I am new to this forum, but was diagnosed with MC 15 years ago. I have tried every drug, modified my diet etc and nothing has worked. I have just learned to live with it. Unfortunately, my MC is now getting worse. I just had an EGD and colonoscopy. My GI said I have the most "impressive" case of MC he has ever seen. It is so severe, he could actually see it! On top of that, I have erosive esophagitis, and hemorrhagic gastritis. If I don't get this under control soon, I am at risk to loose my entire colon. I have already had two bouts of a large bowel obstruction. I am now back on Entocort and had to start a PPI for my stomach. I do follow a gluten free diet, but admittedly I cheat every once in a while.
It is time for a radical life style change. Any advice is welcome.
Looking for help
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Hi Debe,
Welcome to our internet family. MC can be controlled, in most cases by diet alone, but if you seriously want to save your colon, and recover your health, I definitely agree that you're going to have to get serious about your diet. Not only will cheating guarantee that the diet won't work, but we have to be extremely careful to make sure that none of the foods we eat (nor the products that we put on our skin) contain any traces of not only gluten, but all other foods that cause us to react. It seems impossible to do at first glance, but trust me, it's definitely doable. I've been in remission for over 10 years now, so I'm speaking from experience. I get the impression that you're ready to do what it takes to get your life back, and we're here to help you in any way we can.
MC is a serious, life and health-altering disease, and it has to be taken seriously, and treated correctly, in order to be controlled. Getting your diet properly sorted out will also very likely eliminate most of your other health issues, as well. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. MC can be controlled, in most cases by diet alone, but if you seriously want to save your colon, and recover your health, I definitely agree that you're going to have to get serious about your diet. Not only will cheating guarantee that the diet won't work, but we have to be extremely careful to make sure that none of the foods we eat (nor the products that we put on our skin) contain any traces of not only gluten, but all other foods that cause us to react. It seems impossible to do at first glance, but trust me, it's definitely doable. I've been in remission for over 10 years now, so I'm speaking from experience. I get the impression that you're ready to do what it takes to get your life back, and we're here to help you in any way we can.
MC is a serious, life and health-altering disease, and it has to be taken seriously, and treated correctly, in order to be controlled. Getting your diet properly sorted out will also very likely eliminate most of your other health issues, as well. 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.
Hi Debe, for now you may want to back your diet off to your known 'safe' things, and eliminate fiber, sugar, caffeine, fat and acidic foods. Think 'eat simply'-- baked chicken or lean beef with well cooked vegetables, broths, rice (if you tolerate it), but keep it low fat. Fat is a stimulant in the gut and right now you don't need that. I use my pressure cooker and slow cooker a LOT because it keeps me from being tied to my kitchen. I use ground turkey and make my own turkey sausage patties too for variety.
As Tex said there can be no cheating. This isn't a disease where a little gluten means a little stomach ache. A little gluten can set off a monsterous flare when your system overreacts. If you have others in your home that eat foods with gluten, make sure to clean your food prep area before you prepare yours so there is no cross contamination.
Like you I was also on a PPI and Entocort. They helped immensely in getting me back on my feet. I was on Entocort 4 1/2 months. I used that time to get my diet in order. I stopped eating dairy and gluten. After a couple of months I felt I was still having too much 'gurgling' so I cut out soy and that made all the difference. Being on Entocort can mask other sensitivities. I thought I could eat eggs until I was off Entocort only to find out I reacted to them too.
If you don't adjust your diet you will relapse once you stop the Entocort. The medications reduce the inflammation but the diet heals. If you haven't read the sections about elimination diets or Enterolab testing I recommend you do that. I personally found the Enterolab testing to be very accurate in my case, but other have reached remission by trying an elimination diet.
I'm sorry that you are going through such a rough patch. I think you'll find a lot of sound advice here.
Carol
As Tex said there can be no cheating. This isn't a disease where a little gluten means a little stomach ache. A little gluten can set off a monsterous flare when your system overreacts. If you have others in your home that eat foods with gluten, make sure to clean your food prep area before you prepare yours so there is no cross contamination.
Like you I was also on a PPI and Entocort. They helped immensely in getting me back on my feet. I was on Entocort 4 1/2 months. I used that time to get my diet in order. I stopped eating dairy and gluten. After a couple of months I felt I was still having too much 'gurgling' so I cut out soy and that made all the difference. Being on Entocort can mask other sensitivities. I thought I could eat eggs until I was off Entocort only to find out I reacted to them too.
If you don't adjust your diet you will relapse once you stop the Entocort. The medications reduce the inflammation but the diet heals. If you haven't read the sections about elimination diets or Enterolab testing I recommend you do that. I personally found the Enterolab testing to be very accurate in my case, but other have reached remission by trying an elimination diet.
I'm sorry that you are going through such a rough patch. I think you'll find a lot of sound advice here.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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UkuleleLady
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Hi Debe,
It's entirely possible to greatly reduce upper and lower GI symptoms when you work on your diet. Many of us who were on PPIs for years found that a gluten/dairy/soy maybe egg and maybe even all grains - free diet has eliminated upper GI symptoms. Not everyone here, but many of us. It is worth trying.
My diet while healing was mostly meat, cooked mushy greens, sweet potatoes, bananas, squashes etc. but mostly meat. I will never eat dairy, gluten or soy again. I hope to someday eat eggs but I can live without them.
I hope you will consider eliminating at least gluten and dairy completely. If you can do enterolab, I found it to be extremely helpful. It reinforced what I needed to NOT eat. And I stopped having diarrhea as well as heartburn as a result.
Keep in touch,
Nancy
It's entirely possible to greatly reduce upper and lower GI symptoms when you work on your diet. Many of us who were on PPIs for years found that a gluten/dairy/soy maybe egg and maybe even all grains - free diet has eliminated upper GI symptoms. Not everyone here, but many of us. It is worth trying.
My diet while healing was mostly meat, cooked mushy greens, sweet potatoes, bananas, squashes etc. but mostly meat. I will never eat dairy, gluten or soy again. I hope to someday eat eggs but I can live without them.
I hope you will consider eliminating at least gluten and dairy completely. If you can do enterolab, I found it to be extremely helpful. It reinforced what I needed to NOT eat. And I stopped having diarrhea as well as heartburn as a result.
Keep in touch,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Thanks so much to those who have replied to my post. My husband and I are going on a trip of a lifetime to Europe in September, so I will start the elimination diet when we return. In the meantime, I vow to completely eliminate gluten, fibre and fat as I know they are foods I can't tolerate. I love poached eggs, so I will be sad if they have to go as well. As a mom I have always put myself last, but now have to take care of myself as I would my family.
Thank you everyone for your support
Thank you everyone for your support
As you probably realize, you can not take care everyone else unless you take care of yourself first. Good luck in this journey. I was fortunate that I am only gluten intolerant. It took me awhile to fully embrace the "free" aspect of the GF diet. You are not alone there. I feel so much better when I do not eat gluten.
Brenda
Welcome Deb, you've come to the right place for knowledge and encouragement.
I agree with the others recommendations. Would also add that enterolab tests could help you sort the diet out quicker. I discovered I reacted to soy and it is in almost everything not cooked from scratch.
It gets a lot easier in remission and inflamed gut seems to react extremely to anything.
I agree with the others recommendations. Would also add that enterolab tests could help you sort the diet out quicker. I discovered I reacted to soy and it is in almost everything not cooked from scratch.
It gets a lot easier in remission and inflamed gut seems to react extremely to anything.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Welcome Debe. Your trip sounds wonderful. If you can, I would order the Enterolab tests ( A and C) and send off your samples before you go on vacation. By the time you come home, your results will be in and you can start your elimination diet with sure results in hand .
Have a great time. We are here to help when you are ready
leah
Have a great time. We are here to help when you are ready
leah