Please tell me i can go for reversal again, help please

Hi healingwell community... My saviours... I was on here since 2008 UK ( west Midlands) ....life had taken me by surprise.... Not to be too long.. Uc since 2 years, accompanied by anklyosing spondlitis and pyoderma gangrensoum),, the arthritis and skin condition are under remission with biologics,,

however the colon couldn't stand a chance, after i exhausted every other option i had to have a stoma but the surgeon didn't remove the rectum in case if i reverse in future,,, and it did happen and had reversal for 3 years ( best 3 years of my life).....

Anyway,, pouchitis kicked in,,, was on antibiotics then heald, then flared up again then antibiotics, then steriods enemas, (given that im on adalimumab already) and was on antibiotics for very long time..... Narrowing occured 3 times and had to be dialated,,, then an obstruction / loop happened in small bowels alongside the chronic pouchitis that flares up everytime i stop the antibiotics.......


So the surgeon had to fix the diversion/ obstruction / loop (dont know which term) and while under surgery he took the chance to check if i have developed chrons and literally the surgeon words were i went in by the camera 2 meters into small bowel with no single sign of chrons so it is definitely pouchitis and a loop / obstruction in the small bowel.... Now he fitted me with temporary ileostomy.......... After the final camera test that i had recently thet still found inflammation in the pouch even that nothing is going through it ( taken biopsies to make sure if it is colitis or just inflammation because of inactivity) it turned oit to be severe colits specially at two of the j pouch joints, the third one is ok...... Now the plan is trying a new biologic called Tofacitinib, sold under the brand Xeljanz.... This should be the last chance to treat the pouch and consider reversal... It has now been 2 weeks since i started and usually effectiveness should be reached within 2/3 months of use...... Now my question is if this biologic didn't work is there any chance thar i can still have the reversal....... Is it risky to operate on the pouch while thier is internal inflammation (the outside joints and bowels are ok according to the MRI).... I really cant stand a chance living with stoma....i have developed a large hernia at the stima sight and the stima is in a dip so it makes appliances very hard to have a good fit.... Im also schizophrenic & suucidal i cant stand chance,,, if the biologic failed then they would have to repair the hernia, sew the back end and create a permanent stoma using strong hernia belts for a year as the wall is too fragile after i had 5 surgeries on that place.......... So can i have the reversal if the pouchitis presisted? I would rather live with pouchitis rather than a permanent stoma... The reason is that i have paranoid schizophrenia im always paranoid if it leaks, smells or burst,,, as it does happen now.... If anything is not clear please let me know and i ll explain further...... Im on many medications fkr mental health too. Thnx.. I appreciate any reply....... Would the surgeon take such risk??.. Also if the bilogic failed can fecal transplant be an option or do you think it is trivial healing effect in comparison to the powerful biologics..... Thanks again

Post Edited (Darius30) : 8/23/2020 11:56:18 AM (GMT-6)

It's hard to say what the options are but I will say that you need to stay calm and not make rash decisions or worry about the worst. You can consult with multiple surgeons and see what they say. If you have issues at the connection points, it's possible that a surgeon who specializes in redos can help you by scraping the cells from the surface. Hopefully, you respond to the meds and stay in the clear of symptoms and you can just have a simple reconnection. Just remember, you need a very experienced surgeon to get the best results. It sounds like you have a lot of considerations and you want to make sure you do everything right so you can focus on other things that are going on in your life.

With the hernia and past surgeries, you really need to make sure you do the safest and best thing for you, even if it were a ileo. They could move it to the other side if needed. A real ileo functions way better than a loop. I think you would have a lot less stress with one but I know it's not what you want, just something to keep in mind in case it came to that. Try to think positive.

Bumping this back up for more attention. Not sure, a complicated scenario and I'd defer to a colorectal surgeon with more familarity with your case history.

I understand your fears. But getting rid of my pouch and getting a permanent ilio was the best thing ever. I finally got real sleep. No regrets.