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Ulcerative Proctitis and Infliximab

Posted , 4 users are following.

JonWHut
JonWHut

hi, 

i had had a total colectomy about 6yrs ago. In the last few months I've suffered really bad diarrhea.

been moved on to Infliximab (Remsima) and had second infusion 2 days ago...so far I've noticed no difference in fact I would say it's worse! Burning diarrhea and being be practically incontinent at times.

anyone suffered the same or how did it work for you?

i wanted surgery to get a to a back again, but my doctors wanted to try this....getting pretty down and just want some sort of life back again!

 

0 likes, 3 replies

3 Replies

  • bob1234
    bob1234 JonWHut

    Posted

    I emphasis with you John I have Crohn's and I am sometimes pee incontinant and 24/7 poo incontinant. My life revolves around toilet, pain and a fear of food. I have a book case and a radio in the toilet. Fortunately the toilet is also a wet room. 

    John remember you are not alone.

    Crohns and colitis are very similar with a blurred division between the two.

    Any drug treatment is going to take time. So address your fears to your GP. I find a written note is best because it can be properly composed with info like weight loss, smelly pee and etc.

    Along with the illness comes depression. So one must do stuff like housework. I am restoring an old car. This makes me excercise rather than just sit around. 

    A key key thing is support from family.

  • ben84306
    ben84306 JonWHut

    Posted

    salam it means hi 

    by the way im new here and my english its litle bad any way   my stuation is the same as yours  and remicade it does not work with me my doctor said u have to do a surgery wich is  STOMA BAG permanent one 

    OMG

    first i did not accept it but i think a lot about it and i have to do it there is  no choice 

    and hope u will be fine soon 

    salam

    • JonWHut
      JonWHut ben84306

      Posted

      the stoma bag is not perfect, but for me I want it back so I can have some life back.

      I have had it before and didn't have time to come to terms with it so I found it hard to deal with...no I have had time I happy to have it.

      All the best for you!

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