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How Many of Us Were Misdiagnosed With IBS?
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Were you ever misdiagnosed with IBS?
Yes
55%
 55%  [ 34 ]
No, but it took years to get a diagnosis of MC, and at least one of my doctors suspected IBS
13%
 13%  [ 8 ]
No, I was never misdiagnosed with IBS, and my MC was promptly diagnosed
31%
 31%  [ 19 ]
Total Votes : 61

Author Message
MotherGrizzly

United States

Joined: 17 Sep 2011

Posts: 13
User's local time:
2017 Sep 24 - 2:27 AM


Food Intolerances : dairy, soy, eggs, gluten

PostPosted: Sat Nov 12, 2011 7:58 pm    Post subject: Reply with quote

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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Lesley
King Penguin
King Penguin


Joined: 03 Sep 2011

Posts: 2914
User's local time:
2017 Sep 24 - 12:27 AM


Food Intolerances : Too many to list

PostPosted: Thu Nov 17, 2011 7:22 pm    Post subject: Reply with quote

Cynthia - are you sure you aren't seeing my doc?

MotherGrizzly - ditto?
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draperygoddess
Rockhopper Penguin
Rockhopper Penguin


Joined: 29 Aug 2011

Posts: 558
User's local time:
2017 Sep 24 - 2:27 AM


Food Intolerances : gluten, lactose, casein, eggs, MSG, potatoes/potato starch, soy,peanuts, bananas, tomatoes, coconut,grapes, citrus, tree nuts, apples--cautiously adding back all but Big 4
Location: Tennessee

PostPosted: Fri Nov 18, 2011 7:16 am    Post subject: Reply with quote

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! scared
_________________
Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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Lesley
King Penguin
King Penguin


Joined: 03 Sep 2011

Posts: 2914
User's local time:
2017 Sep 24 - 12:27 AM


Food Intolerances : Too many to list

PostPosted: Sat Nov 19, 2011 12:40 am    Post subject: Reply with quote

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!
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jmc09

unknown IP

Joined: 09 Aug 2011

Posts: 5
User's local time:
2017 Sep 24 - 2:27 AM




PostPosted: Wed Feb 15, 2012 3:43 pm    Post subject: Reply with quote

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?
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30485
User's local time:
2017 Sep 24 - 2:27 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Feb 15, 2012 4:52 pm    Post subject: Reply with quote

That's what most people prefer for MC, if they choose to use a medication.

Tex
_________________
cowboy

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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coryhub
Gentoo Penguin
Gentoo Penguin


Joined: 12 Jul 2011

Posts: 434
User's local time:
2017 Sep 24 - 2:27 AM


Food Intolerances : Soft cheese, gluten, roughage: anything with a fibre, seed, skin, raw etc.
Location: Central Texas

PostPosted: Thu Feb 16, 2012 10:27 am    Post subject: Reply with quote

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 64
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
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jmc09

unknown IP

Joined: 09 Aug 2011

Posts: 5
User's local time:
2017 Sep 24 - 2:27 AM




PostPosted: Sat Feb 18, 2012 11:11 am    Post subject: Reply with quote

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?
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30485
User's local time:
2017 Sep 24 - 2:27 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Feb 18, 2012 11:44 am    Post subject: Reply with quote

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
_________________
cowboy

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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jmc09

unknown IP

Joined: 09 Aug 2011

Posts: 5
User's local time:
2017 Sep 24 - 2:27 AM




PostPosted: Sun Feb 19, 2012 4:15 am    Post subject: Reply with quote

Thanks Tex.

The only problem i have is the bloating and a little bit of fatigue,nothing too serious.

Is it safe to take supplements such as calcium with vitamin d while using Entocort?
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30485
User's local time:
2017 Sep 24 - 2:27 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sun Feb 19, 2012 8:54 am    Post subject: Reply with quote

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
_________________
cowboy

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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HappyBird
Gentoo Penguin
Gentoo Penguin


Joined: 17 Sep 2015

Posts: 305
User's local time:
2017 Sep 24 - 8:27 AM


Food Intolerances : GF, DF, SF, LF.

PostPosted: Sat Sep 19, 2015 11:25 am    Post subject: Reply with quote

My GP still has IBS on the brain. I'm sure it's the only bowel problem he knows. I have been referred to a GIT Specialist who believes there may have a stricture causing my problem - no, no!
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