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Ulcerative Colitis
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Posted 11/22/2012 1:18 AM (GMT 0)
I'm not feeling very confident with the care I'm getting. Or maybe I should say hopeful. Maybe a bit of both.

I saw my GI today. He didn't have any idea I had been in emergency last month. He didn't get the request from the emerg doc to see me sooner, he didn't get my stool test results, he didn't get any of the messages I left to come in and see him before my scheduled appointment... nothing.

Anyhow, he changed my Salofalk enema (which I'm not retaining well) to a suppository form (not sure of the name). The pharmacy has to source them, they've never heard of a 1000mg dose. I'm wondering if I'm going to get a football. C-r-u-d! shocked Is this a real dose?

As far as the prednisone taper, now that I'm at 20 mg, he wants me to stay for 7 days at this dose and then go to 15 for seven. I will see him before the next drop down. He also mentioned I may need to go to the next level of drugs.

I can see this doc is so busy, that all he is able to do is manage drugs.

This disease and this treatment sucks.
Posted 11/22/2012 1:28 AM (GMT 0)
I think the lost requests and messages are not excusable. I would switch doc unless the problem was explained and assurance it was unlikely to happen again.

I think most of enemas/suppositories are fillers and greater dose does not generally mean much greater size.

I would actually taper slowes, and make smaller than 5mg steps. maybe 2.5mg steps.

a traditional doc does two things diagnose and treat. that means tests and drugs. most alternative things you need to research and try out for yourself
Posted 11/22/2012 1:31 AM (GMT 0)
fyi, typing "mesalamine suppository 1000mg" into google brings up CANASA as the 1st search result. If the pharmacy could not do this in less than a minute, you likely want another pharmacy. like maybe one that has computers.
Posted 11/22/2012 1:32 AM (GMT 0)
Ask your primary care doc for a referral to another GI. If he's not taking calls from other doctors about your care he's failing in his primary responsibility to you. This time your life didn't depend on it. This time.

Run like the wind.
Posted 11/22/2012 3:14 AM (GMT 0)
The fact that he never received your messages to come in sooner is NOT good. If the instructions from Emergency said to be seen by your GI ASAP, did you tell the message taker?

Also, are you sure the hospital sent the info to the doctor's office? Just trying to check if the errors were primarily the hospital's or the Dr.'s office. If everything made it to the office BUT didn't make it to the doctor, then the Dr. Has serious staff issues. I agree with the person above that he should have said that he would find out/fix what happened.

Also, I think you'll find that most GI's are just going to test you and give you drugs. If the drugs don't help you, then they are going to try yet another drug :(
Posted 11/22/2012 5:38 AM (GMT 0)
DB, I'm definitely planning on the slower pred taper and I checked out the suppository. Thanks.

I'm not in a position to change GI doctors (we don't have enough of them in my city, that's the reason he's not very attentive. The pharmacy, didn't have any there, they have to get them in, sorry if I made that worse than it sounded but the pharmacist did say he hadn't heard of that strength.

I'll have to contact the hospital to see what can be done about the emerg visit and hopefully finding my test results.

I've started a few things on my own. I found a functional medicine practitioner in the US and have started with some tests. Stool and urine. $$$$. Cost $50 extra dollars to have the test boxes delivered here and over a hundred to have them couriered back to the states. That is on top of the costs of the tests and the practitioners time to interpret the results. I've also found a naturopath in my city who I can also utilize to try to keep me as healthy as possible. I don't want to do moodoo voodoo things, just keep what I can, healthy.

I'll keep asking my insurance paid doctor for as many tests as possible. Our healthcare system is so overburdened it's all they can do to provide sick care I guess. Welcome to the real world - Lodi
Posted 11/22/2012 6:04 AM (GMT 0)
I remember my pharmacy was freaking out last year bc the doctor prescribed 1000 mg Canasa suppositories TWICE per day. They were sure it was suppose to be 500 mg suppositories. I got a huge lecture from the pharmacist about how rare this dosage was....etc, etc.
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