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Living with crohns disease

Hi my name is stacey. I was diagnosed with crohns disease in 2018. I have been on azathioprine for over a year now. Its working and keeping the inflammation down but last year when I got Covid I ended up with an abscess in my bottom area, coindedence? I don't know, which then turned into a fistula and requires multiple surgeries. I am currently recovering from my second surgery and now have a tube instead the fistula to drain and a seton . What a horrible disease this is and I wouldn't wish this on anyone. I ask myself "why me"? Why have I ended up with this. "am I being punished"? I break down alot and cry, not only this but the stress of my son too which probably isn't helping either. I joined this to tell my story as I feel I am suffering alone. Anyone else on here got problems with fistulas too?

  1. Thankyou for your lovely comment. It's comforting knowing I'm not the only one going through this. It's awful. I actually realise how many people are actually going through this. I'm hoping my next surgery (glueing the fistula) will fix this but apparently fistulas can re occur which is worrying me. I hope you are okay and get the help you need too, wishing you well ❤️ my surgeon is brilliant she's trying her best to fix me x

    1. Are you on medication? X

    2. I’m so relieved to hear you have some good support like your surgeon. I’m currently on Prednisone because I quite recently had a bad flare and was in hospital for several days and then after the course of prednisone we will be looking at another biologic to go on! But there are quite a number of different medication options available for IBD but not all of them work for everyone. I’m having quite a hard time on the prednisone to be honest, I’m having quite a lot of side effects and also I’m not sure how well it’s working now but I have to tapper off it slowly as you do with oral steroids. Anyway it’s lovely to meet you, Stacey! Thanks so much for your well wishes and I hope that the glueing of the fistula all goes successfully for you. Try not to worry about what could be, I know it’s so hard, as trust me I’m the biggest worrier, in fact worry and stress for me are massive triggers for my IBD, so I always try to stay in the present moment and try not to think too far ahead and I also try to stay positive about things, even though some days it literally feels like there’s Nothing to feel positive about lol. But there always is if you search for it and use those positive thoughts as affirmations in your mind ❤️

  2. Aww Thankyou, so sorry to hear you're having a hard time on the medication, hope you get the right one suited for you. I was on inflixamab before and it didn't work as my body created anti bodies to it so I know what you mean by not every medication works for everyone. Hope you feel better soon and the side effects subside. Nice to meet you too ❤️

    1. Hi I can literally feel your pain. I've had Crohn's for more than 34 years and 32 of those with perianal disease (fissures, fistulas, abscesses).
      I think all of us go through that phase of "why me", I know I certainly did, but with the many advancements nowadays, you may not have to suffer. I have had numerous surgeries for abscessing fissures including setons. Has your doctor suggested trying other biologics?
      I no longer have abscessing only because the last solution for me was an ostomy and hopefully, it won't lead to that for you but you are definitely not alone.
      I know people who have had temporary loop ostomies to divert waste from the rectum to let it heal for a year or two and then reverse the ostomy. Sometimes that helps.
      Please let us know how you get on. Hopefully your glueing goes well. Sending happy thoughts
      Vern - IBD Team Member

      1. Aww bless ya! How is life with the ostomy bag? Is it okay? I'm wondering if I'm going to need one as the tube they put in the fistula has just fell out, so I don't know what they're going to do next. This disease is so mentally draining I'm getting so fed up.

        1. Yes, living with IBD is draining on one's body and emotions. How are you doing today? How's the fistula? When will you find out if you need an ostomy bag? We're all here to offer support. I hope your weekend goes well and is pain-free. Hugs!--Traci, UC-IBD Team Member

        2. I agree with you, it is totally draining. My life now is different with the bag but only in the sense I no longer have to rush to the bathroom, nor do I have pain anymore either with flares or perianal. I just need to make sure I have to take extra bags when I go out plus a change of clothes just in case of a leak. I use to have anxiety about leaking but I don't anymore.
          I had a few of my setons fall out as well, but that's not necessarily bad. They are designed to fall out as it heals. I even pulled one out once because it came untied and the Dr said to, so that was a weird feeling.
          I think we all have that fed-up feeling, but you'll get through it. You'll get into a groove and have a new normal. You got this.
          Let us know how you get on, please.
          Vern - IBD Team Member

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