Posted 6/4/2012 11:04 PM (GMT 0)
I'll give a little background on my UC.
I have never, up until the day it began, ever had any troubles. I went to work at a hospital in July 2010, and within a week I had noticed pink spots on my stool. Within another week or two they became red stripes, almost like the red on a candy cane (without the spiral design of course).
Within 2 more weeks or so I began having changes in stool shape, after that pure blood. There would be times with no stool, just blood. Almost like you emptied a can of tomato soup in the toilet. It got harder to control my trips to the bathroom, eventually I had no control. If it hit, I had about 10-30 seconds. My insurance had not kicked in, and to avoid a pre-existing condition, I suffered for 3 months. I would go about 10-15 times in the day, and at first, never at night.
It then got to be 10-15 times in the day, and 8-12 times at night.
Eventually my insurance kicked in, and I got a colonoscopy. They thought it might be C. Difficile, but all results were negative and I was sent to a specialist. I walk in and he looks at the pic, says this is U.C., I'm writing you a prescription for Lialda, take this the rest of your life, and told me to read up on the disease. A total of a 3 minute visit and he walked out with me trying to ask questions.
I kept taking Lialda, it really did nothing. The bleeding had sort of tapered off some right before the colonoscopy. I had lost 20 pounds, just what a skinny guy needs to do.
I found another doctor, as the one kept saying take Lialda, it will eventually work. The bleeding was sporatic, the trips to the bathroom just as frequent, more than 20+ times in 24 hours, and painful, even breaking wind felt like I was passing an orange ( not that I've ever passed one).
He thought perhaps it was Irritable Bowels Syndrome, gave me some medicine for that. It didn't help, he told me keep on with Lialda and come back in 6 months. The whole time I was on Lialda, I was having horrible joint pain. I eventually stopped it, and really didn't notice the bone pain slowly stopped. Each time I'd try Lialda again, I'd get swollen joints. My foot and knee got so swollen I couldn't walk or stand for them to be touched for 2 days.
I went to an "excellent" doctor, or so I was told. He introduced himself and compared himself to other colon specialists like this. "I am like a fine French chef, while all of these other guys are like short order cooks". A short time later, he did a colonoscopy on me and put me on Remicade. I've never been given any medicine except Lialda and Remicade. Before starting it, his words were "It causes tumors, but you're at such a high risk, don't worry about it". Any time I describe any troubles I've had on follow up visits, he says not to worry, it's just inflammation. I developed a bad rash on my forearms, then on and in my ears, behind my ears, on my neck, throat, and my cheeks. It started out as small red bumps, then there were so many it became a reddish orange itchy patch. I looked it up online and it says "If you develop a rash while on Remicade, tell your physician immediately as this is a rare and serious side effect, especially if it becomes worse in the sun." Just a dash to the car made it feel like a full blown sunburn.
My dose of Remicade after the rash came seemed to do something as the rash dried up and went away. Two weeks ago the rash appeared over a 2 hour period. It went from smooth skin to bumps from my forehead to my throat, in my ears, eyebrows, all in my hair, and on my forearms and the small of my back. It itched so badly I wanted to just pull my skin off (I know that sounds bad, it was horrible). Two days later the itching stopped, 4 days later there are little flat spots where the bumps were and they kind of look like scars. The last time it lasted a month and made the same flat scar looking places that eventually fade.
I mentioned it to my doctor, both family and specialist. They said don't worry about it.
I told my specialist that my stool has been either flat, sometimes normal width in one direction, but nearly totally flat in another. I told him at times it is no bigger than a pencil or crayon. He said not to worry, he knows it isn't cancer. He will not write orders for blood tests, which I hear is standard for people on Remicade.
They never tried me on the other medicines (the 5 A's, etc). Should I find another specialist? He at first told me 6 months of Remicade, after my first dose he changed it to a lifetime program. I kind of thought a medicine you tried if the others didn't work. I'm unsure how to find a good doctor. The first guy was horrible, this guy is worse, and the one I checked with in between them when I was at my sickest wouldn't even give me any Prednisone or any meds for 2 months so they could do a colonoscopy to see how severe my disease really was.