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 .