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?