Hello!  I've had a loop ileostomy for about 10 months now, it was created after I developed a rectovaginal fistula that would not heal.  My jpouch, created in 2008, was ok for a while, then not so great, then really awful with constant pouchitis, so going to the loop ileo has actually been a fantastic relief.  Despite being on Entyvio, the fistula has not healed (it actually got bigger) and my doctor had suggested making the ileostomy permanent.  I am on board with this idea - I'm just wondering about the surgery and the recovery.  Any input from those going from a loop to an end/permanent ileo would be so appreciated:  was this surgery super painful?  Was it difficult to sit afterwards?  What was your recovery time?  My GI said the pain wasn't too bad (after the initial surgical pain) - but I'm having a hard time believing that!  I don't think the ostomy part will be bad, since I have one already - I am worried about the pouch and rectum removal (especially the rectum part).

Thanks so much - Tara

Original Post

Tara, I’m sorry to learn that efforts to save your J pouch have not been successful and that you are at a decision point about its removal.  My situation was a bit different, but still resulted in the need to have the pouch removed.  In my case, I strongly did not want an ileostomy and the need to have a permanent bag.  I opted to get a BCIR, which is similar to a K pouch and functions the same way.  These procedures do not require an external bag and there is a lot of information about them on the internet.  I do not mean to “sell” you on these procedures, but just to say that they are available options.

Removal of a J pouch can be challenging, so you should get a surgeon who has done a number of them.  In my case, removal of the J pouch (which had been in place for 30 years) and creation of a BCIR was done in one operation and I was discharged home with no complications after 21 days in the hospital.  Within three months, I was able to do most of the activities I enjoy and have a very good quality of life. While some people have trouble sitting after their bottom is sewn shut, I did not.  The first few days after surgery were the worst for pain; the pain meds provided took the edge off of it.  Please feel free to send me a PM if you have any questions, and I wish you the best.

Bill

Thanks for that info, Bill - I have researched the K pouch and it is an interesting option.  I'm going back to my surgeon who has done all my surgeries (initial colectomy, jpouch and my current loop ileo), so I'll ask him about the K pouch/BCIR.  My overall concern is this fistula (all internal, at least so far), which seems unresponsive to Entyvio, and I fear keeping *any* pouch is just going to be more troublesome.  But thanks for this lead, and for taking the time to respond - I am definitely adding this to my always growing list of questions!  

 

Tara

I had very little luck with the K pouch, I wish I had just gone straight to the permanent bag in hindsight. If you are truly ready to be done with pouchitis and all those complications, I would just embrace the ostomy. With regards to your initial question. I had very little pain in the butt / rectal area. it was just the usual pain with the incision. I was expecting it to hurt to sit, and all that, but I didn't have that problem at all.

 

Good luck!

thanks Rachel - I love my ostomy, totally ready for it to be permanent...not sure why this surgery of all of them is freaking me out so much.  I guess I'm having a hard time imagining the recovery being easy - i.e., how can it heal when you're sitting on it, etc.....so thanks for your response, I appreciate it.

Tara,

I think the permanent ileo is light years better than my temp one was.  

I just saw this so am wondering if you have proceeded with the surgery or not.  I had a much better recovery from the removal surgery than from the colonectomy/j-pouch creation surgery.

Hi Tara!

I too had a better recovery from my pouch excision than the original colectomy  surgery, but even so, this was a big surgery and recovery.  My pouch excision was not laparoscopic, so it was a full 8 weeks recovery in my case.  I was pretty much good at 6 weeks, but I gave myself the full 8 so I was sure to be 100%.   My abdominal scar took almost 6 weeks to stop oozing .  I was on prescription pain pills for 4 weeks, so no driving.   Yes, my barbie butt hurt and I pretty much only sat straight up for meals the first month and stayed in the recliner or on the couch or in bed otherwise.  It takes a long time, but it does heal!  I too has r/v fistulas and had to go to the perm ileo to finally heal from that.  I'm just about to my 4 year anniversary of my pouch excision and I feel SO amazingly great!  No regrets!

Feel free to PM other specific questions!

Laura

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