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Tired of dealing with Crohn's disease

Hey everyone. I've been on treatment for Crohn's disease for about a year now. I had crohns disease for about 2-3 years before I got diagnosed. I felt HORRIBLE all the time. I had to take immodium every single day just so i wasn't living in the bathroom. Once I got diagnosed I got on remicade and I started doing much better for about a month then I started getting sick again. It wasn't as bad as without treatment, but I still just didn't feel good. I started taking more medicine to help my digestion omegazyme digestive health, culturelle, and digestive advantage lactose defense (I'm lactose intolerant). These things seemed to help my stomach slightly, but there was no huge difference. Today I just started taking carafate and ultimate flora probiotic instead of culturelle. I thought I would feel better from these, but instead i've just been getting diarrhea still. I'm so tired of not feeling well. I feel like Crohn's disease has taken over my life. I'm 18 and I feel like I can't do anything. I feel like this is the time where I should be having the best time of my life, but i'm not. Today I was going to go out to hang out with someone I recently met. Just as I was about to leave I started feeling sick, I went to the bathroom and had diarrhea. So now i'm just sitting in my room for the day. I just started trying to hang out with people again. I isolated myself when i got sick because it was embarrassing and i just couldn't go anywhere without having diarrhea. I used to go out all the time and do stuff i enjoyed. I can't do anything anymore. All my favorite foods I can't eat, in fact, i can hardly eat anything anymore. I love food which makes it even harder because everything seems to upset my stomach. :( I have been so responsible since I was diagnosed I've taken my meds everyday and i changed my diet completely. I used to go out and party and do crazy stuff, I don't now because I want to get better. I want to go out though and have fun, get a job, not have to worry when I go to college. I want my life back, I want my health back. I just want to be better. I am so sad. I feel like I can't do anything anymore I want to be able to enjoy my life. I don't want to be spending everyday stuck inside worrying. I want to feel better so badly. I just want this disease to go away, I'm so scared that I'm not going to get better and that I won't be able to do everything that I want to do in my life. I'm just tired of living like this. I feel alone and like no one understands how truly hard it is to deal with this. I'm just sick of this stupid disease.
 
Welcome to the forum and so sorry to hear you are feeling so unwell. With all the symptoms you are experiencing I would say remicade isn't getting you into full remission. Does the Remicade bring you a space of time with no symptoms? I mean to say when you get your infusion do the symptoms abate for any period of time? How long have you been on it? Have they tested you for antibodies to the remicade or have you had a remicade levels test?

My son, 16 was diagnosed last year and went on Remicade right off(along with a pred taper that wasn't helping). During the loading doses his symptoms went away completely but once we went to the 8 week schedule he could only make it so long with out having symptoms. We upped his dose then shortened his schedule but the symptoms would still return between infusions. We recently added Methotrexate and it seemed to help alot but we are still having to tweak his Remicade schedule, he is now down to five weeks.

Maybe you should have a serious discussion with your GI about all these symptoms, a medication change or add may be in order. I do hope you are feeling better soon
 
Thank you. :) Usually when I get my remicade the symptoms go away for about 5 weeks, if i'm careful with what i eat. I go every 6 weeks now. I am supposed to be going every 8-10 weeks, but my stomach hasn't allowed it, so I've stayed going every 6 weeks. This time before I got my remicade I was very sick before I went in (nausea, diarrhea, stomach pains). I didn't eat to well the days before so I thought that was the reason. After I got my remicade I was fine for a few days, then I think I may have eaten something that upset my stomach and now I have been sick for the past 3 days. I've been on remicade for a little under a year now. I'm not sure if i've had those tests. However, I do know that every time I go in they draw blood from me to run labs on it.

That sounds very similar to what has been going on with me. My dosage was also upped. Did Methotrexate really help? When I started remicade they put me on remicade because they said it was the strongest thing. I was in very bad condition when I started treatment. It does help, but it helped so much more when i first started. I'm scared to try a different medication because I don't know how my body will react to it. Besides remicade is helping, I just want to feel well enough daily so that I'm able to go out without having to worry.

I did talk the doctor, but he seemed to think I was doing ok. I recently got carafate from the doctor to help with my stomach pains. I just started taking it today, but I haven't felt any better. My stomach has actually been a little worse. :/
 
Yes, your story sound alot like my sons. He has been a little less than a year also. I think upping the dose of Remicade and MTX really has helped him but even so he still only makes it a little over 5 weeks.

For those five weeks he has no symptoms at all, so all the normal teen stuff is game, and he is rarely home on weekends(I'm sure you know all about that!) but the symptoms starts about 3 or 4 days before the 6th week mark and he stays home in bed the whole time(before the MTX it he would only make it about 3 weeks so I guess it has helped along with upping the dose of Remi).

He just got his infusion on Tuesday, the Thursday before the infusion he had started with symptoms(mouth ulcers, severe joint pain, stomach feeling off, more bms, severe fatigue). In the last two days, he is feeling much better, regular bms, less joint pain every day and the mouth ulcers are going away. I figure by the weekend he'll be up to going out.

When he first started having the symptoms the GI thought he might have IBS too but I asked for a fecal calprotectin stool test, it tests for inflammation in the GI tract. The normal level for a non IBD patient is less than 50, for an IBD patient they like to see it below 150, his was 1700. You may want to request one of these tests as it might help the GI see that what you are dealing with is affecting your every day life.
 
Keep on your Doctor, keep him informed..
I know how you feel, i was DX when i was 15 and i am 40 now
It did steal away a good part of my life..so be it.
Remicade took a number of years before it along with the other meds got things under controll. My CD was in the severe range so give it some time.
 
Clash: Thanks a bunch for the advice. It's helpful especially since your son went through the same problem. I'm going to talk to the doctor about maybe adding another medication and about everything else. Hopefully I'll start feeling better.
 
There are alot of young people on here brown.eyes and even a teen forum you may want to check out. I would just keep talking with your GI and letting him know that your daily life is being affected greatly and don't let him convince you that is the new normal. Having only been on Remicade you have truly yet to find your new normal and it may take med changes or adds and so on so don't give up!!!
 
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