Life after J pouch

Hi, sorry about your situation.  I am almost two months out after j pouch takedown surgery at 45 yrs old.  This was a huge undertaking and life changing process.  It is not an easy road even with the best surgeon.  You should get 2nd opinion and try everything before thinking about surgery.  I had UC for about 10 years and was in remmission using lialda medicine but my colonoscopies were looking worse and worse with dysplasia so before it turned to cancer my doctor wanted me to have colon removed.  I did get 2nd opinion and went ahead with it even though I was feeling great at the time.  

Good luck with your decision.

I remember feeling the way you do now. Was diagnosed at 49 surgery at 50 with Illeo and Jpouch. It's been 11 yrs of mostly no issues with the pouch. I am now going to a permanent Illeo in Jan with pouch not functioning.  I am now 61. If you are healthy otherwise I would definitely consider the surgery for the quality of years you have left. 67 is not old by the standards of today and there's still quite a lot of years hopefully ahead. Your will feel most likely much better then you do now. Good luck with your decision.

A permanent ileostomy might be better for you at your age. It also has a much lower rate of complications.

I also had left sided colitis and had the left side of my colon removed, 15 inches. We thought that was the best course of action since the rest of my colon has always been clear. After surgery as a bit of time went on, I now have pancolitis, it's attacked what's left. Maybe a bowel re-segment is an option? It won't get rid of the disease and can still attack what's left but if it's a bad segment of your colon that's causing your issues, maybe removing that bad section will give some relief for more years to come.

I have never heard of being too old for colonoscopy! That makes no sense for having a disease requiring life long monitoring. 

 

Unless you have other comorbidities that would increase your surgical risk, you are not too old for a j-pouch. That said, the success rate is less in the elderly, but it should be taken on a case by case basis. Subtotal colectomy is seldom recommended, even with left sided UC, unless there is a question about the diagnosis. An end ileostomy is a good option, as it is a simple procedure, comparitively. It certainly would give you an improved quality of life. 

 

Sounds like you need to talk to a different doctor! At the Cleveland Clinic, they have performed successful j-pouches on patients much older than you.

 

Jan

Based on what you have related in your post, surgery appears to be your best choice to get a significantly better quality of life.  If you are in reasonably good health, your age is not a significant factor in having a successful surgery.  Although a j pouch is option worth considering, there are two other alternatives to a conventional ileostomy that avoid the need for an outside bag: the k pouch and the closely related BCIR.  I had a j pouch that failed after 30 years and was strongly against having an ileostomy.  At age 68, I got a BCIR and had no complications with the surgery.  A number of others in their 60’s have also had this surgery.   I can now eat almost anything I want, can go anywhere without knowing where the nearest bathroom is located, participate in my favorite activities and sports, and only need to have a small plastic catheter with me to empty the pouch.  The only exterior evidence of the procedure is a small button hole stoma located below the belt line and covered by a small piece of gauze. The decision to get a BCIR was a wise one for me.  I would encourage you to thoroughly research your options and then select a surgeon who has lots of experience performing the procedure you select.  Best of luck!

Others have spelled out the choices rather well. While it's true that J-pouch surgery is a challenging process (and people are often surprised when they discover what "challenging" means), it's also true that reading the stories here doesn't offer a proper way to assess the risk of a poor outcome. The large majority of J-pouchers go on to have fantastic experiences, and they post no stories here.

 

In order to choose the best path for you, you have to think through several questions: how willing/able are you to work hard to recover from a bigger surgical process? How important is it to you to avoid an external ileostomy bag? How important is it to you to use a toilet in the usual way? How skilled are the surgeons you are willing to consider (based on location, insurance, etc.)?

 

Your current quality of life would be completely unacceptable to me. No matter what you choose, I wish you the best of luck.

Thank you all so much for your replies and encouragement.  I see my doc today so I'll begin the conversation.  I have a friend that had the operation a dozen years ago with no ill side effects so seeing all the complications did set me back a bit.  I would like to avoid a bag at 'most' costs, (won't say 'all' ), but BCIR does sound interesting. 

 

My doc has found polyps at the upper end on two occasions so the best prevention against cancer would seem to be full removal rather than partial.   I am in excellent shape otherwise which is why I want this resolved.  No incidence of cancers, dementia, or heart disease in my ancestors so I could have three decades of useful life in me.

Your doc is more likely to have heard of K-pouch surgery than BCIR - they are quite similar in many (most?) ways, but BCIR surgery is performed in only a very small number of locations across the country.