Ok, need help with food.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
MulkeyJ, I know you are feeling discouraged, and hopefully others who have struggled like you do will be here to offer advice. I know that it can take longer than you think it should for healing, and sometimes a Entocort is needed to calm down the inflammation so that the diet can take hold.
I do have one question for you. Are you using homemade chicken broth or buying it? Most store-bought chicken broth brands contain no-no's. So be sure and check the labels. I only buy broth that states on the label that it contains no gluten, no dairy, no soy and no yeast.
Rosie
I do have one question for you. Are you using homemade chicken broth or buying it? Most store-bought chicken broth brands contain no-no's. So be sure and check the labels. I only buy broth that states on the label that it contains no gluten, no dairy, no soy and no yeast.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
- Joefnh
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Mulkey J, I can fully understand where you are at. I was one of the cases that was severe enough that required hospitalization and steroids to settle things down enough for the diet to be an option. Certainly diet is important but at this stage you may very well need some of the more directed medications to deal with this. You have done everything correct to this point in adopting the dietary aspect of this, but you are in a position where you need to talk with your doctor about more aggressive medications.
Rosie is correct, double check with the chicken stock you are using a lot of them can contain gluten (wheat)
I have not had a chance to recently review your older posts so I may be covering old ground here but I would certainly look into other medications.
There are several on this site myself included that really did benefit from using steroid medications. As I recall the Entocort was out of reach for your insurance, another option that would help would be something like prednisone. As much as I hate to even mention that, that or another more direct medication may be required here. In my case as much as I look forward to getting off of it, the Entocort was required to get the D under control. Although I should mention that even with the steroids the diet is still a very large part of my recovery.
I would encourage you to talk to your GI doctor or your PCP soon about trying another more direct medication to get this under control. If your doctors are unwilling to try anything else I would call another doctor soon. I ended up going through 2 GI doctors until I found a really good one. The weight loss and obvious loss of nutrition and hydration is quite concerning here.
One question, has your doctor run test looking for C-Diff or other infections of the bowel. These are usually tested for through stool samples.
Hang in there, there are many here who have been through what you are going through. There is hope.
--Joe
Rosie is correct, double check with the chicken stock you are using a lot of them can contain gluten (wheat)
I have not had a chance to recently review your older posts so I may be covering old ground here but I would certainly look into other medications.
There are several on this site myself included that really did benefit from using steroid medications. As I recall the Entocort was out of reach for your insurance, another option that would help would be something like prednisone. As much as I hate to even mention that, that or another more direct medication may be required here. In my case as much as I look forward to getting off of it, the Entocort was required to get the D under control. Although I should mention that even with the steroids the diet is still a very large part of my recovery.
I would encourage you to talk to your GI doctor or your PCP soon about trying another more direct medication to get this under control. If your doctors are unwilling to try anything else I would call another doctor soon. I ended up going through 2 GI doctors until I found a really good one. The weight loss and obvious loss of nutrition and hydration is quite concerning here.
One question, has your doctor run test looking for C-Diff or other infections of the bowel. These are usually tested for through stool samples.
Hang in there, there are many here who have been through what you are going through. There is hope.
--Joe
Joe
MulkeyJ, I know exactly how you feel as so many of us that have had more severe cases. Joe's suggestions are an option. I started on Prednisone just to settle the bowel and it is a cheap prescription. Please contact your doctor immediatley and tell him the severity of your situation. Don't worry about the weight loss that will come back in time.
Please hang in there and keep us informed; you are not alone! You have been added to my prayer list. Ginny
Please hang in there and keep us informed; you are not alone! You have been added to my prayer list. Ginny
Whatever you decide to do, IMO, you should stop taking the Imodium, immediately. If it's not effective, then it's probably causing the D. You wouldn't be the first member to have that problem with Imodium.
I agree with Joe and Ginny - call your doctor and explain your situation, and ask for a regimen of Prednisone, to stop the D. Prednisone is cheap and effective, and it should stop the diarrhea within a day or so. That will change your outlook on life faster than anything.
This is a very depressing disease, and we all have similar feelings, at one time or another, but MC can definitely be controlled, and a positive attitude will get you there a lot faster than a negative attitude. You may have to keep reminding yourself that you can do it, but you definitely can do it.
Tex
I agree with Joe and Ginny - call your doctor and explain your situation, and ask for a regimen of Prednisone, to stop the D. Prednisone is cheap and effective, and it should stop the diarrhea within a day or so. That will change your outlook on life faster than anything.
This is a very depressing disease, and we all have similar feelings, at one time or another, but MC can definitely be controlled, and a positive attitude will get you there a lot faster than a negative attitude. You may have to keep reminding yourself that you can do it, but you definitely can do 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.
Just to throw in my 2 cents worth here................ The primary cause of malabsorption is damage to the villi of the small intestine caused by gluten. This is where the great majority of nutrients (I don't consider electrolytes nutrients) are absorbed. It is true that a 24 hour test for fecal fat is more accurate, but a one-time test can be used for screening purposes. I don't believe I ever had any significant malabsorption.
Here is the info taken directly from Dr. Fine's discussion of MC on his website:
What is the cause of Microscopic Colitis?
Extensive data from animals (mainly rodents) suggest that any form of colitis is the result of the body's immune system setting up an unusual attack on the bacteria living in the colon. What makes the body suddenly recognize these bacteria as harmful and worthy of this attack is not fully understood but there are several clues based on my research. First, it is known that aspirin and other non-steroidal antiinflammatory drugs (NSAID's) can cause this reaction. Also, if the balance of less immune stimulating bacteria (we will call "good bacteria") and more immunostimulatory bacteria ("bad bacteria") favors the latter, inflammation can result. This can occur from use of antibiotics and probably from chronic consumption of certain foods that favor growth of bad bacteria. The role of yeast (for example Candida) in this process is unstudied and therefore unknown. However, whatever tips the scale toward this reaction, it appears that there is an underlying gene responsible for the predisposition to have this form of colitis. In fact, my recent studies have revealed in most cases, the gene is the same as the one known to cause celiac sprue and gluten sensitivity (explaining why some patients get both syndromes). Furthermore, it appears that colitis can cause the immune system to begin recognizing gluten as immunostimulatory and vice versa, gluten sensitivity can lead to colitis.
Polly
Here is the info taken directly from Dr. Fine's discussion of MC on his website:
What is the cause of Microscopic Colitis?
Extensive data from animals (mainly rodents) suggest that any form of colitis is the result of the body's immune system setting up an unusual attack on the bacteria living in the colon. What makes the body suddenly recognize these bacteria as harmful and worthy of this attack is not fully understood but there are several clues based on my research. First, it is known that aspirin and other non-steroidal antiinflammatory drugs (NSAID's) can cause this reaction. Also, if the balance of less immune stimulating bacteria (we will call "good bacteria") and more immunostimulatory bacteria ("bad bacteria") favors the latter, inflammation can result. This can occur from use of antibiotics and probably from chronic consumption of certain foods that favor growth of bad bacteria. The role of yeast (for example Candida) in this process is unstudied and therefore unknown. However, whatever tips the scale toward this reaction, it appears that there is an underlying gene responsible for the predisposition to have this form of colitis. In fact, my recent studies have revealed in most cases, the gene is the same as the one known to cause celiac sprue and gluten sensitivity (explaining why some patients get both syndromes). Furthermore, it appears that colitis can cause the immune system to begin recognizing gluten as immunostimulatory and vice versa, gluten sensitivity can lead to colitis.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
In the beginning.. I dehydrated often.. was exhausted and depressed and before I would know it.. I would be at the emergency room getting rehydrated by IV. I used to keep pedialyte on hand to keep up the electrolytes but it is expensive.. have found that since I am on entocort.. I can tolerate Gatorade...lemon/lime. During the summer I try to drink a small bottle of the lemon/lime a day to keep my electrolytes in balance.
Entocort gave me my life back. It isn't for everyone.. but it has worked a miracle in my life. So grateful we have insurance that makes it affordable.
grannyh
Entocort gave me my life back. It isn't for everyone.. but it has worked a miracle in my life. So grateful we have insurance that makes it affordable.
grannyh
MulkeyJ hang in there
I know how you feel. I'm in the middle of a big flare up myself. I get worried too- but I try to think back to when I was first diagnosed, 10 years ago; I was at my sickest. I followed the Specific Carbohydrate diet, ( and am back on it again now), and things really did get better. Diet can make a huge difference. Rosie and others are very right- make your own plain chicken broth- canned has msg in it often, as well as gluten. Once you slow things down, either with a drug that works for you or food (or both) then you can start taking steps toward healing. The diet question I do believe really is the key. You really will be alright. It will happen. ( At my sickest, I often comforted myself by remembering that this disease- while absolutely awful at times, is supposed to run a benign course - at least that thought helped me through the worst patches).
Right now I'm eating homemade yogurt (so there's lots of beneficial bacteria), homemade chicken broth, bananas, and I've worked up to small amounts of simple roasted chicken. I'm having very big D right now too- lots, frequently, and lots of uncomfortable stomach sensations alright (upper/lower and everywhere in between). Sigh. Hang in there. I'm finding yoga and acupuncture help (it settles the mind and that's important too when you're trying to deal with this).
Mia
Right now I'm eating homemade yogurt (so there's lots of beneficial bacteria), homemade chicken broth, bananas, and I've worked up to small amounts of simple roasted chicken. I'm having very big D right now too- lots, frequently, and lots of uncomfortable stomach sensations alright (upper/lower and everywhere in between). Sigh. Hang in there. I'm finding yoga and acupuncture help (it settles the mind and that's important too when you're trying to deal with this).
Mia