Unfortunately I don’t have an encouraging response. My experience was similar to your husband. I went to an end ileo and left pouch in place.  First few weeks were good then I began getting increasing amounts of excretions from the abandoned pouch, pink tinged very thin mucus. Very hard to control. I did not have spasms, we tried various meds, antibiotics and UC  meds and nothing really helped.  6 months of that was enough and I had the pouch removed.  Everything good after the pouch removed. What is happening is likely diversion colitis. Some people do well with the disconnected pouch others like me don’t.  The one med I didn’t try was a formula of long chain fatty acids some people have relief with this. The answer, long term, is removal of the pouch

Yup, same thing happened to me. It's diversion colitis. Short chain fatty acids have helped.  Saw scope pictures before and after. Still inflamed but not as bad as before and at least my symptoms improved. Only real solution is to reconnect or have pouch removed

In my case my pouch was discounted due to severe pouchitis do I'm doing Entyvio and hopefully in 2 weeks I'll reconnect. I have a 50 50 shot. I really don't want pouch removal surgery.

I may have encouraging response, fingers crossed. I had a temp loop ileostomy formed 10/22. The second week after surgery, I had crazy discharge-mostly mucus-discharge each night I slept for 1 week. Everything has quieted down now and some mucus will come out when I am on the potty here and there (maybe 3-4 times per week) but the amount is much much less. I never had any spasm feeling or pain tho that I know of (since I was always asleep when this was going down). This recovery has been really slow. I also have stricture issues and still have the pouch in. I am currently in Cleveland to see what the thoughts are in saving the pouch. I am not sure where I stand with my feelings on that right now. Since this recovery has been so rough for me and I am burning through my sick time at work, I am hoping I can live with the pouch in and the ileostomy for a year or two at this point. You never know what is going to happen and that is what makes this all so scary-right Ally?!?  Best of luck to you and your man!!

Thanks for the replies.  How long were your recoveries after the surgeries?  I just can't imagine him having to be cut open again and having to heal that big of an incision again so soon, but I know that it is inevitable at some point.

AllyKat,  where do you get short chain fatty acids?

Lori726, that is so interesting bc his mostly happens at night too, like literally as we turn out the lights...why??  He started Flagyl a few days ago and it has really improved things, but he still has to run to the bathroom several times during the day to get it out.  

Do y'all have crohns?  his doctor is giving him the option to make a new pouch (a new one bc the one he has now is in such bad shape) or go to an end ileostomy in 6 months, but I fear all of the same issues he's dealt with the past several years will resurface.  What are the reasons the two of you have decided to reconnect pouch rather than end ileostomy?

 

 

I am not decided 100 percent either way on whether to keep pouch or get end ileostomy. All I know is I am almost 5 weeks post op and still a mess physically.  My surgery went awesome but recovery has been SLOW. I had 2 fistulas/abscesses in June and was all ready to give up the J pouch and do permanent ileo. To make really long story short, my local doctors didn't know what they should be doing with me so they recommended Cleveland Clinic. I saw Shen about 5 years ago for stricture in intestine leading to my pouch. My bowel symptoms never improved despite having scopes to stretch the stricture and I never had abdominal pain so I didn't think the stricture was a real problem. A few months later, I was re-diagnosed as having Crohn's and started on Remicade by local surgeon. Crohn's?, not Crohn's?-i don't think anyone really knows. Fast forward to October when I had my temp ileo done (recommended by surgeon at Cleveland Clinic b/c my physical and mental status really declined since June). Anyway, he (Dr. Gorgun at CC) goes in there and said my pouch was so enlarged b/c of this stricture and that he believes all the pressure caused the fistulas/abscesses. I have not spoken further with anyone on this matter so I am just curious to see what he will say at my post-op visit on Wed. There is no way I want surgery again in the next year but you never know if/when things will go awry so who knows what the future really holds at this point. Did your husband have any interventions for his stricture(s)? And how did the stricture become an emergency?-did it totally block off movement of GI stuff? All I want for Christmas is a nice new colon...I wish...hahaha.

Lori726,  your story is so similar to my husband's, minus the fistulas/abscesses, which he hasn't had since the first few years of having jpouch.  He's always had moderate problems with jpouch, but the strictures started about a year and 1/2 ago (we believe it was stress-related--big move, new baby, finding jobs, death in the family, etc).  Since then, he has had more days a week that he can't eat than he can because nothing would pass through and he was in such pain.  his stomach would get so distended, it was so scary.  He was hospitalized once earlier this year for fear of rupturing.  After that episode, he finally gave in and started Remicade, which he had refused for years.  It didnt work at all, and it was after that that he decided surgery was the only next step.  He's had multiple scopes over this period with stretching done to help strictures, but I believe they only made matters worse bc of more irritation=inflammation.  After the scopes and this last surgery, the Drs have all said that his small intestine is majorly enlarged bc of he continued blockages.  

Are you still in hospital, or just staying in Cleveland to discuss things further with the dr?  My husband was discharged 4 days after his surgery and we're back in NC, which is frustrating bc he's not getting many answers to his current state right now.  None of the issues he's experiencing now were brought up before his surgery, even though they knew we were concerned about having a temp ileo for these reasons.

My recovery for this temp Ileo has also been hard. Physically and mentally. It was done lapro so I was taken by surprise it was so hard. I also had a Ileo for a year 15 years ago so mentally that surprised me as well. I think some of the physical had to do with my age 63, and the inflamation. I too said no more surgeries but I so hate this bag, and now that I have this diversion stuff thrown into the mix, pouch removal oh no no no that's one surgery that I don't think I can ever do, so my only other choice was a bio and reconnect. I do not have CD Just pouchitis. 

I get the fatty acid suppostories from my Dr at Cornel. The pharmacy that makes them is on 1st and 71 street I believe. They are approx $100 insurance does not cover for a month supplies.