Creon 12,000 USP Unitts
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Barbara Maresca
- Posts: 8
- Joined: Fri Dec 09, 2011 1:58 pm
Creon 12,000 USP Unitts
Saw a new Gastro Dr. and after 5 years of MC I was told that I may have an infection and was given Flagyl for 10 days - no luck D did not stop but I have lost my sense of smell and taste. Stool samples showed excess fat so he prescribed Creon before every meal and snack. It makes me feel very bloated and nauseous. Also prescribed Cholestyramine once a day. Still have D and now nausea. This dr. did not feel the need to repeat Endoscopy or Colonoscopy since I had both in 8/2011. Next visit I am going to request both exams because none of the meds are really helping. Any advice???? HELP
lymphocytic colitis, gluten free
Hi Barbara,
I'm sorry to hear that you're not responding well to treatment. Frankly, though many members here have had repeat colonoscopies, I'm aware of only one case where any new evidence was discovered, and that one may have been incorrectly diagnosed on the second exam. When a patient doesn't respond to treatment, many doctors recommend repeat exams, to try to find what was missed the first time, but it's extremely rare for something to actually be found. At least your doctor seems to be aware of the futility of subjecting a patient to a repeat exam, so soon after the last one.
Steatorrhea (excess fat in the stool) is a very common problem with active LC. Usually, continuing inflammation, and the resulting clinical symptoms, are signs that the disease simply isn't being adequately treated. I see that you are gluten-sensitive. Are you aware that most of us are also sensitive to all dairy products, and about half of us are also sensitive to soy and all legumes? Some of us are also sensitive to eggs, and possibly other foods.
If I were in your shoes, I would either order some stool tests from EnteroLab, to test for sensitivities to casein, soy, or possibly other foods, or I would cut dairy and soy out of my diet for a couple of weeks, to see if that helped.
None of your meds are helping because none of them have any effect on the inflammation that's causing your symptoms. All they do is to try to suppress the symptoms, but they do nothing to prevent the inflammation from increasing. Only by eliminating from our diet all the foods to which we are sensitive, can we prevent the inflammation in the first place.
I hope you can track down the problem. Please keep us updated on your progress.
Tex
I'm sorry to hear that you're not responding well to treatment. Frankly, though many members here have had repeat colonoscopies, I'm aware of only one case where any new evidence was discovered, and that one may have been incorrectly diagnosed on the second exam. When a patient doesn't respond to treatment, many doctors recommend repeat exams, to try to find what was missed the first time, but it's extremely rare for something to actually be found. At least your doctor seems to be aware of the futility of subjecting a patient to a repeat exam, so soon after the last one.
Steatorrhea (excess fat in the stool) is a very common problem with active LC. Usually, continuing inflammation, and the resulting clinical symptoms, are signs that the disease simply isn't being adequately treated. I see that you are gluten-sensitive. Are you aware that most of us are also sensitive to all dairy products, and about half of us are also sensitive to soy and all legumes? Some of us are also sensitive to eggs, and possibly other foods.
If I were in your shoes, I would either order some stool tests from EnteroLab, to test for sensitivities to casein, soy, or possibly other foods, or I would cut dairy and soy out of my diet for a couple of weeks, to see if that helped.
None of your meds are helping because none of them have any effect on the inflammation that's causing your symptoms. All they do is to try to suppress the symptoms, but they do nothing to prevent the inflammation from increasing. Only by eliminating from our diet all the foods to which we are sensitive, can we prevent the inflammation in the first place.
I hope you can track down the problem. Please keep us updated on your progress.
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.
Barbara, Tex said it best. Another test is pretty futile and the prep for it is rough on the system. Diet is the way to go. Have you been treated with Entocort yet? That is the the main treatment for MC ( and brings very quick relief for many of us), but if you don't change your diet at the same time, the symptoms are likely to come back once you are off the drug.
Enterolab testing may be a very good idea. Have you checked out their web site? Also, while we are in an inflamed state, many fiber foods make things worse ( like raw fruits and veggies, salad, beans) and acid foods can be irritating also ( citrus, and tomatoes).
Good luck and keep us posted
Leah
Enterolab testing may be a very good idea. Have you checked out their web site? Also, while we are in an inflamed state, many fiber foods make things worse ( like raw fruits and veggies, salad, beans) and acid foods can be irritating also ( citrus, and tomatoes).
Good luck and keep us posted
Leah
Every time I see Cholestyramine I cringe. That was the last medication my first gastro doc gave me and I ended up sick as a dog in the ER with vomiting and D, totally dehydrated. When that didn't work he said it was all in my head and I needed to see a psychiatrist. Took forever to get a good doc who got the diagnosis correct... collagenous colitis. Entocort worked for me.
grannyh
grannyh
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Barbara Maresca
- Posts: 8
- Joined: Fri Dec 09, 2011 1:58 pm
Unfortunately, that's the way that they're still trained. Their professional training is out of date, because they're waiting for conclusive proof by means of rigorous scientific research methods. The drug companies sponsor most medical research, and they're not willing to spend any money to prove that any treatment besides drugs will control this disease. They're in business to sell drugs, and they have no desire to promote diet changes that that will bring relief without the use of any drugs.Barbara Maresca wrote:Why do the gasto drs. insist that diet has nothing to do with this condition??
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.
Training won't get better any time soon .. from my experience. Had a gastro doc assigned to me when in hospital for pneumonia.. he threw out the correct diagnosis of collagenous colitis.. removed it from my chart.. I took a copy with me.. an official copy.. when lung doc came in told him about the colitis and he said..nothing in the chart... he double checked.. gave him another copy.. he inserted it. Next day gastro guru took it out again.. after three days of that I told the nurses never to let that gastro doctor near me or my chart again. He left private practice a couple of years later.. to TEACH! I had to return a book to his office that he threw at me (from the doorway of my hospital room).. told me to look up Celiac.. that was my problem not colitis. Had already been tested for that.. he was insisting on doing a colonoscopy which I refused!
grannyh
grannyh
Wow! What a story. The world is full of weirdos, and apparently the medical profession has their share, too. 
If that character is teaching future GI docs, he may set the diagnosis and treatment of this disease back by 10 or 20 years.
Tex
If that character is teaching future GI docs, he may set the diagnosis and treatment of this disease back by 10 or 20 years.
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.