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Diagnosed with Ulcerative Colitis and the Total Colectomy surgery

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Randomhelper
Randomhelper

Hi I was diagnosed with UC over a year ago and have gone through the Total Colectomy surgery and am having complications. My last surgery was last October and i had one on the worst recoveries my doctor has seen. A little over half a year later I'm still struggling. I have random pains like I did before my colon was removed I have dropped around 40-30 pounds throughout my diagnosis and I can't maintain a constant wait. My Doctor say this is not normal and she doesn't know what to do can anyone help or just share their UC story

0 likes, 4 replies

4 Replies

  • JonWHut
    JonWHut Randomhelper

    Posted

    I feel for you!!!

    im no medical expert, but it's sounds like there's something else still going on in there!!! I'm assuming they've run lots of tests and done colonoscopies etc?

    I had a emergency total colectomy, was back to work after 12 wks as sick ended, but wasn't right for weeks after than...

    i hope someone on here can help!!!

  • sheila91262
    sheila91262 Randomhelper

    Posted

    Hi, sorry about the disease and your problems. Can you explain where the pains are and what your complications were? Were the doctors sure that you only had UC and not Crohns aswell? Are you going to a specialist hosp such as St Marks London or John Radcliffe Oxford? What sort of tests have you had?

    Sheila.

    • Randomhelper
      Randomhelper sheila91262

      Posted

      After my TC my intestines twisted and I was stuck in the hospital for 2 weeks. I also have the arthritis associated with UC. After my second surgery my pain was so bad I needed an emergency epidural that still did not ease any pain. The hospital also overdosed me all three of my hospital stays to the point i have no trace of an appetite and that alone is causing me problems.
    • Randomhelper
      Randomhelper sheila91262

      Posted

      My pain occurs under my hip bones and along my ribs I can also feel my small intestine twist occasionally along with the usual symptoms of Ulcerative colitis. I have had cat scans, bone tests, scopes, and some I don't remember the name of. I live in AK and their GI facility is very limited. I don't know if it's related to my disease but I also have blackouts and moments where my body becomes extremely weak. Can someone please help me!
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