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Hello everyone! I'm new here and have been reading through quite a few posts and threads and basically learning a great deal.
I was diagnosed w/ LC in Dec, 2010 after having D for 8 months and going through all kinds of tests, poking and prodding. It was also found out through the bloodwork that I have very low levels of Vit D and was slightly anemic. Since Dec I've been given Entocort, Lialda, Imodium (gave me awful stomach aches, nausea), Prednisone, Cholesyramine and nothing has helped with any significance.
This is something I know I have had for many years - it would come in bouts and I always thought I had a nervous stomach or had a case of food poisoning. It would last for a few weeks and would eventually go away and since I was young (20's and 30's) I thought nothing of it. I was even told it could have been related to pregnancy ( I had my 3 children during that part of my life). Only after it became really bad about 3 years ago did I start seeking, demanding my GP help me.
For more than a year now I have been stuck at home, just going to the grocery store is a well-planned excursion. But I've learned that if I can withhold food long enough that I am able to leave the house for about an hour or so. Mainly I feel as though I'm under house arrest.
Currently I'm looking for a new GI as mine would always show great frustration that I wasn't improving or responding well to whatever medication he had prescribed (as if I weren't dealing with the same frustration along w/ running to a bathroom dozens of times a day!). Any advice on what to look for in a new GI, questions to ask, etc. would be greatly appreciated.
Every once in a while I get angry about having this disease but mostly I feel sad, cheated out of life as I get to sit at home and watch videos or look at pictures of things my kids and DH do outside of our house and yard. I remember the life I used to have before and I miss it terribly - I had friends, went places w/o any hesitation, took vacations, went out to dinner w/ my DH.
Thanks for listening to my rant. I know complaining gets you nowhere so I'm anxious to find solutions as well.
newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
That is so sad that you have had to give up everything and you can complain away, we will listen. I'm sure there are plenty of people here that will share their knowledge and experiences so that you can move on. Have you tried eliminating any foods from your diet? Keeping a food journal certainly helps.
Keep reading the posts here, I know there is help you, also a lot of support.
Nancy
Keep reading the posts here, I know there is help you, also a lot of support.
Nancy
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Reneeknits
- Posts: 11
- Joined: Thu Feb 24, 2011 9:37 am
- Location: Cary, NC
You have found the best place in the world for information and support. Read here and check out www.enterolab.com I know it is all overwhelming.
As Tex says, "You can get your life back."
As Tex says, "You can get your life back."
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Renee,
Some medications are of incredible help to some of us, but give others either no help or awful side effects (as you experienced with Imodium). It does sound as though there's still something triggering your symptoms - at this point, your system is probably reacting even to things that at other times you might be able to tolerate. At least that is how I felt myself, a few months ago.
Fiber is problematic for most of us while we're in a flare. I found, for example, that I couldn't eat nuts, but my homemade almond milk was fine. And now I can tolerate almond butter as well. (I'm still cautious about more than a few 'whole' almonds, but hopeful.)
You've already tried eliminating the most common food triggers - gluten and dairy. You are right that cross-contamination is a huge risk, and in commercial products, there can be all kinds of extra ingredients that cause problems for some - like xanthan gum, guar gum, tapioca flour - which help non-gluten flours behave more the way we expect in baked goods; and there are many soy derivatives, which can cause many of us to react.
I used one drug you didn't mention, and it did help me - but other people don't tolerate it well. Pepto Bismol really enabled me to get the relentless D under control in the first few weeks. I reduced my 'dose' pretty quickly from 8/day (yuck - the capsules are better than the chewable tabs or liquid). I also did a very hard core diet restriction (homemade chicken broth, bananas, stopped even the applesauce for a while, but have since found one that has only apples as an ingredient), gradually adding cooked carrots, potatoes, etc. At first I could not tolerate even white rice, but now find I can have some rice from time to time. I hope you find a few safe foods and get your symptoms to a manageable level so you can get your energy and life back.
Whether with a new doctor's help or on your own, the best revenge on that self-absorbed GI doc will be when you get control of your MC, start to heal, regain your health and your life. I hope it starts today.
Best wishes,
Sara
p.s. - I knit, too!
Some medications are of incredible help to some of us, but give others either no help or awful side effects (as you experienced with Imodium). It does sound as though there's still something triggering your symptoms - at this point, your system is probably reacting even to things that at other times you might be able to tolerate. At least that is how I felt myself, a few months ago.
Fiber is problematic for most of us while we're in a flare. I found, for example, that I couldn't eat nuts, but my homemade almond milk was fine. And now I can tolerate almond butter as well. (I'm still cautious about more than a few 'whole' almonds, but hopeful.)
You've already tried eliminating the most common food triggers - gluten and dairy. You are right that cross-contamination is a huge risk, and in commercial products, there can be all kinds of extra ingredients that cause problems for some - like xanthan gum, guar gum, tapioca flour - which help non-gluten flours behave more the way we expect in baked goods; and there are many soy derivatives, which can cause many of us to react.
I used one drug you didn't mention, and it did help me - but other people don't tolerate it well. Pepto Bismol really enabled me to get the relentless D under control in the first few weeks. I reduced my 'dose' pretty quickly from 8/day (yuck - the capsules are better than the chewable tabs or liquid). I also did a very hard core diet restriction (homemade chicken broth, bananas, stopped even the applesauce for a while, but have since found one that has only apples as an ingredient), gradually adding cooked carrots, potatoes, etc. At first I could not tolerate even white rice, but now find I can have some rice from time to time. I hope you find a few safe foods and get your symptoms to a manageable level so you can get your energy and life back.
Whether with a new doctor's help or on your own, the best revenge on that self-absorbed GI doc will be when you get control of your MC, start to heal, regain your health and your life. I hope it starts today.
Best wishes,
Sara
p.s. - I knit, too!
Hi Renee,
Welcome aboard. Your pattern of reactions, sick as a dog for a couple of weeks or so, and then fine for a while, matches mine. For a year or two, I thought that I was the unluckiest person in the world, to be constantly relapsing with the flu, or getting food poisoning so often.
Until one day when the D started, and wouldn't stop. 
I was pretty certain that gluten was part of the problem, so I cut it out of my diet 100%, but after a year and a half, I was still getting sick. I had been keeping a food and reaction diary, and at that point, I finally bit the bullet, and I decided to also cut out everything else that I thought was suspicious - all dairy products, soy, fruit, corn, (and all other grains, except rice), all sugar, all but a few well-cooked veggies, all artificial sweeteners, etc., and within 2 weeks, I was in remission. I remained on that diet for a little over a year and a half, to allow my gut to heal. After that, I was able to add most foods back into my diet, (except for gluten, of course).
When meds don't work, the key to remission is to eliminate from our diet every trace of every food to which we are sensitive. Ofter we are in remission for a while, and our gut has a chance to heal, then we can begin to add foods back into our diet, to see if we react to them. As long as we continue to eat any foods which cause us to react, (even in trace amounts), our intestines will remain inflamed, and we will remain unable to attain remission. It's an all or nothing proposition - cutting out some of the foods that cause our reactions, or limiting the amounts, simply will not get the job done, unfortunately. IOW, getting the upper hand on this disease, and wrestling the control of our life back from it, requires hard work, dedication, and perseverance, but the reward is freedom from symptoms, and the ability to resume doing the things we love to do, so the effort is definitely worth it.
Incidentally, anytime a doctor blames the patient, because a treatment that he or she prescribed, failed to provide any benefits, you can rest assured that you are dealing with a doctor who does not understand the disease that he or she is trying to treat. There is an old academic axiom that says that one cannot teach what one does not understand, and a corollary of that says that a doctor cannot successfully treat a disease that he or she does not understand. Attempting to transfer the blame to the patient, is their childish way of salving their ego, so that they don't have to blame themselves for their professional failure. Shame on any doctor who behaves this way.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome aboard. Your pattern of reactions, sick as a dog for a couple of weeks or so, and then fine for a while, matches mine. For a year or two, I thought that I was the unluckiest person in the world, to be constantly relapsing with the flu, or getting food poisoning so often.
Until one day when the D started, and wouldn't stop. I was pretty certain that gluten was part of the problem, so I cut it out of my diet 100%, but after a year and a half, I was still getting sick. I had been keeping a food and reaction diary, and at that point, I finally bit the bullet, and I decided to also cut out everything else that I thought was suspicious - all dairy products, soy, fruit, corn, (and all other grains, except rice), all sugar, all but a few well-cooked veggies, all artificial sweeteners, etc., and within 2 weeks, I was in remission. I remained on that diet for a little over a year and a half, to allow my gut to heal. After that, I was able to add most foods back into my diet, (except for gluten, of course).When meds don't work, the key to remission is to eliminate from our diet every trace of every food to which we are sensitive. Ofter we are in remission for a while, and our gut has a chance to heal, then we can begin to add foods back into our diet, to see if we react to them. As long as we continue to eat any foods which cause us to react, (even in trace amounts), our intestines will remain inflamed, and we will remain unable to attain remission. It's an all or nothing proposition - cutting out some of the foods that cause our reactions, or limiting the amounts, simply will not get the job done, unfortunately. IOW, getting the upper hand on this disease, and wrestling the control of our life back from it, requires hard work, dedication, and perseverance, but the reward is freedom from symptoms, and the ability to resume doing the things we love to do, so the effort is definitely worth it.
Incidentally, anytime a doctor blames the patient, because a treatment that he or she prescribed, failed to provide any benefits, you can rest assured that you are dealing with a doctor who does not understand the disease that he or she is trying to treat. There is an old academic axiom that says that one cannot teach what one does not understand, and a corollary of that says that a doctor cannot successfully treat a disease that he or she does not understand. Attempting to transfer the blame to the patient, is their childish way of salving their ego, so that they don't have to blame themselves for their professional failure.
Shame on any doctor who behaves this way.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.
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Reneeknits
- Posts: 11
- Joined: Thu Feb 24, 2011 9:37 am
- Location: Cary, NC
Thank you all for your responses - this site and your words are truly the most uplifting things I have heard in years! To be honest I have been at the point of giving up and accepting that this will be my life every day going forward. But I am seeing some light at the end of the tunnel.
I've only had my DH to talk w/ about all this and it's one of those things that you ca only fully appreciate through experience - not that I'd wish this on anyone, ever.
There may be a thread about this already but has there been a discussion about this "running in families"? There are quite a few autoimmune diseases in my immediate family and I honestly suspect my mother suffered from MC. She also had Sarcoidosis and died as a result of liver failure from granulomas developing there, as well as her brain. For years she was having accidents and D but being a "proper Southern woman" is was NOT discussed nor something she would have told her doctor.
Thank you all for your encouraging words - I soooooo needed them! And I think I will go on a very strict like the one Tex used b/c I would like to at least take my kids to the neighborhood pool - it would be a tropical vacation to spend just one afternoon there for me!
I've only had my DH to talk w/ about all this and it's one of those things that you ca only fully appreciate through experience - not that I'd wish this on anyone, ever.
There may be a thread about this already but has there been a discussion about this "running in families"? There are quite a few autoimmune diseases in my immediate family and I honestly suspect my mother suffered from MC. She also had Sarcoidosis and died as a result of liver failure from granulomas developing there, as well as her brain. For years she was having accidents and D but being a "proper Southern woman" is was NOT discussed nor something she would have told her doctor.
Thank you all for your encouraging words - I soooooo needed them! And I think I will go on a very strict like the one Tex used b/c I would like to at least take my kids to the neighborhood pool - it would be a tropical vacation to spend just one afternoon there for me!
11 years ago, after I went through every exam that my GI doc thought might be useful, and ending with a colonoscopy exam, (in which he failed to take any biopsies, because my colon looked "just fine" to him), I resigned myself to the same fate, with no hope for any relief. So I can truly understand how miserable and hopeless you must have felt.Reneeknits wrote:I have been at the point of giving up and accepting that this will be my life every day going forward.
And, you are quite correct - no one can truly understand this disease, unless they have it.
The disease is not contagious, but the genes that predispose to it are inherited, of course, so the risk of developing the disease does tend to run in families. I believe that my mother had the same problems that I had, but like your mother, she refused to discuss things of that sort, unfortunately.
You're most welcome, and good luck with whatever treatment program you decide to pursue. We will help in any we can, if you will allow us, so please keep us updated.
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.
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Reneeknits
- Posts: 11
- Joined: Thu Feb 24, 2011 9:37 am
- Location: Cary, NC
Thank you so much Tex! And it is a shame our mothers couldn't talk about their health problems with their family members or doctors.
And I'll definitely keep you all updated - my next step will be having the testing done to find out about food allergies and intolerance. I'm also going to try the Petpo Bismol regime I've read about here.
thank you again!
And I'll definitely keep you all updated - my next step will be having the testing done to find out about food allergies and intolerance. I'm also going to try the Petpo Bismol regime I've read about here.
thank you again!
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Reneeknits
- Posts: 11
- Joined: Thu Feb 24, 2011 9:37 am
- Location: Cary, NC
Is bloating, loud gurgling sounds (something like having an alien from a horror movie living inside you), gas and pain a frequent problem while experiencing a flare?
I've completely given up on attending anything where there is quiet...I was at my uncle's funeral in Feb and during a moment of silence my alien sounds started up and would not stop - completely and utterly mortifying and I felt like I was creating disgrace for my dear aunt and family!
I've completely given up on attending anything where there is quiet...I was at my uncle's funeral in Feb and during a moment of silence my alien sounds started up and would not stop - completely and utterly mortifying and I felt like I was creating disgrace for my dear aunt and family!
Renee - Oh, my goodness, is it ever!! When I was first diagnosed, I would have sworn my stomach was talking to me. Now I know what it was saying...nooooo please no gluten! LOL
As you figure out your food intolerances, your stomach will settle down. I ate something the other night that gave me that tell tale rumbling.
I hope you start feeling better soon!
Hugs,
As you figure out your food intolerances, your stomach will settle down. I ate something the other night that gave me that tell tale rumbling.
I hope you start feeling better soon!
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
I agree with Denise - those unique noises are definitely a marker of MC, and the bloating is a clear indication of food sensitivities. If it weren't for the fact that celiacs and Crohn's patients also have those problems, the combination could probably be used instead of a colonoscopy with biopsies, to diagnoses the disease. 
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.