Crohn's Disease Support Group

Hey all. I'm not sure what to do here. I know that my crohn's isn't under control as I still suffer with the basic symptoms heavily. But I also can't tell if my GI is actually doing anything to change that. I was in the hospital about a month ago, give or take a few days, for a flare up. They put me on the steroids like always even though I told them I didn't want them. Like usual, my GI started stepping me off of them. But when I got down to a lower dosage, I started having symptoms again while still taking the steroids; stomach pains, nausea, dizziness, diarrhea or constipation. He stepped up the dosage of the steroids but refused to give me anything for the other symptoms claiming I shouldn't be having them still as if he thought I was lying about having them. He has me on the cimzia for it. But now he's trying to say that the reason it's not working is because I've been taking it wrong, saying that the dosage is wrong and things like that. But his office is the one that set it up with my home delivery pharmacy so if that is true, it's their fault right? So I don't know what to do about this. I don't want to keep taking the steroids for obvious reasons and I've told my GI that I don't think the steroids are working anymore to begin with AND since he started me on the cimzia, I've been in the hospital three times for flare ups. Three times in less than 4 months. So I need some advice on how best to proceed if anybody has some suggestions. Thank you.

Awna unfortunately there are Doctors and specialists (GIs) who seem to believe they know our bodies better then we do. Been there with a few of them myself over the years dealing with crohns.

Listen to your body. YOU are the one LIVING it. If you feel this GI is not listening and is forcing you into living a constant hell instead of taking your concerns seriously find another. One of the hardest things we do when all we are asking for is someone to really listen and TRY helping us..

I never felt prednisone helped me. My GI put me on entocort during my last flare. I could tell a differenece between the two meds. One helped the other didn't.

As for the cimzia, how long have you been on this? Some meds take longer to have a good result and others seem to help right away. BUT if you feel he is basically ignoring all your pleas for help I'd go to a primary care Doctor and voice my concerns and possibly start searching for a better GI..

I sincerely hope you find some relief soon. Crohns spirals out of control the longer it takes for someone to get us in the right direction..

Hey libit. I've already been through three GI's trying to find one that I felt could do any good for me. I just don't think any exist in my area. Prednisone used to help but I think my body grew immune to it. As for the cimzia, I started taking it roughly four months ago, right about the time I started having these back to back flare ups. I told my GI that and he said it was too soon to tell if the cimzia failed. As for my primary care...I had to dump him and I'm still looking for a replacement. My primary care, since I was diagnosed with Crohn's hasn't done ANYTHING except defer to my GI, even for problems completely unrelated to my Crohn's, he deferred to my GI. I didn't have the constant co-pay to keep paying for his deference and crap shoot first year medical advice any longer so I started looking for a new primary care. But so far I haven't found one that I can tolerate. I hate Crohn's! Ever since it popped in...I've been getting worse and worse because I already had the basic symptoms of manic depression(even though I was never formerly diagnosed as such, it's just one of those things you can tell). Everything in my life has done nothing but spiral straight down and through the multiple layers of hell and I'm seriously running out of options before I take my sword(video game novelty lol) and start swinging at anybody unfortunately to get in my reach. it sucks.

I think finding a different doctor GI is what you need to do but it probably will take a while to find one you like. For me I was on my death bed before they believed I wasn't faking!! I finally got put with a doctor who cared and started on Azathrioprine. Ive no idea what the medication you are on is but my Azathrioprine worked for a while and then I got sick again and they put me on humira as well. Humira is taken by injection so if you don't mind injecting yourself once every two weeks I recommend maybe asking if you can go on this because I was very sick to the point the were considering giving me surgery but after about a month and a half my symptoms were controlled. And then from then on I was pretty much fine accept for a few days here and there. Now a year later and still on it ive been in conferemed remission for four months now. Of course different medicines react and help people in different ways so I cant say it will work for you.

Awna I'm sorry.

Finding any Doctor or GI for that matter is hard, one that listens and actually has compassion is almost impossible... Try asking yours about the entocort. Its similiar to prednisone and for me it was a big difference.

I started cimzia in Jan 09 and it did take me a good 6 months to find any relief from a major flare that left me basically incapacitated for a year. Along with fistulas and abcesses. A horrible mess. Like you I felt no one listening or trying to help.

Do you work?? Another problem for us when we are sick. Our body is screaming rest rest rest and just trying to shower daily is task..

For now my crohns is in remission and my big issue is severe joint pain. I go for a colonoscopy on the 20th so hopefully everything is still functioning normally now.

Sometimes we have to become slightly demanding in getting someone to listen. Just don't give up and if you need to chat I'm here checking in each day...

sephyrie- Thanks for that. My GI was considering switching me to remicaid if the cimzia didn't start working soon. I'm glad to hear of your remission though. Humira seems to be my GI's third choice as he always lists it third and never seems to consider it. I think what I need to do is sit him down and ask him so many question his head pops. Maybe then he might listen. But I doubt it. If I could, I would just avoid the dang medical industry all together.

libit- Yeah I know the feeling. I went through two primary before I found the one I just dumped. He was the best doctor ever when I first started seeing him but ever since I was diagnosed(or maybe it had something to do with the company take over cause his practice was bought out at about the same time) I've been becoming more and more unsatisfied with the care he gives me. During my last flare up, my GI thought I had an absess until he ran a second and third ct scan to find out he was wrong. He was saying that surgery would be involved if it was. That's a good 6-weeks at least without work. Yes I do work actually. Usually after a flare up(entailing two-four days in the hospital) I rest for like a day or so(depending on what day during the week they release me) and then I'm right back to work again despite the symptoms I still have. I'm too stubborn to stay down much longer because I'd go crazy with cabin fever if I did. I'm glad you're in remission and I wish you the best of luck on your colonoscopy. I can be demanding. But the trouble is...is that it's so much easier just to ignore me. Has happened throughout my life even from the people who shouldn't like...I don't know maybe my family. It's even harder to deal with crohn's when you have nobody supporting you on your side so if you all have your family support...you're one step further on the path of recovering every flare up than I am. My family doesn't even come to visit me when I'm in the hospital anymore. But yeah I do work. I work a steady 40 hour job complete with overtime despite how my body feels. I usually tell it to shut up and go back to concentrating on my work. I'm just that stubborn(or stupid depending on how you chose to view it) Anyway, i guess I'll start looking for a new Gi soon. I just wish you could ask questions about how so and so is in their profession before blowing money you don't have on an appointment that you end up regretting ya know what I mean?

Ha I know I wish we could all avoid seeing doctors and stuff. I think remicade is the other version to humira but its an infussion type thing. One is from animals one human I think. I could be talking nonesense right now so that's something you'd have to confirm with your doctor. My doctor asked me which one I would rather have and humira just makes more sense to me. I agree you should ask him every question you have!!

Awna I worked 40 plus hours until I hit 50. Looking back and having crohns I have no idea how I managed. In retrospect I would have filed the first time I went thru surgery with this disease. I pushed and pushed myself. In 08 when I was hit with the worse of this disease I said no more. I filed for disability and was approved that day in the Judges quarters and approved for the following 6 years. Its not the money I use to make but it sure has saved alot of stress on my part..

Usually I end up in bed for 2 days out of the week now from sheer exhaustion and joint pain. Some of my family have become a little more understanding and still there are those who really never got it.

Let me know what you decide to do with the GI, either they get it or they don't either. Shame we have to suffer so long and get sicker and sicker day by day until we just collapse.

sephyrie- Yeah it's an infusion. Trouble is...is that there is no way I could do it without having to leave work every 8 weeks which they won't let me do without compromising the security of my job. That's why we went with the cimzia first. There is no way that I could do the remicaid because it takes like three hours to do and I'd have to leave work an hour early every 8 weeks to do it otherwise my doctor can't do it. sigh That's not something I can risk.

libit- I would keep pushing myself until it was absolutely decided that I had to be on disability. I was diagnosed in 09 but it's been pretty rough. The first thing I have to do is find a new primary care. Then I'll worry about a new GI. One at a time. sigh...Now I'm just depressed. And today's Friday the 13th! It's supposed to be the luckiest day of the year for me and I've been getting screwed left and right instead. sigh...What a bogus bust!

That's also a reason I didnt pick it because having to go get it that often for that long is just crazy. Humira is self injection so it only takes about a minute to do but you do have to wait 30 mins after taking it out of the fridge first. I hope you can find something that will work for you!