I read about too many complications with Jpouch

Hi Becky,

One thing for certain is that the majority of people with good j pouch results do not post on this forum. This is an excellent place to learn what others have done to solve or minimize problems with their pouches. Of course, there is the relatively small chance that a j pouch will have to be removed, but most problems can be dealt with without removing the pouch. I had a j pouch for 32 years and did experience problems with frequency and butt burn, but stayed with it because I strongly did not want an ileostomy with its quality of life issues. Three years ago, my pouch had to be removed due to high grade dysplasia in the anal canal and I opted for a BCIR (similar to a k pouch) and the results were very good. If you go for the ileo, there will be no chance to try the j pouch sometime in the future, but the k pouch and BCIR options would still be available.

While the decision is yours alone to make, I would go first for the j pouch and visit this board often for any questions you might have. I know nothing about your surgeon and would inquire about how many of these procedures he has done and what his success rate is. Best of luck with whatever option you choose

Bill

Well, of course you will find many people here discussing complications. This is a support group. People without any problems have no need for a support group. Go to an ostomy support site and you will it full of people asking for help with complications and other problems.

The reality is that there is NO option that is without risk or will restore what life is like with a healthy colon. If you need a colectomy, the j-pouch is currently the gold standard. This is because it offers the best quality of life of all the options. That does not mean it is perfect or that it is guaranteed to be successful. If you choose to go with an ileostomy, that is OK too. The satisfaction rate for ileostomy is similar to the j-pouch. You just have to deal with the appliance and have the supplies with you wherever you go. The main issue with the j-pouch is the prolonged adaption period, which takes patience.

The choice is yours to make!

Jan

For you to be stalling or having the option for choice, you are one of the lucky ones.   My advise, don't do it. If you can manage with meds and diet changes than you are one of the lucky ones. I was a hour away from death when my surgeon saved me. It was his decision.  My entire colon was perforated.   He said if he hadn't seen me when he did, I would not have been here. 

I would ask your surgeon for referrals to his patients. This would be an immediate and tangible resource for you. As others have said naturally you will on this and other places like this on the web read about problems/complications. Those who do great largely don't have the need or desire to participate on the web. I would say this to you Becky given your reservations about both procedures is that as you begin this process, presuming you do a two or three step procedure you will have the opportunity to try out an ileostomy. I have a friend who because she is friends with me and a couple of other jpouch patients that have had less than perfect outcomes that she will keep her ileostomy rather than manage two more surgeries. As Jan mentions the statistics are a better, clearer measure of success rather than selective reading on the internet. Good luck with your journey.

I felt better with ileostomy. I was 21 at the time and was encouraged  to get rid of it and move to J Pouch by my mother.  

I have Dr Macrae and she is one of the best in Canada for these surgeries. I am having surgery by her tomorrow am and confident in her work. I had her colleague 12 yrs ago who has moved on but Macrae has done many many of these surgeries. My pouch is being removed after 12 yrs but issues over past year or so has taken me to this choice.  You are in good hands!! I might see you on the 14th floor ��

Fosty, good luck today with your surgery.  Thank-you for your reply.  It makes me feel better that you say Dr. Macrae is one of the best.  It's nice to know she does reversals also.  Take care.

I also had Dr Macrae .She is one of the best..I had emergency surgery to have my large intestine removed in May of 98 and J-pouch in August of 98 ..I haven't had much problems with my pouch itself..Only in the last few years I started developing symptoms almost like I had UC again but not as bad....I went to see dr Macrae and she thinks I know have Chron's from my pouch down ..And have developed a fistula also..I am on Remicade for now ..But might have to go to a permanent ileostomy of the fistula doesn't go away..if I didn't have a fistula though I would keep my J-pouch because it is in great shape...You are in good hands with Dr. Macrae Good luck!

My experience has been 90% positive. I've had a few problems over the 17 years I've had the pouch, but they were resolved each time. Of course it's your decision, and outcomes do vary, I'd do it again in a second. I have a totally normal life 99.9% of the time. And that's way better than one day with UC.

 I say this as I'm taking the morning of because of a partial bowel obstruction. It's not a big deal. I know how to fix it and what not to do in the future. And still I feel confident in my choice. I hope you find what you need and make a choice that fits you.

My two cents. 

I was in your position. 

I went with the pouch. 

If it has to be removed.... Your colon...  try the pouch so you have no regrets.   I don't regret it.  Even if I doesn't work you know you tried it. 

Richard. 

Becky,

You have gotten great responses from some of the best contributors this forum has to offer. This is a scary place to go for answers because most of us come here with problems. Most people with ileostomies and pouches feel great and are out leading their relatively normal lives (like my friend and her grandfather) and are not stuck at home or in doctor's offices and bathrooms (like me.) 

I would advise you to get the best doc you can find with whom you are comfortable and who does the most of your operation in your area. Hopefully, they will also operate out a hospital that is experienced with your operation and also has a high success rate. If you decide to go out of your area to get this experience, do so only if necessary and know that doing so introduces it's own complications.

Statistically speaking, most patients do well with their j pouch. It is difficult to cite hard numbers as there are very different definitions of success with this surgery. Those who don't do as well with a J Pouch often find out they have undiagnosed Crohn's, or experience complications during the initial removal surgery, or have other serious health problems. So to improve your odds... work with your doc to ensure you have been properly diagnosed, try to have your total colectomy as an elective/scheduled surgery, get good follow-up care, and consider your options carefully if you have other health problems. 

I had to have an emergency total colectomy, experienced post-surgical complications, then problems with my ileostomy, followed by blockages and more surgeries, and then had nothing but problems with my j pouch. Not a great example, but not too bad either -- my success story is that 5 years out I am still alive and able to see my husband and sons every day. Make your decision with your doctor based on your health and your situation and know that there is no "right choice." I hope that you come to realize that is more freeing than it sounds initially.

God bless,

Jennifer

When my large intestine came out, I realized just how much UC was controlling my life. I love my pouch. It is not perfect, but as others have said, I would do it again in a second. For me, the ileo was horrible. I hated every moment of it. I was always sure it smelled, my skin is sensitive and I had inflammation and skin breakdown under the wafer,  and looking at it disgusted me. 

That said, every choice is individual. Good health in your choice

It's certainly not ideal to have an entire organ removed, but then again it's not ideal living constantly with a diseased organ either I don't know why exactly you're considering surgery - Mine wasn't emergency, but I had enough dysplasia that my cancer risk was way too high. I'm going on three years now since surgery, and they been my healthiest three years in a very long time. I would definitely try the J-pouch and you can always revert to an ileostomy if it doesn't work out.

I've only recently had my takedown and a j pouch is the best decisions I've ever made.

No complications as of yet; 3 to 4 BM's per day, sometimes 5, maybe 6, no night time BM's or leakage.

Can go for couple of hours between BM's and never any urgency.

I eat all kind n types of foods, although not spicy hot Asian/Indian food by choice.

What I eat makes little difference to output, although porridge/oatmeal has an effect on output and increase BM frequency.

By choice I don't consume alcohol.

A few days after takedown I did experience the dreaded butt burn, although it was more of an internal burning sensation rather than the more traditional diaper rash; all of which was relieved by use of ilex Protectant Paste.

Prior to life with a J pouch, I was intially diagnosed with UC, which eventually lead to the removal of my colon and for many years I had a Stoma and use of a colostomy bag.