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I think I'm going into a flare...

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Ulcerative Colitis
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Posted 9/15/2009 3:34 PM (GMT -5)
A year ago today I was admitted into the hospital because of a severe UC flare. 2 days ago my abdomen started what I call "the gurgles" and I think I'm headed into a flare. I'm on 100 mg. of Imuran but I fear that my success with it has run out. I haven't seen any blood yet nor have I had any real pain- only some discomfort. I just feel like there's nothing I can do to get myself out of this. I've been taking Ativan to help my nerves because I think that's the real kicker here. Every flare I've ever had I've done everything I could to stop it and it didn't work. The last one, last year this time, was so serious that I spent 20 days in the hospital and had to be on TPN. I'm scared. I called the doctor but they said he won't be able to get back to me until tomorrow. I feel like I've extinguished all of my medical options. I did prednisone, Remicade (which I had severe, severe allergic reactions to and can never have the drug again) and I'm on Lialda and Pro-biotics. I'm afraid that surgery is somewhere in my future. It's horrible. All I want to do is complete graduate school and it seems it will never happen.

I just needed to vent..... I hate this disease. It's ruining so much for me.
Posted 9/15/2009 3:39 PM (GMT -5)
I'm sorry! I think you should think about using mesalamine enemas nightly now that you're starting to get symptoms, and if that's successful, taper down to a maintenance dose. I plan on using them twice a week indefinitely. There's quite a bit of info out there suggesting that people who use them twice a week stay in remission longer than those who don't. If you do end up going into a flare, you can always do a course of pred to get back into remission.

Also, have you talked to your doctor about Humira? You might be able to get approved for it as you can't take Remicade.

I understand about the graduate school issue. I have a PhD, but I was lucky enough to finish it, get married, and have my first child before my UC hit. I can't imagine trying to finish grad school while worrying about a flare.
Posted 9/15/2009 4:01 PM (GMT -5)
I am sorry and I know exactly how you feel!

I am pissed as hell right now too, because I have a frigging flare myself after being put on 6MP. I took 75 mg for a while, but needed to lower to 50 mg due to unbearable side effects. So here I am again, doing cortenema every night since a week in hopes of nipping it in the bud (butt would be more appropriate!). I also understand that you take Ativan to calm yourself down in hopes, you will not get a flare. It is so hard to calm down knowing what might be coming. I had the worst flare of my life last year from July until December and I am so scared it's gonna repeat itself again. So ... there - I know exactly how you feel. I wish you the best and stay calm as much as you can!

Posted 9/15/2009 5:10 PM (GMT -5)
I feel the discouragement with both of you.  Last week I was where you are. 

I think it's good advice from fruitgirl.  I haven't gotten to Imuran yet, but can the doctor increase the dosage? 

Most of all, I'm wondering if you're putting so much stress on yourself that you're going into a flare, which in turn is pushing you toward a flare, and before you know it you're in the vicious cycle.  Are there any other things you can do for yourself to relax?  Massage?  Deep breathing?  Something you really love doing?  I know, easy for me to write, but not so easy to pull off.   

Katie, you're in grad school because you earned it, you've put the work in to get there, and you deserve to finish.  I believe you will.

 

Posted 9/15/2009 5:25 PM (GMT -5)
I had a weird flare in the middle of doing my PhD. I developed ulcers on the outside of my body (a rare and scary thing) with no "bowel" issues. It put me back about a year because of all of the issues related to the ulcers. Grad school is stressful enough without having a disease--I feel your pain and frustration. My only advice is to remember that we are all on our own paths and some are longer than others. It took me almost 9 years to finish my PhD, but I did it in the time my body allowed and in the end people call Dr. and I have a job that I love. It took me longer than my peers, but I got it done and that is all that matters. I hope this is helpful.
Posted 9/15/2009 6:45 PM (GMT -5)
I know that my flares are caused from stress. The weird part is that they don't happen until 3 or 4 weeks after I had been stressed sometimes. They aren't immediate. It's like my colon is revving itself up that whole time and then I think I'm alright and then BAM. The doctor has upped my Imuran. (My signature wasn't accurate) and I've tried the enemas before and they didn't work but maybe this time it will be different. I'm trying to calm down. It just feels like my whole body is "different" and I can't really explain why. I know that sounds weird. about a week ago or so it's like a "weirdness" settled on me and then this has begun to happen. It's like my body knew before I did that something was wrong. And I try to tell myself, about graduate school, that I have plenty of time to finish and if I have to I'll just drop a class this semester. But I had already lost an entire semester due to ulcerative colitis. I'd hate to let it win again. And I get really tired of explaining to my professors the issue, though they've all been really understanding.... it's like "I know I LOOK alright... but internally I don't feel right and I can't really do this right now".... it makes me want to hand them a print-out from Medline or something. But last time I tried t stick it out and ended up EXTREMELY ill and I am determined to not let that happen again. For me, I feel like I'm out of control because food has nothing to do with my ulcerative colitis. I wish I could not eat something and it would make me feel better but it doesn't matter what I do or don't eat... it's still there. And it's the same severity every time. (Except for fried, battered things...those foods really kill me) but every time I modify my diet according to what "they" say is best it doesn't change anything. I also eat really healthy in the first place... so those fried foods were very few and far between. In fact, I don't even miss them. My doctor was out when I called him today so he's going to call me tomorrow. Until then I'll just try to calm down and stay focused. It was funny though. This morning a friend was hearing my stomach "gurgles" and he said "you're hungry". Little does he know that those little growling noises are coming from 6 inches below where my stomach ACTUALLY is.... but if they think it's hunger... well, then that's better than what I could tell them is really going on, right? heh.
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