Opinions on J pouch procedure

hospitalstaph · Dec 4, 2005

I'm 25 yo and have Crohn's in small bowel and ulcerative colitis in large intestine. Remicade and prednisone not working. Insurance won't approve Humera(sp). GI doc recommends J pouch surgery. I know all the risks involved and all the stastics. What I want to know is what is your experience with J pouches? Do your pts. think it's worth it? What's the most common problems you see with this?

Question: How do you have Crohn's in small bowel and UC in colon? If IBD develops anywhere other than the colon isn't it assumed that it is Crohn's everywhere? If you already have Crohn's in the small bowel, your chances of a successful J pouch are very slim. I honestly cannot imagine why this would be recommended. I have heard of J pouch being offered to Crohn's patients that have their disease limited to the colon, but with it already showing up in the small bowel it just doesn't sound like a good idea.

Also have you talked to a colorectal surgeon yet that is willing to perform an ileoanal anastomosis? That may be a good place to start. The surgeon can give you more information based on your particular situation and how he/she may feel about potential risks/benefits.

I hope this helps. Crohn's is terrible, terrible disease and I hope you get the answers that you are looking for.

T

Genista, BSN, RN · Dec 9, 2005

Hi Bethin-

I concur with L&D Someday's comments about J-pouches not being recommended for Crohns. I am surprised if your GI suggested this, as the pouch can become inflammed and can cause pouchitis, if you have Crohns. The J-pouch is usually done for pts with UC only (limited to the colon).Please ask your doc about this.It concerns me that this was recommended to you with such a high risk for a poor outcome.

Just curious if you have been to a support group mtg through Crohn's and Colitis Foundation of America (CCFA)? I was dx with UC in Sept. I'm feeling better now, but went to a CCFA support group meeting last week for the 1st time just to check it out. The reason I mention it, is there are folks with Crohns and Ulcerative Colitis there with 20+ years hx of dealing with the disease, and many have been through various surgeries,meds, treatments, etc. It's good support and good way to meet people who have been in your shoes. It may be helpful for you to talk with several people before making this big decision. If you go to the CCFA website, they should have links for support groups (http://www.ccfa.org). The members were really welcoming to me, and they even had a lending library of books and magazines. Good luck.

bethin · Dec 12, 2005

Question: How do you have Crohn's in small bowel and UC in colon? If IBD develops anywhere other than the colon isn't it assumed that it is Crohn's everywhere? If you already have Crohn's in the small bowel, your chances of a successful J pouch are very slim. I honestly cannot imagine why this would be recommended. I have heard of J pouch being offered to Crohn's patients that have their disease limited to the colon, but with it already showing up in the small bowel it just doesn't sound like a good idea.
Also have you talked to a colorectal surgeon yet that is willing to perform an ileoanal anastomosis? That may be a good place to start. The surgeon can give you more information based on your particular situation and how he/she may feel about potential risks/benefits.
I hope this helps. Crohn's is terrible, terrible disease and I hope you get the answers that you are looking for.
T

I have an appt. the end of this month for a second opinion. My pcp doesn't recommend it. I still haven't made a decision either way. My thinking is if I have no large bowel and my Crohn's spreads then I'm going to be in serious trouble. It I only had UC, it would be a no brainer for me.

Thanks for your reply, I really appreciate it. Everything I've read on the internet is 'go ahead and do it, you'll feel better.' This is major surgery and it's not like they can put it back if I change my mind later.

bethin · Dec 12, 2005

Hi Bethin-
I concur with L&D Someday's comments about J-pouches not being recommended for Crohns. I am surprised if your GI suggested this, as the pouch can become inflammed and can cause pouchitis, if you have Crohns. The J-pouch is usually done for pts with UC only (limited to the colon).Please ask your doc about this.It concerns me that this was recommended to you with such a high risk for a poor outcome.
Just curious if you have been to a support group mtg through Crohn's and Colitis Foundation of America (CCFA)? I was dx with UC in Sept. I'm feeling better now, but went to a CCFA support group meeting last week for the 1st time just to check it out. The reason I mention it, is there are folks with Crohns and Ulcerative Colitis there with 20+ years hx of dealing with the disease, and many have been through various surgeries,meds, treatments, etc. It's good support and good way to meet people who have been in your shoes. It may be helpful for you to talk with several people before making this big decision. If you go to the CCFA website, they should have links for support groups (www.ccfa.org). The members were really welcoming to me, and they even had a lending library of books and magazines. Good luck.

Yeah, I read about the pouchitis and it scared me. To go through all that surgery and recovery only to get pouchitis and maybe end up with an ostomy anyway. When I feel horrible, I want the surgery. When I feel well, I don't. I made it clear to my GI doc that I DO NOT want an ostomy. I'm 25 yo and I don't want to be bogged down with changing it and all that involves.

I've been trying to find a support group but I live in a rural area with small hospitals. Thanks for the link though. I'll check it out. I think I'm at a point that I need support and if I have to drive to the city I will. It's only about a 90 min. drive. People at work ask me how I'm doing and I know they care but they don't understand. I'm researching a diet, gluten free, and I'm going to check it out with my dr. Supposedly, gluten can really cause flare ups in pts. with Crohn's or UC.

Thanks for your reply, it has helped!

hospitalstaph · Dec 12, 2005

I have an appt. the end of this month for a second opinion. My pcp doesn't recommend it. I still haven't made a decision either way. My thinking is if I have no large bowel and my Crohn's spreads then I'm going to be in serious trouble. It I only had UC, it would be a no brainer for me.
Thanks for your reply, I really appreciate it. Everything I've read on the internet is 'go ahead and do it, you'll feel better.' This is major surgery and it's not like they can put it back if I change my mind later.

I'm sorry, maybe I misread your original post but I thought that you said that you already had Crohn's in the small intestine? If you do end up losing your colon, an ileostomy is not the end of the world, particularly if it gives you your life back. Of course, you should not make this decision until you have really tried every drug treatment available.

IF you do not have Crohn's in the small intestine you *MAY* be a candidate for ileoanal (j pouch). You are absolutly right that this is major surgery and that they cannot put it back. If the pouch fails, and if you have Crohn's of small bowel it likely will, you would lose the entire area of small bowel used to make the pouch. Although the last section of the small bowel is not as involved in obtaining nutrients as the first part, it is still important and you don't want to lose it. In pouches attempted on Crohn's patients with disease of the colon only, 35 to 40% fail. And this is with no disease in the small bowel at the time of the original surgery. This means that the patient ends up with an ileostomy, another major surgery, and a significant amount of scare tissue.

Please, don't think that I am trying to rain on you parade! I just see that you are only 25 and I really feel for your situation. I hope you get the answers that you are looking for. You may want to get a 2nd op from The Cleveland Clinic.

T

tcdtx · Jan 2, 2006

I am 24 now, and I had my colon removed when I was 21. I had UC for 2 years, and it turned into toxic megacolon, and I had to have emergency surgery and an ostomy. Luckily, the doctor was able to make a j-pouch a year later. I have been doing great since then. I was miserable with the UC. This is a major surgery, and I don't think you should go with just one doctor's opinion. Like you say, because you have Crohn's in the small bowel, a colectomy may not be best for you. If you live in Texas, I recommend Baylor University Medical Center in Dallas. People come from other states to have that particular surgeon. I live in a rural community as well, so I did not have access to a support group either.

I can tell you from personal experience that an ostomy is not the end of the world. You would be surprised at how much better I felt after getting the diseased colon out of my body. I was already in nursing school when all of this happened. This experience has made me want to become an Ostomy Nurse. I just finished my ADN, and am going to transfer to earn my BSN. I want people, especially young people, to know that having an ostomy is not as scary as you think it is. There are a lot of misconceptions.

Definately check out the CCFA website. There is a lot of good information there. Also, check out http://www.greatcomebacks.com/us/index.html if you're in the mood for a little inspiration. I am actually the scholarship winner for this year. I was able to meet many people involved in the CCFA, and everyone was very supportive and kind.

Definately do your research, and don't rush into this. If there's anything I can do to help you, or if you need more contact info, feel free to private message me.

Teresa

bethin · Jan 5, 2006

I'm sorry, maybe I misread your original post but I thought that you said that you already had Crohn's in the small intestine? If you do end up losing your colon, an ileostomy is not the end of the world, particularly if it gives you your life back. Of course, you should not make this decision until you have really tried every drug treatment available.
IF you do not have Crohn's in the small intestine you *MAY* be a candidate for ileoanal (j pouch). You are absolutly right that this is major surgery and that they cannot put it back. If the pouch fails, and if you have Crohn's of small bowel it likely will, you would lose the entire area of small bowel used to make the pouch. Although the last section of the small bowel is not as involved in obtaining nutrients as the first part, it is still important and you don't want to lose it. In pouches attempted on Crohn's patients with disease of the colon only, 35 to 40% fail. And this is with no disease in the small bowel at the time of the original surgery. This means that the patient ends up with an ileostomy, another major surgery, and a significant amount of scare tissue.
Please, don't think that I am trying to rain on you parade! I just see that you are only 25 and I really feel for your situation. I hope you get the answers that you are looking for. You may want to get a 2nd op from The Cleveland Clinic.
T

You weren't confused, I was. I had an appt. with my GI doc on Thurs. and a second opinion on Fri. Turns out that I misinterpreted information. My Crohn's and UC is contained in my large intestine. That makes me feel a little better if I do turn to surgery. My doctor is trying to get my insurance to approve Humiera but she said she has had no luck in getting this particular insurance to approve Humiera in Crohn's pts. She said if they don't approve it that she knows another GI specialist at the University of Chicago that has had luck. I would have to go there to see that doc but I don't mind. I love Chicago and it's only 5 hours away. It could be a mini vacation.

If I don't get humiera I am leaning towards surgery. My GI dr. and the second opinion dr. both concur that I'm running out of options and that surgery may be the only way to go. Remicade was working for me but I developed extreme hives. I ended up in the ER one night due to tongue swelling suddenly. She doesn't want to put me on steroids because I'm also taking Imuran and taking both can cause osteoporosis in the thirties. Plus, I've gained 50 pounds on prednisone alone.

If I do the surgery I can do it after I'm done with my classes this semester and have summer vacation to recover. I'm hoping to get into the nursing program for the fall but I can live with an ostomy while in nursing school. I'd be pain free!

The pouchitis still concerns me. The odds are high that I will get it, but I guess it depends on how bad it is. I was told I have less than 2% chance that Crohn's and or UC would reappear. That's really good odds.

Is there a certain doctor you recommend at the Cleveland Clinic? I've heard alot about this place -- all good.

bethin · Jan 5, 2006

I am 24 now, and I had my colon removed when I was 21. I had UC for 2 years, and it turned into toxic megacolon, and I had to have emergency surgery and an ostomy. Luckily, the doctor was able to make a j-pouch a year later. I have been doing great since then. I was miserable with the UC. This is a major surgery, and I don't think you should go with just one doctor's opinion. Like you say, because you have Crohn's in the small bowel, a colectomy may not be best for you. If you live in Texas, I recommend Baylor University Medical Center in Dallas. People come from other states to have that particular surgeon. I live in a rural community as well, so I did not have access to a support group either.
I can tell you from personal experience that an ostomy is not the end of the world. You would be surprised at how much better I felt after getting the diseased colon out of my body. I was already in nursing school when all of this happened. This experience has made me want to become an Ostomy Nurse. I just finished my ADN, and am going to transfer to earn my BSN. I want people, especially young people, to know that having an ostomy is not as scary as you think it is. There are a lot of misconceptions.
Definately check out the CCFA website. There is a lot of good information there. Also, check out http://www.greatcomebacks.com/us/index.html if you're in the mood for a little inspiration. I am actually the scholarship winner for this year. I was able to meet many people involved in the CCFA, and everyone was very supportive and kind.
Definately do your research, and don't rush into this. If there's anything I can do to help you, or if you need more contact info, feel free to private message me.
Teresa

My fears regarding an ostomy are that it will break open when I'm working, bent over a pt. or that a confused pt. will grab it and rip it off.

Did you have any of those problems or fears? Could you notice the bag under your scrubs?

hospitalstaph · Jan 5, 2006

You weren't confused, I was. I had an appt. with my GI doc on Thurs. and a second opinion on Fri. Turns out that I misinterpreted information. My Crohn's and UC is contained in my large intestine. That makes me feel a little better if I do turn to surgery. My doctor is trying to get my insurance to approve Humiera but she said she has had no luck in getting this particular insurance to approve Humiera in Crohn's pts. She said if they don't approve it that she knows another GI specialist at the University of Chicago that has had luck. I would have to go there to see that doc but I don't mind. I love Chicago and it's only 5 hours away. It could be a mini vacation.
If I don't get humiera I am leaning towards surgery. My GI dr. and the second opinion dr. both concur that I'm running out of options and that surgery may be the only way to go. Remicade was working for me but I developed extreme hives. I ended up in the ER one night due to tongue swelling suddenly. She doesn't want to put me on steroids because I'm also taking Imuran and taking both can cause osteoporosis in the thirties. Plus, I've gained 50 pounds on prednisone alone.
If I do the surgery I can do it after I'm done with my classes this semester and have summer vacation to recover. I'm hoping to get into the nursing program for the fall but I can live with an ostomy while in nursing school. I'd be pain free!
The pouchitis still concerns me. The odds are high that I will get it, but I guess it depends on how bad it is. I was told I have less than 2% chance that Crohn's and or UC would reappear. That's really good odds.
Is there a certain doctor you recommend at the Cleveland Clinic? I've heard alot about this place -- all good.

I have heard that Dr Fazio at Cleveland is very good.

I am still alittle confused about your diagnosis. Do you have UC or Crohn's? I believe that in about 10-15% of the cases, they just really don't know which one it is. Is this the case with you? If you have Crohns that is limited to the colon with little or no disease in the rectum, you may be a candidate for ileorectal anastamosis. This involves connecting the ileum (last part of small intestine) to the rectum. No pouch is formed since the rectum is a storage organ. In the event that the rectum became diseased you might need to have it removed and converted to an ileostomy. However, without a pouch being formed, you would still retain the last part of the small intestine. Search the web for more info on this type of surgery, it is done at the Cleveland Clinic. Another option would be Mayo.

Also, have you tried 6-MP (Purinthol)? It is an immunosuppresent and may be an option for you.

I do not have Crohn's myself, but my husband does. He nearly died last year from a severe GI bleed. He did have his colon removed and currently has an ileostomy. He works a very physical job, and does very well with the bag. He was in very good physical shape before the surgery so that has certainly helped in his recovery. He has been offered to possibilty of ileorectal anastamosis, but I am not sure if he is going to do it. At this point, he does not feel that the bag is a big enough deal to go through another surgery (which of course involves risks and another recovery). We see his doctor again tommorow (Friday) so we may talk more about it then.

I wish you the best:)

T

tcdtx · Jan 5, 2006

My fears regarding an ostomy are that it will break open when I'm working, bent over a pt. or that a confused pt. will grab it and rip it off.
Did you have any of those problems or fears? Could you notice the bag under your scrubs?

I didn't have any problems with my pouch. Once you get the hang of how to apply the pouch securely, it's easy to handle. No one ever knew I had a pouch, unless I told them, even people at school. Someone asked me one day how I could wear the jeans and stuff I wore with an ostomy. Plus, the summer before my reversal surgery, I took a vacation with my family down to San Antonio. It was 107 degrees the day we went to Sea World, and I wore a bathing suit (a one piece and board shorts). It looked just fine, and my pouch stayed securely in place all day, through swimming, waterslides, and everything!

There are a lot of misconceptions about having an ostomy, which is why I am going to become an ostomy nurse. It's sad that UC and Crohn's are such "closet" diseases.