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.
Friday, September 28, 2007
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?
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