I just got back from the doctor and all my biopsies were negative (sigh), no diagnosis. I told him that I need something - I am down to 98 lbs and I cannot afford to lose any more weight. I suffer from malabsorption and continuous diarrhea - esepecially nocturnal diarrhea. He did give me a prescription for Questran and asked to see me in a week. He still calls my condition IBS since he can not find any clinical evidence of anything else so far.
Oh and here is a funny one - the nurse took my weight - which was 100 lbs and she wrote down 150 lbs. When I told him I was 98 lbs. - he said huh? It says here 150 - gee doesn't anyone have any common sense - if he took the time to look at me, he should have known I am definitely not 150 lbs......
Have any of you tried Questran - and if so - any relief??
Undiagnosed :(
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barbaranoela
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so sorry Cat-----thats Xactly what I was termed --by first Dr.-whose name is KRAMM---and he gave me some meds. that didnt do a damn thing--
I went down alotta weight also--got into a size 2 petite--so U can take it from there--frustrating isnt it--
I finally got the name of a Doc in NYC and he gave me back my life~~~~ and the words that came outta his mouth--when he took one look at my emaciated body shocked me!!!
I do hope better things turn your way~~~~
Barbara
I went down alotta weight also--got into a size 2 petite--so U can take it from there--frustrating isnt it--
I finally got the name of a Doc in NYC and he gave me back my life~~~~ and the words that came outta his mouth--when he took one look at my emaciated body shocked me!!!
I do hope better things turn your way~~~~
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Oh, I'm so sorry. You must be so exhausted and disappointed not to get some help, and some explanation.
Questran did help my mother when she was struggling with a recurrent C. difficile infection. I was worried because it can interact with other medications. She had previously had reactions to two different medications, so I thought she had a better-than-even chance of not tolerating this one, but I was wrong.
I hope you get some relief from the D, and can get some rest and stabilize your weight.
Sending you healing thoughts,
Sara
Questran did help my mother when she was struggling with a recurrent C. difficile infection. I was worried because it can interact with other medications. She had previously had reactions to two different medications, so I thought she had a better-than-even chance of not tolerating this one, but I was wrong.
I hope you get some relief from the D, and can get some rest and stabilize your weight.
Sending you healing thoughts,
Sara
Sue,
I'm very sorry to hear that bad news.
Some GI doctors are so unfamiliar with diagnosing MC that they either misinterpret the pathology report, or they arbitrarily take it upon themselves to ignore what it says, and then they incorrectly inform the patient that nothing was found. We have had quite a few reports of that happening, among the members here.
Is there any chance you might be able to get a copy of the pathologist's report? We can interpret it, just in case he's overlooking or ignoring some of the findings in the report.
The other possibility is that the GI doc didn't take enough biopsies, or he didn't take them from the most "productive" areas in the colon. With MC, the colon does not contain contiguous inflammation from one end to the other. Inflammation is typically distributed in "patches", at arbitrary locations, but the highest concentration of those areas of inflammation is normally found in the ascending colon, (the right side colon, which connects to the cecum, at the terminal ileum). This is, of course, at the distal end of the colonoscope range, so in some situations, the examination does not even reach that far. And, of course, if a sigmoidoscope is used, instead of a colonoscope, then it would be impossible to take biopsy samples from the ascending colon, since a sigmoidoscope won't reach anywhere near that far. When properly done, a colonoscopy exam may even include a section of the terminal ileum, and when it does, inflammation is frequently found in those biopsy samples taken from the terminal ileum, as well, (proving that MC is not just a disease of the colon, as the official medical description of the disease incorrectly implies).
Anyway, the point is, if the examining doctor is not well acquainted with properly diagnosing MC, it's easy to miss the patches of inflammation that are the markers of MC, and if they are missed, then the diagnosis will obviously be negative.
The fact that he prefers to cling to a diagnosis of IBS, makes me very suspicious of his diagnostic skills, because the reality is, IBS does not exist - it's simply doctorspeak for "I Be Stymied", IOW, it means "I don't have the foggiest idea what's wrong with you". The difference between IBS and MC is almost always, properly-collected and properly-analyzed biopsy samples.
Tex
I'm very sorry to hear that bad news.
Some GI doctors are so unfamiliar with diagnosing MC that they either misinterpret the pathology report, or they arbitrarily take it upon themselves to ignore what it says, and then they incorrectly inform the patient that nothing was found. We have had quite a few reports of that happening, among the members here.Is there any chance you might be able to get a copy of the pathologist's report? We can interpret it, just in case he's overlooking or ignoring some of the findings in the report.
The other possibility is that the GI doc didn't take enough biopsies, or he didn't take them from the most "productive" areas in the colon. With MC, the colon does not contain contiguous inflammation from one end to the other. Inflammation is typically distributed in "patches", at arbitrary locations, but the highest concentration of those areas of inflammation is normally found in the ascending colon, (the right side colon, which connects to the cecum, at the terminal ileum). This is, of course, at the distal end of the colonoscope range, so in some situations, the examination does not even reach that far. And, of course, if a sigmoidoscope is used, instead of a colonoscope, then it would be impossible to take biopsy samples from the ascending colon, since a sigmoidoscope won't reach anywhere near that far. When properly done, a colonoscopy exam may even include a section of the terminal ileum, and when it does, inflammation is frequently found in those biopsy samples taken from the terminal ileum, as well, (proving that MC is not just a disease of the colon, as the official medical description of the disease incorrectly implies).
Anyway, the point is, if the examining doctor is not well acquainted with properly diagnosing MC, it's easy to miss the patches of inflammation that are the markers of MC, and if they are missed, then the diagnosis will obviously be negative.
The fact that he prefers to cling to a diagnosis of IBS, makes me very suspicious of his diagnostic skills, because the reality is, IBS does not exist - it's simply doctorspeak for "I Be Stymied", IOW, it means "I don't have the foggiest idea what's wrong with you". The difference between IBS and MC is almost always, properly-collected and properly-analyzed biopsy samples.
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.
Sue--
I absolutely agree with Tex. I was also diagnosed with IBS, as were many of us here. My doc actually wanted to put me on a rather dangerous "black box" drug for it(1); that is, until I insisted on another colonoscopy and got my diagnosis.
I have used Questran myself. I dissolved it in some apple juice. I only used it when the D was so bad I could not leave the bathroom as it, at least for me, resulted in constipation. It works differently for different people.
Please, get a second opinion and get a copy of your path report so the forum can interpret it.
Mags
(1) I & he would have had to sign off on each prescription absolving the maker of the drug from any responsibility should I have any adverse results, including death.
I absolutely agree with Tex. I was also diagnosed with IBS, as were many of us here. My doc actually wanted to put me on a rather dangerous "black box" drug for it(1); that is, until I insisted on another colonoscopy and got my diagnosis.
I have used Questran myself. I dissolved it in some apple juice. I only used it when the D was so bad I could not leave the bathroom as it, at least for me, resulted in constipation. It works differently for different people.
Please, get a second opinion and get a copy of your path report so the forum can interpret it.
Mags
(1) I & he would have had to sign off on each prescription absolving the maker of the drug from any responsibility should I have any adverse results, including death.
I forgot to address the Questran - it's simply a bile acid sequestrant, and it does absolutely nothing to control the inflammation that causes MC. As Mags mentioned, it's main side effect is constipation, so that's why so many GI docs prescribe it for MC, when they can't think of something better to prescribe. IOW, it masks the symptoms, but it doesn't treat the underlying cause of the disease.
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.
Sue,
Yes, Please ask for a copy of your colonoscopy pathology report. I learned the hard way. My 1st GI doc chose to tell me IBS when the report said in capital bold letters MICROSCOPIC COLITIS. Seven years later when he retired and I went to an internal medicine dr she requested the report and immediately had me redo the colonoscopy. The 2nd one said the same thing, MC, and I have LC and CC. Also, if an antibiotic helped you please request a hydrogen breath test for small intestine bacterial overgrowth, SIBO. Mine was negative and no antibiotics worked on me. Several tried but they only made me worse. Don't take one unless you need it! That's my advice! I tried Questran and it just gave me grainy D.
Pat
Yes, Please ask for a copy of your colonoscopy pathology report. I learned the hard way. My 1st GI doc chose to tell me IBS when the report said in capital bold letters MICROSCOPIC COLITIS. Seven years later when he retired and I went to an internal medicine dr she requested the report and immediately had me redo the colonoscopy. The 2nd one said the same thing, MC, and I have LC and CC. Also, if an antibiotic helped you please request a hydrogen breath test for small intestine bacterial overgrowth, SIBO. Mine was negative and no antibiotics worked on me. Several tried but they only made me worse. Don't take one unless you need it! That's my advice! I tried Questran and it just gave me grainy D.
Pat
Just a quick update 
Even though I do not have a diagnosis - I have to say that the Cholestyramine (better known as Questran) has been working - So far two nights of uninterrupted sleep (no nocturnal diarrhea urgency) and I even went almost normal today - after all this is only my third day with the medication. I do have to say - that even with eliminating so many foods from my diet (gluten included), I still was not feeling right. Right now I am not going wild trying to reintroduce foods back in my system - but am hoping eventually I can. I did have baked french fries last night (I never fry them) and so far today I am okay.....
Even though I do not have a diagnosis - I have to say that the Cholestyramine (better known as Questran) has been working - So far two nights of uninterrupted sleep (no nocturnal diarrhea urgency) and I even went almost normal today - after all this is only my third day with the medication. I do have to say - that even with eliminating so many foods from my diet (gluten included), I still was not feeling right. Right now I am not going wild trying to reintroduce foods back in my system - but am hoping eventually I can. I did have baked french fries last night (I never fry them) and so far today I am okay.....
Sue, I'm so glad you've gotten some relief, and some rest. I hope you'll get better answers in time, too - but relief and rest are welcome and wonderful. Great news that you've found something satisfying to sustain you while you take the cautious approach to re-introducing foods. (I agree with Gloria - wise idea!)
Best to you for recovery and remission,
Sara
Best to you for recovery and remission,
Sara
Sue--
Baked fries worked for me, too. They really helped me put some weight back on! I'm glad the Questran is working out for you. I should have mentioned that it helped my grandmother tremendously, so it really does work for some people. I sure helped me when I needed it. I keep some on hand just in case.
Mags
Baked fries worked for me, too. They really helped me put some weight back on! I'm glad the Questran is working out for you. I should have mentioned that it helped my grandmother tremendously, so it really does work for some people. I sure helped me when I needed it. I keep some on hand just in case.
Mags