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It's a long story  someone has some hope for me

I suffer from ulcerative proctitis since 2004

After being on Asacol

In 2014 I was put on Azathioprine which put me in remission and could live normal. In 2016 I delevoped HSV keratitis where I developed a cloudy cornea and immediately came off azathioprine  (a mistake which I regret now)

My Dr put me back on budesonide salafalk enemas which never managed to control my colitis and the occasion dose of oral prednisone.

In 2018 during my scope I suffered a perforated bowel which self healed and 2 weeks later was told a polyp containing low grade dysplasia was removed.

Because I had suffered a perforated bowel I could not go on any steroid medicine until the MRI scan shows the perforation had to wait 2 months.

In 2019 I was told by my Dr a colectomy was the best option but I declined and a scope in late 2019 showed a villous adenoma no dysplasia

I was then put on entyvio enfusions in April 2020 the meds worked slowly and was able to function go on bike rides with no urgency could eat normal a sigmoidoscopy show my proctitis had reduced from 30 to 20cm

In March 2021 I had ESD which could not remove the adenoma and showed  low grade dysplasia.

In May 2021 while waiting for a appointment to see if the TAMIS procedure could help my flares were returning so the ibd nurse gave me some asacol compress foam and salafalk enemas along with liquid budesonide enema, but I only took the asacol and salafalk enemas twice as it burned my inside rectum area, the budesonide was fine.

My urgency was getting worse and it was impossible to sometimes hold and had to dash to the toilet

In August 2021 I developed some lumps outside my rectum area which I assumed was hemmeroids for which I was given creams to put on

By mid September 2021 my left buttock area was numb and sore and I started pooping brown and mucus and the pain was getting worse so I went to A&E where I was cleaned up as there was a lot of pus inside and a CT scan revealed  a perforated rectum which did not seal so I had my bowel pushed out my side (colostomy) which I hard to managed was in hospital for 3 weeks

Had my appointment December  2021 hoping to get my bowel removed then a temp ileostomy and then either a J POUCH or BCIR

I can't have JPOUCH either as I have scaring in the anus area and because you delevoped a fistula running down from your Spincer muscles there is a possibility you have crohns and no BCIR either

He did exam my bottom and it's healed much

I'm booked for a MRI Scan and Scope. If the anus scaring skin is soft (not hard) then a J Pouch is possible


If no Crohns is found then BCIR is possible

Anyone been in this type of situation and had either a JPOUCH or BCIR

I'm 35 yrs old and I can't spend the rest of my life with a ileostomy bag .

Original Post

The BCIR works really great for some people. Others like me, it does not. I had an ileostomy transferred to a j-pouch. My pouch failed in 2010, and in 2011 I went to a permanent ileostomy. It worked great for awhile, but I started having a lot of leakage issues, so I gave the BCIR a go. It was a HUGE surgery. You’re literally cut vertically and horizontally. You have to stay in the hospital for 3 weeks after surgery, and that was really hard for me. Afterwards my body rejected the BCIR. I had constant pouchitis and blockages. My stomach was so swollen that I looked 8 months pregnant. Finally I had the BCIR removed in 2018, and went back to a permanent ileostomy. I’ve had 3 surgeries since, because the BCIR surgery so weakened my abdominal muscles that I have had 2 surgically repaired hernia, and two prolapsed stomas. The general rule is that if you have ulcerative colitis the BCIR might work for you, but if you were diagnosed with Crohn’s then it will not. I was originally diagnosed with ulcerative colitis, and it worked horribly for me. That’s not to say it will be that way for you, but it’s a huge chance to take, and a major surgery.

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