Hello!! I have had my ileostomy due to Crohn's Disease since 2009. It was my understanding at the time that it was permanent and over time I accepted it and went on with life. Recently, my gastro doctor asked me if I'd like to have a reversal done and that my Crohn's has been in remission. I have been cleared by the colo-rectal surgeon and all they need now is my OK. I have never really thought about it, and so I told them I would decide after the holidays because my ostomy is normal to me and that I didn't want to be hospitalized longer if anything went wrong. So I have lots of time to do research, and a lot of it is making me anxious and worried. I guess I would like to not have a bag anymore, but then again I wouldn't want to have accidents every day either. These are the things I think about. I have read a lot of posts here and the honesty and detail have been very helpful. If anyone has any advice on how to make this decision easier or wants to tell me their experience (good or bad), I would appreciate it greatly.
BoKo48
Oct 08, 2013 3:05 pm
Pentat
Oct 16, 2013 2:14 am
That is a very hard decision. One that is very personal with different variables for each person. I had to make that decision too. I have had IBD since 1996. Originally, the doctor thought it was Crohn's. Last year, I found out I had colon cancer, which everyone with IBD is at high risk for as time goes on due to inflammation in the colon over time.
Thus, my decision at the time of surgery was to choose permanent ileostomy or J pouch. Many surgeons won't do a J pouch if you have had a history of Crohn's due to the increased risk of inflammation in the J pouch and associated issues. I had my colon and rectum removed. If you don't have a history of inflammation in the small intestine but have Crohn's, some surgeons will allow a J pouch, but many won't. Cleveland Clinic has statistics that say if the Crohn's patient doesn't have signs of inflammation in the small intestine, 85% of those patients successfully still have a J pouch 10 years after surgery. Patients with UC have a 10-year success rate in the 90-94% range. I decided to go with a J pouch if my surgeon would let me. On the operating table, the surgeon looked closely and did not see inflammation in my small intestine, and actually changed my diagnosis to UC based on what he saw directly. Thus, he did the J pouch on me.
I had a temporary "loop" ileostomy for about 9 months before having my "takedown" hooking up to the J pouch and closing up the ostomy. I am now 2 months post-takedown. Keep that in mind as the basis for my opinion - not a long time with either but more than you have experienced.
Ostomy Pros:
1. Less risk of future complications, namely pouchitis.
2. No risk of cancer in the anal transition zone.
3. No J Pouch second surgery with recovery.
4. No risk of having to have the J pouch removed later, which is a very involved surgery.
5. Won't ever get pouchitis, IBD-like condition in the J Pouch.
6. Technically don't ever have to sit on a public toilet again, although kneeling on the floor in a public restroom seems worse to me.
7. No bloating - no pressure on your system as it all goes into the bag. With J pouch, I do have bloating, etc., more of that type of discomfort. That may be because I am only 2 months post-takedown and I went 9 months with no pressure in my system. But it is a J pouch drawback for me right now.
8. No irritated skin around the anus from stool going past it often every day.
J Pouch Pros:
1. No bag for me has meant more physical comfort and ability to do activities easier - swimming, sex, running, etc., despite the positive spin some people have on doing those things easily with the bag. I was leery of running as I worried it could loosen the wafer from the up and down.
2. I always worried about the bag being too full and would want to check it. J Pouch you "feel" how full you are and know that way when to go.
3. Much less risk of hernias. Your abdomen is simply more physically sound.
4. For me, just a more natural way to go to the bathroom. As my surgeon put it, "Do you want to poop out of your side or your butt?" Either answer is legitimate in our situation.
5. No morning wafer changes like needed with the bag. I was slow at that and I hated doing it.
6. To me, emptying the J pouch is easier than emptying the bag.
7. No irritated skin around the stoma from wafer leakage, etc.
All considered, I am glad so far I went with a J pouch with J Pouch Pro #1 being weighted more heavily by me. I recovered fairly quickly and am averaging going #2 six times in a 24-hour period. At month 2, that is better than average. Ask me in a year and a week when I may have pouchitis and maybe I give you a different answer. But I didn't want to go permanent and not give the J pouch a try. The extra surgery risk was worth it for me. But I never had surgery before my colon cancer. Others have had more surgeries and other health issues, so more surgery would be a bigger deal for them.
Hope the above helps. I am sure I could share more, but the above are my first thoughts on the matter. Good luck and remember perspective. It can always be worse. Without either option, we wouldn't be alive or maybe going to the bathroom 20 times a day.
Thus, my decision at the time of surgery was to choose permanent ileostomy or J pouch. Many surgeons won't do a J pouch if you have had a history of Crohn's due to the increased risk of inflammation in the J pouch and associated issues. I had my colon and rectum removed. If you don't have a history of inflammation in the small intestine but have Crohn's, some surgeons will allow a J pouch, but many won't. Cleveland Clinic has statistics that say if the Crohn's patient doesn't have signs of inflammation in the small intestine, 85% of those patients successfully still have a J pouch 10 years after surgery. Patients with UC have a 10-year success rate in the 90-94% range. I decided to go with a J pouch if my surgeon would let me. On the operating table, the surgeon looked closely and did not see inflammation in my small intestine, and actually changed my diagnosis to UC based on what he saw directly. Thus, he did the J pouch on me.
I had a temporary "loop" ileostomy for about 9 months before having my "takedown" hooking up to the J pouch and closing up the ostomy. I am now 2 months post-takedown. Keep that in mind as the basis for my opinion - not a long time with either but more than you have experienced.
Ostomy Pros:
1. Less risk of future complications, namely pouchitis.
2. No risk of cancer in the anal transition zone.
3. No J Pouch second surgery with recovery.
4. No risk of having to have the J pouch removed later, which is a very involved surgery.
5. Won't ever get pouchitis, IBD-like condition in the J Pouch.
6. Technically don't ever have to sit on a public toilet again, although kneeling on the floor in a public restroom seems worse to me.
7. No bloating - no pressure on your system as it all goes into the bag. With J pouch, I do have bloating, etc., more of that type of discomfort. That may be because I am only 2 months post-takedown and I went 9 months with no pressure in my system. But it is a J pouch drawback for me right now.
8. No irritated skin around the anus from stool going past it often every day.
J Pouch Pros:
1. No bag for me has meant more physical comfort and ability to do activities easier - swimming, sex, running, etc., despite the positive spin some people have on doing those things easily with the bag. I was leery of running as I worried it could loosen the wafer from the up and down.
2. I always worried about the bag being too full and would want to check it. J Pouch you "feel" how full you are and know that way when to go.
3. Much less risk of hernias. Your abdomen is simply more physically sound.
4. For me, just a more natural way to go to the bathroom. As my surgeon put it, "Do you want to poop out of your side or your butt?" Either answer is legitimate in our situation.
5. No morning wafer changes like needed with the bag. I was slow at that and I hated doing it.
6. To me, emptying the J pouch is easier than emptying the bag.
7. No irritated skin around the stoma from wafer leakage, etc.
All considered, I am glad so far I went with a J pouch with J Pouch Pro #1 being weighted more heavily by me. I recovered fairly quickly and am averaging going #2 six times in a 24-hour period. At month 2, that is better than average. Ask me in a year and a week when I may have pouchitis and maybe I give you a different answer. But I didn't want to go permanent and not give the J pouch a try. The extra surgery risk was worth it for me. But I never had surgery before my colon cancer. Others have had more surgeries and other health issues, so more surgery would be a bigger deal for them.
Hope the above helps. I am sure I could share more, but the above are my first thoughts on the matter. Good luck and remember perspective. It can always be worse. Without either option, we wouldn't be alive or maybe going to the bathroom 20 times a day.
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vollovr
Oct 17, 2013 12:06 am
Hello,
My, how doctors do vary in their treatments and opinions. I was told by every gastroenterologist and colorectal surgeon (about 6 in all) that Crohn's patients, no matter the disease involvement, are never candidates for reversals because of the high incidence of recurrence of Crohn's.
My, how doctors do vary in their treatments and opinions. I was told by every gastroenterologist and colorectal surgeon (about 6 in all) that Crohn's patients, no matter the disease involvement, are never candidates for reversals because of the high incidence of recurrence of Crohn's.
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Cecille
Oct 17, 2013 12:37 am
Doctors might say that in the USA but they don't say that to me here in the UK!
Therefore, I am planning a reversal.
Having said that, I was in remission from Crohn's from 1982 until 2009, which was the year I had an accident that ruptured my intestines at the spot where they had a section (most of the colon) cut out and been rejoined way back in 1982. Since 2009, it has taken me 4 years to get over dying from septicemia on the operating table, having multiple organ failure, double pneumonia, a fractured skull, my heart stopped, and then being resuscitated.
Since 2009, I have had what appears to be 2 episodes of Crohn's disease in what is left of my colon, so I might not make it. But I am going to try!
SORCHIA
Oct 18, 2013 9:11 pm
Good grief, how in the world did they fracture your skull? Did you fall off the table? I used to work at the hospital here. Seen many brutal surgeries, been through a few myself, but a skull fracture is a new one. I watched a lot of medical procedures that no one should have lived through. My last surgery was a nightmare I'll probably never wake up from. I often wondered if someone could observe the proceedings. If so, I recommend taking someone with you. Staff here was always more careful if someone was there with the patient. Just saying... God bless you and good luck, let us know how things go for you as I am hoping one day to be rid of my bag so I can walk, run, hike, jog, ride horses again, swim, garden, bend over, lie down to sleep, sleep more than 3 hours at a time, and hopefully stop bleeding to death out my backside. I exist but don't really live. I hope to make it back out the other side of this tunnel I got stuck in. Good luck and please stay in touch. I have not seen a doctor since they did this to me in 2010. Believe it or not, this forum is the only place I know of to get information.
Words of Encouragement from Ostomy Advocates I Hollister
Cecille
Oct 18, 2013 11:05 pm
Dear Sorchiaxmlo/o,
I have just read your background story and found it heartbreaking. o/o
What about the Obama Care we are hearing about? It's all over the TV that the USA is going to start up a National Health Service like we have here in the UK. I can hardly believe the terrible time you are having. I thought my own story was bad but yours is terrible. I wish I could help you, but there's no way I can find out how to get in touch with you as it's not allowed on this site. o/o
But I can answer a few of your questions. First, I too have horrible fecal liquid coming out of my bottom but it only happens when I eat too much. I do have some blood sometimes but nothing like you describe. It seems to me that you have a vein that has been breached during the surgery and not sewn up properly. It is a disgrace that the surgeon has made such a botched job of your operation. If he is that bad doing it in the first place, maybe it's just as well he won't do a reversal. He could make things worse. o/o
Can't you start up some kind of internet appeal to someone in the USA? Surely there must be some charities that would help people in your position. A lot of people here in the UK who need medical treatment that is not covered by the NHS do set up petition sites and get people to send them money. I think you MUST do something because you cannot go on losing all that blood. You will become anemic if you are not so already. o/o
SURELY THERE MUST BE SOMEONE SOMEWHERE IN THAT HUGE BENEVOLENT COUNTRY CALLED THE USA THAT CAN HAVE SOME COMPASSION AND HELP YOU? o/o
You asked me to stay in touch and of course I will. Please try and think of a way to get someone to help you. If no one knows about your situation, then no one can help you. You must tell more people about it. Do a Public Relations exercise. Go on TV or something, or go to a newspaper and publish your story. YOU NEED EXPERT HELP. If I knew your address, I could post you more supplies. o/o
Please update me with any plans you can think of that might help your situation. My heart is going out to you, I hope you can feel my compassion. o/o
I have just read your background story and found it heartbreaking. o/o
What about the Obama Care we are hearing about? It's all over the TV that the USA is going to start up a National Health Service like we have here in the UK. I can hardly believe the terrible time you are having. I thought my own story was bad but yours is terrible. I wish I could help you, but there's no way I can find out how to get in touch with you as it's not allowed on this site. o/o
But I can answer a few of your questions. First, I too have horrible fecal liquid coming out of my bottom but it only happens when I eat too much. I do have some blood sometimes but nothing like you describe. It seems to me that you have a vein that has been breached during the surgery and not sewn up properly. It is a disgrace that the surgeon has made such a botched job of your operation. If he is that bad doing it in the first place, maybe it's just as well he won't do a reversal. He could make things worse. o/o
Can't you start up some kind of internet appeal to someone in the USA? Surely there must be some charities that would help people in your position. A lot of people here in the UK who need medical treatment that is not covered by the NHS do set up petition sites and get people to send them money. I think you MUST do something because you cannot go on losing all that blood. You will become anemic if you are not so already. o/o
SURELY THERE MUST BE SOMEONE SOMEWHERE IN THAT HUGE BENEVOLENT COUNTRY CALLED THE USA THAT CAN HAVE SOME COMPASSION AND HELP YOU? o/o
You asked me to stay in touch and of course I will. Please try and think of a way to get someone to help you. If no one knows about your situation, then no one can help you. You must tell more people about it. Do a Public Relations exercise. Go on TV or something, or go to a newspaper and publish your story. YOU NEED EXPERT HELP. If I knew your address, I could post you more supplies. o/o
Please update me with any plans you can think of that might help your situation. My heart is going out to you, I hope you can feel my compassion. o/o