Hello,
my name is Gosia and I have microscopic colitis. For me this is a long story when I have been diagnosed with this disease.
I have been diagnosed with rare ovarian tumour in December 2010 and after that I started to have other problems connected with my bowel. Because I have had pains after my surgery for ovarian cancer I used Ibuprofen and also other NSDAiS medication which could be the cause of my MC, however after diagnosing with this in November 2011 specialist said that there is no treatment if it happened from anti-inflammatory medication and have been discharged from gastroenterology clinic. I was unlucky as 7 months later in July 2012 I started to get the same symptoms as before and I knew this disease came back to me. My gyn/onco specialist referred me to gastroenterologist again and he after listening to me said that probably I may have MC again but he has done blood and stool tests and sent me for a sigmoidoscopy (November 2012) to be sure of it. Histopathology results have come back and I have not been even so surprised of this disease but surprised me that it is worse than it was first time. This time I have microscopic colitis with lymphocytic infiltration within bowel wall. Specialist prescribed me Pentasa 2gm in sachets (granules to put on the tongue and drink them with water) to treat my disease and have to take it twice daily.
I have started to get some side effects like diarrhoea and abdominal pain which are uncomfortable for me as I was fighting for longer time with abdominal pain before.
I have some questions and wait for the appointment with my gastroenterologist to discuss the results and speak about my medication.
I would like to know what is the cause of this disease. Is this a genetic ? Also I would like to know if there is any other treatment option, if things don't get better and how it can be checked. Do I need to change my diet or eliminate some products to improve my symptoms ? For how long do I need take these medicine ? Can I expect to get on some other tests to check for any allergies or food intoleration in this situation?
what does it mean that there is inflammation within my bowel wall and if it can damage bowel wall ? What kind of medication I can take for the pain as side effect of this medicine ??
All these questions prepared for my appointment with gastroenterologist. Do I need to ask about anything else yet - any ideas ?
Maybe you know some answers, so please give me advice.
Many thanks,
Gosia xx
New to MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Gosia,
Welcome to the board. Your diagnosis is not unusual, because all of us have at least some degree of lymphocytic infiltration into the mocosal lining of our intestines. That's how they diagnose lymphocytic colitis (LC), which is one of two common forms of microscopic colitis (MC) - by counting the number of lymphocytes per unit area in a biopsy sample of the mucosa of our colon. The cells that make up the mucosal lining of our colon are known as enterocytes. Normal people have up to 5 or 6 lymphocytes per 100 enterocytes, whereas we have over 20.
Yes, MC has genetic connections, but there are many genes that predispose to it. Your MC was probably caused by the use of NSAIDs, as your doctor suggested, because that is somewhat common. For some people, just avoiding the drug that triggered the MC may bring remission and maintain it. However, in many cases, when the genes that predispose to MC are triggered, the genes that trigger certain food sensitivities are also triggered. Those food sensitivities create inflammation in our intestines, and when the inflammation reaches a certain threshold of severity, the symptoms of MC are triggered. Drugs can suppress the inflammation, but they cannot prevent it from reoccurring.
The only way to stop the inflammation from being constantly generated, is to avoid the foods that cause it. For most of us, those foods are gluten (from wheat, barley, rye, and oats), casein (from all dairy products), and soy. Some of us have to avoid other foods in addition to the ones that I named. Don't expect your doctor to be aware of this, because most GI specialists were trained to believe that diet has nothing to do with inflammatory bowel diseases, including MC. Their information is out of date, however, and virtually all of us here have found that the only way to have lasting remission of the disease is by changing our diet. If we do not change our diet, then soon after we stop taking the medication that our doctor prescribes, we will relapse.
Furthermore, it takes a long time for the intestines to heal — at least 6 months to a year, and until it heals, it is hypersensitive, so we also have to avoid most sources of fiber, sugar, and certain other foods. After we heal, most of us can usually begin to eat some of those foods again, but we will always be sensitive to gluten, casein, and soy, if we are producing antibodies to them initially.
The celiac blood tests that the doctors give to diagnose coeliac disease are useless for detecting the type of gluten sensitivity that we have (which is non-celiac gluten sensitivity), except for those of us who also have coeliac disease in addition to MC. The tests that they use will only detect fully-developed coeliac disease. That's why the average length of time between the onset of the first symptoms and a coeliac diagnosis is still approximately 9.7 years (because they can only diagnose the disease after it is fully developed).
There is no cure for the disease, but as long as we avoid the foods that trigger it, we can remain in remission. For some people, certain drugs can suppress the symptoms, without any diet changes. But in order to remain in remission, the drugs have to be taken for the rest of their life. For the rest of us, the drugs will not even bring remission, unless we also change our diet.
The only tests for food sensitivities that are accurate and reliable, are stool tests offered by EnteroLab, located in Dallas, Texas. Those tests can be ordered by anyone in the UK, but there are no laboratories in the UK (or anywhere in Europe or Asia), that can provide reliable test results.
There is little point in asking your specialist about any of this, because she or he will almost surely be unaware of it, and will deny that it can work. GI specialists are beginning to learn a little about the disease, but at this point in time, very, very few of them know how to correctly treat the disease. That's why we compare notes here, so that we can work out our own personal treatment program.
Currently, the only doctors we are aware of in the UK, who actually know how to successfully treat MC, are listed here. There may be a few others, but we have no knowledge of them.
Gastroenterology Dept
St Mary's Hospital
Praed Street
Paddington, London, W2 1NY
England
(020)3312-1208/1072
http://www.imperial.nhs.uk/stmarys/ours ... /index.htm
Dr. Jane McCarthy
Mercy University Hospital
Grenville Place
Cork
Ireland
021-4935267
http://www.muh.ie/index.php?option=com_ ... &Itemid=84
Dr. Patterson
Royal Victoria Hospital
274 Grosvenor Road,
Belfast
BT12 6BA
Ireland
Hospital Tel: (028) 9024 0503
Hospital Fax (028) 9024 0899
Dr Patterson's Office (028) 9063 5295
http://www.belfasttrust.hscni.net/hospi ... HIntro.htm
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Your diagnosis is not unusual, because all of us have at least some degree of lymphocytic infiltration into the mocosal lining of our intestines. That's how they diagnose lymphocytic colitis (LC), which is one of two common forms of microscopic colitis (MC) - by counting the number of lymphocytes per unit area in a biopsy sample of the mucosa of our colon. The cells that make up the mucosal lining of our colon are known as enterocytes. Normal people have up to 5 or 6 lymphocytes per 100 enterocytes, whereas we have over 20.
Yes, MC has genetic connections, but there are many genes that predispose to it. Your MC was probably caused by the use of NSAIDs, as your doctor suggested, because that is somewhat common. For some people, just avoiding the drug that triggered the MC may bring remission and maintain it. However, in many cases, when the genes that predispose to MC are triggered, the genes that trigger certain food sensitivities are also triggered. Those food sensitivities create inflammation in our intestines, and when the inflammation reaches a certain threshold of severity, the symptoms of MC are triggered. Drugs can suppress the inflammation, but they cannot prevent it from reoccurring.
The only way to stop the inflammation from being constantly generated, is to avoid the foods that cause it. For most of us, those foods are gluten (from wheat, barley, rye, and oats), casein (from all dairy products), and soy. Some of us have to avoid other foods in addition to the ones that I named. Don't expect your doctor to be aware of this, because most GI specialists were trained to believe that diet has nothing to do with inflammatory bowel diseases, including MC. Their information is out of date, however, and virtually all of us here have found that the only way to have lasting remission of the disease is by changing our diet. If we do not change our diet, then soon after we stop taking the medication that our doctor prescribes, we will relapse.
Furthermore, it takes a long time for the intestines to heal — at least 6 months to a year, and until it heals, it is hypersensitive, so we also have to avoid most sources of fiber, sugar, and certain other foods. After we heal, most of us can usually begin to eat some of those foods again, but we will always be sensitive to gluten, casein, and soy, if we are producing antibodies to them initially.
The celiac blood tests that the doctors give to diagnose coeliac disease are useless for detecting the type of gluten sensitivity that we have (which is non-celiac gluten sensitivity), except for those of us who also have coeliac disease in addition to MC. The tests that they use will only detect fully-developed coeliac disease. That's why the average length of time between the onset of the first symptoms and a coeliac diagnosis is still approximately 9.7 years (because they can only diagnose the disease after it is fully developed).
There is no cure for the disease, but as long as we avoid the foods that trigger it, we can remain in remission. For some people, certain drugs can suppress the symptoms, without any diet changes. But in order to remain in remission, the drugs have to be taken for the rest of their life. For the rest of us, the drugs will not even bring remission, unless we also change our diet.
The only tests for food sensitivities that are accurate and reliable, are stool tests offered by EnteroLab, located in Dallas, Texas. Those tests can be ordered by anyone in the UK, but there are no laboratories in the UK (or anywhere in Europe or Asia), that can provide reliable test results.
There is little point in asking your specialist about any of this, because she or he will almost surely be unaware of it, and will deny that it can work. GI specialists are beginning to learn a little about the disease, but at this point in time, very, very few of them know how to correctly treat the disease. That's why we compare notes here, so that we can work out our own personal treatment program.
Currently, the only doctors we are aware of in the UK, who actually know how to successfully treat MC, are listed here. There may be a few others, but we have no knowledge of them.
Gastroenterology Dept
St Mary's Hospital
Praed Street
Paddington, London, W2 1NY
England
(020)3312-1208/1072
http://www.imperial.nhs.uk/stmarys/ours ... /index.htm
Dr. Jane McCarthy
Mercy University Hospital
Grenville Place
Cork
Ireland
021-4935267
http://www.muh.ie/index.php?option=com_ ... &Itemid=84
Dr. Patterson
Royal Victoria Hospital
274 Grosvenor Road,
Belfast
BT12 6BA
Ireland
Hospital Tel: (028) 9024 0503
Hospital Fax (028) 9024 0899
Dr Patterson's Office (028) 9063 5295
http://www.belfasttrust.hscni.net/hospi ... HIntro.htm
Again, welcome aboard, and please feel free to ask anything.
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.
If the Pentasa doesn't begin to help after 3 or 4 weeks, you may need to ask your GI specialist for a different medication, such as Entocort EC (budesonide), but if you eliminate from your diet, the foods that are causing your MC, then you can achieve remission without the medications.
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.
Welcome Gosia. You are in the right place for help. Tex has explained all of if perfectly.... because he is the expert here and has written a great book that you can order on line. It's a great resource.
As he has said, diet is all important. If a drug seems to make things worse, I would ask the doctor for Budesonide or try the Pepto Bismal protocol. These two treatments seem to work best.
Hang in there and learn as much as you can. This whole healing thing takes time and patience, but you can feel better if you take the right steps.
Ask any questions and please keep us posted
Leah
As he has said, diet is all important. If a drug seems to make things worse, I would ask the doctor for Budesonide or try the Pepto Bismal protocol. These two treatments seem to work best.
Hang in there and learn as much as you can. This whole healing thing takes time and patience, but you can feel better if you take the right steps.
Ask any questions and please keep us posted
Leah
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Welcome to the group form your sister city, Manchester, New Hampshire
You have recieved some great info from Leah and Tex.
As Tex mentioned this is a condition that you will most likely deal with from now on to some degree....of course most of us find remmision after we have addressed our dietary intolerances and a number of us also use medications as needed, especially at first to help achieve remission.
It sounds like you are on the right path by first receiving an accurate diagnosis so you know what your dealing with, speaking with your doctors and then reaching out to a group like this for information and support.
Overall the main theme here is identifying any problem foods, avoiding them and hopefully soon afterwards enjoy remmision.
Take care
You have recieved some great info from Leah and Tex.
As Tex mentioned this is a condition that you will most likely deal with from now on to some degree....of course most of us find remmision after we have addressed our dietary intolerances and a number of us also use medications as needed, especially at first to help achieve remission.
It sounds like you are on the right path by first receiving an accurate diagnosis so you know what your dealing with, speaking with your doctors and then reaching out to a group like this for information and support.
Overall the main theme here is identifying any problem foods, avoiding them and hopefully soon afterwards enjoy remmision.
Take care
Joe
Thank you so much for a very nice welcome and explanation the most important things about MC - I am thankful I have found this board to find some answers and get a support.
If I have any questions I will ask of course - thanks a lot again.
If I have any questions I will ask of course - thanks a lot again.
Life is like a mystery - you never know what you find with your next step.
Gosie, Welcome to the MC family. I came aboard two years ago and thanks to Tex and gang I have found a way to live with MC, avoiding flare ups and prescriptions. The first step I took was to rid my kitchen of all gluten. This took awhile. Many of us say the first year of Gluten-Free taught us patience.
Cory
Cory
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)
Hi Gosia and welcome. I was diagnosed with lymphocytic colitis in January and eliminating gluten has helped me and I don't have to take any medication at this time. I've also drastically cut back on coffee/caffeine. I never have eaten much dairy, but seem to tolerate Greek yogurt and cheese very well. I'm very happy to have found this site because I believe that diet is key. Fortunately my GI doctor agrees with me.
Leni
Diagnosed with lymphocytic colitis and IgA deficiency on 1/21/13.
Anything is possible one day at a time!
Diagnosed with lymphocytic colitis and IgA deficiency on 1/21/13.
Anything is possible one day at a time!