Maryl, the decision to give up one's pouch and move to something else, whether an ostomy or a BCIR, etc, is a very personal one. Only the person who's suffering knows when he or she has had enough. I had my jpouch removed and a permanent ostomy a year ago. For me, gaining a sense of control and participating more fully in my life became more important to me than trying to make my pouch work. I'd suggest your son speak to his surgeon about what it would be like to go about pouch removal and how it would pertain to his life. Is his doc willing to perform the procedure? How many pouch removals has he done? Was your son's overall experience with his temp ostomy a positive one? I wish him luck with his decision. He's lucky to have your support!

Me. 

Been two months... I had my pouch removed November 9th 15. 

I am in a good place now. 

No pain.  No running back and forth. 

I personally made the right decision. 

But it's just another way to deal with it and so far I have had no problems adjusting.  The pouch was not for me and now that I've gone through it I know it.  

Everybody is different.  Of course.  But for me... Like I said it was right for me. 

I do think know what kind of information you are looking for.  I am more than twice his age.  At 33 I don't know what I would do.  I know at 59 I was tired of the constant urge and what I called monkey butt that was so painful and it was almost a constant thing.  The urge to go was constant day and night.  Work and home.  That's all in the past.  I now have to adjust to the ileo.  Which is going quite well.  

Like I said I am in a good place.  My health and weight is coming back along with my strength and stamina to make it through a full days work and more. 

I never had pouchitis.  Or anything.  I was one of the 20 percent where it just does not work.  I had a healthy pouch.... Even the day she took it out.  She could find nothing wrong.  I had it for a bit longer than two years. 

It never worked the way it was supposed to. 

That's my story. 

If you need any more info your more than welcome to pm me anytime. 

Richard. 

P. S. 

As lambiepie said.... It is a personal decision.  

thanks for the input - I really appreciate it.  he was hospitalized Friday for dehydration , came home yesterday.  this morning he had a fever 101.7 - two tylenol and it broke.  will have to place a call to dr to see what to do next

MaryL, you have already received great input. I myself continue to struggle with this decision. I am in year 29 with my jpouch, for the first 19 it worked reasonably well with pouchitis bouts approximately every 18 months (never actually counted that's from selective memory might have been a little more or a little less) but I eventually learned to recognize their onset and therefore medicate and ward the impending dehydration that would otherwise happen. then about 10 years ago the pouchitis became much more pernicious, more frequent, say every 3 months or so. my new doctor (I had relocated across the country) amended my dx to crohns and wanted to put me on Remicade (similar to Humira). I resisted because I didn't want to be on a med that had potential side effect of cancer or immunosuppressive, etc. But back then Remicade was still relatively new, now it and its ilk are much more widely used and there is much more familiarity with them as well as my own understanding that while the thought of using Humira, Remicade or any other biologic sounds very intimidating its less so if you fully wrap your mind around it, ie the stats are impressive for success vs potential side effects. that's a long story to I finally started Remicade which worked for a couple of years, then I switched to Humira and have been taking that for I think 7 years now. I am glad I still have my jpouch. its not a perfect world but I personally am not ready to contend with managing an ileostomy but accept the reality that one day I may have no choice. regarding immunosuppression, I visit friends in the hospital I travel a fair amount by air, and indeed the first 5 or 6 years I seemed to incur 3 bad colds a year, something that I almost never did before, presumably due to my hyperactive immune system, but now I seem to only get one or two colds. I get my flu shot annually like a religious event and continue to dodge that bullet. I am also as attentive as I can be to washing my hands especially if I'm out and about and touching public surfaces. not to be too OCD about it, I know people who hand sanitize like its a religion but I rarely do that.

long story short I can see and feel his frustration. if I'm candid with myself, there is no doubt that my life would have been different without the complexity of having lost my colon, but it is what it is, and personally for me I'm not convinced that an ileostomy would make it better. butt many people do fantastic with ileostomys and maybe for your son it would be a better choice. I would encourage him to talk to other ostomates. we recently had Collin Jarvis, a UC Berkley ostomate who is aspiring to be an Olympic athlete come to our Team Challenge fun run and someone like him would be a powerful testament of what can be. more of his story can be found here: http://www.ucjarvisrun.com/

I wish you both the best of luck and better health in this new year and beyond.

dewey

I had my 15 year old pouch removed in April 2014 at 34 years old.  My doctors were all in agreement that I needed to take it out.  I ended up with Crohn's of the cuff and fistulas.  I did Remicade and I would totally do it again to avoid surgery!  But after 2 years I was not able to be on it anymore and was out of other drug options.  Thus, the pouch had to come out.

I'm doing great with my perm. ileo but it was a huge adjustment for me (emotionally and mentally).  It was the hardest decision of my life!  I love being pain free and medicine free.  But it took the worst of the worst to get me to make that decision.

Best wishes for good health for your son!

Laura

Look into Entyvio. It only releases in the gut. Little to no side effects. After a pouchitis attack that almost killed me in the spring and I had to have an emergency ostomy again, this allowed me to reverse back recently to my pouch. This is the newest drug out there, IV every 8 weeks, and I am so fortunate that it was available to me. Good luck to your son.

Our insurance will only cover Entyvio after trying Humira and Remicade.  My son seems to get sick often so having him healthy enough to do these has been a challenge.   Thank you so much for the reply.

I'm sorry, I hate being held hostage by insurance! I hope he gets well ASAP

ps I got hit with that stomach virus. I also ended up in the ER and it took almost 10 days for things to settle down. I spent close to 100 dollars in cvs on every anti diareah drug and popped so many things at once and it still was literally running out of me.

MaryL, I suggest that you have a good discussion with your son’s GI about the repeated infections that he is having and perhaps get a referral to a doctor who specializes in treating those conditions. Another thought is to get a thorough medical examination at some place like Cleveland Clinic that routinely deals with complex medical problems. While going to the bag is an option, I personally would attempt less drastic measures before taking that route. If it finally comes to removal of his j pouch, you should check out the k pouch and closely related BCIR which do not require the external bag with its associated issues. Best of luck with whatever you decide.

After 3 1/2 year of chronic pouchitis I had my j-pouch disconnected and an end ileo created.  I continued to have problems and at age 31 had the pouch removed.  The best decision of my life.  I have not had a single GI issue since (and that was 13 years ago this April).  I have had two babies and I live a very normal life with no drugs at all.  Happy to answer any questions - best to PM me so I get an email as i don't visit her often.