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ileostomy

Hi, I have a temporary ileostomy or so I think it is. I have only a metre of small bowel left and we are supposed to have 7 metres. Straight out with it, I think if my Crohn’s comes back, it’s going to kill me. I am only 46 and I last had a flare 5 years ago. I don’t want to die, I’m writing this at 3:00am after keep having to get up every hour and a half throughout the night, I’m at my wits end, but I repeat, I don’t want to die. I have tried azathioprine, Remicade and mercaptopurine, all for my body to reject these drugs. Remicade was my last chance… any thoughts would be gratefully appreciated.


Community Answers
  • joeyskin1 author
    8 months ago

    Thankyou so much for your reply my gp is coming to see me this week and I’m armed with the four other drugs that I could maybe go, I really appreciate your info as I thought I was a lost cause. Although my body has a tendency to reject these drugs in willing to try anything. My stoma nurses are completely useless I have tried to contact them twice since Christmas to no avail. I wish you all the best for the future, and keep your fingers crossed for me

  • thedancingcrohnie moderator
    8 months ago

    I’m so glad it was able to help some. Talk to your doctor and see what he says.

    Also, have you considered seeing a Naturopathic Medical Doctor? Sometimes, conventional medicine isn’t enough. It wasn’t for me at least. I went to a NMD and he discovered I had horrific yeast, bacteria overgrowth in my colon along with virus and parasites. I was in so much pain. He gave me supplements to kill these things off and my life changed.

    Anyways, everyone is so different. I’m just sharing what worked for me. I guess, what I’m saying is sometimes putting your eggs into one basket with conventional medicine may not get you results. Perhaps consider reaching out and getting other opinions from other professionals in the health field, like a homeopath or naturopath.

    Rooting for you!

    Always dancing,
    Elizabeth (team member)

  • thedancingcrohnie moderator
    8 months ago

    I am so sorry you are going through this @joeyskin1. Have you spoken to your doctor about your concerns? There are so many options with treatment nowadays. If you failed Remicade, there are other biologics you can try if your doctor thinks it would be best. I know when I failed Remicade, my doctor had me try many other biologics until it worked. I am now on Stelara.

    Here is a link to treatments and medications. https://inflammatoryboweldisease.net/treatment/medications/
    Read it over and perhaps discuss this with your doctor and press for trying other medications.

    Also, diet is a huge game changer. Have you tried avoiding all dairy, grains and process sugars? It may also benefit you to take a probiotic to boost the good bacteria in your gut. I take probiotics religiously.

    Lastly, I’ve been there. At my worst flare, I truly thought I would lose my life. For the first time ever, I thought my body was starting to shut down. I was wrong. Your body is so much stronger than you think. You may be missing intestine, but your body is the most incredible machine, and it will thrive as long as you give it the right tools. Don’t lose hope. Talk to your doctor, research on your own and don’t lose the will to fight for a treatment that works for you.

    You have a community here that will support you always. Please reach out if you ever need to talk or have questions or need advice.

    I hope this helps some. Press on, warrior! You will get through this!

    Always dancing,
    Elizabeth (team member)

  • joeyskin1 author
    8 months ago

    I have actually got a virus in my body but the hospital and the doctor g.p cant work out where its coming from. IVe had mri x four ct x two blood gases etcetera etcetera. So until this is figured out I don’t know what to do. Fortunately I have no narrowing of the bowel or active chrons disease, they want me to go on these drugs to keep my chrons colitis at bay, so basically I’m bricking it. I dong go to see my gi doctor until march was supposed to go at the end of tho month, but to tell you the truth in fed up with different faces and follow ups, that may sound immature but my head is also trying to cope with having a hysterectomy. I’m taking all your advice on board and have written down the drugs to the link that you sent me, which is much appreciated. I’m going to go on alpro almond milk and change my margarine that I use to see if it makes a difference. Once again thankyou very much for all your advice. Xx

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