Any one have a diverted jpouch

I did, I had issues for a few years, now I lost my Gall Bladder, Rectum, which was a nightmare since it would not heal , then they took a muscle from my thigh which cause me so much trouble added about 15 ,more surgery's.   Now 6 years later less surgery's but alot of other issues with my numbers all out of wack, so I need a shot for this and that alot, B12, and many other problems which causes me to hurt muscles, tired alot etc...  

 

So yes I feel better since then with less surgery's but with other smaller issues, gets annoying.. But I go this route againm minus the  JPouch,  and Rectum, which the doctor took with out my permission I was there for another surgery and woke up with no rectum when he knew I did not want it out since I never healed well and he knew it, plus he knew  I was against it.   He never helped heal it, I had to go else where...  I asked why he removed it, he since my butt was hairy and it caused issues with my rectum which made zero sense and sounded silly... SO if you have your Rectum never allow them to remove it, unless you have Cancer of it... Ever... That was my biggest nightmare and still cant sit down right with out pain, and my butt looks terrible, looks like The cone heads butt in that movie.... 

Aftre being diverted for over a year due to a leak in my jpouch, i all of a sudden started bleeding really bad from the butt. Shen got me in the next day to scope me and determined it was diversion pouchitis, so he sprayed dextrose in there and plugged me up with a tampon to keep medicine in there. 2 days later i pulled the plug, and all has been fine since. Getting a redo by Remzi Oct 19th.

My son has had one since March.  Hoping to get reconnected by January.  Still waiting on pouch leak results.  The Pope screwed up his testing!  Was supposed to go have MRI tomorrow but due to the Pope being in the city tomorrow I thought it was not a good idea!  Plus if they shut down Penn Station like I believe they will, we would never get home, haha

 

Hi Susan!

It's Lori-so sorry things are not getting better for you. Want to thank you for posting this question. Went out to Cleveland Clinic today for 2nd opinion and they want to divert J pouch with loop ileo to give me a rest from all my fistula/abscess/seton nonsense. They think I am not physically or mentally strong enough for removal of J pouch at this time. I thought of you right away and I can't wait to see if anyone is/was happy with an ileostomy and J pouch still intact. I realize everyone is different but all I remember right now are horror stories on this site from people who kept the J pouch in with an ileostomy. Have you seen your doctor? Have they given you any input as to if the pouch is still making you sick? Keep us posted. Prayers and hugs to everyone suffering!!

I was suppose to see my GI Friday about this situation but too cancelled because of the Pope till next week. I'll let you know what she thinks. My biggest problem is still the fatigue which I can't shake. And it's causing me great anxiety. 

I had surgery to divert to a permanent ileostomy at the Mayo Clinic and she left my j-pouch in on 8/31.  So far so good with no problems from my j-pouch.  I wasn't ready physically or mentally for the big surgery of removing it.  I wanted a permanent ileostomy as had a 8 week nightmare with my temp one between surgeries 5 years ago. My surgeon said that a permanent one would still allow for going back to using my j-pouch in the future but we aren't planning on doing that.  When the waste stopped flowing through my j-pouch my cuffitis and pouchitis were no longer an issue and they said to discontinue treating them.  I really enjoyed cancelling 5 prescriptions, including VSL#3DS, after the surgery.

Good luck to you all.