I just wanted to introduce myself and tell a little about my story. I am a 48 year old female. I was just diagnosed with lymphocytic colitis.
I woke one night 7 weeks ago after having had an accident in bed (a little embarrasing but sure everyone understands). From that point I have been going 17-22 times a day with severe non-bloody watery D. I'm very stubborn and finally went to the ER on Feb 3, very dehydrated and was held overnight, given alot of fluids and potassium.
Had my colonoscopy on Feb 10th and the Dr. put me on Mezavant (mesalamine) 1.2 mg 4 times a day on Feb 16th.....did not help, went back for more fluids.....was told to take imodium every 4-6 hours......all it did was store everything for about 2-3 hours and then all hell would break loose....literally...lol....saw my GI again yesterday and was put on predisone 40mg for 2 weeks and taper off by 5mg per week.
I wasn't able to ask alot of questions because she basically said lets get you well first. the only thing I know is that it affects my entire colon.
My mom was diagnosed with crohn's disease 2 years ago.
My question is.....the only testing that has been done is blood work and the colonoscopy. I have had a very low ferritin level for about 2 years now. Has anyone else experienced this? Also, should I be asking for more testing to check my small intestine too? Just curious because the talk of celiac with this.
Thank you for taking the time to read.
Sue
Hi, I'm new here....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sue,
Welcome to our internet family. I'm sorry that you've developed this disease, but hopefully we can help you to find your way back to good health.
Your symptoms seem to be quite typical. I don't know how long you tried the mesalamine before giving up, but it often takes a month or two for the 5-ASA drugs to help with this condition. Unfortunately, despite what your doctor told you, prednisone will definitely not "get you well". It may relieve most of your symptoms, but as soon as it is discontinued, you will promptly relapse, and prednisone is not safe to use for extended treatment periods, so it is of limited use for treating LC. A prescription to Entocort is just as effective as prednisone, and Entocort is much safer, with far fewer side effects, and Entocort can be safely used as a long-term treatment, if necessary.
Your doctor should have tested you for celiac disease, as soon as you told her that you had diarrhea. If she didn't, she's not doing her job properly. The bad news is, most of us are just as sensitive to gluten as any celiac, but we always test negative to celiac disease, when we are given a celiac blood test. The blood tests are simply not sensitive enough to detect the type of gluten-sensitivity that we have, and the doctors do not understand the problme, (because it's the only test they have, so they trust it).
To determine whether or not we are gluten-sensitive, most of use order stool tests from a lab in Dallas, Texas, which will accurately determine whether or not we are producing antibodies to gluten in our intestines. Even for celiacs, by the time the antibody production becomes intense enough that they show up in the blood, the disease has matured, and it takes several years of suffering before that is likely to happen. The stool tests are the only way to go, for testing for the primary food sensitivities, such as gluten, casein, (the main protein in milk), and soy. Most of us here are sensitive to gluten and casein, and about half of us are sensitive to soy.
Drugs can help to suppress our symptoms, but only diet changes can prevent the inflammation that causes LC from developing in the first place. Therefore, if we want to allow our intestines to actually heal, and return to normal, virtually all of us have to make some changes in our diet. The only people who do not have to make diet changes, are those whose colitis was triggered by a drug, and for those individuals, discontinuing the use of the drug will often bring remission. For the rest of us, we have to alter our diet, and be very careful about reading labels, for the rest of our life. Please don't expect your doctor to be aware of this, because most GI specialists have been educated to believe that diet has nothing to do with digestive system diseases. When you think about that, it's kind of a stupid viewpoint, but unfortunately, that's the situation for all but a handful of GI specialists who are open-minded, and who have learned that diet is indeed an important part of treating this disease. Of course, the other option is to take a drug for the rest of your life, to suppress the symptoms. This works for some people, but for many of us, the drugs are just not effective enough to prevent most of the symptoms from continuing.
A chronic low ferritin level is generally associated with either inadequate iron intake, or a chronic bleeding problem from ulcers, colon polyps, colon cancer, hemorrhoids, etc. However, it can also be associated with hypothyroidism, and especially Hashimoto's disease, which is an autoimmune disease that causes hypothyroidism, and is often associated with microscopic colitis. Because of this connection, I would highly recommend that you have your doctor check your thyroid function, to determine whether or not you have hypothyroidism. Here's a reference with information on that.
http://www.tpa-uk.org.uk/ferritin1.pdf
Despite what most GI specialists believe, MC can also affect the small intestine, as well as the colon. In fact, like Crohn's disease, it can affect virtually any part of the GI tract, from mouth to anus. Many of us have frequent mouth sores, for example, until we are able to bring the disease under control.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry that you've developed this disease, but hopefully we can help you to find your way back to good health.
Your symptoms seem to be quite typical. I don't know how long you tried the mesalamine before giving up, but it often takes a month or two for the 5-ASA drugs to help with this condition. Unfortunately, despite what your doctor told you, prednisone will definitely not "get you well". It may relieve most of your symptoms, but as soon as it is discontinued, you will promptly relapse, and prednisone is not safe to use for extended treatment periods, so it is of limited use for treating LC. A prescription to Entocort is just as effective as prednisone, and Entocort is much safer, with far fewer side effects, and Entocort can be safely used as a long-term treatment, if necessary.
Your doctor should have tested you for celiac disease, as soon as you told her that you had diarrhea. If she didn't, she's not doing her job properly. The bad news is, most of us are just as sensitive to gluten as any celiac, but we always test negative to celiac disease, when we are given a celiac blood test. The blood tests are simply not sensitive enough to detect the type of gluten-sensitivity that we have, and the doctors do not understand the problme, (because it's the only test they have, so they trust it).
To determine whether or not we are gluten-sensitive, most of use order stool tests from a lab in Dallas, Texas, which will accurately determine whether or not we are producing antibodies to gluten in our intestines. Even for celiacs, by the time the antibody production becomes intense enough that they show up in the blood, the disease has matured, and it takes several years of suffering before that is likely to happen. The stool tests are the only way to go, for testing for the primary food sensitivities, such as gluten, casein, (the main protein in milk), and soy. Most of us here are sensitive to gluten and casein, and about half of us are sensitive to soy.
Drugs can help to suppress our symptoms, but only diet changes can prevent the inflammation that causes LC from developing in the first place. Therefore, if we want to allow our intestines to actually heal, and return to normal, virtually all of us have to make some changes in our diet. The only people who do not have to make diet changes, are those whose colitis was triggered by a drug, and for those individuals, discontinuing the use of the drug will often bring remission. For the rest of us, we have to alter our diet, and be very careful about reading labels, for the rest of our life. Please don't expect your doctor to be aware of this, because most GI specialists have been educated to believe that diet has nothing to do with digestive system diseases. When you think about that, it's kind of a stupid viewpoint, but unfortunately, that's the situation for all but a handful of GI specialists who are open-minded, and who have learned that diet is indeed an important part of treating this disease. Of course, the other option is to take a drug for the rest of your life, to suppress the symptoms. This works for some people, but for many of us, the drugs are just not effective enough to prevent most of the symptoms from continuing.
A chronic low ferritin level is generally associated with either inadequate iron intake, or a chronic bleeding problem from ulcers, colon polyps, colon cancer, hemorrhoids, etc. However, it can also be associated with hypothyroidism, and especially Hashimoto's disease, which is an autoimmune disease that causes hypothyroidism, and is often associated with microscopic colitis. Because of this connection, I would highly recommend that you have your doctor check your thyroid function, to determine whether or not you have hypothyroidism. Here's a reference with information on that.
http://www.tpa-uk.org.uk/ferritin1.pdf
Despite what most GI specialists believe, MC can also affect the small intestine, as well as the colon. In fact, like Crohn's disease, it can affect virtually any part of the GI tract, from mouth to anus. Many of us have frequent mouth sores, for example, until we are able to bring the disease under control.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
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Foxnhound8
- Adélie Penguin
- Posts: 84
- Joined: Thu Dec 30, 2010 7:34 am
Welcome Sue. I am pretty new here, too. There are lots of folks, especially Tex who can give you lots of ideas on what to try to help you with your new diagnosis. The support here is wonderful. Different things work for different people, so don't give up. There is quite a bit of trial and error before you figure it out, but you can figure it out.
foxnhound
foxnhound
Hello Sue, welcome to the world of MC. I'm glad you found this group. There is a lot of useful information to find here. I read your dr put you on prednisone. There is a better alternative for MC if you want/need steroids and that is entocort. It's a time released steroid, works locally in the bowel and only 10 to 15% of the steroids end up in the blood stream.
Are you also tested for celiac disease? MC and Celiac is not a rare combination and low Iron, sometimes can point towards celiac.
Besides medication, diet is a great tool to control this disease, first of all gluten and diary free, followed by soy free and some of us avoid also other things as yeast, egg, corn. Take a look around there is a lot of information to find here on diet and food intolerance testing.
I hope you will feel better soon.
harma
Are you also tested for celiac disease? MC and Celiac is not a rare combination and low Iron, sometimes can point towards celiac.
Besides medication, diet is a great tool to control this disease, first of all gluten and diary free, followed by soy free and some of us avoid also other things as yeast, egg, corn. Take a look around there is a lot of information to find here on diet and food intolerance testing.
I hope you will feel better soon.
harma
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
WELCOME SUE!! 
You've had a pretty rough 7 weeks! The good news is that you've found the most comprehensive and helpful website for managing Microscopic Colitis. We have years of experience managing MC and are here to help you.
Please continue reading and learning from this site. Don't hesitate to ask any questions. You will get better, and you will get your life back, but it will probably require some changes in your diet.
Gloria
You've had a pretty rough 7 weeks! The good news is that you've found the most comprehensive and helpful website for managing Microscopic Colitis. We have years of experience managing MC and are here to help you.
Please continue reading and learning from this site. Don't hesitate to ask any questions. You will get better, and you will get your life back, but it will probably require some changes in your diet.
Gloria
You never know what you can do until you have to do it.
Welcome Sue!
I just had to chime in to say I love that quote from your doctor: "lets get you well first." I can't tell you how many times I've heard that from docs, for me and others. It's as if they think we're all just looking to them for a quick fix. So they throw you a bone (I mean Rx), and the follow-up is usually pretty pathetic after that, especially if you don't respond to their "wonder drug cure-all." But it sure sounds good when you first hear it!!
Gotta love docs, especially GIs! (with the exception of our very own Polly, of course)
I just had to chime in to say I love that quote from your doctor: "lets get you well first." I can't tell you how many times I've heard that from docs, for me and others. It's as if they think we're all just looking to them for a quick fix. So they throw you a bone (I mean Rx), and the follow-up is usually pretty pathetic after that, especially if you don't respond to their "wonder drug cure-all." But it sure sounds good when you first hear it!!
Gotta love docs, especially GIs! (with the exception of our very own Polly, of course)
Welcome Sue!
Sorry to hear things have been so bad for you. We all certainly understand those embarrassing situations. I encourage you to navigate around this site for lots of helpful info. Most of us have found that addressing diet is needed. The most common problems are gluten, dairy or soy, but any food can cause a bad response.
Hang in there - it can and will get better in time.
Mary Beth
Sorry to hear things have been so bad for you. We all certainly understand those embarrassing situations. I encourage you to navigate around this site for lots of helpful info. Most of us have found that addressing diet is needed. The most common problems are gluten, dairy or soy, but any food can cause a bad response.
Hang in there - it can and will get better in time.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Thank you all for welcoming me.
I know the prednisone would only mask everything but I have to get this to stop....I can't handle the 20 times anymore! lol I am actually still on the mezavant as well as the steroids. I have only had 2- 40mg doses and it has cut the amount of times I go in half, with that however comes more pain. I am wondering though if the prednisone actually firms up the stool or just slows the gut???
I am asking for my small intestine to be tested as well as my thyroid.
Well I have a lot of reading to do, so I'll get to it! lol
Thanks again
Sue
I know the prednisone would only mask everything but I have to get this to stop....I can't handle the 20 times anymore! lol I am actually still on the mezavant as well as the steroids. I have only had 2- 40mg doses and it has cut the amount of times I go in half, with that however comes more pain. I am wondering though if the prednisone actually firms up the stool or just slows the gut???
I am asking for my small intestine to be tested as well as my thyroid.
Well I have a lot of reading to do, so I'll get to it! lol
Thanks again
Sue
Sue - as others have said, you've come to the right place for knowledge and support. This forum has been around for a long time (10+ years), and the amount of accumulated knowledge is incredible. Having arrived here is good fortune indeed.It seems that everyone here has their own method of treating their MC, and you will find your way by reading lots and keeping an open mind. I certainly can relate to the desperate feeling when the D is constant and relentless. Spending hours in the bathroom is no fun at all. However, I'm convinced that like so many others here, you'll get your life back in time. It does take patience and perseverance.
Lots of luck to you on your MC journey - I look forward to following your progress through your posts here.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Hello Sue, 
Glad that you found us!
Not much to add but just wanted to welcome you. You will find your way through to remission from this aweful disease, with the help of freinds here. But I do stress YOU .. it seems our Dr.s are generally lacking in knowledge about MC and it usually falls to us to manage our treatment, with their help, and that of others who have been there before us. It sounds like you are not afraid to do this. Good for you!
There are answers here to just about any question you have.. just use the search function that your find in red at the top of every page that says "Search the Archives of this Discussion Board".
Welcome again, Linda
Glad that you found us!
Not much to add but just wanted to welcome you. You will find your way through to remission from this aweful disease, with the help of freinds here. But I do stress YOU .. it seems our Dr.s are generally lacking in knowledge about MC and it usually falls to us to manage our treatment, with their help, and that of others who have been there before us. It sounds like you are not afraid to do this. Good for you!
There are answers here to just about any question you have.. just use the search function that your find in red at the top of every page that says "Search the Archives of this Discussion Board".
Welcome again, Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama