actions its all the crap I went through on my way to having surgery. Like what? Well, in the last year and a half I've spent 21 days admitted to the hospital, that includes 3 surgeries, 4 outpatient procedures and 2 admissions through the ER. Twice while in the hospital I stopped breathing and had to be revived. I've had 1 lower GI x-ray series with barium, 2 CAT scans, 3 intestinal scopes (2 without sedation). I've had my stoma irrigated, I've had foley catheters and urinary stents and abdominal drains. I've had 3 five hour sessions of the drug Remicade, several dozen IVs and more blood draws than I can count. You can't go through all that and not come out different on the other side.
I can't pretend that all this didn't happen to me and I can't bury the past it has made me what I am. Right now though I kinda feel like a teenager trying to figure out who that is. I guess its kinda like coming out of the Army or prison. You've spent so much time just trying to survive its hard to go back to normal.
I guess I just need some time.
Once again I join the ranks of people who only see the doctor once or twice a year. I'm healthy enough to do just about everything that I used to, just still waiting for the stamina and energy to come all the way back. Its exciting for me and its strange all at the same time.
Strange because my new pouch requires a lot of micro-management for the time being. This next whole year will be an adjustment period as I try to work out my new "normal". My eating habits have changed drastically as have my bathroom habits. I'm still trying to figure out what foods I can eat and in what quantities. Fruits and veggies are still really low on the list because I just can't tolerate them. And right now I go to the bathroom because of what time is it, tell me if that's not strange. I'm still trying to get the hang of getting the tube in fairly quickly. Most of the time now, I can get it in in under 5 minutes and I guess that's good considering I've only been doing it 3 weeks. But since I'm a baby k-poucher little things still freak me out, a little blood here, and odd pain in my stomach.... these things will iron themselves out eventually.
I still haven't intubated at work, something I will be doing for the first time next week. I'm nervous and concerned and when I'm nervous and concerned my stomach muscles tighten and that makes it impossible to get the tube in. The longer it takes to get the tube in the more concerned I get. And the biggest tips for getting the tube in when it's difficult?? #1 Relax. Sure, I'll do that. #2 Put the cath in the freezer for 30 minutes. At work? No. #3 Lie on the floor while inserting the cath. Once again, at work? NO. I wouldn't lie down on my own bathroom floor. Back to #1 I guess.
If you think of me next week, pray that I can get the cath in easily.
What is my new normal? Well now it will include having a cath, bulb syringe and lubricant with me at all times. I'll keep a set in my car, in my purse, at home and at work. If I were to get food poisoning or some other emergency I'd have to intubate immediately and you can't exactly just stick a straw into your belly. I'm also considering getting one of those medical bracelets that alerts medical professionals about a severe allergy or medical condition because the type of internal pouch I have now is so rare that most people have never even heard of them. I need them to know who to contact about it if I'm unconscious.
And what does normal mean anyways?? The truth is I'll never be normal. No, I won't. I'm forever changed by the things I've been through, especially in the last 2 years. I'm not trying to make myself out to be something special or anything but the truth of the matter is I have NO idea what it is to walk through life with the most pressing concern at my next doctor's visit being my cholesterol. I don't know what it's like to have the bathroom be an afterthought because as long as I can remember access to the bathroom has always been my top priority.
I think I have an idea of what it must be like to be a survivor of some horrible accident. What I'm saying is, I've been through this huge and crazy ordeal and now its "over" (I hope) now I'm home and back at work and supposed to go back to doing everything I did before. The only thing is I don't feel the same. I feel shell-shocked I suppose. Like I just landed back on earth from some place else and no one around me has any idea what I've been through and no one is like me.
People say things to me like "don't obsess about my health conditions" or "don't let this problem define who you are". Are you kidding??? It's not just this last surgery that has shaped my personality and feelings, thoughts and actions its all the crap I went through on my way to having surgery. Like what? Well, in the last year and a half I've spent 21 days admitted to the hospital, that includes 3 surgeries, 4 outpatient procedures and 2 admissions through the ER. Twice while in the hospital I stopped breathing and had to be revived. I've had 1 lower GI x-ray series with barium, 2 CAT scans, 3 intestinal scopes (2 without sedation). I've had my stoma irrigated, I've had foley catheters and urinary stents and abdominal drains. I've had 3 five hour sessions of the drug Remicade, several dozen IVs and more blood draws than I can count. You can't go through all that and not come out different on the other side.
I can't pretend that all this didn't happen to me and I can't bury the past it has made me what I am. Right now though I kinda feel like a teenager trying to figure out who that is. I guess its kinda like coming out of the Army or prison. You've spent so much time just trying to survive its hard to go back to normal.
I guess I just need some time.
Friday, June 22, 2007
Post-OP
Well my post-op visit at Cleveland Clinic went great. The ET nurse taught me how to do the intubating thing and I did it twice with her there. Its kinda nerve-wracking to try and stick that tube in but she said I was doing a great job. Both my doctors were very pleased with how well I'm doing and said I don't have to go back for 6 months!!! I can hardly believe it, but of course I'm thrilled. So I'll be going back in December to see both my surgeon and my GI and I'll also be having a scope of my new k-pouch. Because I have crohns disease it is important to monitor the pouch to see if there are any ulcers forming. I will continue on 6mp (my immunosuppressive) at least until December. If my pouch is clean there is the possibility that they will discontinue that drug as well. I'm over the moon!!
So far, the intubating thing is going OK. I'm on a schedule of intubating every 2-3 hours for one week, then 3-4 hours for two weeks then 4-5 hours for one week. After that I'll probably only need to intubate every 5 hours. Most people with a k-pouch only intubate 4 times a day and I'm totally excited about that prospect. I've got a solid month of hard work in front of me trying to "grow" my pouch. I have to intubate at night too which makes sleeping kinda difficult and I'm a little grumpy....
Intubating is really kinda weird. My catheter is clear and has a diameter smaller than a pea. One end is open and the other end is "bullet nosed" with two holes along the sides. That's the end that I stick into my stoma and stuff comes out the open end. Putting the tube in can be a little tricky though. There is a valve which goes through the muscle wall of the abdomen and ends in a stoma. The valve shuts to prevent any kind of gas or stool from coming out so I am continent. So in putting the tube in I have to apply slight pressure and just kinda wait. I have to make sure my stomach muscles are relaxed or there's no way the tube will go in, take deep and slow breaths and slowly turn the catheter keeping the slight pressure until POP I feel the cath slide past the valve and into the pouch. Then I still have to work against the muscles and the intestine to get the tube in because it will naturally push the tubing out. Once the tube is in stuff starts to flow out.
Sometimes I sit on the toilet and point the cath into the bowl and sometimes I stand and point it into a little container used especially for this. If the stool is thick and won't flow through the cath then I have to squirt some water into me to thin it out. I have to use a water-soluble lubricant to help the cath go in. My ET nurse said lots of people just buy KY because its readily available and works great. Since I intubate several times a day I guess I'll have to buy it in bulk - imagine the check-out person's face!
I will have to keep a cath, lubricant and bulb syringe on me at all times so I can intubate if I need to. When my pouch gets full I get a sensation of fullness, only lower down than my stomach. Also, my k-pouch seems to rest on my bladder so that causes a little discomfort sometimes, but I can live with it. When I'm done intubating I just cover my stoma with a little patch and off I go! No bag, no tube no nothing - I'm FREE. I'm very very excited and ready for life to normalize.
This is my new stoma, his name is Feza and I'm very happy to have him! You can see my midline incision is healing well (it's 7 1/2 inches long) and that spot on my left side is where I had an abdominal drain after surgery, it's almost healed too. Tragically, my belly button was demolished in this surgery but I guess it's a small price to pay. I'm really happy with how well everything is going, and ready to get on with my life!
So far, the intubating thing is going OK. I'm on a schedule of intubating every 2-3 hours for one week, then 3-4 hours for two weeks then 4-5 hours for one week. After that I'll probably only need to intubate every 5 hours. Most people with a k-pouch only intubate 4 times a day and I'm totally excited about that prospect. I've got a solid month of hard work in front of me trying to "grow" my pouch. I have to intubate at night too which makes sleeping kinda difficult and I'm a little grumpy....
Intubating is really kinda weird. My catheter is clear and has a diameter smaller than a pea. One end is open and the other end is "bullet nosed" with two holes along the sides. That's the end that I stick into my stoma and stuff comes out the open end. Putting the tube in can be a little tricky though. There is a valve which goes through the muscle wall of the abdomen and ends in a stoma. The valve shuts to prevent any kind of gas or stool from coming out so I am continent. So in putting the tube in I have to apply slight pressure and just kinda wait. I have to make sure my stomach muscles are relaxed or there's no way the tube will go in, take deep and slow breaths and slowly turn the catheter keeping the slight pressure until POP I feel the cath slide past the valve and into the pouch. Then I still have to work against the muscles and the intestine to get the tube in because it will naturally push the tubing out. Once the tube is in stuff starts to flow out.
Sometimes I sit on the toilet and point the cath into the bowl and sometimes I stand and point it into a little container used especially for this. If the stool is thick and won't flow through the cath then I have to squirt some water into me to thin it out. I have to use a water-soluble lubricant to help the cath go in. My ET nurse said lots of people just buy KY because its readily available and works great. Since I intubate several times a day I guess I'll have to buy it in bulk - imagine the check-out person's face!I will have to keep a cath, lubricant and bulb syringe on me at all times so I can intubate if I need to. When my pouch gets full I get a sensation of fullness, only lower down than my stomach. Also, my k-pouch seems to rest on my bladder so that causes a little discomfort sometimes, but I can live with it. When I'm done intubating I just cover my stoma with a little patch and off I go! No bag, no tube no nothing - I'm FREE. I'm very very excited and ready for life to normalize.
This is my new stoma, his name is Feza and I'm very happy to have him! You can see my midline incision is healing well (it's 7 1/2 inches long) and that spot on my left side is where I had an abdominal drain after surgery, it's almost healed too. Tragically, my belly button was demolished in this surgery but I guess it's a small price to pay. I'm really happy with how well everything is going, and ready to get on with my life!
Wednesday, June 6, 2007
I have a tube in my belly
I do. I've had it in for almost 4 weeks now and I'm getting sick of it.
True, I knew I would have it, but I did think it was just going to be for 4 weeks, instead its going to be 5 1/2. A week and a half more may not seem like a long time to you, but believe me, when you have a tube sticking out of your belly every day you're very aware of it.
The tubing connects to a bag which collects my waste. It is NOT like a regular ileostomy. With an ileostomy the bag is attached to your side. This bag is at the end of a 3 foot tube and I drag it around the house with me. When I want to go on an outing I attach the catheter to a little leg bag that I can strap around my leg. The reason I have all this is so that my internal pouch (my new kock pouch) can heal from surgery before we ask it to grow and hold waste on a regular basis.
In two weeks I am going back up to Cleveland for my post-op visit with my surgeon. I'm very excited for this visit #1 because they will remove the constant drain and teach me how to intubate on my own. No more dragging a bag around. I will cover my stoma with a little patch and only put the tube in every few hours when I need to empty. Piece of cake! #2 Reason for being excited is I have reason to believe that after this visit I may have one more check up in a couple of months (maybe) but after that will probably only have yearly visits with my surgeon!
I love my surgeon, he's wonderful. Couldn't have a better surgeon, BUT, I'm ready to be done with my monthly visits to the Cleveland Clinic. Once this is over I can move on with my life! That's totally exciting for me. No more wondering what step to take next, what medications I'll be on and for how long, what my next exam will show, what the surgeon says can be done. After all this time it'll be just a yearly scoping of my pouch "Hey that pouch looks great - see you next year!" Could life be that good again??
True, I knew I would have it, but I did think it was just going to be for 4 weeks, instead its going to be 5 1/2. A week and a half more may not seem like a long time to you, but believe me, when you have a tube sticking out of your belly every day you're very aware of it.
The tubing connects to a bag which collects my waste. It is NOT like a regular ileostomy. With an ileostomy the bag is attached to your side. This bag is at the end of a 3 foot tube and I drag it around the house with me. When I want to go on an outing I attach the catheter to a little leg bag that I can strap around my leg. The reason I have all this is so that my internal pouch (my new kock pouch) can heal from surgery before we ask it to grow and hold waste on a regular basis.
In two weeks I am going back up to Cleveland for my post-op visit with my surgeon. I'm very excited for this visit #1 because they will remove the constant drain and teach me how to intubate on my own. No more dragging a bag around. I will cover my stoma with a little patch and only put the tube in every few hours when I need to empty. Piece of cake! #2 Reason for being excited is I have reason to believe that after this visit I may have one more check up in a couple of months (maybe) but after that will probably only have yearly visits with my surgeon!
I love my surgeon, he's wonderful. Couldn't have a better surgeon, BUT, I'm ready to be done with my monthly visits to the Cleveland Clinic. Once this is over I can move on with my life! That's totally exciting for me. No more wondering what step to take next, what medications I'll be on and for how long, what my next exam will show, what the surgeon says can be done. After all this time it'll be just a yearly scoping of my pouch "Hey that pouch looks great - see you next year!" Could life be that good again??
Saturday, May 26, 2007
Recovering
Its been just over 2 weeks since my surgery and I'm doing fairly well. Also I was discharged from the hospital one week ago today. Its so nice to be home!
I had my first outing since my surgery yesterday. I managed a trip to the chiropractor's office (those OR tables really mess you up) and mom and I went to Target too. I walk like I'm 80 years old so its a bit of a struggle getting around but it was nice to go outside and breathe some fresh air.
I'm still in quite a bit of pain and struggle with simple things like sitting down and getting up. Every day I am getting better and stronger though so I'm fairly happy with my progress. Eating is still a bit of a problem. All my food has to go through the catheter in my stomach which means it has to be chewed excessively. Anything that is thickening doesn't make it through the tube very well. I have to drink a lot of water and grape juice (helps thin stuff out) and I've never been the biggest fan of grape juice. Maybe I'll have to try some cran-grape. I still don't have very much of an appetite yet and nothing really appeals to me. These things just take time I think but my mom is concerned that I'm losing too much weight, I guess I'll have to up my pudding consumption!
I had my first outing since my surgery yesterday. I managed a trip to the chiropractor's office (those OR tables really mess you up) and mom and I went to Target too. I walk like I'm 80 years old so its a bit of a struggle getting around but it was nice to go outside and breathe some fresh air.
I'm still in quite a bit of pain and struggle with simple things like sitting down and getting up. Every day I am getting better and stronger though so I'm fairly happy with my progress. Eating is still a bit of a problem. All my food has to go through the catheter in my stomach which means it has to be chewed excessively. Anything that is thickening doesn't make it through the tube very well. I have to drink a lot of water and grape juice (helps thin stuff out) and I've never been the biggest fan of grape juice. Maybe I'll have to try some cran-grape. I still don't have very much of an appetite yet and nothing really appeals to me. These things just take time I think but my mom is concerned that I'm losing too much weight, I guess I'll have to up my pudding consumption!
Sunday, May 20, 2007
I'm an official Kock poucher!!!!
Well I'm home - finally.
9 days in the hospital, not fun at all and I'm really really glad to be home.
Surgery itself went really well, lasted 5 hours and my surgeon was extremely happy with how everything went. He said I had very few adhesions (scar tissue) which made the work much easier and I think he found less disease than he thought he would. I have my Kock pouch.
I did have unfortunately some terrible experiences in the hospital. I was woken up in the PACU (post anesthesia care unit) around noon because I had a reaction to some painkillers I was given immediately post-op. I stopped breathing - yes, it happened. Because of that I was given a medication to wake me up and keep me awake and also I was not allowed any pain medication for over a hour. This was an excruciating experience for me. Under normal circumstances I would not even wake up in the PACU and would sleep most of the day of my surgery. Because of the drugs though I was wide awake an fully aware of everything that was happening to me. The nurse who attended me was very unkind and unsympathetic. I will spare you the details except to say that I cried the entire time I was in there, It was a truly horrible experience.
Eventually I was allowed pain killers and given access to my pain pump but after being off pain killers it takes a while for them to bring the pain under control, it was probably 5pm before I was actually comfortable again.
I woke up with a catheter in my bladder and a stent (to prevent the formation of scar tissue), with an abdominal drain (to drain fluid out of the abdominal cavity and prevent sepsis), my catheter for my kock pouch and my IV.
The next couple of days in the hospital went well. I managed to walk to the bathroom get a little sponge bath, sit up in a chair etc etc. On Monday they took away my pain pump and started me on percocet. This was a mistake as it was inadequate pain control. With the pain pump I could dose myself every 6 minutes which I didn't usually need to unless I was getting up or moving around etc. With the percocet I was given pills every 4 hours and oxycondon in between time for "breakthrough" pain but it just couldn't bring anything under control. Tuesday and Wednesday were both horrible days for me. Between the pain and nausea and my small intestine still not being "awake" (meaning functioning) I was absolutely miserable. I was able to speak to my doctor about the inadequate pain control and they agreed to put me on Morphine since I was still not eating and I was also sent for a GI x-ray with contrast so they could see how the pouch was doing.
Also on Wednesday my IV infiltrated and a new one had to be started. They brought in a special nurse to do it who tried 3 times with no luck. Then they called in the IV SWAT team (not lying) and they did manage to get it started. Had my abdominal drain removed on Wednesday. It was sutured to my skin so they cut those and then pulled it out. That hurt more than I can put into words. I was glad shon was there to hold my hand as I believe I almost crushed his fingers and glad my mom was not there to hear me.
Thursday was my turn-around day. I actually got some sleep wednesday night (which let me tell you, in a hospital is an amazing feet) I started taking longer walks down the hallway. By Thursday night I was actually hungry - I went 7 days with no food. Friday I was allowed soft foods and was told if the pouch kept functioning and I had no nausea I could go home on Saturday.
No more nausea and lots of walking and sitting up and I got sent home yesterday and arrived around 3pm. I still have my constant drain in my k-pouch and that will stay in for the next 4 weeks until I go see my surgeon. I've been taught how to take care of it though and I feel fairly comfortable with the whole thing.
This was probably the worst hospital experience that I've ever had, mostly due to inadequate pain control. The care I received over-all was quite good. I had some excellent nurses and some that were just so-so. I can't thank God enough for allowing my mom to be here to help take care of me. Besides keeping me company and helping spare Shon some of the burden its just nice to have my mom here. Shon has been truly amazing. I have been blessed beyond measure to have him as my husband. I sat trembling in the bathroom naked, cold, in pain and tired day after day as he patiently and tenderly got me cleaned up. Not grossed out by dried blood and mucus, by drains and poop and my inability to do anything for myself. He was always by my side when he could be holding my hand and encouraging me. Telling me how proud he was of me. Thank you God, for giving me Shon.
And thank you all for your prayers. As hard as this experience has been I felt God's presence and encouragement and I know how much your prayers helped my family as well.
I'm Home.
9 days in the hospital, not fun at all and I'm really really glad to be home.
Surgery itself went really well, lasted 5 hours and my surgeon was extremely happy with how everything went. He said I had very few adhesions (scar tissue) which made the work much easier and I think he found less disease than he thought he would. I have my Kock pouch.
I did have unfortunately some terrible experiences in the hospital. I was woken up in the PACU (post anesthesia care unit) around noon because I had a reaction to some painkillers I was given immediately post-op. I stopped breathing - yes, it happened. Because of that I was given a medication to wake me up and keep me awake and also I was not allowed any pain medication for over a hour. This was an excruciating experience for me. Under normal circumstances I would not even wake up in the PACU and would sleep most of the day of my surgery. Because of the drugs though I was wide awake an fully aware of everything that was happening to me. The nurse who attended me was very unkind and unsympathetic. I will spare you the details except to say that I cried the entire time I was in there, It was a truly horrible experience.
Eventually I was allowed pain killers and given access to my pain pump but after being off pain killers it takes a while for them to bring the pain under control, it was probably 5pm before I was actually comfortable again.
I woke up with a catheter in my bladder and a stent (to prevent the formation of scar tissue), with an abdominal drain (to drain fluid out of the abdominal cavity and prevent sepsis), my catheter for my kock pouch and my IV.
The next couple of days in the hospital went well. I managed to walk to the bathroom get a little sponge bath, sit up in a chair etc etc. On Monday they took away my pain pump and started me on percocet. This was a mistake as it was inadequate pain control. With the pain pump I could dose myself every 6 minutes which I didn't usually need to unless I was getting up or moving around etc. With the percocet I was given pills every 4 hours and oxycondon in between time for "breakthrough" pain but it just couldn't bring anything under control. Tuesday and Wednesday were both horrible days for me. Between the pain and nausea and my small intestine still not being "awake" (meaning functioning) I was absolutely miserable. I was able to speak to my doctor about the inadequate pain control and they agreed to put me on Morphine since I was still not eating and I was also sent for a GI x-ray with contrast so they could see how the pouch was doing.
Also on Wednesday my IV infiltrated and a new one had to be started. They brought in a special nurse to do it who tried 3 times with no luck. Then they called in the IV SWAT team (not lying) and they did manage to get it started. Had my abdominal drain removed on Wednesday. It was sutured to my skin so they cut those and then pulled it out. That hurt more than I can put into words. I was glad shon was there to hold my hand as I believe I almost crushed his fingers and glad my mom was not there to hear me.
Thursday was my turn-around day. I actually got some sleep wednesday night (which let me tell you, in a hospital is an amazing feet) I started taking longer walks down the hallway. By Thursday night I was actually hungry - I went 7 days with no food. Friday I was allowed soft foods and was told if the pouch kept functioning and I had no nausea I could go home on Saturday.
No more nausea and lots of walking and sitting up and I got sent home yesterday and arrived around 3pm. I still have my constant drain in my k-pouch and that will stay in for the next 4 weeks until I go see my surgeon. I've been taught how to take care of it though and I feel fairly comfortable with the whole thing.
This was probably the worst hospital experience that I've ever had, mostly due to inadequate pain control. The care I received over-all was quite good. I had some excellent nurses and some that were just so-so. I can't thank God enough for allowing my mom to be here to help take care of me. Besides keeping me company and helping spare Shon some of the burden its just nice to have my mom here. Shon has been truly amazing. I have been blessed beyond measure to have him as my husband. I sat trembling in the bathroom naked, cold, in pain and tired day after day as he patiently and tenderly got me cleaned up. Not grossed out by dried blood and mucus, by drains and poop and my inability to do anything for myself. He was always by my side when he could be holding my hand and encouraging me. Telling me how proud he was of me. Thank you God, for giving me Shon.
And thank you all for your prayers. As hard as this experience has been I felt God's presence and encouragement and I know how much your prayers helped my family as well.
I'm Home.
Thursday, May 10, 2007
K Day
Surgery is at 7am tomorrow and I have to be at the Cleveland Clinic at 5:30am *eek* I'm the first patient of the day for both surgeons so that's good. Please pray that they get my IV started right away.
I'm on clear liquids from 4pm on today and nothing at all after midnight.
I gotta go finish packing.
I'm on clear liquids from 4pm on today and nothing at all after midnight.
I gotta go finish packing.
Sunday, May 6, 2007
Pre-Op Day
Tomorrow is my big day of pre-op work-up at the Cleveland Clinic.
My schedule?
9:45 Lab
10:15 Internal Medicine nurse
10:30 Internal Medicine Doctor
12:10 Pace Clinic Preoperative Clearance
1:00 Pace Clinic Admitting Interview
2:00 Dr Remzi - Colorectal surgery
2:40 Stoma Therapy
3:00 Nurse Patient Education
The lab work will be fun, they'll draw something like 4 vials of blood - here's hoping they get a good vein on the first stick. The internal medicine nurse and doctor is basically to make sure I'm healthy enough for major surgery. Funny huh? At some point, you have to be sick enough and yet on the other hand.... The Pace clinic stuff is to get all the paperwork out of the way. Then I go see my surgeon then I have to meet with the stoma nurses as I'll be getting a new stoma so they'll talk with me about placement and how to care for it. The last bit is all the rundown you get before surgery, nothing to eat or drink after midnight (thankfully because I'm already without a colon I won't have any nasty bowel prep to drink), no jewelry, makeup, hairspray, deodorant (Yuck) basically, come as God made you cause they can't have it on the OR.
FRIDAY is the day.
After waiting for so long its hard to believe its almost here. I hope these last few days go rather quickly because I'm just ready to get it over with. It is true what they say that waiting is the hardest part. The imagination can be cruel.
The Cleveland Clinic surgical center is like an airport.
Not kidding. The family waiting area is huge and it has big flat screen monitors on the walls. Each family gets a little beeper-type device. Like they give you at restaurants to let you know your table is ready. The family gets paged when there is a change in your status. And every patient has a code that the family can look up on the monitors and it tells them whats happening. For instance it can say something like HK102CR (Harsh, Kathryn 102 ColoRectal) and then my location Preop, in transit, Surgery, Recovery.... Delayed - see what I mean about the airport??
Once you get checked in and they call you to the pre-op area you head into another building and that's where the fun begins. Once I'm gowned and prepped for surgery my family can come back and stay with me until they take me away. We usually just look at each other and pray. What is there to talk about at that point?
Then they come get me and I get wheeled into yet another building. And at this point I don't have my glasses so there isn't much to tell you cause I can't see it very well! I know there is at least 30 operating rooms and they park me outside of mine until they're ready to bring me in. The anesthesiologist will come out and talk to me and then my surgeon will come say hi and "Don't worry, I'll take good care of you"
Lets just get it over with.
My schedule?
9:45 Lab
10:15 Internal Medicine nurse
10:30 Internal Medicine Doctor
12:10 Pace Clinic Preoperative Clearance
1:00 Pace Clinic Admitting Interview
2:00 Dr Remzi - Colorectal surgery
2:40 Stoma Therapy
3:00 Nurse Patient Education
The lab work will be fun, they'll draw something like 4 vials of blood - here's hoping they get a good vein on the first stick. The internal medicine nurse and doctor is basically to make sure I'm healthy enough for major surgery. Funny huh? At some point, you have to be sick enough and yet on the other hand.... The Pace clinic stuff is to get all the paperwork out of the way. Then I go see my surgeon then I have to meet with the stoma nurses as I'll be getting a new stoma so they'll talk with me about placement and how to care for it. The last bit is all the rundown you get before surgery, nothing to eat or drink after midnight (thankfully because I'm already without a colon I won't have any nasty bowel prep to drink), no jewelry, makeup, hairspray, deodorant (Yuck) basically, come as God made you cause they can't have it on the OR.
FRIDAY is the day.
After waiting for so long its hard to believe its almost here. I hope these last few days go rather quickly because I'm just ready to get it over with. It is true what they say that waiting is the hardest part. The imagination can be cruel.
The Cleveland Clinic surgical center is like an airport.
Not kidding. The family waiting area is huge and it has big flat screen monitors on the walls. Each family gets a little beeper-type device. Like they give you at restaurants to let you know your table is ready. The family gets paged when there is a change in your status. And every patient has a code that the family can look up on the monitors and it tells them whats happening. For instance it can say something like HK102CR (Harsh, Kathryn 102 ColoRectal) and then my location Preop, in transit, Surgery, Recovery.... Delayed - see what I mean about the airport??
Once you get checked in and they call you to the pre-op area you head into another building and that's where the fun begins. Once I'm gowned and prepped for surgery my family can come back and stay with me until they take me away. We usually just look at each other and pray. What is there to talk about at that point?
Then they come get me and I get wheeled into yet another building. And at this point I don't have my glasses so there isn't much to tell you cause I can't see it very well! I know there is at least 30 operating rooms and they park me outside of mine until they're ready to bring me in. The anesthesiologist will come out and talk to me and then my surgeon will come say hi and "Don't worry, I'll take good care of you"
Lets just get it over with.
Tuesday, April 24, 2007
What are you so scared of?
A reasonable question.
Not surgery itself. No, I'm not - really!
I've had too much surgery to be easily intimidated and having the best colorectal surgeon in the world certainly eases many concerns.
Yes, I'll get a little antsy when they wheel me into the OR. There's no place in the world quite like an operating room. Its FREEZING in there, like the inside of a refrigerater. Everyone is covered in masks and hats and gloves and there are a lot of lights and machines. Someone is invariably laying out sanitized tools onto a table. Then they help me scootch onto the operating table, its narrow and hard and I lay my head on a folded up towel and when they start to untie my gown and place electrodes all over my body it can be a little unnerving because it hits then, they're going to take out a knife and gut me like a fish.
I take a deep breath
A song from my childhood camp comes to mind "How can I fear? Jesus is near. He ever watches over me. Worries all cease, He gives me peace, how can I fear, with Jesus."
They start the drugs and lights out, so thats not the really scary part.
Its what I'll wake up with that I'm really scared about. They're going to give me a Kock pouch - probably. Hopefully. But nothing in the OR is 100% sure until they open you up and take a look. How many adhesions do I have? (adhesions are scar tissue build-up from previous surgeries) How much disease is in my pouch? How does the rest of my small intestine look? How much trouble will they have removing my j-pouch? What if they get in there and decide they can't do the Kock pouch and they have already removed my sphincter muscles and I have no alternantive but permanent end ileostomy? I don't want that.
That is what really terrifies me. And I don't want to sound rude but please don't say something like "God will never give you more than you can handle" - I think that's nonsense. What would I need God for if I could handle stuff on my own?? Don't say "God works out everything for our good." Actually, I think God works everything out according to HIS perfect will, which may involve my personal suffering. Please don't tell me "God will take care of you" because if you read my post "Not a tame Lion" then you know that I believe God plans specific events into our lives - even ones we consider bad. Not MY idea of being "taken care of" but I admit that His ultimate plan is worth more than my comfort so I'll do my best to live with that.
So What can you say to me??
I'll be praying for you!!! Praying that God will give you GRACE, STRENGTH, and COURAGE to face WHATEVER is ahead of you. No matter what I'm here for you and I love you!
Thats really what I need more than anything else -- your prayers.
Yes, PLEASE pray the surgery goes well, that I get my Kock pouch and have a quick recovery but also please, please pray the above because some days grace, strength and courage are in short supply.
Not surgery itself. No, I'm not - really!
I've had too much surgery to be easily intimidated and having the best colorectal surgeon in the world certainly eases many concerns.
Yes, I'll get a little antsy when they wheel me into the OR. There's no place in the world quite like an operating room. Its FREEZING in there, like the inside of a refrigerater. Everyone is covered in masks and hats and gloves and there are a lot of lights and machines. Someone is invariably laying out sanitized tools onto a table. Then they help me scootch onto the operating table, its narrow and hard and I lay my head on a folded up towel and when they start to untie my gown and place electrodes all over my body it can be a little unnerving because it hits then, they're going to take out a knife and gut me like a fish.
I take a deep breath
A song from my childhood camp comes to mind "How can I fear? Jesus is near. He ever watches over me. Worries all cease, He gives me peace, how can I fear, with Jesus."
They start the drugs and lights out, so thats not the really scary part.
Its what I'll wake up with that I'm really scared about. They're going to give me a Kock pouch - probably. Hopefully. But nothing in the OR is 100% sure until they open you up and take a look. How many adhesions do I have? (adhesions are scar tissue build-up from previous surgeries) How much disease is in my pouch? How does the rest of my small intestine look? How much trouble will they have removing my j-pouch? What if they get in there and decide they can't do the Kock pouch and they have already removed my sphincter muscles and I have no alternantive but permanent end ileostomy? I don't want that.
That is what really terrifies me. And I don't want to sound rude but please don't say something like "God will never give you more than you can handle" - I think that's nonsense. What would I need God for if I could handle stuff on my own?? Don't say "God works out everything for our good." Actually, I think God works everything out according to HIS perfect will, which may involve my personal suffering. Please don't tell me "God will take care of you" because if you read my post "Not a tame Lion" then you know that I believe God plans specific events into our lives - even ones we consider bad. Not MY idea of being "taken care of" but I admit that His ultimate plan is worth more than my comfort so I'll do my best to live with that.
So What can you say to me??
I'll be praying for you!!! Praying that God will give you GRACE, STRENGTH, and COURAGE to face WHATEVER is ahead of you. No matter what I'm here for you and I love you!
Thats really what I need more than anything else -- your prayers.
Yes, PLEASE pray the surgery goes well, that I get my Kock pouch and have a quick recovery but also please, please pray the above because some days grace, strength and courage are in short supply.
Thursday, April 19, 2007
3 weeks! And the countdown continues...
Well here we are just 3 weeks away now and many of you have been asking me how I feel about the surgery and if I'm nervous or scared. That's a more complicated question then you might think. I am scared, but I wish it was tomorrow. Waiting is very difficult not only because it gives me time to think over everything I can possibly think of but also because my symptoms are getting worse. I'm just ready to get it over with. I really try not to let my mind dwell on what is ahead, it is easier for me to get through the things I have to get through if I don't sit there and let my imagination go crazy beforehand. And I'm starting to have dreams about it and unfortunately I've been in the OR a few too many times. My dreams are incredibly realistic and terrifying. Part of the problem is that I know all too well what I've got to face. Sometimes ignorance is bliss.
Much of my trepidation lies with the actual surgery and the complications associated with that, but the rest of it is focused upon the remaining days I'll be in the hospital after surgery. I'll tell you about that part now.
First off, I have terrible veins. What does that mean? It means that on any given day getting blood drawn or getting an IV started can be torture. A lot of people with a chronic illness, who spend a lot of time in the hospital get bad veins, it comes from having needles poked in them too often. My veins are very small, they roll and hide and on the worst days it doesn't even look like I have veins. In practical terms it means that lab workers and nurses and even anesthesiologists put on the tourniquet and look and slap and look and slap and look and change arms and repeat. Then they stick me and about 90% of the time the vein disappears and that's when the digging begins. On a good day, they can get me in one stick. On my worst day it took 4 tries to get one started. And once they've tried 2-3 times and don't get it, even the nurses start to panic. It can be quite painful and it is incredibly stressful. I think of myself as a fairly brave girl. I have had to endure well more than my fair share of painful procedures but there isn't much that will send the tears streaming much quicker than me realizing that the 2nd stick didn't work.
What else scares me? Post surgical pain. This will be my 4th major abdominal surgery so I know what I can expect. I'll have good pain management, and that really is what it is: "management" because with a 6" incision running down your belly you can forget tying your shoes, bending, sitting etc without discomfort. But the REAL pain comes when you laugh, cough or sneeze. These are very violent actions and your abdominal muscles are involved a lot more than you might think.
Lastly, some final snippets of hospital life
The Good:
Room Service
No work
Can nap as much as you want
Can watch TV all day long
Morphine
The Bad:
Jello
Snoring roommates
Hospital gowns
Hourly vitals checks
Beeping IV poles (especially at 2am)
General hospital noisiness
5am 1st rounds
7am 2nd rounds
Circulation stockings
Incentive Spirometer a device they make patients blow into it 10 times an hour to fully inflate their lungs and help prevent pneumonia
Constant parade of nurses aides, nurses, residents, fellows and doctors inspecting you and your parts, incisions, bandages and drains
The UGLY:
Catheters and drains
Heparin shots an anti-coagulant injected under the skin to help prevent blood clots , it burns like crazy and it leaves big bruises, its done every 8 hours.
3am blood draws
IVs just remember that I have terrible veins...
Infiltrating IVs this is when the vein basically breaks and the medicine starts going into the surrounding muscle and tissue and means you have to have a new IV started.
NG tube a tube that is sometimes used after major abdominal surgery it goes in through the nose, down the esophagus and into the stomach to help keep it empty.
Now you know what I'm up against. I appreciate your prayers!
Much of my trepidation lies with the actual surgery and the complications associated with that, but the rest of it is focused upon the remaining days I'll be in the hospital after surgery. I'll tell you about that part now.
First off, I have terrible veins. What does that mean? It means that on any given day getting blood drawn or getting an IV started can be torture. A lot of people with a chronic illness, who spend a lot of time in the hospital get bad veins, it comes from having needles poked in them too often. My veins are very small, they roll and hide and on the worst days it doesn't even look like I have veins. In practical terms it means that lab workers and nurses and even anesthesiologists put on the tourniquet and look and slap and look and slap and look and change arms and repeat. Then they stick me and about 90% of the time the vein disappears and that's when the digging begins. On a good day, they can get me in one stick. On my worst day it took 4 tries to get one started. And once they've tried 2-3 times and don't get it, even the nurses start to panic. It can be quite painful and it is incredibly stressful. I think of myself as a fairly brave girl. I have had to endure well more than my fair share of painful procedures but there isn't much that will send the tears streaming much quicker than me realizing that the 2nd stick didn't work.
What else scares me? Post surgical pain. This will be my 4th major abdominal surgery so I know what I can expect. I'll have good pain management, and that really is what it is: "management" because with a 6" incision running down your belly you can forget tying your shoes, bending, sitting etc without discomfort. But the REAL pain comes when you laugh, cough or sneeze. These are very violent actions and your abdominal muscles are involved a lot more than you might think.
Lastly, some final snippets of hospital life
The Good:
Room Service
No work
Can nap as much as you want
Can watch TV all day long
Morphine
The Bad:
Jello
Snoring roommates
Hospital gowns
Hourly vitals checks
Beeping IV poles (especially at 2am)
General hospital noisiness
5am 1st rounds
7am 2nd rounds
Circulation stockings
Incentive Spirometer a device they make patients blow into it 10 times an hour to fully inflate their lungs and help prevent pneumonia
Constant parade of nurses aides, nurses, residents, fellows and doctors inspecting you and your parts, incisions, bandages and drains
The UGLY:
Catheters and drains
Heparin shots an anti-coagulant injected under the skin to help prevent blood clots , it burns like crazy and it leaves big bruises, its done every 8 hours.
3am blood draws
IVs just remember that I have terrible veins...
Infiltrating IVs this is when the vein basically breaks and the medicine starts going into the surrounding muscle and tissue and means you have to have a new IV started.
NG tube a tube that is sometimes used after major abdominal surgery it goes in through the nose, down the esophagus and into the stomach to help keep it empty.
Now you know what I'm up against. I appreciate your prayers!
Wednesday, April 11, 2007
The long-awaited date
May 11, 2007
Thats it. The day I'm having surgery.... again.
I've been waiting for a while now to know for sure because there were some schedualing difficulties. But I've been given the official word now, so there you go.
History: My surgeon has been telling me since November that it was time to stop trying to fix the fistula and face the facts that it cannot be fixed and I need to move on with my life. He did want me to get a 2nd opinion from the Chief of colorectal surgery, Dr Fazio, just so we would both feel that we gave this 100% and not have any questions. So in January I had a consult with Dr Fazio who agreed with Dr Remzi (I expected nothing less) and I eventually came to agree with them both. In February we talked about what we could to to alleviate my present distress, in March we agreed and got to work setting a surgery date and in April I got my date set.
My options were presented as follows:
1 - Leave me as I am - Not acceptable to me as I am having horrible draining 24/7
2 - Redo j-pouch - Not presented as a good option with likelihood of poor pouch function, chance of fistula recurrence and likelihood that the crohns disease would spread to my new pouch.
3 - Permanent end ileostomy - presented as BEST option because conserves the most bowel. However this option is very unattractive to me as I hate the appliance I have to wear all the time, and the thought of having it for the rest of my life is very difficult.
4 - Kock pouch - called a "continent ileostomy" kinda a hybrid of ileostomy and j-pouch, it is an internal pouch made from the small intestine and I would still have a stoma, however there is no external appliance. The pouch is emptied with a catheter. Check out my posting on the K-pouch for all the details. The pro of this being that the pouch is internal and there is no need for an appliance, I would just wear a patch to cover the stoma. The cons are #1 because it is made from my small intestine there is a chance that the crohns disease could spread to my new pouch. #2 The surgery is difficult and has a very high complication and re-operation rate.
After much prayerful consideration and talking with my family and doing a LOT of thinking I have opted to go with the kock pouch. It will bring me the closest to "normal" that I can ever be again since living with the fistula is out of the question. I will be having my j-pouch removed along with the sphincter muscles and remaining rectal cuff and my rear-end will be sewn up tight. As you can imagine this was a very difficult decision for me to make as there is no going back and it will be an emotionally and physically painful experience.
As I mentioned above the kock pouch is a very difficult procedure with a high complication rate such that there are only about a dozen surgeons in the US that do them. My surgeon, Dr Remzi is one of them and the chief of colorectal surgery Dr Fazio is famous for his skill at doing them (has done over 500). Part of the problem in getting my surgery scheduled was that they will be doing this part of the surgery together and its difficult to get two very busy surgeons together at the same time. I feel confident that they will do a fantastic job. As you have no doubt gathered, The k-pouch is a very big surgery and also having my j-pouch removed is also a major procedure so you can imagine that I am nervous. As much surgery as I've had its still not easy to be wheeled into the OR.
Here's the nitty-gritty:
Surgery is expected to last 4-6 hours
I'll have a 5-8 inch incision.
I will be hospitalized 5-7 days
My recovery period is 6-8 weeks
My diet will be severely limited for several months and there will be a huge period of adjustment as I get accustomed to my new alternative plumbing situation. Also, having all the sphincter muscles removed and that area sewn up will be painful for quite some time. I would very much appreciate your prayers as I try and prepare myself physically, emotionally and mentally for the challenges ahead.
My mom is coming home from Thailand to be with me and help Shon take care of me, and I would appreciate your prayers for her too as the travel time is in the range of 36 hours.
What else can you pray for?
That the surgery will go well with no major complications
That I have a speedy recovery!
That my mom and I won't drive each other crazy :)
That I'll adjust to my new pouch well.
That God will provide for our needs while I'm out of work
That God will comfort my family and provide them with peace - especially Shon. As hard as it is for me to go through all this, I know it is harder on my family.
On a side note:
Last February I had surgery to repair the fistula and give me a "temporary" ileostomy. The day after surgery, after I had been out of bed a little while, I laid down to take a nap and shortly thereafter stopped breathing - I had a severe allergic reaction to some medication that I was on. Fortunately the nurse came in to check on me and noticed that I was unresponsive, she called a "code blue" and the crash team came in and revived me. I do not know how long I was unconscious. My family was forced out of the room, a policeman was stationed outside and a pastor was sent up to talk to them. Thankfully they were able to revive me without any of the serious or invasive measures such as intubating or paddles but I woke up with a dozen doctors and nurses working on me, with an oxygen mask on my face, and with monitors all over my body. It was a terrifying experience for both me and my family
They THINK they figured out what I'm allergic to, but I was on 5-6 different kinds of medication at the time and therefore I still have concerns about the accuracy of their determination. Because of this, one my fears about the upcoming surgery is actually how I'll do the day after . I'd appreciate your prayers.
Thank you all for your love and support!
Thats it. The day I'm having surgery.... again.
I've been waiting for a while now to know for sure because there were some schedualing difficulties. But I've been given the official word now, so there you go.
History: My surgeon has been telling me since November that it was time to stop trying to fix the fistula and face the facts that it cannot be fixed and I need to move on with my life. He did want me to get a 2nd opinion from the Chief of colorectal surgery, Dr Fazio, just so we would both feel that we gave this 100% and not have any questions. So in January I had a consult with Dr Fazio who agreed with Dr Remzi (I expected nothing less) and I eventually came to agree with them both. In February we talked about what we could to to alleviate my present distress, in March we agreed and got to work setting a surgery date and in April I got my date set.
My options were presented as follows:
1 - Leave me as I am - Not acceptable to me as I am having horrible draining 24/7
2 - Redo j-pouch - Not presented as a good option with likelihood of poor pouch function, chance of fistula recurrence and likelihood that the crohns disease would spread to my new pouch.
3 - Permanent end ileostomy - presented as BEST option because conserves the most bowel. However this option is very unattractive to me as I hate the appliance I have to wear all the time, and the thought of having it for the rest of my life is very difficult.
4 - Kock pouch - called a "continent ileostomy" kinda a hybrid of ileostomy and j-pouch, it is an internal pouch made from the small intestine and I would still have a stoma, however there is no external appliance. The pouch is emptied with a catheter. Check out my posting on the K-pouch for all the details. The pro of this being that the pouch is internal and there is no need for an appliance, I would just wear a patch to cover the stoma. The cons are #1 because it is made from my small intestine there is a chance that the crohns disease could spread to my new pouch. #2 The surgery is difficult and has a very high complication and re-operation rate.
After much prayerful consideration and talking with my family and doing a LOT of thinking I have opted to go with the kock pouch. It will bring me the closest to "normal" that I can ever be again since living with the fistula is out of the question. I will be having my j-pouch removed along with the sphincter muscles and remaining rectal cuff and my rear-end will be sewn up tight. As you can imagine this was a very difficult decision for me to make as there is no going back and it will be an emotionally and physically painful experience.
As I mentioned above the kock pouch is a very difficult procedure with a high complication rate such that there are only about a dozen surgeons in the US that do them. My surgeon, Dr Remzi is one of them and the chief of colorectal surgery Dr Fazio is famous for his skill at doing them (has done over 500). Part of the problem in getting my surgery scheduled was that they will be doing this part of the surgery together and its difficult to get two very busy surgeons together at the same time. I feel confident that they will do a fantastic job. As you have no doubt gathered, The k-pouch is a very big surgery and also having my j-pouch removed is also a major procedure so you can imagine that I am nervous. As much surgery as I've had its still not easy to be wheeled into the OR.
Here's the nitty-gritty:
Surgery is expected to last 4-6 hours
I'll have a 5-8 inch incision.
I will be hospitalized 5-7 days
My recovery period is 6-8 weeks
My diet will be severely limited for several months and there will be a huge period of adjustment as I get accustomed to my new alternative plumbing situation. Also, having all the sphincter muscles removed and that area sewn up will be painful for quite some time. I would very much appreciate your prayers as I try and prepare myself physically, emotionally and mentally for the challenges ahead.
My mom is coming home from Thailand to be with me and help Shon take care of me, and I would appreciate your prayers for her too as the travel time is in the range of 36 hours.
What else can you pray for?
That the surgery will go well with no major complications
That I have a speedy recovery!
That my mom and I won't drive each other crazy :)
That I'll adjust to my new pouch well.
That God will provide for our needs while I'm out of work
That God will comfort my family and provide them with peace - especially Shon. As hard as it is for me to go through all this, I know it is harder on my family.
On a side note:
Last February I had surgery to repair the fistula and give me a "temporary" ileostomy. The day after surgery, after I had been out of bed a little while, I laid down to take a nap and shortly thereafter stopped breathing - I had a severe allergic reaction to some medication that I was on. Fortunately the nurse came in to check on me and noticed that I was unresponsive, she called a "code blue" and the crash team came in and revived me. I do not know how long I was unconscious. My family was forced out of the room, a policeman was stationed outside and a pastor was sent up to talk to them. Thankfully they were able to revive me without any of the serious or invasive measures such as intubating or paddles but I woke up with a dozen doctors and nurses working on me, with an oxygen mask on my face, and with monitors all over my body. It was a terrifying experience for both me and my family
They THINK they figured out what I'm allergic to, but I was on 5-6 different kinds of medication at the time and therefore I still have concerns about the accuracy of their determination. Because of this, one my fears about the upcoming surgery is actually how I'll do the day after . I'd appreciate your prayers.
Thank you all for your love and support!
Friday, April 6, 2007
K-pouch
Its called Kock pouch - And yes, it is pronounced exactly the way it looks!
It was invented by a Swedish doctor named Nils Kock so of course its named in his honor. It's weird to think that something that is created entirely from the small intestine could be "invented" but there you go....
The Kock pouch is an internal pouch constructed from the small intestine which stores the waste products until the person is ready to irrigate, ie a thin tube is inserted into the stoma to drain the contents a few times a day.
A one-way nipple valve sitting flush with the skin, stops the stool from coming out at all other times. In this way a person avoids having to wear a bag and usually just has a just a piece of gauze or even a Band-Aid to protect the stoma during most of their daily activities.
People with a continent ileostomy usually only have to empty the pouch 4-5 times a day and not at all at night once the pouch is fully matured (grown to accommodate 500 - 1000 mL of fluid).
In the first 4 weeks following surgery I will have a constant drain left in the pouch. This will help me as I recover and allow the pouch time to heal. After the constant drain is taken out I will be on an intubating schedule where I will catheterize the pouch every 3 hours, then after a week or so every 4 hours, and so on and so forth until the pouch is mature.
Now for those of you who are not medical professionals - and in practical terms, what does all this mean?
#1 I'll never poop like a normal person again. I'm having all the sphincters and rectal cuff removed because of that nasty fistula that cannot be fixed and instead I'm being fitted with this internal pouch. As mentioned above, the way that waste exits the pouch is via a catheter. What is a catheter? Basically a long flexible tube that is inserted into the pouch and the waste is syphoned out. It does not hurt because the intestine does not have nerve endings. I've had a catheter shoved into my current stoma before and a scope and it did not hurt either time, just feels kinda funny.
#2 Everything that goes in my mouth must come out the tube which is not much bigger in diameter than a straw. I see the wheels turning. Here's where it may become a little "to much info" so feel free to skip ahead to the next paragraph! -- I don't have a colon so my waste is already pretty liquidy and there are MANY things I don't digest. If I don't chew it it doesn't change form and comes out just like it goes in: lettuce or other leafy greens, corn, nuts, seeds, fruit skins or membranes etc. so you can imagine that it could be problematic in getting it to come out through a long straw. Therefore, my diet will be very limited until I figure out how much trouble different foods cause me. I have to CHEW and CHEW and CHEW everything down to baby food consistency before swallowing or else I could have major difficulty in getting it to come back out. Dinnertime will become a marathon event.
So now maybe the question on your mind is "Doesn't it freak you out to think of sticking a catheter in your belly to 'go to the bathroom'?" Well, YES! Of course I'm a little freaked out about it. I'm human after all and this is a completely unnatural experience! But if there's one thing I've learned through all my medial problems is that things that are unnatural and bizarre can become commonplace when you do them often enough.
Maybe you're thinking "I could never do that!" But you're thinking about it like a person with a healthy colon. I haven't had a colon in 15 years - in fact, I cannot remember what it is like to go to the bathroom like a normal person. Also my options are extremely limited. It's not like I get to choose between being normal and having a k-pouch.
Am I intimidated? Yes. Am I going to let that stop me? NO. But if I obsess about it for a while and it takes me a half hour to eat a sandwich, I hope you will understand!
It was invented by a Swedish doctor named Nils Kock so of course its named in his honor. It's weird to think that something that is created entirely from the small intestine could be "invented" but there you go....
The Kock pouch is an internal pouch constructed from the small intestine which stores the waste products until the person is ready to irrigate, ie a thin tube is inserted into the stoma to drain the contents a few times a day.
A one-way nipple valve sitting flush with the skin, stops the stool from coming out at all other times. In this way a person avoids having to wear a bag and usually just has a just a piece of gauze or even a Band-Aid to protect the stoma during most of their daily activities.
People with a continent ileostomy usually only have to empty the pouch 4-5 times a day and not at all at night once the pouch is fully matured (grown to accommodate 500 - 1000 mL of fluid).
In the first 4 weeks following surgery I will have a constant drain left in the pouch. This will help me as I recover and allow the pouch time to heal. After the constant drain is taken out I will be on an intubating schedule where I will catheterize the pouch every 3 hours, then after a week or so every 4 hours, and so on and so forth until the pouch is mature.
Now for those of you who are not medical professionals - and in practical terms, what does all this mean?
#1 I'll never poop like a normal person again. I'm having all the sphincters and rectal cuff removed because of that nasty fistula that cannot be fixed and instead I'm being fitted with this internal pouch. As mentioned above, the way that waste exits the pouch is via a catheter. What is a catheter? Basically a long flexible tube that is inserted into the pouch and the waste is syphoned out. It does not hurt because the intestine does not have nerve endings. I've had a catheter shoved into my current stoma before and a scope and it did not hurt either time, just feels kinda funny.
#2 Everything that goes in my mouth must come out the tube which is not much bigger in diameter than a straw. I see the wheels turning. Here's where it may become a little "to much info" so feel free to skip ahead to the next paragraph! -- I don't have a colon so my waste is already pretty liquidy and there are MANY things I don't digest. If I don't chew it it doesn't change form and comes out just like it goes in: lettuce or other leafy greens, corn, nuts, seeds, fruit skins or membranes etc. so you can imagine that it could be problematic in getting it to come out through a long straw. Therefore, my diet will be very limited until I figure out how much trouble different foods cause me. I have to CHEW and CHEW and CHEW everything down to baby food consistency before swallowing or else I could have major difficulty in getting it to come back out. Dinnertime will become a marathon event.
So now maybe the question on your mind is "Doesn't it freak you out to think of sticking a catheter in your belly to 'go to the bathroom'?" Well, YES! Of course I'm a little freaked out about it. I'm human after all and this is a completely unnatural experience! But if there's one thing I've learned through all my medial problems is that things that are unnatural and bizarre can become commonplace when you do them often enough.
Maybe you're thinking "I could never do that!" But you're thinking about it like a person with a healthy colon. I haven't had a colon in 15 years - in fact, I cannot remember what it is like to go to the bathroom like a normal person. Also my options are extremely limited. It's not like I get to choose between being normal and having a k-pouch.
Am I intimidated? Yes. Am I going to let that stop me? NO. But if I obsess about it for a while and it takes me a half hour to eat a sandwich, I hope you will understand!
Monday, March 26, 2007
But you don't look sick
I've heard it enough, and for those people who don't say it I can see it in your face.
Its a blessing though, really, to have a disease where the symptoms are so personal I can hide them from the world. Because with crohns disease unless your emaciated because you can't get the nutrition you need, really you look fine. Most people wouldn't notice that you visit the bathroom 8 + times a day. They don't see the blood in the toilet. Don't know how much everything you eat affects you. Don't know how many and what kind of medications you're on and the side effects you deal with. Don't know what its like to have constant perianal drainage. And I have an ileostomy now so my symptoms are minimized.
Unfortunately though looks don't change facts. And this fistula is like my achillies heel. It seems so ridiculous to me sometimes that something so small could cause such problems, could be so difficult to fix - and in my case, unfixable. One thing is for sure and that is I can't continue on indefintely like I have been. Its one thing to deal with the draining when you think its temporary and the doctors will be able to end it. But I saw my surgeon and he's said there is nothing more he can do for me and he even had me get a 2nd opinion for the chief of colorectal surgery who said the same thing. He said its time to accept that we cannot fix this and move on with my life. So I'm headed back for more major abdominal surgery in May to have my j-pouch removed.
But you don't look sick! --- I'll take that as a compliment.
Its a blessing though, really, to have a disease where the symptoms are so personal I can hide them from the world. Because with crohns disease unless your emaciated because you can't get the nutrition you need, really you look fine. Most people wouldn't notice that you visit the bathroom 8 + times a day. They don't see the blood in the toilet. Don't know how much everything you eat affects you. Don't know how many and what kind of medications you're on and the side effects you deal with. Don't know what its like to have constant perianal drainage. And I have an ileostomy now so my symptoms are minimized.
Unfortunately though looks don't change facts. And this fistula is like my achillies heel. It seems so ridiculous to me sometimes that something so small could cause such problems, could be so difficult to fix - and in my case, unfixable. One thing is for sure and that is I can't continue on indefintely like I have been. Its one thing to deal with the draining when you think its temporary and the doctors will be able to end it. But I saw my surgeon and he's said there is nothing more he can do for me and he even had me get a 2nd opinion for the chief of colorectal surgery who said the same thing. He said its time to accept that we cannot fix this and move on with my life. So I'm headed back for more major abdominal surgery in May to have my j-pouch removed.
But you don't look sick! --- I'll take that as a compliment.
Tuesday, March 20, 2007
Adventures in Gastroenterology
You may be familiar with my adventures in colorectal surgery series, but this is an adventure that I had with my Gastro doc Dr Shen back in Nov 2006. It all started when I began to see blood coming out of my stoma. This was very unsettling for me as I'm sure you can imagine. So after watching this happen and getting some advice from my webboard at www.j-pouch.org I decided I had better notify my GI. I emailed my doctor and his response was to order me to come up to the clinic to have a scope done through my stoma. This scope is the same type device they use for colonoscopies it is a fiber-optic cable with a camera and light and they shoot you full of air to expand the intestine and see stuff. Now I had a scope done through my stoma before, it is not really painful, mostly uncomfortable because of all the air so I felt ok going up by myself. So I got checked in, had my backpack and walked back to my little pre-op area, I passed Dr Shen who was on the phone at the nurse’s station and he waved at me.
My nurse takes me to my little area and says "you don't need sedation right? Because it’s through the stoma?"
ME "right, no sedation"
There's 2 nurses, My nurse and this other nurse in training who walked up after this was stated and the N-I-T says "I'll get her IV started"
Nurse "No, she's getting scope through her stoma she doesn't need an IV"
So they close the curtain and I take of shirt and pants, just so poop doesn't get on my clothes and throw on a gown. Well I'm just tying the back and trying to shove my backpack under the gurney (in this area your stuff goes under the stretcher with you because you finish in a different place where you started).
Dr. Shen comes right outside my little area "I'm ready for my next patient. Is it Katie? She should be ready." Then to me, "Katie, are you ready?"
ME: "Yes almost, I'm just stowing my stuff. Am I gonna walk back?"
Dr Shen "No I'm going to push you!"
ME: "I'm really getting the red-carpet treatment today!"
He laughs and then he swings back the curtain and my nurse is there too with the N-I-T who says "Aren't we going to start an IV?"
to which all of us (Dr Shen, the nurse and me) say "NO"
So the nurse starts pushing me to the scoping room and Dr. Shen and I are chatting about the conference he was at and that N-I-T goes "shouldn't we start one though?"
Real Nurse "NO"
Nurse in training "Really? What if there's an emergency?"
Nurse: "NO"
ME: (giggling a little) "What kind of emergency?"
Nurse "We don't need an IV”
And at this point I'm totally rolling my eyes here. I don't think she would've been so eager to get her shot at starting one if she knew how bad of a stick I am :oP
So we get all situated in the scoping room and I ask Dr. Shen if he's going to look down towards the pouch as well as up since I think that’s where I saw the blood come from and once he confirms that I have LOOP ileo he says yes he will certainly do that.
Well he sticks the scope in and I'm totally digging this because it’s really cool to watch your insides on TV. But the amount of air is REALLY quickly making me incredibly uncomfortable and it is painful. Try to imagine the worst gas you've ever had then triple it. I'm starting to breathe harder and squeeze the bed rails.
So the Nurse comes over and she takes my hand and she's like "take deep breaths... that’s right, in through the nose..."
I feel like I'm giving birth. :oP
Dr. Shen: "I'm sorry, Katie, you're doing good. Small bowel looks really good no disease. Ok I'm gonna to try and go to the lower part."
Dr. Shen "ok, here we go"
ME: "OH, really? Umm, I…"
Enter scope - I'll spare you the detail except to say... EEK!
Actually, it really wasn't bad. I thought I would be miserable, and it was slightly uncomfortable but oddly enough NOT as bad as through the stoma ( I think he used a pediatric scope) And also I think it was largely due to the fact that now all that air had 2 exits - 1 my fistula (gross) and 2 my stoma.
ME: totally laughing 'HOLY COW the endoscope!! That's hilarious!!"
Dr Shen (who up to this point seemed totally removed from every other odd thing that was happening) did seem to find this amusing too. :)
I know that this was an odd experience for the nurses even though they were VERY professional, trying to make it seem like this sort of thing happens every day there. But I know that they don't do a lot of stoma scopes maybe a couple in a month and the nurses are assigned a room and not a doctor so they cycle through upper and lower scopes. And I DOUBT very much that they do a lot of endoscopes on patients that have ileostomies! And I'm pretty sure they've never seen an endoscope light shining through a stoma!
Definitely one of my most memorable experiences!
My nurse takes me to my little area and says "you don't need sedation right? Because it’s through the stoma?"
ME "right, no sedation"
There's 2 nurses, My nurse and this other nurse in training who walked up after this was stated and the N-I-T says "I'll get her IV started"
Nurse "No, she's getting scope through her stoma she doesn't need an IV"
So they close the curtain and I take of shirt and pants, just so poop doesn't get on my clothes and throw on a gown. Well I'm just tying the back and trying to shove my backpack under the gurney (in this area your stuff goes under the stretcher with you because you finish in a different place where you started).
Dr. Shen comes right outside my little area "I'm ready for my next patient. Is it Katie? She should be ready." Then to me, "Katie, are you ready?"
ME: "Yes almost, I'm just stowing my stuff. Am I gonna walk back?"
Dr Shen "No I'm going to push you!"
ME: "I'm really getting the red-carpet treatment today!"
He laughs and then he swings back the curtain and my nurse is there too with the N-I-T who says "Aren't we going to start an IV?"
to which all of us (Dr Shen, the nurse and me) say "NO"
So the nurse starts pushing me to the scoping room and Dr. Shen and I are chatting about the conference he was at and that N-I-T goes "shouldn't we start one though?"
Real Nurse "NO"
Nurse in training "Really? What if there's an emergency?"
Nurse: "NO"
ME: (giggling a little) "What kind of emergency?"
Nurse "We don't need an IV”
And at this point I'm totally rolling my eyes here. I don't think she would've been so eager to get her shot at starting one if she knew how bad of a stick I am :oP
So we get all situated in the scoping room and I ask Dr. Shen if he's going to look down towards the pouch as well as up since I think that’s where I saw the blood come from and once he confirms that I have LOOP ileo he says yes he will certainly do that.
Well he sticks the scope in and I'm totally digging this because it’s really cool to watch your insides on TV. But the amount of air is REALLY quickly making me incredibly uncomfortable and it is painful. Try to imagine the worst gas you've ever had then triple it. I'm starting to breathe harder and squeeze the bed rails.
So the Nurse comes over and she takes my hand and she's like "take deep breaths... that’s right, in through the nose..."
I feel like I'm giving birth. :oP
Dr. Shen: "I'm sorry, Katie, you're doing good. Small bowel looks really good no disease. Ok I'm gonna to try and go to the lower part."
And he does try but he's not having any luck because the lower opening of the stoma is really covered by my appliance which he cannot take off because obviously that would be a problem when I need to leave. I have an appointment to see the ET nurses an hour after my scope and I can't just sit around "au natural" (wee willy naked) until then.
So then Dr. Shen says "Ok, we're going to go through the bottom"
ME: "Um, really? Ah, because I'm a BIG CHICKEN" I realized though that I didn't have much of a choice because I can't have sedation because I have no one to drive me home.
Dr. Shen: "Its ok"
ME: "really? cause ah..."
But at this point Dr Shen has removed the scope from my stoma and I don't really have a say because I'm already being rolled onto my left side. I'm trying desperately to to not panic, And I notice the nurses DID NOT put my bag back on and now that willy is free of the scope and full of air he is spewing poo everywhere!
ME: "Hey!!!! we really need to put the bag back on!!"
Dr. Shen "ok, here we go"
ME: "OH, really? Umm, I…"
Enter scope - I'll spare you the detail except to say... EEK!
Actually, it really wasn't bad. I thought I would be miserable, and it was slightly uncomfortable but oddly enough NOT as bad as through the stoma ( I think he used a pediatric scope) And also I think it was largely due to the fact that now all that air had 2 exits - 1 my fistula (gross) and 2 my stoma.
Now I'm really trying to watch because this is my j-pouch which I really wanted to know how bad it looks. So I'm trying to see the TV around the nurse who has put the bag back on and is trying to clean me up. She turns around to do something at the counter and I move my hand and realize that my ostomy bag is ABOUT TO BLOW!!!!
It is completely filled with air - blown up like a balloon full to capacity and I squawk "HEY this thing is going to EXPLODE if we don't get it open now!"
Nurse "yes! I'm coming!"
I'm frantically trying to un-Velcro the stupid thing, but my left arm is pinned under my body because I'm on my side. Finally the nurse comes over with a giant pad of some sort and releases the Hindenburg.
Dr. Shen "Wow, your pouch is very narrow and constricted"
ME: "Narrow huh?" --- Relieved of the impending explosion of poo I can once again turn my attention to the video monitor.
Dr. Shen "That is because of the crohn's disease, and you have diversionary pouchitis but that is to be expected"
ME: "So just diversionary pouchitis? Pouch doesn't look too bad? So, if the fistula got closed and I got reconnected how would my pouch function be?
Dr. Shen "If you get hooked back up then pouch gets the nutrients it needs and pouchitis should go away."
Then he took a couple of biopsies of my pouch.
Then I notice out of the corner of my eye that there is a PAUSE in the flurry of activity the nurses have kept up to this point. I mean, really I'm a complete disaster, covered in poo because of the scope and the nurses forgetting to cover willy then the whole almost-exploding ilestomy bag incident. So the fact that they've STOPPED doing anything gets my attention, so I look down to see what the nurses are occupied with now and I notice something VERY ODD (Like this whole experience hasn't been insane enough already...)
I can see the light from the endoscope shining out from inside me ----- out of my stoma and into my bag!!! This is truly a stunning moment. My brain is trying to process that there is a light in my belly and I'm on the verge of hysterical laughter.
ME: "O my gosh!!!"
Nurse PAUSE "That’s the endoscope...."
DUH!! I'm not E.T. !!!
ME: totally laughing 'HOLY COW the endoscope!! That's hilarious!!"
Dr Shen (who up to this point seemed totally removed from every other odd thing that was happening) did seem to find this amusing too. :)
I know that this was an odd experience for the nurses even though they were VERY professional, trying to make it seem like this sort of thing happens every day there. But I know that they don't do a lot of stoma scopes maybe a couple in a month and the nurses are assigned a room and not a doctor so they cycle through upper and lower scopes. And I DOUBT very much that they do a lot of endoscopes on patients that have ileostomies! And I'm pretty sure they've never seen an endoscope light shining through a stoma!
Definitely one of my most memorable experiences!
Sunday, March 11, 2007
Not a tame Lion
Well I'm sure that doesn't make sense to some of you but to me, it makes a lot of sense to me. I'll explain.
Really, it all goes back to the fact that I need surgery, again. And this will be my fourth major abdominal surgery and perhaps you're wondering why? After all, I don't look sick, don't act sick. How can a non-sick person need surgery? Well, I'll expound on that in another post but suffice it to say right now that just because I'm not "sick" doesn't mean I don't have serious problems that need addressing, and sometimes the best time to have surgery is before you're sick. But on to the Lion factor.
So for the last year and a half I've been dealing with the fact that I have big intestinal issues again and I'm in the hospital again and having surgery again and I'm looking at a future where I'll be even more different than every girl my age again. And I'm getting the total gamut of reactions, some people making like its no big deal, get over it. Some tell me I need to pray more for healing and have faith. Some people telling me I need to explore alternative therapies, some people telling me that I need to have a total natural and organic diet, some people telling me that God is trying to teach me something, some people telling me its just the way life goes, some people telling me sickness is not a part of God's plan. None of this helps me, and quite a bit of it actually hurts.
And I've been struggling with this so much and contrary to those people that think I either A - choose to be ill, or B - blow my medical problems out of proportion (neither of which is true) I HATE that this has happened to me. I hate it, and I would do anything in my power for it not to happen. But its not in my power. And no diet or positive thoughts, holistic medicine or even ignoring it is going to change anything. See, I think this is God's plan for me.
Step back! Is she crazy? God doesn't plan for stuff like this to happen to people, lets face it there is sickness in the world and when it strikes someone sometimes God intervenes and sometimes He doesn't, but he doesn't plan it into their lives. Are you sure? I'm not. I don't see God as someone who reacts, I see Him as someone who ACTS. I've been reading this book by Joni Earekson Tada called "When God Weeps" about dealing with suffering, and its really nailed down and clarified some things I've been pondering in my head and heart. It deals with all the tough stuff, you know like "If God is a God of Love why is there suffering on the earth?" But the most interesting thing about it is there is no apology for the actions and words of God in the Bible. Its clear that He acts deliberately and with purpose all the time. Remember Joseph? Spent like 15 years in prison? Talk about suffering. You think God just worked around those nasty brothers of Joseph or did He PLAN it? Do you think God just let stuff happen to Paul (beatings, shipwreck, personal illness) or did he plan it? Did God just allow Joni to hit her head on that dock and break her neck or did he plan it? Do you think Christian martyrs deaths are just an unfortunate circumstance of the time and God just chose not to act, or was it part of the plan?
See I don't think stuff happens and God thinks 'well I guess I'll just work around this' I think He has a plan for everyone and its pretty clear for me His plan involves me spending an enormous amount of time in the hospital. It involves me going through many painful and embarrassing procedures, getting stuck with a needle more times than I can count and having multiple major surgeries. Don't like that thought? Me neither. But I can accept that there's a lot more at stake than my personal comfort. I'm getting to the Lion part.
Did you see or read "The Lion, the Witch and the Wardrobe" by C.S. Lewis? There is an excellent illustration of God here, don't miss it. The Pevensie kids are at the Beaver's house and they're talking about Aslan the Lion and they're looking forward to his return. Lucy asks "A lion? Are you sure he's quite safe?" "Safe?" Mr Beaver replies "Safe? Didn't you just hear me? He's a lion, of course he's not safe. But, he's the King I tell you, and He's good."
So yes, I think God planned for this to happen to me specifically, and that doesn't really make me happy but it is something I can accept. And I may never know why, I actually believe I'll be lucky if I get to see some good comes of it in my lifetime. I may never know who's path I crossed, never know what people I made a difference to. And I'm not saying that I'm this stoic sufferer either because there's plenty of times I've been angry at God about this, and I'm sure there are more days in front of me. But if God can use my illness for His glory then I just hope I'm a good tool. So if you do pray for me, pray that I'm a willing instrument and that God will use me for His glory.
Maybe God is not "safe" but He's the King I tell you, and He's good.
Really, it all goes back to the fact that I need surgery, again. And this will be my fourth major abdominal surgery and perhaps you're wondering why? After all, I don't look sick, don't act sick. How can a non-sick person need surgery? Well, I'll expound on that in another post but suffice it to say right now that just because I'm not "sick" doesn't mean I don't have serious problems that need addressing, and sometimes the best time to have surgery is before you're sick. But on to the Lion factor.
So for the last year and a half I've been dealing with the fact that I have big intestinal issues again and I'm in the hospital again and having surgery again and I'm looking at a future where I'll be even more different than every girl my age again. And I'm getting the total gamut of reactions, some people making like its no big deal, get over it. Some tell me I need to pray more for healing and have faith. Some people telling me I need to explore alternative therapies, some people telling me that I need to have a total natural and organic diet, some people telling me that God is trying to teach me something, some people telling me its just the way life goes, some people telling me sickness is not a part of God's plan. None of this helps me, and quite a bit of it actually hurts.
And I've been struggling with this so much and contrary to those people that think I either A - choose to be ill, or B - blow my medical problems out of proportion (neither of which is true) I HATE that this has happened to me. I hate it, and I would do anything in my power for it not to happen. But its not in my power. And no diet or positive thoughts, holistic medicine or even ignoring it is going to change anything. See, I think this is God's plan for me.
Step back! Is she crazy? God doesn't plan for stuff like this to happen to people, lets face it there is sickness in the world and when it strikes someone sometimes God intervenes and sometimes He doesn't, but he doesn't plan it into their lives. Are you sure? I'm not. I don't see God as someone who reacts, I see Him as someone who ACTS. I've been reading this book by Joni Earekson Tada called "When God Weeps" about dealing with suffering, and its really nailed down and clarified some things I've been pondering in my head and heart. It deals with all the tough stuff, you know like "If God is a God of Love why is there suffering on the earth?" But the most interesting thing about it is there is no apology for the actions and words of God in the Bible. Its clear that He acts deliberately and with purpose all the time. Remember Joseph? Spent like 15 years in prison? Talk about suffering. You think God just worked around those nasty brothers of Joseph or did He PLAN it? Do you think God just let stuff happen to Paul (beatings, shipwreck, personal illness) or did he plan it? Did God just allow Joni to hit her head on that dock and break her neck or did he plan it? Do you think Christian martyrs deaths are just an unfortunate circumstance of the time and God just chose not to act, or was it part of the plan?
See I don't think stuff happens and God thinks 'well I guess I'll just work around this' I think He has a plan for everyone and its pretty clear for me His plan involves me spending an enormous amount of time in the hospital. It involves me going through many painful and embarrassing procedures, getting stuck with a needle more times than I can count and having multiple major surgeries. Don't like that thought? Me neither. But I can accept that there's a lot more at stake than my personal comfort. I'm getting to the Lion part.
Did you see or read "The Lion, the Witch and the Wardrobe" by C.S. Lewis? There is an excellent illustration of God here, don't miss it. The Pevensie kids are at the Beaver's house and they're talking about Aslan the Lion and they're looking forward to his return. Lucy asks "A lion? Are you sure he's quite safe?" "Safe?" Mr Beaver replies "Safe? Didn't you just hear me? He's a lion, of course he's not safe. But, he's the King I tell you, and He's good."
So yes, I think God planned for this to happen to me specifically, and that doesn't really make me happy but it is something I can accept. And I may never know why, I actually believe I'll be lucky if I get to see some good comes of it in my lifetime. I may never know who's path I crossed, never know what people I made a difference to. And I'm not saying that I'm this stoic sufferer either because there's plenty of times I've been angry at God about this, and I'm sure there are more days in front of me. But if God can use my illness for His glory then I just hope I'm a good tool. So if you do pray for me, pray that I'm a willing instrument and that God will use me for His glory.
Maybe God is not "safe" but He's the King I tell you, and He's good.
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