Re: Remicade or coincidence?

Mema 1Member

Have had two remicade in the past few months for suspected crohn's and I feel worse than ever before. I never seem to be without cramps or gas and have to RUN to the bathroom most of the time. Is it possible that the remicade is not helping and making me worse than I already am?

I had an MRE a few weeks ago since my GI doctor wanted to compare the results from the last three that I had taken. He said that it appeared that the small intestine looked better, however, he found a thickening of my pouch. He suggested that I go on xifaxin, however at $2,000 for the month, my decision was not to. The office was able to get a reduction in price, this time the amount came back at $600 for the month. I love bargains, but this is a bit out of my price range. He intends to put me on another antibiotic, but have not heard from him, and have so many other things going on in my life at the moment, I haven't called him. I will this week though, because I just can't go on like this anymore.

Yesterday, I couldn't get out of the bathroom, but figured that it was from the grape juice that I had in the morning and the great cherries that I had bought the day before and I didn't think much of it, as it is not unusual for me to have days like that.

Last night I went out to dinner. I must not have enough to drink with my meal, and came home with my usual blockage stomach ache. I quickly had a hot cup of tea and the pain subsided. During the night I was woken up with the worse cramps and pains that I've ever had in my life. They were gas pains and the only way that they would go away is if I could empty my pouch. It is not always an easy thing to empty completely, and the pains kept coming back throughout the night until morning when they finally subsided. Right now my stomach is just sore. I just don't know what to do anymore and am feeling alone and frightened. My stress level is through the roof which is not helping my condition either.

I guess my main concern is that the remicade is making me worse, is this possible? I am scheduled for another treatment at the end of July and certainly don't want to have one if this is the case....any comments, PLEASE!

6/29/158:12 AM

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rachelravenMember

The truth with biologics is that it can certainly take more than 2 doses to put things under control. I know with Humira they told us up to 3 months.

However, the fact remains not all treatments work for all folks. I'm guessing your doctor will likely tell you to give it more time. I doubt it's "making things worse," but it's probably just not helping, or not helping yet.

Perhaps the food choices have been a bit of the culprit, too. Like for me, last Monday, I ate more indiscriminately when visiting my sister, but there was something more to it. I developed that "fist of pain" in my abdomen, over and over, and had to visit the bathroom repeatedly from 8pm-2am, just felt awful. It subsided, after I got everything out. Might have been something I ate, or a touch of something else. Totally not my norm. Some folks at work had had something similar, so I even thought maybe I'd caught something.

It's hard to say, except to run it past your physician and see what they say.

6/29/159:13 AM

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AllyKatMember

Xifaxan has a patient assist program if you qualify.

Im sorry your not well. Do they think going back to a ostomy might help?

Im still in the hospital for issues they can't figure out as well.

6/29/1510:26 AM

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Mema 1Member

Thanks Rachelraven for your input, it's much appreciated, perhaps waiting for the next remicade treatment will bring me hope and help me to feel better. I guess I will have no choice but to wait to see what happens. It's most likely that I will have to go on to an antibiotic which I really hate doing, but at this point, I'd take anything if it would make me feel just a bit better. I'd like to have a few moments of feeling well again. I really don't remember what the feeling is like at this point. I just go from day to day feeling from bad to worse.

AllyKat, I just read some of your posts and feel so sad that you are so ill. I hope that they can figure out what is wrong soon, I can only imagine how depressed you must feel at this point.

I did speak to the doctor about an ostomy, but he wants to try a few other things first to see what happens. You know the old saying, "doctors "practice" medicine, and we're their guinea pigs. I really don't want to go that far as to have to have a permanent ostomy, but it might be what I will have to do at one point. I think my age will play a huge factor.

I can always remember my mother saying that stress is so bad for everyone, and of course, she was absolutely right. I've been trying to meditate, to calm myself down a bit. Maybe that will help somewhat as well.

I wish you better days and an end to your pain.

6/29/1510:50 AM

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