Posted 5/23/2010 5:22 AM (GMT -6)
I've followed off and on over the years since I was first diagnosed back in 2004, but have never written on this site.
A bit of background info:
I'm 23 yr old female. Currently a full-time student, part-time hostess. I was diagnosed back in October 2004 (17 yr old). I had become so sick I lost almost 30 lbs over a month. After about half a year of trying to figure out what was wrong, I was put on a few different medications, pentasa and entocort, for sure. These helped a little bit, though it took me a while to get to a point where I wasn't so sick. Over the next 2 years, I didn't gain hardly any weight back. I was still very ill. Once I reached 20, I had gained back all the weight, and my GI doc took me off all medications. I started going into a flare-up again, the pain came back, and I started to lose some weight, but because the numbers (c-reactive and albumin) weren't bad, he didn't want to put me back on anything. It started to interfere with school, so I went to get a second opinion. The second GI was a quack. He told me it was absurd to suggest a person my age could have and IBD, and that I only had an IBS. I followed his regimen of antispasmodics for just about 6 months before I couldn't take it anymore, and I went and got a third opinion. This doctor is much nicer and listens so much better than the other two. And I found him just in time too, because I've been going through a fairly bad flare-up.
When I first met him, he did the usual round of scans and stuff, since I hadn't had some in about 2 years. I have inflammation both in my ileum area, and mildly throughout the lower small intestines. He prescribed me a 800mg asacol 3 times a day, and prescribed tramadol for pain when I really needed it. This worked for a while, until I flared up during the past holiday season. I got a flare-up so bad that it spread to my lower spinal region. I was achy all over my hips and spine. I could hardly attend my classes, especially since the weather was so cold (it made it 100times worse!). I spoke to my GI, who told me to go to my GP to make sure he didn't see something else going on (like rheumatoid arthritis or ankylosing spondylitis , both of which run in my family). The GP saw the inflammation, but said my symptoms didn't seem bad enough to be either one, so I was prescribed a 12day regimen of prednisone to knock the inflammation down. After that, I saw my GI and he started me on entocort, 9mg a day because my c-reactive was still high, albumin was low, and I was still having some symptoms. It helped, and I was feeling better for a few months. Then about early March, I started becoming really sick again. I started going to the restroom 6+ times a day, having accidents, not waking up from sleep to use the restroom. And then I lost 10 lbs in 2 weeks. I got in to see my GI about 2 weeks ago. I am now on prednisone, starting at 20 mg a day, twice a day, decreasing by 5 mg a week. If this doesn't work, I'll be going on Humira. This is my first time to use the stronger steroids and even speak about using the TNF, so I'm kinda nervous.
Anyways, the main reason I'm writing is this. I am prescribed tramadol for when I really need it. Ever since starting the prednisone, I have had LOTS of constipation (which I guess is better than the alternative). My bms are definitely not regular, going about once every 4 days. The stool is very solid and oh-so painful to pass. I don't even feel like I fully evacuate at all. The pain I feel with this solid stool is much worse than the pain with diarrhea. At least the pain with D is only in the most sensitive areas, but the pain with C is all over my abdominal area. I feel it anywhere from right by my stomach to my colon. And its so sharp. Its like being stabbed in the gut. I don't like taking tramadol though, despite all this pain. I hate both the idea of being reliant on a pain reliever and the way the pain reliever makes me feel. I become lethargic and have trouble with my motor skills. But, with the way the pain is now, I can hardly function. In the past two weeks since starting the prednisone, I've had to miss work twice because I've felt so bad. And my apartment has become a mess! The pain lasts all day, whereas D pain was only for a consecutive hour tops.
I need help getting my bowels to move more efficiently and with less pain! Any suggestions? I'm willing to eat/try anything! I eat only whole wheat items to get fiber, but maybe I'm getting too much? I've been doing stool softeners, but that isn't helping fast enough. And I've tried caffeine, but that doesn't appear to be working as lately it just brings more pain. I've heard peppermint teas work... Any suggestions would be so appreciated. The prednisone, along with the pain, has ruined my sleeping schedule (I can't fall asleep til like midnight, and then I wake up at 4 from pain...never have I been so exhausted!).
23yr old female
Dx w/ Crohns: October 2004
Dx w/ IBS: November 2008
Current medications: Prednisone, 40mg tapering to 0; tramadol, 50mg when needed; hyoscyamine, .125mg when needed; and of course, multivitamins