Hi! My name is Kimberly and I was diagnosed in 2001. I have a great husband and wonderful daughter, 20 months old, along with a doberman and miniature pinscher.
Some more about me:
I am a military brat all around, my dad was air force and my husband is marine. We are stationed in beautiful Kailua Hawaii and I have lived in many places.
I love running and cooking and just doing things with my family particularly my baby girl.
I am having pain with some softer stools and sometimes go 4-5 times a day sometime within one hour. Right now symptoms are mild compared to other flare ups
Is Mesalamine a Done Deal for Me?
This is my third time writing, I have been through some rough patches with UC the past 2 years, but things have been better the last year. (My previous stories are: Does Your Hail Fall Out After Remicade and Imuran? and I Went From Mild UC to Severe UC)
I had been on Asacol for several years when suddenly I had a horrible flare that was on and off for a year. I ended up coming off Asacol and switching to Remicade in sept 2012. At first, I made it the whole 8 weeks of being on Remicade with no issues, but about 6 months ago after 2 weeks or so of my infusions I would start having minor issues. By week 4 I was having to take canasa suppositories every day until my next infusion or I would be in trouble the next day. I had a colonoscopy in June, which showed some inflammation in the lower colon/rectum..even after a year on Remicade. So this is now my third infusion where after 4 weeks I am taking canasa until my next infusion. So last time they asked me to come every 6 weeks instead of 8, but I can’t even seem to make it 6 weeks!
So, this morning I called my doc and am waiting for his call and am seriously thinking of telling him I no longer want to be on this drug. I never wanted to be on remicade but I am scared I will get seriously ill again if I don’t take it. I want to either try mesalamine again or try diet and supplements. Because I’m sure his suggestion will be a higher dose of remicade every 4 weeks or another drug like humira but I so do not want to do that!
In all of this I am trying to have baby 2. So it’s scary that I am having issues now and at the same time trying to have a baby. Which by the way it was suggested by the docs to stay on Remicade through the pregnancy.
I have read so much good stuff about diets and supplements to try on this site, I am just scared to be off the medications to be honest, because without medications I will be scared to even eat anything at all. I don’t know what to do. Has anyone ever gone off Mesalamine awhile and then went back on with success? I mean they took me off it because when my flare was so bad it didn’t seem to be doing anything, but right now I find the Canasa works well. But I am worried it may not work anymore if I take the pill form and stop everything else.
Asacol for many years, with on and off flares
Canasa to back up Asacol and still take on and off now
During flares Prednisone (worked at first but stopped working), Endocort (didn’t work)
Imuran 50mg and Remicade plus occassional Canasa now. Tried to get off that one Imuran tablet but had symptoms so went back on. But it appears Remicade is no longer as effective.
written by Kimberly
submitted in the colitis venting area