A little background; I began with a UC diagnosis, after having many successful surgeries I now have a well functioning J pouch. I go to the bathroom around 5 times a day, once or twice at night. The pouch could no be functioning better, after several scopes my surgeon has said it's one of the best he has ever done (and believe me, he has done many). The problem begins with recurring anal fissures, pain and inflammation in my anal canal. It is absolute agony.
My surgeon has suggested to me that it looks very similar to cases of crohns disease in the peri anal area, however despite several biopsies he found no granuloma, so is unable to give me a definite diagnosis. My problem then, begins here. I have been on prednisolone (20mg) for the past 7 or 8 months to control symptoms while I tried several different treatments, with varying results. Metronidazole offers temporary relief, but does not seem to last long term. I have been taking azathioprine and infliximab, neither of which allowed me to taper of the steroids without further inflammation, so we have since stopped these treatments. I have started taking prednisolone suppositories, 5mg, twice a day. This is the first time I have been able to use suppositories as before it was too painful. These seem to be working to fight the inflammation, and have allowed me to taper to 15mg orally, I am going to try tapering to 10mg next week and see how it goes.
Failing this, my surgeon has said that I cannot continue oral prednisolone for much longer due to the obvious side effects, and wants to perhaps try faecal diversion, temporary ileostomy, in order to rest my bottom.
This whole situation has drained me, and I am scared. I have read studies which suggest faecal diversion does not work for long term relief of crohns symptoms and often the disease path returns shortly after reversal. If this is the case, I will end up with a permanent ileostomy. I will do anything I can do avoid this. From what I have read about the surgery, it is bigger than any surgery I have had to date and I am likely to end up with small bowel syndrome.
Onto my next points. I cannot find any information online with regards to people using prednisolone suppositories long term; logically I cannot see that the side effects will offer a large risk when compared to surgery, and are definitely less than continuing with oral prednisolone.
What about metronidazole? Has anybody had success managing their symptoms with rotating antibiotic use? This also scares me, and cipro and met have been known to cause tendinitis which I already suffered from when I was younger.
It just seems like there is no end in sight, if I do have crohns, why is my pouch in immaculate condition.
I understand that these questions are ones that I need to have a discussion with my surgeon, but, I need to see if anybody else has seen anything similar, and what the outcome was..
Thank you for reading.
