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About 1 Year with UC

I was diagnosed with UC a month or two before my 16th birthday. I’m now 18 and entirely unable to get control over my symptoms. I’ve gone through so many medications, and the only non steroidal one that even kind of worked was Remicade, which I have infusions of every 4 weeks. It’s worked for the most part, but I’ve had 2 or 3 MAJOR flare ups in the 10 months or so we’ve used it, and my symptoms always return around week 3, even though they’re not nearly as bad as during an actual flare up. I discovered this site because now I’m in another major flare up, and I had an infusion three days ago, so I should not still be experiencing symptoms at all, let alone some of the worst I’ve ever had. We contacted my doctor and we’ve been discussing hospitalization and maybe j pouch surgery. I’m terrified. I’m 18 years old and idk how to feel, Idk what to do, and I’m just scared. I’m getting a bunch of labs done tomorrow and then a doc appt the day after that, so I guess we’ll see what the next step for me is. I would really appreciate other people with UC talking to me about j pouch surgery, especially those that have had one, as I’m starting to seriously consider it. I just want this disease out of my life. I just want it removed and I’m sure you can all understand that.

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Comments

  • angelmum
    4 months ago

    Hey, really sorry to read your situation. My son is now 17, he had surgery in January – it was not something he really had time to prepare for as it all happened so quick. I think all circumstances and people are different. All our trust was put into the Consultant/Surgeon as they are the only ones who can give you answers as to how things are and if surgery is needed. My son now has a stoma and a mucus fistula – it is early days but he is coping really well and just getting on with it,slowly starting to build upon things he can do again. He is hoping for reversal surgery later this year.
    Stay strong – thoughts are there with you xxx

  • thedancingcrohnie moderator
    4 months ago

    We can absolutely understand! And I am so glad you wrote your story, because I’m sure others from the community will chime in and tell you about their experiences.

    I have not had surgery but many times I was told by doctors that I needed to have it. I went 7 long years in tremendous pain. However, because of my frustration of not getting better after those years, I reached out to a Naturopathic Medical Doctor. He changed my life and educated me on the importance of diet, probiotics, leaky gut, and the urge that the body has to heal. Today I am well and thriving.

    I stay away from dairy, grains and processed sugars, since those foods are inflammatory. I also take probiotics daily along with vitamin D, a multivitamin and a green powder supplement, amongst many other.

    I just want to pop in and say that if deep down you don’t want surgery, it is absolutely possible to heal, but it takes work. You have to be diligent with diet and be disciplined. Perhaps make an appointment with a Naturopathic Medical Doctor to get another opinion about your situation?

    I hope this helps some! And I hope you feel better soon and always remember that in the mean time you have a community here that will support you.

    Always dancing,
    Elizabeth (team member)

  • hellouhellou
    4 months ago

    Hi Elizabeth, I’ve read your story and found it very comparable to my situation. I was diagnosed with UC when I was 12. I’m now 17 and has been treated with all different medications including contemporary biological drugs and injections. I’m now undergoing the very last treatment with the last biological option and as doctors say, if this doesn’t help, the only way is a surgery. I’m on my part very much against it or I’m not ready for any surgery at the moment, and therefore, would like to ask you if you could give me contact details of the Neuropathic Medical Doctor that you consulted. I believe in remedial power of food, but don’t actually know what to start with. I’ve tried to cut on some processed foods, sugars and grain, but this resulted in losing more weight, which on the other hand resulted in doctors’ more frequent examinations and their belief in that only surgery can help here.
    I’m so tired of my health condition and I’m trying to find a new solution.

  • thedancingcrohnie moderator
    4 months ago

    Just messaged you with all the info!

    Always dancing,
    Elizabeth

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