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Surgery

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Guest
Guest

Ive had colitis since i was 14, im 19 now and the longest time ive gone without a flare up is about 5 months. I havent gone to school and been a regular teenager i just spend my time in the house espically the toliet. Ive gone through all the medications even those for crohns but nothings worked. Ive been in my current flare up for just over a year, been on steroids and other medications to stop it getting out of control, but nothings worked. Im now facing surgery and have done for sometime but i havent been able to come to terms with it. I want to know from people who have had it, their experience and if its helped or not.

Also anyone who has UC or crohns have you had a pulmonary embolsim also, i was diagnosed in Nov 09 with one and was just curious if any other person had developed one.

Thanks

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3 Replies

  • Guest
    Guest

    Posted

    Hi,

    I'm 38 and have had UC since I was 25. It was just the first 10cm of the bowel affected at first but then it spread through the whole bowel 6 years ago. Like you I seemed to be constantly flaring up and had to have numerous blood transfusions due to anaemia. I was taking prednisolone and suffered all the usual side effects and eventually developed addisons disease due to my adrenal glands stopping working because of the steroids. The steroids stopped being effective about 18 months ago and as a last resort i was started on infliximab infusions which thankfully worked and have kept me well until recently when I have started having symptoms again. The infliximab may be wearing off so I have been thinking about surgery, which like you, I have never been able to come to terms with.

    Anyway, I wanted to let you know that I developed 2 pulmonary embolisms a couple of years ago, and a clot in my portal vein. I was started on Clexane injections in hospital which I carried on doing myself at home for 6 months, and my last scan was clear. Apparently they're quite common in IBD sufferers due to sedentary lifestyles, and they're usually a sign that the disease is quite severe.

    Hope this helps and good luck!

  • Guest
    Guest

    Posted

    Thats really interesting thank you for replying. Ive just started on infliximab too next week ill be going in for my 3rd IV infusion but it doesnt seem to be working, i dont know if it takes along time to work but im hoping the next one will just take the edge off things.

    Yeah they told me in hospital that because the UC makes you so weak etc that you dont tend to move around as much. Which is hardly fair seeing as we have enough to deal with. Ill probably be getting surgery sometime this year if this next treatment of infliximab doesnt work. So if i get it done ill let you know how it went etc if your considering it. I know alot of people have said its the best thing they have ever done, and i suppose at least we know about it i would hate to have not known and to just of woken up with one.

    Thanks for your feedback =]

  • Guest
    Guest

    Posted

    Yep I also had a pe in 2007 6 months after my uc began. My heamotologist said it maybe from the predisolone so I no longer use it. Also dehydration is thought to pay a big part.
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