Visit the Microscopic Colitis Foundation Website
Have been researching MC & CC on the internet and found this wonderful site. I need advice, help and some opinions... I am open to all.
I have been suffering with severe D (watery & explosive) of varying degrees and severity for 12 years now with no relief in sight. This includes frequency, intermittent incontinence, occasional rectal bleeding, inflamation and irritation. Most of the time I had no energy, was not mentally sharp and felt horrible. For several years now I have been almost totally housebound due to this condition. Going out to eat was definitely not an option as I was always afraid of having an accident after eating. Shopping had it's own set of problems and it was near impossible to schedule events or appointments in advance not knowing how I would be on a particular day. I have always said I know where every restroom is in every establishment in this county!
I have had numerous endoscopies, colonoscopies and almost every test done that is out there for these probelms. The right side of my colon was never biopsied during the colonoscopies however (which I understand is important to do for diagnoses of MC)...have no idea why it was not done. I also have GERD for which I was prescribed Aciphex. Several years ago part of my colon was removed due to diverticulitis. Following that my gall bladder was removed along with several incisional hernias which were repaired (from the colon surgery not healing) using mesh. With each surgery I hoped that my condition would improve. It did not improve but steadily got worse. About 3 or 4 months ago they did an important test which measures bacterial overgrowth and it was abnormal but my GI at the time told me it was normal! I have had 3 different GI specialists over the years. They have totally frustrated me by their uncaring and unconcerned attitude, always in a hurry and always over booked with appointments. It seems they want to do all the expensive tests (to make money) but are not interested in taking the time required to find a diagnosis and treatment. As of March, I am now on my 4th GI specialist (who is in the same group as the one before him) and while he is not perfect, he does seem to care and is concerned. Our area only has one group of GI's. He has told me that I have MC and CC. I don't feel that he knows exactly how to treat this.... as it seems it is more or less trial and error. Diet does not seem to concern him at all.
Before I went to him in March I went on a diet of my own making. My daughter had celiac disease and I remembered a lot of her symptoms were like mine. (Incidentally, my gluten and celiac tests were normal.) So, I stopped all gluten, sugars, dairy products, caffeine and other items that I knew bothered me. I realized with amazement, after several weeks, my D had subsided and things were becoming more normal. This continued for 4 months. During that time I lost 50 lbs. and was feeling just super. Then all of a sudden it all came back, for no reason. That is when I saw my 4th GI. He immediately took me off Aciphex ( a no brainer and a drug I should have been taken off years ago) and put me on Pepcid 40 mg. That made a huge difference! I had no idea there was an alternative to proton pump inhibitor drugs for GERD. A week later he put me on Entocort 3 times a day for about 2 or 3 weeks and then took me down to 2 a day for another two or three weeks then reduced to one a day. Last week he instructed me to go to one every other day for two weeks then stop entirely. The first day (last Tuesday) I skipped a dose and I went into a downward spiral. The D returned big time along with what I call "horrible diaper rash". There was no other reason this could have happened. I put a call into his office and he has told me to go to 2 a day until I see him in 2 or 3 weeks. It is so hard for me to believe that I could have relapsed that bad that fast....after missing one dose then only one more. It is also very depressing to know I may have to stay on the Entocort for a long time. I am also on Lomotil when needed. I suppose I should be thankful that there is a drug out there that will stop the horrible D though. I do wonder if long term use of Entocort will have any bad side effects in the future.
I am wondering if perhaps I should have been on 3 Entocort a day for a longer period of time before going to two and then one. I started the Entocort in mid March. Any ideas would be appreciated.
Another new member
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Lee,
Welcome to our internet family. I'm so sorry to hear that your first 3 GI docs totally missed your diagnosis, and the last one, (like most GI docs, everywhere), is not sure how to go about treating MC. He seems to be on the right track, but he needs much more experience/education, and he is obviously misinformed about the role of diet with MC.
The following is my theory, and is not documented by scientific research, (so please keep that in mind), but experience has shown that it seems to apply to most people who have MC: The reason why the diet worked for a while, and then stopped working, is because the immune system usually responds to the primary offender that it is faced with, and for most of us, that is gluten. After a few months or so, (this varies by the individual, obviously), the production of anti-gliadin antibodies subsides to the point where they no longer dominate the immune system, and the immune system begins to notice other offenders. That secondary offender is usually casein, (the primary protein in all dairy products). So, almost all of us have to cut all dairy products out of our diets, also. Sometimes this will allow remission again, but casein antibody production subsides much more quickly than gluten antibody production, so the "next" allergen in line will usually promptly attract the attention of the immune system, and for about half of us, that allergen is soya, the primary protein in soybeans. Many of us can stop there, on food intolerance removal from our diet, (other than foods which act as irritations, but are not really intolerances), but a few of us are also intolerant of egg whites, yeast, and possibly a few other things. Some of us have listed those intolerances in our profiles, and they appear below our avatar.
The irritants which need to be removed from the diet include foods such as sources of fiber, sources of sugar alcohols, (sorbitol, mannitol, etc.), sugar substitutes, (especially aspertame), and anything else that seems to prolong reactions. This includes most fruits, and many vegetables. Certain meds also need to be totally avoided, (such as NSAIDs), and certain others can trigger MC, (such as certain PPIs, and one or two SSRIs, and possibly other meds). Any fruits and vegetables that are eaten should be peeled, (most of the fiber is in the peel), and they should be well-cooked, (over-cooked, really).
To get rid of the "rash" and irritation that is so common with frequent D, try one of the OTC meds mentioned in this thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10052
They should bring fast relief.
I'm sorry that your doctors have let you down for so many years of unnecessary suffering, but hopefully we will be able to steer you in the right direction, and help you get your life back. It's miserable to be afraid to leave the house, but we all understand that feeling, because we've been there, done that, and we certainly how you feel.
Again, welcome aboard, and please feel free to ask any questions that come to mind.
Tex (Wayne)
P. S. Incidentally, you and I have a lot in common - my GI doc wasn't smart enough to take any biopsy samples, either, and about three and a half years ago, most of the Sigmoid section of my colon was removed, by emergency surgery, because of a blockage, caused by a stenosis, associated with diverticulitis. FWIW, I have always controlled my symptoms by diet alone.
Welcome to our internet family. I'm so sorry to hear that your first 3 GI docs totally missed your diagnosis, and the last one, (like most GI docs, everywhere), is not sure how to go about treating MC. He seems to be on the right track, but he needs much more experience/education, and he is obviously misinformed about the role of diet with MC.
You seem to know more about it than he does, but we have found that to be a common experience among our members. Yes, the "most effective" way to treat MC, (in my opinion - based on the accumulated experience of most of the members of this board), is to eliminate certain food intolerances from the diet, and take Entocort for at least 6 months, before reducing the dosage, in order to give the intestines adequate time to heal, so that the diet can control the symptoms, after the Entocort is discontinued. In many cases, it is not necessary to take the Entocort, but Entocort will allow the patient relief from most of the symptoms, while the diet is slowly healing the gut. It usually takes a year or more for the gut to completely heal from all the damage done by the MC, and by gluten, of course, but remission will occur long before the gut is completely healed.Lee wrote:I am wondering if perhaps I should have been on 3 Entocort a day for a longer period of time before going to two and then one. I started the Entocort in mid March.
The following is my theory, and is not documented by scientific research, (so please keep that in mind), but experience has shown that it seems to apply to most people who have MC: The reason why the diet worked for a while, and then stopped working, is because the immune system usually responds to the primary offender that it is faced with, and for most of us, that is gluten. After a few months or so, (this varies by the individual, obviously), the production of anti-gliadin antibodies subsides to the point where they no longer dominate the immune system, and the immune system begins to notice other offenders. That secondary offender is usually casein, (the primary protein in all dairy products). So, almost all of us have to cut all dairy products out of our diets, also. Sometimes this will allow remission again, but casein antibody production subsides much more quickly than gluten antibody production, so the "next" allergen in line will usually promptly attract the attention of the immune system, and for about half of us, that allergen is soya, the primary protein in soybeans. Many of us can stop there, on food intolerance removal from our diet, (other than foods which act as irritations, but are not really intolerances), but a few of us are also intolerant of egg whites, yeast, and possibly a few other things. Some of us have listed those intolerances in our profiles, and they appear below our avatar.
The irritants which need to be removed from the diet include foods such as sources of fiber, sources of sugar alcohols, (sorbitol, mannitol, etc.), sugar substitutes, (especially aspertame), and anything else that seems to prolong reactions. This includes most fruits, and many vegetables. Certain meds also need to be totally avoided, (such as NSAIDs), and certain others can trigger MC, (such as certain PPIs, and one or two SSRIs, and possibly other meds). Any fruits and vegetables that are eaten should be peeled, (most of the fiber is in the peel), and they should be well-cooked, (over-cooked, really).
To get rid of the "rash" and irritation that is so common with frequent D, try one of the OTC meds mentioned in this thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10052
They should bring fast relief.
I'm sorry that your doctors have let you down for so many years of unnecessary suffering, but hopefully we will be able to steer you in the right direction, and help you get your life back. It's miserable to be afraid to leave the house, but we all understand that feeling, because we've been there, done that, and we certainly how you feel.
Again, welcome aboard, and please feel free to ask any questions that come to mind.
Tex (Wayne)
P. S. Incidentally, you and I have a lot in common - my GI doc wasn't smart enough to take any biopsy samples, either, and about three and a half years ago, most of the Sigmoid section of my colon was removed, by emergency surgery, because of a blockage, caused by a stenosis, associated with diverticulitis. FWIW, I have always controlled my symptoms by diet alone.
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.
Thank you so much for your prompt reply Tex. There is a lot there to digest and think about. I have already felt that my diet already was pretty restrictive. I don't know how much more I can eliminate. The only thing the doc suggested I get off of was milk products due to the lactose intolerance. Like I mentioned....he does not seem concerned about diet other than that. I have been using Cortisone cream and Neosporin pain cream for the diaper rash but when it is bad nothing seems to work. The main problem is when you are constantly going you are constantly irritating the area. Thank you again for your support and help. This stuff sure makes you feel awfully bad. It has been a rough week so far.
Lee
Lee, we're glad you found us.Here you go, Lee. Don't expect your DH to believe it, though.
https://www.enterolab.com/Home.htm
Also, you can do a PP search using the button next to FAQ and Rules, NOT the Google search.
https://www.enterolab.com/Home.htm
Also, you can do a PP search using the button next to FAQ and Rules, NOT the Google search.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Wow, you have really been through the wringer with this. I am so sorry you had to suffer with it for so long before getting (and acting on you own) to get some help.
I hope this site will be beneficial to you. It certainly has been for me. Welcome
Aboard!!!
Shirley
I hope this site will be beneficial to you. It certainly has been for me. Welcome
Aboard!!!
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
"Also, too" PP gene test results
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Thank you for the links. I am wondering if you can have this test while you are on Entocort? I would think it would skew the test results?
Also, it would be good to note for others (in the same boat) who are on a proton pump inhibitor drug to eliminate it if D is present. That is the major side effect of these drugs. Can't tell you what a difference it made to get off of it. It also causes the gut mechanism not to work properly thus causing bacterial overgrowth .....gas, D, etc. I am thinking that this was what caused all my problems in the first place,.
As I see it now, my main issue is finding the right dosage and time period for the Entocort while staying on my restricted diet for life. The former being the currently unknown.
Also, it would be good to note for others (in the same boat) who are on a proton pump inhibitor drug to eliminate it if D is present. That is the major side effect of these drugs. Can't tell you what a difference it made to get off of it. It also causes the gut mechanism not to work properly thus causing bacterial overgrowth .....gas, D, etc. I am thinking that this was what caused all my problems in the first place,.
As I see it now, my main issue is finding the right dosage and time period for the Entocort while staying on my restricted diet for life. The former being the currently unknown.
Lee
Lee,
That question about whether or not budesonide, (Entocort EC), can skew the results of stool testing, has come up before, (in fact, almost two years ago). This old thread contains the answer, (no, it normally does not, unless usage has been extensive enough to suppress the immune system):
http://www.perskyfarms.com/phpBB2/viewt ... g+entocort
Yes, we are always suspicious of PPIs, if a member is using one, because certain PPIs have definitely been documented to cause not only D, but MC, as well. We have more than one member who can be reasonably certain that a PPI was the source of their MC. The most recent, as I recall, was katinchatt, who was able to achieve remission, (with no other treatment), after she discontinued using that med. I don't recall which med she was using, at the moment, but you can do a search of her posts, if you are interested.
Most members are able to taper the dosage of Entocort down to 3 mg per day or less, (a few members have been able to maintain remission on as little as 3 mg every third day, while carefully following their diet). Of course, for those who are able to track down all their intolerances, and meticulously eliminate them from their diet, meds may be eliminated completely.
Tex
That question about whether or not budesonide, (Entocort EC), can skew the results of stool testing, has come up before, (in fact, almost two years ago). This old thread contains the answer, (no, it normally does not, unless usage has been extensive enough to suppress the immune system):
http://www.perskyfarms.com/phpBB2/viewt ... g+entocort
Yes, we are always suspicious of PPIs, if a member is using one, because certain PPIs have definitely been documented to cause not only D, but MC, as well. We have more than one member who can be reasonably certain that a PPI was the source of their MC. The most recent, as I recall, was katinchatt, who was able to achieve remission, (with no other treatment), after she discontinued using that med. I don't recall which med she was using, at the moment, but you can do a search of her posts, if you are interested.
Most members are able to taper the dosage of Entocort down to 3 mg per day or less, (a few members have been able to maintain remission on as little as 3 mg every third day, while carefully following their diet). Of course, for those who are able to track down all their intolerances, and meticulously eliminate them from their diet, meds may be eliminated completely.
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.
!
Again, many thanks. I have gained a lot of confidence reading all these posts and making note of all the information. There is still so much more to read here. Will be going to my next doc appointment well armed this time to make decisions. I started back yesterday on 2 Entocort. Still feel bad although the D is gone. I sure hate this feeling like you have been run through a wringer! Tomorrow is a new day..LOL!
Lee