Well, lets see. I was diagnosed 8 years ago.
Went in and out of remission, but never really had a bad flare before this one.
It started last April, the bleeding, the cramping, the joint pains..
My urgency wasn’t too bad… maybe like 2-4 times a day, and usually always before 10am. Usually when I had a flare up, I just needed to take canasa for a couple of weeks, and then it all cleared up and I’d be back to normal.
Anyway. It’s been almost a year now. After my colonoscopy in August, my Dr. said nothing too bad, just a little proctitus. I said, “really? because I’m still bleeding.” He said, that’s normal after a colonoscopy, keep in touch if it doesn’t clear up. 2 weeks went by and I went back into his office. Started anucort, which I believe is just a steroid suppository. No results. Started Rowowsa. No results, and I hated it. It hurt like hell whenever I used it, plus it was extremely embarrassing. Needless to say, I don’t know how anyone can maintain a sex life after being in a flare for so long. The last thing I feel is sexy. Can you manage a normal sex life with a flare?
Started prednisone. 60mg. And was also advised to start smoking medicinal marijuana. Oh, I was also put on Xanax to relieve the insufferable amount of anxiety I feel over having this disease. I was bouncing off the walls, high and eating my face off. I still only managed to gain a pound. Only…. 10 lbs would have been nice. I felt better, I was working out, my joints were no longer hurting. Then we lowered my prednisone and all the symptoms came back. My Dr. then talked to me about Imuran and I freaked out. I decided it was time to take matters into my own hands and see what alternative medicines I can try.
I tried a nicotine patch, which made me sick as a dog.. I tried nicotine gum, which was still pretty gnarly, and then I tried the E-Cig, which was as good as useless. THEN, after thinking I had UC for the past 8 years, my Dr. told me I have Crohns. This was news to me. As I’ve read that nicotine showed positive results for UC but negative results for Crohns. Why then was I advised that nicotine was a viable option?
I started seeing a holistic Dr. She does acupuncture, which seems to give me only temporary relief. She also put me on some kind of “remedy” which she will never explain what it is. I noticed several changes from the holistic Dr. More energy, less bleeding, better mental clarity and THREE TIMES as much urgency. I’m not sure at this point which I prefer.
I packed up my life, took a medical leave from my job and moved to a ski town, where I thought that being out of the city and being in the nice clean air would heal me. Boy was I wrong…. There’s no use living somewhere beautiful when all I see is the bathroom door…I also weened myself of prednisone without being in contact with my GI Dr. Afterall, my new Dr was the homeopath.
I started SCD last week. So far all I’ve accomplished has been loosing more weight with little changes in my urgency. My eyes are raw from crying. My face has some kind of crazy rash that I was told is from long term prednisone. And I have these weird sores on my arm pits which I’m also guessing is from the prednisone.
My symptoms are always worse in the morning. Heavy BMs in the morning. Usually formed. Not hard by any means, but not loose. Each BM feels like I’m giving birth out of my ass… sorry to be so crude.. but come on.. it’s a crude disease. After the birthing session, I’m ok from about noon onwards. After lunch and dinner I have cramps.. Then at night I get urgent gas. At this point, I’m not even sure what is coming out of me. It’s like a clear, mucus blood thing. Not a terrible amount of blood at all, but it’s like 2-3 times an HOUR of this urgency. I also wake up every hour usually with this same kind of urgency but no significant amount of stool.
I CAN’T REMEMBER THE LAST TIME I’VE SLEPT THROUGH THE ENTIRE NIGHT.
I have a flight back home in a couple of days to go back to my Dr. and have the long hard talk about immuno suppressants.
Maybe I’m doing the SCD wrong. I don’t know. All I know, is I can’t keep feeling like this. I’ve tried to get on top of this disease and I keep getting knocked on my ass… literally. I’m depressed, I’m lonely, and I feel trapped.
I am scared to try the immuno suppressants. My Mom thinks Remicade is going to be my savior drug, and all I can think is that I am way too fu&!$%ng young to have this infusion drug put in me. It was hard enough to accept mesalamine as my forever drug, now I have to add another to my regime?
