My doctor hates me (ulcerative colitis)
 

Colazal and Remicade haven't done anything for me over the last few weeks, and I've just gotten off of prednisone and Imuran. So my doctor prescribes some of these:
http://img509.imageshack.us/img509/7...6878390mj1.jpg

I get to start them tomorrow night...lucky me.

So, anyone else have to do enemas? This is my third trip taking them; I had been off of them for ten months.

Re: My doctor hates me (ulcerative colitis)
 

No thank god. How does one get colitis, much less ulcerative colitis?

Re: My doctor hates me (ulcerative colitis)
 

Whew. Good thing I didn't take any more latin and resisted the urge to use google... or goto med school.

Thankfully, I'll remain blissfully ignorant of how horrible this is until it happens to me.

Re: My doctor hates me (ulcerative colitis)
 

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No thank god. How does one get colitis, much less ulcerative colitis?

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Re: My doctor hates me (ulcerative colitis)
 

I'm not a doctor. I don't play one on the net. What I'm about to say is probably stupid and I don't mean to insult your physician who has likely covered this base if warranted. Please don't interpret the following as medical advice.

http://www.celiaccentral.org/What_is...QLxYAod8zqdYw/

Celiac disease may be misdiagnosed as "ulcerative colitis"-- embarking on a gluten free diet may relieve suffering of those with celiac (or at least I read that on the net).

Re: My doctor hates me (ulcerative colitis)
 

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No thank god. How does one get colitis, much less ulcerative colitis?

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That is the question. There's no one totally accepted explanation, though the most common one you hear is that it's an autoimmune response--you get an infection, your immune system cleans it up, and then it snacks on your large intestine for dessert. (There are places that won't let you donate blood if you have UC.)

I've tried at least a half-dozen medications. Either they work but are a pain in the ass (I've taken 10+ pills a day every day since diagnosis, plus I take something that's IV only), or they work but don't work if you take certain other meds (Imuran, which was great for a while), or they work and have side effects (osteoporosis from prednisone), or they don't work. Cortisone falls into category 1--you have to squirt cold goo up your bum and lay on your side for a half-hour so it can be absorbed into your colon. This thread might have to be moved to BBV4Life.

So...yeah. Anyone else with colitis/UC/Crohn's that wants to exchange life stories?

Re: My doctor hates me (ulcerative colitis)
 

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Celiac disease may be misdiagnosed as "ulcerative colitis"-- embarking on a gluten free diet may relieve suffering of those with celiac (or at least I read that on the net).

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I don't remember hearing about this, though I had heard that celiac disease is very frequently misdiagnosed. Unfortunately, no go. There are blood tests that pick up specific markers for UC and I came up positive.

In any case my problems (except during remission) usually come from fried food, high-fiber food, and (when I'm at my worst) dairy. White bread, buns, bagels, etc. haven't given me problems.

I appreciate you trying to get me out of this, though.

Re: My doctor hates me (ulcerative colitis)
 

you could always go to a naturpath herb guy, I mean if you're not getting results with the m.d. then what have you got to lose.

Re: My doctor hates me (ulcerative colitis)
 

Oh, I get results from prednisone and cortisone, they're just unpleasant to use.

I'm reluctant to go down the natural/herbal/organic route, since I tried something like that early on. It didn't do jack and it cost $250 a month, not covered by health insurance.

One of the members of my mother's family has GI tract problems, and he controls it entirely by diet. The problem is, everything he swears by are the things that I've been specifically told not to eat by multiple doctors.

Re: My doctor hates me (ulcerative colitis)
 

I'd say the worst case scenario is that you are one of the people who have symptoms from gm foods. it's so new no one would have any clue what is going on, and gm foodstuff is in almost all 'normal' US foods.

Re: My doctor hates me (ulcerative colitis)
 

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I'd say the worst case scenario is that you are one of the people who have symptoms from gm foods. it's so new no one would have any clue what is going on, and gm foodstuff is in almost all 'normal' US foods.

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Well, as I mentioned before, I've tested positive for UC markers, so that suggests an internal cause.

So...no one knows anyone with any sort of intestinal/bowel disorders? Going once...going twice...

Re: My doctor hates me (ulcerative colitis)
 

Ive never been happier that Asacol worked like a charm on my ulcerative colitis..

Re: My doctor hates me (ulcerative colitis)
 

YES! Someone else feels my pain!

I was on Asacol. My doctor decided to switch me to Colazal, which I understand is the same drug, just in bigger pills.

Brag: I'm not taking enemas after all. My doctor gave me Cortifoam instead. It still goes up the butt (Bob), but I only have to lie on my side for a few minutes instead of a half-hour.

Re: My doctor hates me (ulcerative colitis)
 

Im glad I never had to do that stuff. I think my UC was listed as like low to moderate, so never had to go the steroid or other paths..

Luckily after screwing around for a while diagnosing it (went through like a year of them thinking it was acid reflux and something else), I was able to find the right amount of drugs to keep everything in check. Granted had a couple of little flare ups while they where trying out different drugs and amounts. But nothing to bad..

Re: My doctor hates me (ulcerative colitis)
 

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Ive never been happier that Asacol worked like a charm on my ulcerative colitis..

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for that [censored] to work you must have have a mild case. I have cut way back on it (I was 4 X 3 a day). I am barely even taking it anymore and I seem to be alright. The whole thing sucks though.

Re: My doctor hates me (ulcerative colitis)
 

[ QUOTE ]
[ QUOTE ]
Ive never been happier that Asacol worked like a charm on my ulcerative colitis..

[/ QUOTE ]

for that [censored] to work you must have have a mild case. I have cut way back on it (I was 4 X 3 a day). I am barely even taking it anymore and I seem to be alright. The whole thing sucks though.

[/ QUOTE ]

Yeah, only had a mild case. I was on 4x3 also, now just doing 4x2..

Re: My doctor hates me (ulcerative colitis)
 

[ QUOTE ]
[ QUOTE ]
[ QUOTE ]
Ive never been happier that Asacol worked like a charm on my ulcerative colitis..

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for that [censored] to work you must have have a mild case. I have cut way back on it (I was 4 X 3 a day). I am barely even taking it anymore and I seem to be alright. The whole thing sucks though.

[/ QUOTE ]

Yeah, only had a mild case. I was on 4x3 also, now just doing 4x2..

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I was doing 4x3 Asacol a day (4,800 mg/day) until my doctor switched me to 3x3 Colazal (750 mg/pill, 6,750 mg/day) to crank up my dosage. I do that and Remicade--which I assume no one else has experience with? It was approved for UC by the FDA only two years ago.

I also had the experience of a misdiagnosis at first. I didn't go to the doctor until my landlord installed a low-flow toilet and my mother noticed bits of clotted blood in the toilet water. The doctor noticed a fissure down there and told me to wipe up with Vaseline after each deuce. I went into the doctor again, and they said the fissure had healed, so they didn't know what was going on. It was about another month before I had to go to the hospital with the whole shebang--distended stomach, intense pain, bloody diarrhea every hour, etc. on the morning I was supposed to take the AP exam for European History. I still can't watch the "Swords, Knives, and Daggers" episode of Modern Marvels, because that's what I was watching when the pain started.

Of course, I never would have gone to the doctor in the first place if it weren't for that toilet. For a while we said that a low-flow toilet saved my life.

Anyway, this is what I'm using instead of the enema:

http://img101.imageshack.us/img101/1...rtifoamsk5.jpg

You use the aerosol can to fill the syringe and the syringe to fill up your chute.

Re: My doctor hates me (ulcerative colitis)
 

I have read a lot of literature about remicade, but my doctor wouldn't give the okay for that. I am too "mild" to use something that drastic.

The worst thing about this whole thing is the constant stomach cramps that accompany it. I swear to god, you take your health for granted than BOOM!!! one day you wake up [censored] up and in the hospital.

Re: My doctor hates me (ulcerative colitis)
 

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I have read a lot of literature about remicade, but my doctor wouldn't give the okay for that. I am too "mild" to use something that drastic.

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This is correct--it's not something that you take lightly. A two-hour infusion is typical at the lab I go to, and there are some doctors who believe that Remicade is something that ought to be taken for a long, long time (life, even). My doctor doesn't believe in that, but I did very poorly when they removed me from Remicade this spring, so I'm looking at least a few more years of infusions.

OTOH, it's a good way to meet people who are in the same boat as you. Some people who take it do it for arthritis, but most of the folks at my lab are there for Crohn's with a few UC patients sprinkled in.

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The worst thing about this whole thing is the constant stomach cramps that accompany it. I swear to god, you take your health for granted than BOOM!!! one day you wake up [censored] up and in the hospital.

[/ QUOTE ]

QFT--and I can't do morphine. True story: the first time I tried morphine, the nurse brought in two syringes to squeeze in through my IV line. My reaction was so bad that I puked before she could even start giving me the second one.) Demerol does the same thing, though it's usually a few minutes before I throw up.

Fentanyl does the trick, though. I remember my first fentanyl trip in the hospital. I said to my Mom, "I feel kind of funny." (I was 15 then.)

"Of course you feel funny, hon. You're high."

Usually pain isn't my issue. My issue is that by the time the third day in the hospital rolls around, your symptoms subside, but then it's another couple days before the doctor clears you to go home. I always wind up sitting there for the last 48 hours or so, feeling like a fool.