This might be long, but, by all means skim if need be, or bear with me! If you get bored, I post my direct questions at the bottom!
I am a 26 male. Pretty thin, 5'11, 120 pounds. Long list of auto immune diseases, also have tested for HLA B27. Have had Iritis twice, been diagnosed with Ankylosing Spondylitis, and generally have sore joints, but haven't been diagnosed with Rheumatoid Arthritis (yet
Last fall, I was visiting my girlfriend who at the time lived an hour away. We had drank pretty heavily that night and in the morning I felt an awful pain in the center of my stomach, pretty much riding the line directly under my rib cage and leaning to the left. I attributed it to overdoing it that night, but as the pain would linger, even when I didn't drink, I started to wonder if it could be something else. I guess it was in November/December I noticed blood in my stool. It was the first time I had ever seen it (and ironically the only time. I scheduled an appointment with my PCP, who in turned referred me to a Gastro. So right away he wanted to do a colonscopy/endoscope. I was down with that, as I was somewhat concerned (side note: MoviPrep is THE worst tasting substance Ive ever experienced.)
I had my colonoscopy the last week of January (this year). Following the colonscopy, the doctor informed me I had light ulceration in my ileum, which I understand to be on the lower right of your body, a generally mild case of Crohns disease. Well, actually he told my mother because I had been so nervous of the procedure he gave me twice the sedation meds and I was still in la la land. In retrospect I found this odd though since I NEVER had pain in my lower right quadrant. My prognosis was Pentasa, four times a day and be cautious of my diet and take note of things that bother it, aka, no more drinking.
I noticed the Pentasa made me nervous. Maybe it was me being nervous (I take Zoloft for anxiety AND depression), but in any case I reported to my doctor it did not make me feel right, and he moved me to Asacol HD. Why Asacol HD instead of regular Asacol, I will never really know, but he told me it was basically the same thing and was no different. (Which is ironic since it actually says ON the Asacol HD bottle, "Not bioequivilent to Asacol". But whatever. I took Asacol HD for about
a month, but actually noticed this pain under my left rib and wrapping around to my back getting worse! I kept taking the Asacol HD though because I was just happy to find a pill that didnt make me nervous.
Last week, I had my follow up visit with my doctor. I told him I had been having pains under my left rib pretty badly (which I have had all along) but he attributed the worsening of it to the Asacol HD and then put me on Entocort EC. I took Entocort for a few days, when I really started noticing the pain under my left rib and back becoming unbearable. I actually thew up yesterday and called his nurse to gain guidance. She said stop the Entocort immediately (though I think it might have been working) and directed me to take Prednison 10mg/ 4 times a day and also prescribed me hydrocodone for the pain, which is ironic as well because my Gastro told me sepcifically he doesnt prescribe pain killers, but luckily when I called yesterday he was out of the office and his nurse had to consult with another doctor.
I am now holding my bag of pills, in decent pain, and I am scheduled for a CT scan on Tuesday.
Now, I must disclose, I was NOT thrilled when the nurse said Prednisone, because Ive heard nothing but bad things about
side effects, one of which is nervousness, and I obviously get nervous to begin with. Also not thrilled about
the fact that it lowers your immune system and lowers your ability to fight infection. For the time being I am still taking the Entocort, holding off on the pain meds until I REALLY need them, and looking forward to the CT scan on Tuesday, that it will shed some light on whats happening.
Basically after all of my typing, I have a whole host of questions and will be thankful to anyone here who has experienced Crohns and takes the time to offer insight!
1.) I find it odd that in my almost six months since showing symptoms of Crohns, I have had only one bloody stool, and hardly ANY diarrhea, is that normal?
2.) For people who have taken both Entocort and Prednisone, is it worth me taking Prednisone instead of Entocort? Will I get faster pain relief? Is it true that it causes anxiety, etc. I guess Im wondering if the potential side effects outweigh the good it can do.
3.) It looks as if messalamine based drugs arent going to do the trick for me judging on the hit and miss with both Pentasa and Asacol, and I am not thrilled about
being on ANY kind of steroid for a long period of time, what other drug classes and/or choices do I have? Humira? Remicaid? Others?
4.) I am not 100% convinced that my pain under my left rib and back is Crohns. I have certainly read people with Crohns getting pains here, but I have had these pains (although lesser) since the beginning and when he did my colonoscopy, not once did he mention any ucleration or issue with my descending colon and the pictures from that area looked fine. What else could this be? Pancreas? Spleen?
5.) Being new to Crohns, I am not really sure what kind of pain is normal pain and what kind of pain is "rush yourself to the ER" pain. I will say that I dont feel comfortable on a daily basis, but my current pain seems to be increasing. It is a pressure type pain, under my left rib and making its way down to my pelvis along the left side, as well as running across the center of my back. Again, pretty odd when my doctor diagnosed me with Crohns in the ileum. Whats even worse is when I went to see him, he said, "Hey great to hear you no longer are having problem with your ileum". Um, I never was, thats where you supposedly found it, my pain has been under my ribs.
Ok, Ive talked enough for now, for anyone who reads my entire post, you are great! And for anyone who offers guidance by answering any or all of my questions, thank you so much! I wish all of you guys (and gals) the best!