Ulcerative Colitis Sufferer Who is Fed Up

I had colitis for 6 months before I was diagnosed. I was too embarrassed to tell anyone I had to run to the loo nearly 20 times a day straight after eating and there was loads of blood in the loo afterwards. The weight fell of me and I was always thirsty and never had any real energy. I was really sick one weekend and lost a lot of weight and finally went to the doctor who referred me to a specialist who diagnosed me with colitis.

I am now 27 and have had colitis for 5 years. I have had countless flare ups since I was diagnosed. Initially prednisolone and salazopyrin worked for me with pain meds and coli foam/ predfoam but when they stopped working I was put on Infliximab (Remicade) infusions every 6 weeks. However after a year and a half my specialist took me off this I don’t really know why because it was working.

5 months after coming off infliximab I am in the middle of yet another flare up. I went to my GP in September with a flare up who referred me to my specialist. My specialist recommended I start Humira a similar medicine to infliximab (an immunosuppressant) which I could take myself at home.

However before I could begin Humira I had to be tested for Tuberculosis which was in October. Much to my surprise I tested positive for latent tuberculosis and the doctors told me I would have to be treated for the TB first before I could start Humira. My UC specialist put me on suppositories before I met with the TB specialist because they couldn’t give me anything else till I started treatment for my TB even though I was having numerous bowel motions a day and in a lot of pain.

I saw the TB specialist in November and he started me on a 9 month treatment plan of 2 tablets a day.

A few days after seeing him I went back to my UC specialist and he put me on 40mg dose of prednisolone tapering down 5mg every week as well as predfoam, salazopyrin, antacids, pain meds etc for a number of weeks. During this treatment I developed the most painful piles I ever experienced in my entire life which were so bad my GP sent me to hospital where I received prednisolone intravenously and morphine for the pain. I saw yet another specialist about the piles and recommended ice and steroids. After a week of putting ice on the piles and receiving pain meds I was released from hospital.

I am now at home again and the piles have shrunk and are now almost painless ( I continue to ice them once or twice a day) I still have numerous bowel motions a day with severe cramping and nausea and am suffering with a lot of joint pain and discomfort at the moment. I continue to take the prednisolone at 20mg dose for this week and 15mg next week along with colifoam once a day and pentasa suppository once a day and paracetamol 4 times a day for joint pain as well as calcichew and isoniazid for my TB as well as duphalac for constipation which I sometimes get because even though I have chronic colitis I also suffer from IBS which gives me constipation.

My specialist tells me I can begin Humira as soon as I am recieving treatment for my TB for 3 months even though it will take 9 months for me to complete the full treatment for TB. So I hope to start using Humira by the beginning of February and it cannot come soon enough. I am sick of having diarrhoea and am in a lot of pain with my joints I don’t ever remember it being this bad. I also have grown a lot of facial hair from the steroids and have the moon shaped face and have low moods from it all.

Has anyone out there have similar experience to me?

3 thoughts on “Ulcerative Colitis Sufferer Who is Fed Up”

  1. all these medications are just a cover up to the problem! They all have nasty side effects. I said NO to my doctor when he prescribed me prednisone and NO again to Remicade. Take this disease into your own hands, doctors dont always understand or care about the negatives from the medications.

    Try SCD and change your life in the most positive way!

    Good luck!

  2. Helen, be careful switching from Remicade to Humira if you have ulcerative colitis. I was switched and, in my case, Humira did not work. Do a google search for efficacy of Humira with UC. Remicade and steroids together may be your best (drug) option. That said, you may want to consider alternatives such as: the SCD diet, a liquid diet (although these usually work better with small bowel disease), some doctors believe that large doses of antibiotics will do the trick. In short, there are no short and simple answers. Do your own research and ask lots of questions!! Good luck

    1. Hey KR,

      wow, I think you are the first person who has commented on this site that also went from Remicade to Humira for their UC!
      It feels like I just found a needle in the haystack!!:)
      Me too. I did the same, and it was a train wreck for me. In fact, it is the reason why I started this website a year ago, as it led me to the SCD diet as my only other option I thought was surgery.
      Anyways, you made my day, I initially thought that there would be hundreds of others who tried remicade and then Humira, but so far it seems not as common…

      I hope you are doing well with whatever your treatment program is, have a good one!! I would second 100% what KR is saying as options to try out too Helen,. best of luck to both of you!

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