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Crohns disease perianal disease

Hi all I was looking at seeking others who may have this issue and what treatments they are receiving. To cut a long story short I have tightening of my intestine from inflammation near my rectum/anus area. I have lived with this for years. I generally get the area expanded everytime I have a colonoscopy. Over the years I have been on infliximab, humira and currently stelara. Since last oct though after my colonoscopy things have gone a lot worse. I have found the area has inflammed heaps and it is causing issues for me to go to the toilet. It also makes me need to go all the time due to not much stool coming out at times. My specialist wants to try infliximab again as that used to work for a fistula I had many years back but is unsure on prescribing it until we have a blood test. I was wondering is anyone having similar issues and what drugs they have been using. It used to be manageable for many years but it now seems im at a loss at what is next. He is suggesting to prepare myself for a bag in the future if things dont get better. Any ideas or suggestions from your experience would be much appreciated

  1. So sorry you are going through this. I am on Xeljanz and it has helped me tremendously. Maybe something to look into? Also, there are foam enema steroids that can be applied right to the rectum which can help with inflammation. Ask your GI about it. -Elizabeth (team member)

    1. Thanks Elizabeth I will check these out. Do you know if these foam steroids are better than pred suppositories? I have tried suppositories but find it too painful where as if this is easier possibly being a nozzle it may be easier to apply.

      1. I think it depends on the person. If the suppositories were problematic definitely the foam would seem to be a better option. Honestly, I would just try it out, it's the only way to see if you prefer it or not. -Elizabeth (team member)

    2. Hi, . Sorry you've been dealing with all this and sorry I didn't see this sooner. I know exactly how you feel. I suffered from perianal disease (abscesses, fissures, fistulas) for 3 decades. I tried many different things including multiple surgeries, Remicade and Humira. It would relieve them for a while but always returned. I feel your pain. For me, I eventually took my GI's advice and made the decision to get an ostomy. I just wrote about it here:

      Hopefully, the infliximab works again for you.
      Please let us know how you get on!
      Vern, Crohns-IBD Team Member

      1. Boy, I hope I do not have to get an ostomy. Since March I have had to be in the hospitaln 30 days( not consecutively), had 3 surgeries, 3 picc lines, home health nurses, 2 different ones. The infusions had to be sent to me by Fed Ex, as we live 2.5 hours away from the hospital where allllll of my doctors are. I had a drain and baluses full of antibiotics that had to be made just for me in the lab. The docs were very concerned about malnutrition and dehydration. They said this case was very rare and they hadn't seen another like it. I was diagnosed with Crohn's at 23 and am 71 now. I never had a flare ever before. This flare made up for all I ever could have had. I nearly died. Literally. I had an anxiety attack during one of my 3 stays in the hospital. Came out of the hospital with depression and anxiety. Just felt horrible from top to bottom, pun-pun. I don't see my doc again till 2nd week of Nov. unless something else happens. So far so good. I am stillnafraid of a flare coming back. I could write a book about Crohn's. I so many scans, and other things I don't remember the name of I practically glow. Thank goodness for Medicare and other insurance. I don't see how other people without coverage get medicak care !

      2. Sorry to hear everything you have gone through over the many many years. I can relate to the anxiety and insurance coverage and I do not see how others do it either. The costs are ridiculous.
        I thought getting an ostomy would be the last thing I wanted and up until 2020 I had put it off for decades but with my extensive perianal disease, the ostomy has been the ultimate relief.
        Let us know how you get on.

    3. if the stricturing is caused by scarring from previous active disease, I'd guess there's very little you can do about it other than keep having it dilated to be honest. It does sound like a pain!
      - Sahara (team member)

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