Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I started having diarrhea in mid-September (2016). At first I thought it was a stomach bug. After several months of this, my husband and I, doing some research, came across the low FODMAP diet because it appeared that I had malabsorption issues. Since starting the diet and trying to keep as close as possible to the guidelines, I noticed a big improvement in my bathroom habits. Few episodes of D, mostly loose to almost normal poo and some fecal urgency, which limited my being able to go out and live my life. I'm sure you know what I mean. In late November I had a cologuard test, ordered by my doc and it came back positive. A week ago today, I had a colonoscopy. Result 4 polyps which were pre-cancerous. They were removed. The doctor also did biospies and diagnosed MC (collagenous). Advised to eliminate lactose, plus all the stuff I have basically eliminated from my diet -- the usual suspects, including caffeine (oh no!). I am not sure yet what my triggers are but I'm pretty sure lactose-intolerance is in the mix and perhaps gluten, from what I have been reading.
I guess with all the reading and research I've been doing I am now completely overwhelmed and feeling kind of depressed and worn out. Today I am thinking about not only all the foods I cannot have but of all the FURTHER changes we will have to make, in addition to the ones we have already made. I guess I am feeling a bit sorry for myself.
Since the colonoscopy, I have felt great until today. Have had almost normal stools and have enjoyed my limited food choices. Don't know what I ate or drank but it's been a multiple-visit-to-the bathroom day and I am just so sick of one step forward and two steps back.
Mainly I wanted to say HI and get acquainted and looking for some moral support. I just feel like crying today, and I rarely cry. I have to say that my husband has been a total warrior in terms of support -- can't complain. We are retired and now he does most of the cooking (like 95%!) and is always on the lookout for new info and is also supportive emotionally as well. But even HE doesn't fully understand this challenge, if you know what I mean -- I mean, he can't, really, and I can't fault him for that. I guess I just need to be in touch with others who have been thru this, are going thru this, and totally understand. Thanks for listening to me vent.
Welcome to our Internet family. It's somewhat common for the cleanout solutions used prior to a colonoscopy to cause a temporary lull in symptoms. Many of us have experienced that, only to have our symptoms relapse again later.
We have to deal with this disease one day at a time as we are recovering. What you are feeling is very typical. We tend to go through the 5 (or 7, depending on the source) stages of grief because of the dramatic lifestyle changes we face as a result of the disease. One way to ease the transition is to stop focusing on the foods that we can no longer eat, and focus on how much better we feel when we avoid those foods. We have to learn to appreciate the many foods that we can still enjoy, and view the foods that we can no longer tolerate as poison to our body (because they are indeed toxic to our body). Here is why we have developed sensitivities to foods that we have previously eaten for most of our life (if you're not interested in these details, just skip down to below this):
MC is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. Research shows that when the genes that predispose to microscopic colitis are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability (also known as "leaky gut") and this allows partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because those peptides are obviously not supposed to be in the blood). The immune system then begins to react to certain proteins in those foods every time they are eaten. This is why some of the foods that we have been eating for most of our life can suddenly begin to cause chronic inflammation by provoking our immune system to produce antibodies against them.
The inflammation that perpetuates the symptoms for MC patients is due to T cell infiltration into the intestinal lining (the mucosa) of the colon. These lymphocytes are expressed in response to antibodies produced as a result of food sensitivities. In most cases food sensitivities probably are not the reason why the disease developed initially, but once the sensitivities develop, then they tend to perpetuate the symptoms. This makes the disease very difficult to control unless certain diet changes are made.
Similar to food sensitivities, certain drugs can also cause the immune system to produce antibodies that trigger MC symptoms. In some cases, just stopping the use of those drugs can bring remission of the MC symptoms. These drugs include antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. But in many cases, food sensitivities develop before the use of the drug is stopped, so the diet must also be changed in addition to avoiding the drug that causes the inflammation. But the bottom line is that if we stop the antibodies from being produced by avoiding the offending foods or drugs, then we can stop the inflammation from being produced and the symptoms will begin to fade away. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).
There is no one-size-fits-all diet that will control the disease, but virtually every MC patient is sensitive to gluten. For most, it's a form of non-celiac gluten sensitivity, so that the celiac screening tests used by doctors are worthless for detecting the type of gluten sensitivity that is typically associated with MC or other IBDs.
Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac test result. That simply is not true, because doctors have no way to officially diagnose non-celiac gluten sensitivity. A positive celiac test result can confirm gluten sensitivity, but a negative celiac test result cannot rule out gluten sensitivity. Many doctors mistakenly believe that a negative celic blood test result rules out gluten sensitivity, but there is no medical justification for making that assumption, it's simply incorrect.
While the FODMAP diet can be helpful for CC/LC/MC, it's not a perfect diet for most patients. Every patient has to customize their diet to fit their own specific food sensitivities. And note that stress (whether physical, chemical, or mental/psychological) has a major effect on MC. Very intense stress, or in many cases, chronic stress. can even trigger a relapse of symptoms in many cases. Therefore it's also important to find ways to minimize stress, otherwise stress can perpetuate the symptoms.
Anyone who has enteritis (intestinal inflammation) has lactose intolerance because the inflammation prevents our small intestine from producing adequate amounts of the enzymes need to digest sugars. Lactase (needed to digest lactose) is the first enzyme to be lost, and as the inflammation continues, the production of additional enzymes is also limited, making it more difficult to digest more than small amounts of many carbohydrates/sugars. But lactose is not our main problem with dairy products. The main problem is casein, the main protein in all dairy products. For most of us, like gluten, casein causes our immune system to produce antibodies that perpetuate the symptoms of the disease.
Feeling like crying is another side effect of the disease. It's a symptom of magnesium deficiency which is caused by the malabsorption problems resulting from the disease. This is a very complex disease, so it takes a while to understand how broadly it can affect our lives. Unfortunately most physicians don't understand most of these side effects of the disease.
You are very fortunate to have such a supportive husband. His support will make recovery much easier for you. Many of us are not so fortunate because those around us tend to suspect that most of our problems only exist in our heads (because we don't look as sick as we claim to be), making them far less supportive.
Regarding coffee/caffeine: it coffee made you run for the bathroom before your CC symptoms began, then it will continue to do so. If it didn't cause you to have to visit the bathroom soon after drinking a cup then it probably won't cause any problems for you now (as long as you are careful not to use any creamers that contain dairy ingredients such as casein). Beware that many of the so-called non-dairy creamers contain casein. If you put anything in your coffee, use something such as coconut milk, almond milk, cashew milk, or sugar or honey (no artificial sweeteners).
Please don't let it intimidate or overwhelm you. Like the rest of us, take it a day at a time, and learn as you go, and before long you will be an expert on the disease. You will know far more about controlling the disease than your GI doc ever dreamed.
Again, welcome aboard, and please feel free to ask anything. You are among family here, because everyone here understands exactly how you feel, and why you feel that way.
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 to our family! I know exactly how you feel, it's very tough and it takes a while to grieve since we lost the lifestyle we knew. Aside from the great advice I have received on here I found Tex's book about Microscopic Colitis (top right hand corner of this page) and the Enterolab tests the most helpful. I read Tex's book several times and should probably read it again. The Enterolab tests were helpful because they showed me my food intolerances. They are stool tests and you can order them yourself, but they are expensive. Another option is to go on an elimination diet, which is what I did. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
Try to reduce any stress. It can negatively affect us. In fact, I think stress is just as bad for me as soy. Meditation and yoga have really helped me deal with this.
Good luck! You can do it!
Love,
Patricia
Be gentle with yourself. Be kind to yourself. You may not be perfect, but you are all you’ve got to work with.
- Bhante Gunaratana
welcome AW
and sympathies that you had to find us.
one of the analogies I use is that MC World - and the info on this site is a bit like Alice in wonderland... you fall down a rabbit hole into a totally different world, where everything appears mad /bonkers, whimsical, very different from everything that you have learnt, believed up to this point about nutrition, health, medical system.
with time, reading discussions, being part of discussions and processing what is suggested, reading the success stories of others, and seeing the improvements that come with the right eating plan and Vit D3 and magnesium, MC world starts to feel normal.
take your time to digest (pun intended) what is written and discussed here. read some of the posts in the members success stories area, this will help you (and your husband) to see what others have done, how long it took etc.
take the changes at the pace you can handle. one fortunate thing is that you are retired. this journey can be a bit more intense for those working / raising young family etc. it will seem full on at first, with time it will become your normal.
Patricia has put the links for the key areas - in the guidelines to recovery area we have suggested reading and audiobooks / podcasts that can help with the mental and emotional aspects of life with MC.
purchasing the book written by Wayne(aka Tex) is a very good option for your husband to help him understand the whys and complexities of MC. (there is a link at top right hand corner of the web page)
happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you for your responses. It means a lot to me that you would take the time to address my concerns. I have copied and printed the responses to my documents so that I can digest (pun intended!) them today and in the coming days. I had a restless night last night, being unable to get to sleep with so many thoughts running through my head. This morning, I woke up groggy and with a headache so I'm going to take it slow and try to get my head on straight, but I will be back. This seems like such a safe haven for me. Thanks again!
Wanted to say Hello. Be easy with yourself and take baby steps. Take a nice bath with 2 cups of Epsom salts for your restlessness......as you will learn Magnesium is very important to us. Topically (such as Epsom Salts or Mag oil/lotion) is very safe to begin with. Keep us posted. You are not alone.
Hello, AW. I don't have anything to add to the above responses other than welcome to our group. You have found the best group around to help you navigate this world you have entered. I didn't realize how "off" I felt even before the D started in 2013 until my gut started to heal. This disease certainly is depressing at first but after you get things under control you'll find that you can lead a normal life, you just have to eat differently than most people. Search the forums here, read Tex's book and do the EnteroLab testing if you can. I was eating a lot of chicken before the testing and then found it was one of the worst triggers for me.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
I just want to welcome you to the board. You have come to the right place. Wonderful people with lots of knowledge!
Also, I must give a great hug to, and honor the way Tex explains the disease. While reading it, I was thinking that Tex must have been a teacher in a former life, giving a perfect and very pedagogic description of what MC is.
Thank you Tex, for all the work you put into this board.
Big hugs from
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Welcome to the forum. I am fairly new to this disease too. I follow all the advice and read as much as I can. Tex and Gabes are a wealth of knowledge. Along with the others who have offered ideas and support especially Vanessa with her Magnesium ideas. I hope to get control and lead a normal life too.
Thank you for the kind words, and the hug. You made my day.
You're very perceptive. I did teach for a few years.
Big hugs to you, also.
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.
I want to welcome you also. I don't post very often, but I read everything this group writes!!! They have saved my sanity and my life-- The kind words and suggestions support me deep in my heart!! (and my tummy) My friends and family really don't understand this disease. They try, but they can't grasp the magnitude of how this affects our lives. It's kind of funny- they think I am some nutritional guru (HA! HA!) but everything I know about this disease and nutrition has come from this support group. The collection of useful knowledge is unbelievable. Thank you again Tex and Gabes...... Heaven has a spot for you I am sure.
I just want to welcome you also. I also want to commend Tex for being such a dedicated teacher to us all. Even though I seem to have a handle on my MC symptoms I learn something new every time I visit
I want to chime in on the part about feeling sorry for yourself....be careful how much you let that settle in your life as it almost hurt my relationship no matter how much my husband loved me It definitely is a part of the grieving process just try to remind yourself that this healing takes time and detective work and just when you feel the detective leads are becoming cold jump on this site and stir the pot so someone can perhaps give you another idea to follow
One for All and All for One here!
Love every one of you out there
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
It definitely is a part of the grieving process just try to remind yourself that this healing takes time and detective work and just when you feel the detective leads are becoming cold jump on this site and stir the pot so someone can perhaps give you another idea to follow 