How Many of Us Were Misdiagnosed With IBS?
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MotherGrizzly
- Posts: 13
- Joined: Sat Sep 17, 2011 6:52 pm
It's just appalling to me that collectively, we've been to so many GI doctors, and we get the same run-around. It was clear to me that my GI didn't even bother reading my charts before he "checked in" to see how I am doing. He was more than happy to send me on my way with prescriptions and the ever-present "eat oatmeal! eat salads!" This board truly is a lifesaver for me; his advice to eat Pepto-Bismol tablets indefinitely and dine on salads because IBS is LC makes me so angry!
Just diagnosed LC--thought I was IBS-D for the last 30 years! : /
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Lesley,
Tee hee! A knowledgeable GI is hard to find! Even good pathologists seem to be in short supply: the first one didn't even do a lymphocyte count (at least I suspect this is why he and the doc refuse to tell me what the count was), and even the Vanderbilt pathologist sent only a one-sentence report: "no significant histological changes." Well, I find it very significant!
Tee hee! A knowledgeable GI is hard to find! Even good pathologists seem to be in short supply: the first one didn't even do a lymphocyte count (at least I suspect this is why he and the doc refuse to tell me what the count was), and even the Vanderbilt pathologist sent only a one-sentence report: "no significant histological changes." Well, I find it very significant!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Mine called today (left me a message) to see how I am doing. I will tell him (when he calls again) I am still not using PPIs and I am alive, if uncomfortable.
It astounds me that they all sound the same. Wouldn't you think that seeing so many people with these symptoms would make even 1 or 2 of them suspicious? I mean, our alimentary canals start at our mouths and end at our anus. It's all one system, so why can't they make a connection between each part? My doc seems to treat each part as separate from the others. And the more I hear of others, they do too.
It figures, I guess.
Docs treat us as if we are a bunch of different systems and not a whole, so why shouldn't they treat even the digestive system as a bunch of different parts?
I am going to bed. Philosophical thinking at this time of night makes my head ache!
It astounds me that they all sound the same. Wouldn't you think that seeing so many people with these symptoms would make even 1 or 2 of them suspicious? I mean, our alimentary canals start at our mouths and end at our anus. It's all one system, so why can't they make a connection between each part? My doc seems to treat each part as separate from the others. And the more I hear of others, they do too.
It figures, I guess.
Docs treat us as if we are a bunch of different systems and not a whole, so why shouldn't they treat even the digestive system as a bunch of different parts?
I am going to bed. Philosophical thinking at this time of night makes my head ache!
Sorry to bump an old thread.
I have been diagnosed the wrong way round. I was told I had MC back in 1992 after 18 months of Diarrhoea,cramps,bloating etc and used Sulfasalazine successfully for 15 years before it stopped working.
In the 3 or 4 subsequent Colonoscopies I've been told I have IBS.
My symptoms have never changed its just that I have been able to cope on a mixture of Imodium then Codeine and then back to a mixture of both Codeine and Imodium. If I stop taking all medication for a few days I just return to permanent watery Diarrhoea.
I've tried loads of Antidepressants which do nothing positive for me so I'm going to ask my GP if I can try a short course of Entocort/Budesonide to see if they might help. I've tried Mesalamine,which just dont work and Prednisone didnt do anything when I tried them for another unassociated illness.
Anybody had any experience with Entocort for MC?
I have been diagnosed the wrong way round. I was told I had MC back in 1992 after 18 months of Diarrhoea,cramps,bloating etc and used Sulfasalazine successfully for 15 years before it stopped working.
In the 3 or 4 subsequent Colonoscopies I've been told I have IBS.
My symptoms have never changed its just that I have been able to cope on a mixture of Imodium then Codeine and then back to a mixture of both Codeine and Imodium. If I stop taking all medication for a few days I just return to permanent watery Diarrhoea.
I've tried loads of Antidepressants which do nothing positive for me so I'm going to ask my GP if I can try a short course of Entocort/Budesonide to see if they might help. I've tried Mesalamine,which just dont work and Prednisone didnt do anything when I tried them for another unassociated illness.
Anybody had any experience with Entocort for MC?
I was initially diagnosed with acid reflux. I could never figure out how the doctor came up with that diagnosis because when I read online I could see that acid reflux was not the same symptoms I'd been complaining about. I no longer have that doctor in my life because he proved to be a lazy, rushed, unconcerned, drug pusher type of Doctor.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
My doctor has given me a prescription for Entocort at 6mg a day.
I've read that I am supposed to take them in the morning but not sure if I should take them before or after breakfast. I'm getting some severe bloating and a bit of pain after a couple of days.
Is this normal and how long should it take to kick in if it helps?
I've read that I am supposed to take them in the morning but not sure if I should take them before or after breakfast. I'm getting some severe bloating and a bit of pain after a couple of days.
Is this normal and how long should it take to kick in if it helps?
It's normal to have bloating and pain with active MC, but it's not normal for Entocort to cause it. The only digestive issue that Entocort commonly causes is constipation. Have you altered your diet? Gluten typically causes bloating for anyone who is gluten-sensitive, and dairy products can do that also, for most of us. If you've started having headaches, nausea, dizziness, vision problems, balance issues, etc., since you started taking it, you may be allergic to it.
Many people see some improvement in a week or so. Most see improvement in less than 6 weeks. If you don't see improvement within 8 weeks, it means that you will need to alter your diet, in order to achieve remission.
6 mg is a low dose. If it works at all, it will probably take longer than normal. It shouldn't matter whether or not you take it before or after breakfast - however, if you have a bad malabsorption problem, (due to frequent, watery D, and poor digestion), you might absorb it better if you take it before you eat, since for someone with active MC, the ingestion of food typically triggers another round of D.
Tex
Many people see some improvement in a week or so. Most see improvement in less than 6 weeks. If you don't see improvement within 8 weeks, it means that you will need to alter your diet, in order to achieve remission.
6 mg is a low dose. If it works at all, it will probably take longer than normal. It shouldn't matter whether or not you take it before or after breakfast - however, if you have a bad malabsorption problem, (due to frequent, watery D, and poor digestion), you might absorb it better if you take it before you eat, since for someone with active MC, the ingestion of food typically triggers another round of D.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Yes, any vitamins should work fine with Entocort. It's definitely a good idea to take vitamin D, because the inflammatory bowel diseases, including MC, tend to deplete our vitamin D, so most of us have a low level, unless we take a substantial supplement. Vitamin B-12 is another vitamin that tends to become deficient for people who have MC, so many of us take a B-12 supplement, or get B-12 injections from our doctor, (if our B-12 level is especially low).
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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anneelisemd
- Posts: 3
- Joined: Wed Sep 06, 2023 11:08 am
Re: How Many of Us Were Misdiagnosed With IBS?
I was misdiagnosed for 20 years!!! doctor after doctor. And I am a physician.
Re: How Many of Us Were Misdiagnosed With IBS?
That may be a new record.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.