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My Circus

Newly (a few months now, I guess not that new) diagnosed with moderate UC, which began in July 2022 with blood on TP, misdiagnosis for a few months, 5 doctors and finally a colonoscopy. I was told blunty “you have a lifelong disease with no cure and we’re going to start you on IV or self injection treatments. Still stuck on the first part of what I was told, I immediately said NO, HARD NO to the treatment being offered, I had no information about UC, it was a shock to my system and I need time to not only absorb this news, but to research. I started with steroids, a circus in itself, it didn’t fully put me in remission (at this point, after the colonoscopy I was in a flareup big and bad), I still had traces of a flareup left. Reading about the only medications offered, the common side effects, possible side effects and possible severe side effects I immediately said NO. I went GF, went into remission, got some bad news about my dad, straight into a serious flareup, currently no idea what to do, only that the meds are dangerous & don’t work.

Current Symptoms:

A great deal of bleeding, mucus (have trouble with that word since childhood, makes me heave, but you asked lol), have had off and on moderate cramping, a general feeling of unwell iwith regard to dealing with those symptoms, including unformed stool, and a few other things going on.

My UC Story So Far:

Has anyone found a medication that isn’t poison? What I mean by poison is that every single medication I’ve been told about or researched on my own comes along with a ridiculous list of common side effects, possible side effects and possible severe side effects. I find all of them unsafe or damage causing in one way or the other, so thus far I’m refusing them all after a 3 month stint of hydrocortisone enema that I refer to as the months of Hell. I find it so very hard to believe that in the year 2023 there’s not one medication that doesn’t possibly cause other conditions or other organ damage and/or that doesn’t fully and permanently keep you in remission. Does anyone, or has anyone, come across anything that isn’t along the lines of what I consider to be poison?

I went 100% gluten free, which put me into immediate remission, as in overnight, but then received incredibly traumatic news about my father and near immediately went into a flare, the flare I’m in right now as described in my symptoms above. Now my symptoms, as I’m feeling great stress and worry for my father is far worse than it was initially. I just began a Turmeric/Curcumin capsule 2x a day and am looking into a holistic oil made with indigenous mushrooms and more. I truly, in my essence, my being, find a comfort zone for any of the countless medications being offered to help this condition. What drew me to site, well to the bleeding thread, is that after so much research I was doing, I had finally found a page that said UC & Bleeding, that made me feel like I wasn’t alone. Even the Chrones & IBD Foundation, filled with absolute lovely people, did nothing but cause me stress, hearing about so many negative experiences, many of which my doctor would like me to try (I’m not).

I’m genuinely interested in connecting to others like me, who believe there has to be a better way, there has to be a way period.

Medication and Other Types of Experiences so far:

Prednisone 30mg 3x a day and then tapering for 3 weeks took care of my initial/first flareup but for one symptom that wouldn’t go away. It gave me severe insomnia and of course weight gain and moon face, but outside of that I was giggling through it all. Then I went on a 90 day hydrocortisone enema that I’ve dubbed “The Monster.” That gave me the worst systemic pain I’d ever felt, my headache and neck pain and tension was intolerable, I developed infections I’d never had before that were difficult to treat after trying multiple antibiotics that just gave me additional symptoms. So now on my 2nd flareup of my life I’m at a bit of a loss. I know I can’t go untreated, I know what could happen, the little worse and the severe & deadly, but I can’t bring myself to take any of the medications used for UC, they don’t feel safe to me, and… why use something that cannot guarantee remission long-term?

written by: Kimba

submitted in the colitis venting area