Needless to say i'm devastated. I am praying that I can get my small intestine healthy (literally just got back from the hospital after two days and 4 units of blood later) so I don't have to have a colostomy bag forever. I am honestly at a loss for words and I feel like my whole surgery was a waste. Anyone else living with Crohns that has a j pouch and successfully (so far) kept their j pouch?
I think it's best if you ask this on j-pouch.org. We have probably 6 active posters here who have j-pouches. I am so sorry that you're dealing with this. Was the pathology always consistently UC? ks1908 has a jpouch and he has chronic pouchitis, which they sometimes call crohn's and he's treating it with medication and has kept his pouch.
We had a poster on the ostomy board who had to be temporarily detached and got reattached with good luck. She's also treating with medication. Haven't seen her since she reconnected:
/www.healingwell.com/community/default.aspx?f=33&m=3554897&g=3555083#m3555083
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish
We had a poster on the ostomy board who had to be temporarily detached and got reattached with good luck. She's also treating with medication. Haven't seen her since she reconnected:
/www.healingwell.com/community/default.aspx?f=33&m=3554897&g=3555083#m3555083
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish
Post Edited (notsosicklygirl) : 5/3/2018 6:19:55 PM (GMT-6)
Are you on antibiotics or Biologicals? They both work well for my jpouch. I’m currently on Stelara and it’s going well.
There are MANY people on jpouch.org that have chronic pouchitis who live very normal lives but take medications.
I’m doing much better with chronic pouchitis than when I had my colon and UC. I treat my pouchitis aggressively.
Keith
DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014
Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226
There are MANY people on jpouch.org that have chronic pouchitis who live very normal lives but take medications.
I’m doing much better with chronic pouchitis than when I had my colon and UC. I treat my pouchitis aggressively.
Keith
DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014
Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226