I've Used Humira - Page 2

Nora Elwick · #11 (**permalink**) August 25th, 2008, 10:07 PM

Quote:

Originally Posted by mama696

Hi, my son is 14 and has Crohn's disease and has been sufferinmg since he was 8. Also trying lots of different meds. Some kinda worked, but not enough. He just had 15 " of his Colon removed several months ago and we are dealing with lots of Dr's with not much result so far. We are trying to schedule reattachment surgery, but it just isn't that simple. I am taking lots of time off work so he is not alone. Although (other than his colostomy) his health is good, not perfect, but better. . Iron still sucks though. Up down, up down. He was hospitalized last fall for a month and went through hell at times. He couldn't stop bleeding and the diarea was bad. It was awful. We pulled him out of school his freshman year. I make sure he gets outside, we go for walks and I reasure him he is not alone. He is a honor roll student, so we are lucky, but we want him to heal. Just get through what he can at home schooling and get well. I let him vent when he needs to, but it's hard. very hard. He has lot of people that love him. I want to find a cure. His father also has Crohn's, had two surgerys, but is doing well. He has been luckier than our son.

I had my entire large intestine removed at age 15 due to "colitis" although now at age 25 I have active Crohn's. I met many young people who had intestinal diseases and who had had surgeries when I attended a summer camp for ostomates as a teenager. Many of the people I met who had had resections after having an ostomy had many side effects with the resection. It's another surgery and there are recurring infections and diarrhea to deal with. I have been very thankful many times that I stuck with my ileostomy rather than taking on another surgery with all the complications. I have never had any problems with my ostomy. So just think through it carefully.
I have also done a lot of research into a possible connection to vaccines, especially the MMR. Here is one related article: BBC News | Health | Discovery could re-open MMR debate
This webpage Crohn's Disease - Letters to the Editor - Letter to the Editor | Townsend Letter for Doctors and Patients | Find Articles at BNET talks about a specific group of herbs that have been shown to successfully treat Crohn's. I haven't yet tried it.
Good luck with everything... I wish you the best.

Cindy Salerno · #12 (**permalink**) September 28th, 2008, 08:03 PM

I was on Remicade about 10 years ago and it worked for 5 years and then seemed to stop so I have now been on Humira for 5 years with success so far. I have had 2 intestinal surgeries and DO NOT want a 3rd. I recently had severe pain and my doctor gave me Entocort as well. I've tried to stop using it but as soon as I do I get bad diaherria so I've been on it now for about 6 months and will stay on it as long as I need to. The combination of Humira and Entocort seem to do the trick for me.

newyearslady · #13 (**permalink**) October 5th, 2008, 06:17 PM

Sorry wrong topic.

kmwrox · #14 (**permalink**) October 28th, 2008, 10:50 PM

I have been on many meds since 1994 (prednisone, Imuran, flagyl, cipro, entocort, sulphasalazine, asocol). Used Remicade 2 years ago, but had to stop because I eventually needed surgery. I became symptomatic again in 2007. It took them a while to figure out that my Crohn's was flaring. They tried my on Remicade again, but I had an allergic reaction to it because I built up antibodies. I'm now on Humira and doing well (thank goodness). But if that didn't work, my doctor was going to suggest Tysabri, generic name: natalizumab. It is mostly used to treat MS. But, there is a serious side effect. Tysabri increases the risk of a serious viral infection of the brain that can lead to disability or death. This risk is higher if you have a weak immune system or are receiving certain medicines. Check with your doctor!!! Good Luck!!!