Hi,
Thank you for the welcome. I have felt so alone in this. I would like to give the details and hope someone can guide me. I have questions but I think I will wait to ask since there are many.
Iam a 59 year old female, overweight ( i have lost about 40 lbs since this started but the doctors don't see it as a problem, since Iam overweight I think they feel i should be happy with this part of the disease)
March of 20012 Started having daily stomach cramps, D not watery just soft and several a day. Family doc said IBS (no testing). I go between 7 and 15 time a day. I keep a food log but cannot find any pattern
In August 2012 I could not take it anymore so made my own appointment with gastro doc. this is what has happened since
August colonocopy (done by a partner in gastro office (I now make sure I see the same doctor every time) told all was great see you in 5 years
Started on Symax Duotab No Improvement
Sept. Amtriptyline 1 at bedtime No Improvement
told to add Donnatal No Improvement
told to add Imodium Caused extreme cramping
Oct. started on Xifaxcon No Improvement
Dec. Librax 2 pill AM PM Helped with cramping and the feeling of needing to go right after I just did
Jan 1st Gastro did a sigmoidoscopy saw areas of inflamation and ulcers He used the term microscopic colitis
started on Aprisco Made things worse BM became watery
March Put on Entocort
Amitriptyline still going at least 7 times a day but BM look normal (still have an occasional
and Librax day where I go ll, 12 15) but pain free and almost none of that need to go
even when you don't feeling.
Blood work showed IBD but no celiac but Iam sensitive to wheat. I also cannot take anything with Aspartame or other sugar substitute that causes D
So this is my journey Like Im sure most of you I don't do most of the things I used to. If I have to go out to someplace I don't eat or drink til I am home even if that is 10 hours. Mornings are the worse I get up 2 hours earlier so that by the time I have to leave for work it has slowed down.
Thanks for letting me talk my family is pretty much sick of hearing about my bathroom problems.
Love,k
Newbie ready for your help
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Kitty, you've come to the right place for help. Many of us felt alone and isolated in this disease until finding this board. If you haven't already, read
as many of the previous posts here as you can. Nearly all of us here have given up gluten and many also have eliminated dairy and soy in order to find remission. It sometimes takes time. It always takes patience. Good luck. Deb
as many of the previous posts here as you can. Nearly all of us here have given up gluten and many also have eliminated dairy and soy in order to find remission. It sometimes takes time. It always takes patience. Good luck. Deb
Kitty,
The loneliest I have ever felt in my life, was when it dawned on me that I had a debilitating disease that no one understood, and my doctors didn't have the foggiest idea what was wrong with me. At the time, I wondered if I was the only one in the world who was in that situation. Not only was it an eerie, lonely feeling, but it caused me to feel hopeless, also.
You're suffering through a classic case of dealing with lost and confused gastroenterologists. Did your doctor bother to take biopsy samples to correctly diagnose the condition? I get the impression from your description, that no biopsies were ever taken, so the diagnosis was an educated guess.
Many of us have been down the same path, and found that meds don't offer much help for MC. And even when they do help, most gastroenterologists are afraid to prescribe the best one, Entocort, for a long enough period to allow any significant healing.
As Deb pointed out, our inflammation is coming from food sensitivities that were triggered when the genes that predispose to MC were triggered. If you eliminate all the foods to which you are sensitive, your intestines will heal, and you can get your life back. The worst offender is gluten, of course, but most of us are also sensitive to all dairy products, as well, and at least half of us are sensitive to soy. We have to avoid all traces of the foods to which we are sensitive, because even though we always test negative to the celiac blood tests, for example, most of us are just as sensitive to gluten as the average celiac, and many of us are even more sensitive. IOW, trace amounts of foods to which we react, will prevent us from achieving remission. If you can't figure out your sensitivities by trial and error, ordering a test kit from EnteroLab, in Dallas, TX, can pinpoint the main food sensitivities, to make the job of sorting out your diet easier. And we are all different, in that we don't all have the same food-sensitivities, (though almost all of us are sensitive to gluten), and we all respond differently to drugs, and our response times to the diet can vary greatly.
And as she mentioned, please don't expect the diet to work overnight - that's a common mistake. Most people have unrealistic expectations about how long it should take to see results. It takes a long time for the gut to heal. Expect anywhere from several months to a year, to reach remission diet by means of diet changes alone, unless medications are used to help suppress the symptoms, in the meantime. Some people see results much sooner, but some also take longer.
Please be aware that for anyone sensitive to NSAIDS, (which includes many of us), mesalamine-based drugs, such as Asacol and Apriso, can make the symptoms worse, by causing the immune system to release leukotrenes, which add to the inflammation. Also, more than a few of us blame our MC on the use of other drugs, such as amitriptyline. Other drugs that can cause MC include antibiotics, SSRIs, SNRIs, statins, bisphosphanates, beta blockers, etc. Of all the drugs that you have tried, the Entocort is probably the "best" drug available, that is generally beneficial for this disease, except for Imodium - most of us can tolerate Imodium, and it's helpful for slowing down the D for most people, though it does not help to control the inflammation.
Please feel free to ask anything.
Love,
Tex
The loneliest I have ever felt in my life, was when it dawned on me that I had a debilitating disease that no one understood, and my doctors didn't have the foggiest idea what was wrong with me. At the time, I wondered if I was the only one in the world who was in that situation. Not only was it an eerie, lonely feeling, but it caused me to feel hopeless, also.
You're suffering through a classic case of dealing with lost and confused gastroenterologists. Did your doctor bother to take biopsy samples to correctly diagnose the condition? I get the impression from your description, that no biopsies were ever taken, so the diagnosis was an educated guess.
Many of us have been down the same path, and found that meds don't offer much help for MC. And even when they do help, most gastroenterologists are afraid to prescribe the best one, Entocort, for a long enough period to allow any significant healing.
As Deb pointed out, our inflammation is coming from food sensitivities that were triggered when the genes that predispose to MC were triggered. If you eliminate all the foods to which you are sensitive, your intestines will heal, and you can get your life back. The worst offender is gluten, of course, but most of us are also sensitive to all dairy products, as well, and at least half of us are sensitive to soy. We have to avoid all traces of the foods to which we are sensitive, because even though we always test negative to the celiac blood tests, for example, most of us are just as sensitive to gluten as the average celiac, and many of us are even more sensitive. IOW, trace amounts of foods to which we react, will prevent us from achieving remission. If you can't figure out your sensitivities by trial and error, ordering a test kit from EnteroLab, in Dallas, TX, can pinpoint the main food sensitivities, to make the job of sorting out your diet easier. And we are all different, in that we don't all have the same food-sensitivities, (though almost all of us are sensitive to gluten), and we all respond differently to drugs, and our response times to the diet can vary greatly.
And as she mentioned, please don't expect the diet to work overnight - that's a common mistake. Most people have unrealistic expectations about how long it should take to see results. It takes a long time for the gut to heal. Expect anywhere from several months to a year, to reach remission diet by means of diet changes alone, unless medications are used to help suppress the symptoms, in the meantime. Some people see results much sooner, but some also take longer.
Please be aware that for anyone sensitive to NSAIDS, (which includes many of us), mesalamine-based drugs, such as Asacol and Apriso, can make the symptoms worse, by causing the immune system to release leukotrenes, which add to the inflammation. Also, more than a few of us blame our MC on the use of other drugs, such as amitriptyline. Other drugs that can cause MC include antibiotics, SSRIs, SNRIs, statins, bisphosphanates, beta blockers, etc. Of all the drugs that you have tried, the Entocort is probably the "best" drug available, that is generally beneficial for this disease, except for Imodium - most of us can tolerate Imodium, and it's helpful for slowing down the D for most people, though it does not help to control the inflammation.
Please feel free to ask anything.
Love,
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.
Hi Kitty,
Welcome to the board. You will find lots of help, support, knowledge, and comfort here. They have heard it all, so send in any of your concerns and questions.
Like Deb said, you may need to eliminate more than just gluten, such as ALL dairy, soy, and possibly eggs. I had to give up all raw veggies and fruits and sugars until I began to heal. I had D for 9 months and found a good GI and the first thing he did was put me on Entocort. He still didn't see the food connection, but with the help of the people on this board and testing done at Enterolab, I eliminated all of those foods. Even though I now eat some of those foods and am off of Entocort and on Imuran, I still am GF, DF, and SF. I occasionally eat a salad, but do eat more cooked veggies and more fruits.
Hopefully, things will get better for you.
Nancy
Welcome to the board. You will find lots of help, support, knowledge, and comfort here. They have heard it all, so send in any of your concerns and questions.
Like Deb said, you may need to eliminate more than just gluten, such as ALL dairy, soy, and possibly eggs. I had to give up all raw veggies and fruits and sugars until I began to heal. I had D for 9 months and found a good GI and the first thing he did was put me on Entocort. He still didn't see the food connection, but with the help of the people on this board and testing done at Enterolab, I eliminated all of those foods. Even though I now eat some of those foods and am off of Entocort and on Imuran, I still am GF, DF, and SF. I occasionally eat a salad, but do eat more cooked veggies and more fruits.
Hopefully, things will get better for you.
Nancy
Kitty,
Thanks for confirming the biopsies.
The lactaid will help you to digest the sugar in milk, (lactose), but unfortunately, your GI doc obviously doesn't realize that you are almost surely also sensitive to the casein, (the major protein in milk), that's in all dairy products. The lactose will cause gas, bloating, cramps, and diarrhea, but the casein will cause an autoimmune reaction, (like gluten), that contributes to the inflammation in your intestines.
Love,
Tex
Thanks for confirming the biopsies.
The lactaid will help you to digest the sugar in milk, (lactose), but unfortunately, your GI doc obviously doesn't realize that you are almost surely also sensitive to the casein, (the major protein in milk), that's in all dairy products. The lactose will cause gas, bloating, cramps, and diarrhea, but the casein will cause an autoimmune reaction, (like gluten), that contributes to the inflammation in your intestines.
Love,
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 Kitty,
You mentioned that your doctor saw ulcerations on the sigmoidoscopy. Is there a reason they didn't diagnose you with ulcerative colitis?
I also used to get uncomfortable gas and cramps from immodium, and I think it's becuase my body desperately wanted to rid itself of the foods I was intolerant too, but immodium was trying to plug it up. Once you get the problem foods out of your diet, you may be able to use immodium with less discomfort, although you shouldn't have to. I was going 6-8 times a day until I totally cut gluten and dairy out of my diet. Within days my frequency was down to 2-3/day, although I still had D for a long time.
You mentioned that your doctor saw ulcerations on the sigmoidoscopy. Is there a reason they didn't diagnose you with ulcerative colitis?
I also used to get uncomfortable gas and cramps from immodium, and I think it's becuase my body desperately wanted to rid itself of the foods I was intolerant too, but immodium was trying to plug it up. Once you get the problem foods out of your diet, you may be able to use immodium with less discomfort, although you shouldn't have to. I was going 6-8 times a day until I totally cut gluten and dairy out of my diet. Within days my frequency was down to 2-3/day, although I still had D for a long time.
Welcome Kitty,
You have arrived at a good place to ask questions and discover answers. When I found this site two years ago I was on Entocort and still go on and off it. The first thing suggested to me was to 'oust' gluten. I did so and right away I started feeling better. I sometimes go for long periods feeling okay. I will never be "cured" because MC is a disease but thanks to the help I've received from this forum I'm doing much better. I wish you the best and hope you find some dietary relief tips that work for you.
You have arrived at a good place to ask questions and discover answers. When I found this site two years ago I was on Entocort and still go on and off it. The first thing suggested to me was to 'oust' gluten. I did so and right away I started feeling better. I sometimes go for long periods feeling okay. I will never be "cured" because MC is a disease but thanks to the help I've received from this forum I'm doing much better. I wish you the best and hope you find some dietary relief tips that work for you.
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, Kitty,
This is a good place to get information, encouragement, and just to vent.
Like you, I kept a diary of everything I ate, trying to figure out what was causing my problems. Then I got diagnosed with MC, and the doctor told me it wasn't anything I ate. I believed him, because I couldn't see a pattern. But then I found the PP, and decided to give diet a try. I had had 3 months of Entocort, when I rediscovered what it's like to be normal, and relapsed a month after I stopped taking it. It costs the earth, so I was ready to try something else. As Tex says, controlling MC with diet isn't a quick fix, since our bodies take time to heal.
The Enterolab testing is really helpful to give you and idea of what foods to eliminate. (I gave up gluten due to advice from here, but kept eating dairy and soy until I got the Enterolab results showing that I was sensitive to them too.)
Love,
Martha
This is a good place to get information, encouragement, and just to vent.
Like you, I kept a diary of everything I ate, trying to figure out what was causing my problems. Then I got diagnosed with MC, and the doctor told me it wasn't anything I ate. I believed him, because I couldn't see a pattern. But then I found the PP, and decided to give diet a try. I had had 3 months of Entocort, when I rediscovered what it's like to be normal, and relapsed a month after I stopped taking it. It costs the earth, so I was ready to try something else. As Tex says, controlling MC with diet isn't a quick fix, since our bodies take time to heal.
The Enterolab testing is really helpful to give you and idea of what foods to eliminate. (I gave up gluten due to advice from here, but kept eating dairy and soy until I got the Enterolab results showing that I was sensitive to them too.)
Love,
Martha
Martha
HI I'm new also
Hi Kitty. You will find that the more you read this forum, the more you will understand this disease. When I first found out (this February), I was very upset, but over time, I have realized that feeling better is so much more important then any food I'd want to eat. I am on Entocort and am in the process of SLOWLY stepping down the dose. I am Gluten and Dairy free and waiting to see what my Enterolab tests say about the rest. Everyone is different, but you may want to take out the "aggravators" for now ( like salad, beans, and raw fruits and veggies). Once your intestines heal, you may be able to add them back in. They are like "sandpaper" to your inflamed gut right now. Reading all labels is very important and educating yourself on "hidden" sources of gluten and dairy is imperative. Tex is a great source of info. He really knows his stuff.
I am truly sad that you have this, but you are in the right place to get help.
Keep us posted on your progress
Leah
PS I am also confused by the fact that GI saw inflammation and ulcers. With MC, it's usually not visible to the eye. Could it be that you have BOTH MC and ULCERATIVE colitis? Different animals... different treatments
I am truly sad that you have this, but you are in the right place to get help.
Keep us posted on your progress
Leah
PS I am also confused by the fact that GI saw inflammation and ulcers. With MC, it's usually not visible to the eye. Could it be that you have BOTH MC and ULCERATIVE colitis? Different animals... different treatments
Thank you everyone for all the encouragement and info. I'am in the process of reading as many older posts as I can. Zizzle and Leah it was during the sig. (which I was awake for) that I saw these round patches That Doc was removing for biopsy and asked what they were the Gastro replied ulcers. Now I was in the middle of the procedure and very nervous and worried perhaps I did not hear correctly. I will ask at my next appointment. He is very vague in his diagnosis I had to ask twice if there was a name for what I had and finally he said MC. He also keeps telling me it is just a matter of finding the right combination of meds that will stop the BM's
Thanks,
K
Thanks,
K
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Kitty you have been given some great info, but I will echo what Zizzle said, the ulcerations are not seen with Microscopic Colitis MC. The reason it's called microscopic colits is that the disease is not visible when viewed though a sigmoid or colonoscopy scope. It requires viewing the biopsy samples under a microscope. When ulcerations are present the Dx would usually be Ulcerative Colitis (UC) and or Crohns Colitis.
Kittly I would highly recommend getting a second opinion as the treatments for MC and UC are different. With that said though, both do greatly benefit by a GF diet.
Kittly I would highly recommend getting a second opinion as the treatments for MC and UC are different. With that said though, both do greatly benefit by a GF diet.
Joe
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Barbara Maresca
- Posts: 8
- Joined: Fri Dec 09, 2011 1:58 pm
I have been on 6 Asacol a day for the last 5 years after being diagnosed with Lymphatic colitis. Presently taking 9mg of entercort. My gastro doctor insists diet and other medications have nothing to due with chronic flareups that occur every few months. I have been gluten free for 16 months and still get D often. I am getting my medical records from my gasto doctor and getting a second opion from a doc who comes highly recommended, I have had 2 colonoscopies and an ednoscopy. Are there any other medical test you would recommend that i have
lymphocytic colitis, gluten free