My name is Sandra. I’m 28 years old. I am from Ireland and I have 2 children aged 6 and a year and 7 months.
Some more about me:
I’ve been an Irish dancer since i was 4 but had to put on hold this year. I love blinging old clothes, shoes etc to make them look new :) My son had cancer as a baby and in November 2012 was 5 years clear.
My Colitis Symptoms:
Constantly on the loo. Some cramps here and there. Passing alot of blood which currently has me anemic.
Thinking About Refusing the 3rd Dose and Demanding a Colostomy Bag
I was diagnosed in January 2008 and was put on Pentasa sachets 4 grams a day and calcichew. I didn’t have any major problems. Now and then had asacolon suppositories as I’m unable to tolerate enemas. Then when I got pregnant on my daughter in 2010 it all went belly up. At 17 weeks pregnant I ended up in hospital as I was feeling very unwell and losing alot of blood. I ended up having to have a blood transfusion.
Then from Easter until she was born on the 6th of June I had to have iron infusion twice a week as my levels were so low. I was literally in the toilet 24/7. After she was born I think I was ok-ish til the September and then started going down hill again. By early October I was put on oral steroids which helped a little. I had a colonoscopy due in may 2012. This showed slight inflammation (so the doctor said) but considering how bad I was feeling I knew it was worse then they were telling me but they just put me back on steroids.
By mid to late June I was unable to bring or collect my son from school. Mornings were my worst time. If I didn’t eat I would be able to go places but I had to eat or I wouldn’t function. I was supposed to be going away to Italy with an Irish dance troupe in the August and the doctors had assured me I would be well by then. Haha if only. By late July early August I had started on Imuran but got a bad reaction so had to stop taking them.
The week before I was due to go to Italy the doctors told me I couldn’t go. Then early September they started me on 6mercaptopurine (6mP) and 10 days later after having bloods taken on day 8 I got a phone call to say I had to be admitted as I had no immune system and my hb was only 7.3. I then had a blood transfusion and having only been finished the steroids 7 days before they put me back on another course.
Then late September I started HUMIRA. A nurse came out to help me do the first dose (4 injections) then 2 weeks later I had to do 2 injections then 2 weeks later I done 1 injection and another 2 weeks later done 1 injection. At this point there was no change so the doctors decided to start me on infliximab. I had my first infusion on the 28th of November and my second one on the 12th December 2012. I then had to have an iron infusion on the 21st Dec.
I’ve had no change yet and am due my 3rd infusion next week on the 9th of Jan. I am seriously thinking about refusing the 3rd dose and demanding a colostomy bag. I miss my life terribly. I wouldn’t mind as much if I didn’t have children but I do and its so hard for them as I have been housebound since late July early august. My son has stopped asking can we go places or do fun things as he already knows the answer will be ” sorry son but I’m just not able”. He now says “Mam when your better we’re gonna do loads of fun things and have loads of picnics” I feel so bad considering how much hes already gone through himself and now hes missing out because I’m physically unable. Any suggestions on what I should do would be much appreciated. Thank you.
Pentasa, calcichew ,suppositories, enemas, foam enemas, prednisone, imuran, 6mercaptopurine, humira and infliximab. So far for me none of these have made a difference.
written by Sandra
submitted in the colitis venting area