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.
Tuesday, April 24, 2007
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!
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