So I had another post where my string of doctors has been horrible, but I have been doing ok with only one flareup after eating some wild rice, and it lasted two-three days. I can bascially eat anything now (except sausage with natural casing, I'm still scared to try it after the last time landed me in the hospital for 3 days).
I started having smaller stool last December, it got really flat, in one direction. It would be normal width in one direction and about
30 to 50% as wide in the other. I told my doctor (specialist) back in December, and he said it's normal. I told him again in May, he said "It isn't cancer, we'll check in August".
I've already had the orangish/red rash that people mention, on my face, back, inside my ears, on legs, all over arms, and chest. It gets worse in sunlight or just if I get hot and sweaty period. He looked at it and didn't say anything. It itched so bad I wanted to literally scratch the skin off and in some areas I literally almost had.
I would have to wrap my face and arms in a cold wet towel, just to get sleep. Nothing stopped the itching, and the rash would come and go, maybe lasting a week, maybe months. He wouldn't say anything about
it. I checked and it was listed as a RARE and SERIOUS side effect.
I went for my colonoscopy yesterday and mentioned to the nurse that the rash still comes and goes, but other than that I only poop once ( in rare occasion twice) a day. My poop is light brown, I have no blood, no pain, but my poop is flat (actually I said stool, but it sounds weird to me). I told her that when I poop, it felt like the stool isn't touching part of my butthole as it comes out, sort of like there was a piece of cardboard the stool was sliding across. I told her I can feel something in there. I asked "Is flat stool for 8 months normal"? It basically went flat in a day or two all back in December and never went back to round.
It was almost like if you stick a piece of candy in your cheek, you just feel it and know it's there. That is how it felt, like something was just sitting up in there. Maybe it's odd to describe it like that, and I don't have experience putting things in my butt to base if off of, but it just felt odd.
I also said that the rash is mentioned as rare and serious and that it said I need to consult my doctor. She asked if I had went to a dermatologist. I told her I had not, since it said to consult my physician. She asked if I had mentioned it to him. I told her I had, and his response was "Pshhh, come back in two months for a follow up" as he walked out of the room.
I woke up after the procedure and asked the nurse if they had removed anything, I could literally feel something was gone. She said, "Dunno".
After the 30 minute recovery time, the doctor comes in and says "Well we found a huge polyp and removed it, with someone your age (34) and this disease, these things can turn into stuff". I told him I could feel it was gone, and he said "Nope, it's about
4 to 5 inches in, unless you..." and he stopped saying anything and looked at my mother who was there. I guess he was going in a bad direction with it.
He said I can find no trace of collitis anywhere, and the pictures did look like a healthy colon.
Now here's why I have posted the above...
Well over a year ago, after being allergic to Lialda, and not being given any other drugs, he immediately started me on Remicade. I asked to try other drugs, but he insisted this was what I had to take and basically my only option. The bleeding and pooping 30 times a day had quieted down a lot around my first Remicade treatement to around 7 to 10 times a day, and when I went back for a follow up, he went from saying I had to take it for 6 months to a year, to saying it was going to be something I could never stop, even if my colitis got 100% better. He said you cannot choose your drugs, this is not a carnival ride you can get off. I felt so foolish for asking, I kept taking it. I'm not sure if the Remicade caused me to get better, because as soon as the colitis had appeared it had started tapering off. I eventually got better and stayed better.
I was so shocked, and wondered why he had told me one thing and then changed it. I just accepted it with bit of anger. When he had first told me about
the drug, he introduced it this way ,"Now there is a tumor risk with the medicine we are starting you on, but you're at such a high risk anyway, it won't matter".
I really haven't had any problems, and after he gives me the polyp and all clear (if the biopsy comes back good), he says "and hold off on any more Remicade, if you have a flare up, I'll write a prescript
ion". He also said , "Plus it's really expensive" that was it, he left. I have insurance, I only pay for the E.R. visit for my infusions and that's only $25 $50. I pay nothing for the medicine.
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So um....I'm confused. I was a bit groggy from the sedation still. The more I think about
, the more *** I become.
1. Puts me on Remicade, says I can never stop if I get better because the colitis will return.
2. Takes me off of it, saying "You're all good now, I'll write a prescript
ion if it comes back;"
3. Spent less than 3 mins and walks out of room with me trying to ask a question and never comes back, nurse brings wheel chair and takes me to my car.
I feel something happened and they're not telling me. This just feels fishy. They would never do or schedule any blood work on me, I got my mother who works in the Medical Records department at another hospital, to get some scheduled for me (it was all perfect, right down to cholesterol and all btw). They never asked if I had any done, if I asked, they'd say "we will worry about
that later".
Maybe I got brain damage when I was put under, seriously something is bugging me so badly about
this and I can't figure it out. The way he acted reminds me of when someone is being investigated on a tv show and they avoid questions and leave the room.
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What would you guys do? I'm not a paranoid type person, but I swear something is weird. It's like someone messed up some where. He didn't want to schedule follow ups, he didn't even mention coming back for another colonoscopy in the future.
I had not been a bad patient, I rarely asked questions and was polite. I did exactly what they told me. They acted like they wanted me gone.
Post Edited (trickyspark) : 8/7/2012 6:37:09 PM (GMT-6)