Allabout me....

[rclaire]

I everyone. I am 42 years old and teach 5th grade.I was diagonsed 4 years ago through a colonoscopy. No symptoms whatsoever and things remained quiet for 4 years. No meds, didn't even google crohns to see what the hell it was. I experienced stomach and gut pain this summer and had it checked out via endoscopy and everything was normal. 3 days after school started I was in a fetal position with severe (oh my god) severe pain. I ended up in the hospital and a CAT scan showed a partial obstuction (cecum), an abcess(sigmoid colon) and who knows what else. I was put on TPN (I'm a little on the thin side anyway and not eating for 6 days made me look very sickly). I was IV steroids, Flagyl, cipro. They reluctantly released me and I recuperated a home for 2 weeks. The follow up CAT showed reduced inflammation, but possible fistulas in the small bowel. I'm finally scaling down on the prednisone. Here is my dilemma and please help a newbie understand this. My GI insists I start Remicade. I read about the drug and nearly cried about the potential side effects. Today I asked to please start with Asacol first (I figure this was my first flare. Why fight it with a nuclear missle when a pipe bomb might work fine? ) He was very short with me and said fine, but that asacol doesn't work and I would end up with resection surgery. What? I'm so scared and don't know anyone else who this is happening to ...except you guys (the experts). Any insights would be awesome.

 

[SwtNdSpcy]

Hi Rclaire!
In truth, my GI agrees, as do I, about asacol. It is a good remission maintenance drug, but it has not had much luck inducing remission. Remicade and other drugs like it (Humira for example) have been shown to be successful in healing fistulas and inducing remission (this is the speech I have gotten from my local GI and my special GI). I took asacol for 4 months and got worse and worse even taking Pred tapers once a month the entire time. My GI wanted to go with Remicade too, but my insurance wouldn't pay for it until I had tried all the other drugs first with no success (it is very expensive).
I know the side effects sound scary. I felt the same way you do. After my first hospitalization Remicade did induce a remission in me for 2 years.
I am thinking your GI is looking to heal the fistulas, and Remicade (according to my GI's) is usually the best choice for that.

 

[Dexky]

Hi Claire, welcome!! I don't know if you've seen it but there is a remicade club thread here....

http://www.crohnsforum.com/showthread.php?t=4544

I haven't read a lot of it but it seems mostly positive. Good luck!!

 

[CDDad]

I know the side effects of Remicade are scary, but Crohn's running amok can be more scary. Just google the Proctocolectomy Surgery I had done back in April - yuk! You have to stay ahead of the imflamation (and fistulas are no picnic either). Good luck and think about listening to your Doc.

 

[lynx]

Hi I just wanted to tell you that I have been on Asacol for almost 4 years. Actually I was SUPPOSED to take it regularly but I didn't. My new GI kinda gave me the riot act at our initial visit saying "how do you think you will get better if you are not going to take your medicine?" I took it on and off..only took it when i was having a flare...and from what I know now all my 'flares' were very mild compared to what a lot of people experience. Until this summer, then I had a massive flare and wound up in the hospital and, like you on TPN, I was in there for just about the entire month of September. Kept writing September on OCT checks and in places you put the date when i got out of the hospital...lol.

Now I am on the steroids and asacol too...we are going to see if the asacol can keep me in remission as I taper off the steroids. If not..its on to some other drug like imuran or remicade. That is what my GI said. I hope I can still be on the asacol as it has the least amount of serious side effects of all the drugs next in line. But if need be I will go onto the next ones. and like you i find it a little scary.

Read in the REMICADE CLUB posts about that drug and there are other posts about peoples experiences with other drugs too. It helped with some of my fears. I wish you luck in finding what works for you and finding relief as fast as possible.

 

[can1991]

Hi Claire,
I am also in my 40`s. I was diagnosed last year with Crohns. I have had to go to the Biologic drugs this year. It is scary, but what a difference it has made. My dosage just had to be increased to weekly injections as every 2 weeks was not strong enough. It is very similar to Remicade. It has improved my quality of life very much!
I hope you get feeling better soon!

 

[Lucy]

Welcome RClaire and glad your here. I have no experience with Remicade, but I am on Humira. This has been the only thing to help me. I have not had any side effects from it. I picked Humira so I could inject myself at home and not miss work for the infusions. Lots of good info here. Great people too. Good luck with whatever medication you decide to try. Please keep us posted on your progress. Again welcome to the forum.