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Susie wrote:I started out with Entocort last November and it seemed to help right away and very well. My doc tried to taper me quickly and all of my symptoms returned. I was on 3mg of Entocort when she started me on Lialda, which helped at the beginning, but not for long. Then she upped me back to 9mg of Entocort (which was better) and had me stay on the Lialda. Based on that, which would you assume I should try eliminating first?
That's a tough call, but based on the fact that the Lialda helped at first, then quickly faded, that suggests that you may have developed a sensitivity to it, and it may be causing your immune system to produce leukotrienes (much like NSAIDs, since mesalamine is a close relative to NSAIDs). This is known to produce inflammation for people who have IBDs, and who are sensitive to NSAIDs, as per the article at the link below. If I were in your shoes, I would try doing without the Lialda for a few days, to see if that might help.
I'm afraid I'd have to give bear meat some really serious thought before trying it. Somehow it has never appealed to me, probably because most of the plains Indians refused to eat it.
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.
Bear meat is nasty too, IMHO!!! I'm sorry but I have tried it before, cooked by a "hunter", and there was alot of gristle, even though he boiled it, fried it, etc. I love deer meat and have been wanting to try elk as well. I also need to try duck. I tested positive for chicken and beef so have stayed away from buffalo and/or bison.
I'll add a hug to the mix. Susie, I am sorry your are in such a frustrating place. What I do at such a juncture is veer back to the basic diet of chicken broth, applesauce, mashed potatoes, jello, water........ bland, boring, and dull but it works to heal my gut. Then slowly I add back some safe foods and recipes from my log ie: for me this would be chicken, overcooked carrots, white rice, gluten free bread with tuna. Eliminate and then add, that's what we do. I do hope you are feeling better from the virus you caught.
best,
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Cory, Thanks for the encouragement! I don't think I have been back to this post since you replied, but the hugs are definitely the best thing!
Update: Tex, I think you were right about the Lialda. Comically, my daughter (2) was playing with a piece of paper the other day and it caught my eye.... Low and behold, the medical pamphlet that came with my Lialda bottle. So I took a look at it and was a little shocked at what I was ingesting! I am fairly certain that my recent kidney problems are a result of this drug, and it can mimic colitis in sensitive individuals. So I stopped it cold turkey on Thanksgiving day. I have been better ever since. Caught another virus last weekend that threw me off the boat again for a few days, but overall I am so much better!
I cannot tell you all how much your encouragement helped get me through. I took your advice (rice chex with rice milk instead of bananas and peanut butter) and just embraced all of your hugs
Thanks for taking the time to bolster me up! Susie
I'm sorry to hear that you've caught another virus, but that's certainly good news that you may have verified that the Lialda was preventing you from reaching remission. That's exactly why I believe that taking budesonide and mesalamine together is almost always a bad idea.
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.
Tex, I think the viruses are inevitable, at least until my kids get a little older! 4 little munchkins under 10-someone is going to pick up something, and my two year old sucks her thumb!
I hear you. You definitely have my respect. Taking care of a family that size is a full time job and then some, without MC. With the MC and other issues thrown in, it's bound to require superhuman effort on most days.
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.
Tex wrote:I hear you. You definitely have my respect. Taking care of a family that size is a full time job and then some, without MC. With the MC and other issues thrown in, it's bound to require superhuman effort on most days.
Gloria
You never know what you can do until you have to do it.
I also want to offer you encouragement and hugs. I have had MC for about 20 years and it was only after reading Tex's book that I realized that there was hope of getting better. I was on Entocort for a year, but started getting very bad cramps and went off. I have been Gluten, dairy, nut, soy, corn, etc. free for 3 months and I am better, but it is very challenging to find foods that fill me up. Also, I am working with a doctor who did a test and said that I have SIBO. I read about the Special Carbohydrate Diet and as a result, I have recently eliminated all starches, including potatoes and sweet potatoes.
I know that many others have said no fresh vegetables, and that had been my experience. (They pass right through). However, I read the book Eat to Live and realized the powerful healing power of vegetables. I started blending a wide variety of vegetables (spinach, kale, etc) with some fruit, adding only water. That is my breakfast. According to the nutrition doctor that I am working with, the blending greatly helps the ability of the digestive system to do its work. It is delicious and it hasn't caused me more problems. I still have a long way to go, however. If others think that this is a bad idea, please go with their advice.
Also, my nutrition doctor believes that people with digestive problems benefit from being on continuous probiotics, being careful to choose ones which are dairy free, gluten free.
These are ideas, only. Mainly, I wanted to offer you encouragement and strength. Best of luck.
Alice
Welcome to the board. It's very gratifying to hear that my book was instrumental in encouraging you to begin a treatment program to gain control over this disease. After 20 years, you surely have extensive intestinal damage, but with the proper diet, and persistence and dedication, the odds are very good that you will be able to control your symptoms and get your life back.
I wish you the best of luck with your treatment success, and please keep us updated on your progress.
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.
Thank you for the ideas! Honestly veggies for breakfast is much more appealing than a buffalo burger. I had followed SCD very strictly for about six months. I believe I have SIBO, but my doc refuses to test for it. I have the typical bloating that comes with any whole grain. I got discouraged and added rice back in when I had to eliminate the peanut butter and banana smoothie I had every morning due to peanut butter intolerance. I have a Vitamix, so I believe that would blend well. I think the only fruit I can tolerate is bananas. What would you mix in with that?
Looks like I have some reading to do! I want to get Tex's book, and you are the second person to recommend Eat to Live. I have improved incredibly since stopping the Lialda and eliminating the peanut butter. I would love to find new healthy things to introduce into my diet.
Nice to see your picture Susie! I was bummed out about peanut butter also. And then I found out that if peanut butter is a problem, then soy probably is also ( and it is) and then I found that means all legumes are out also !
I am still dealing with this one because I love green beans ( they don't cause gas) and hummus.
No grains, huh? I have to admit that I eat a good amount of rice and it's something my body seems to love and feel good eating. Sometimes I cook it in half light coconut milk, half broth. Yum.
Can you have almonds? The good morning Paleo muffins are a delicious way to start the day or snack. The "flour" is almond flour. I bake a batch and freeze them. That way, I can thaw easily and enjoy as needed.
Can you believe that? Some sort of torture it seems. I do ok with white rice, but even things like cereals an rice cakes made with brown rice give me horrible bloating! Right now I am making eggless white rice pancakes and am doing fine with that. I do make broth. Maybe rice with broth would be yummy. I fried some white rice in avocado oil for something crunchy. Keep the ideas coming :)
