Medications And Supplements That May Be Used By MC Patients

[Grahm]

Marilyn,

I sincerely will have you in my prayers. Please hang in there and after you get over this flare, you can start again.

Love,
Connie

[tex]

Hi Marilyn,

I hope your doctors have been able to stop that Reclast reaction and you will be able to attain remission from the MC flare soon.

Tex

[Hunnigram]

Hi Connie,

Thank you for your prayers and your kind words of encouragement.

Love, Marilyn

[Hunnigram]

Hi Ted,

The Rheumatologist/Osteo doctor is the one that ordered it. She ordered a week of Medrol...it didn’t do much. The Primary ordered Atarax to calm down the terrible itching along with Hydrocodone cream. It would help for a little while and come back just as strong and bright red skin and welts....The Atarax made me pretty dizzy and sleepy so I had to be careful getting to bathroom ...

Reclast is a timed release drug ...oh joy... This will be a long, slow process....just have to be patient. I am on diet...small amounts....taking 6 Lomitil, 4 Imodium, added 3 Pepto Bismol 3 times a day. Still having explosive diarrhea about an hour to hour and half after food.

[gmontl49]

Hi everyone! I have had a long and frustrating journey and am so glad I came back to this family. I have had MC for over 10 years and mostly thought it was due to Dairy/casein so avoiding that has helped but no means. I am still having a terrible time. I also have a severe REM disorder with horrific nightmares. The only thing that helps is Klonopin. Now I see that is not a good med to take. I was also just diagnosed as having SIBO and IBD and was prescribed Cipro - no relief. was also on Xifaxan. Now he has ordered Viberzi. Do you have an thoughts on this. Thank you for this support family. Deb

[tex]

Hi Deb,

I don't have any experience with Viberzi, but I'd be surprised if it provides any significant benefits, since it doesn't appear to decrease inflammation.

MC depletes magnesium and vitamin D. Because your MC has been active for so long, I wonder if your REM/nightmare issues might be due to a chronic magnesium deficiency. When my own magnesium reserves became critically low a few years ago, I had similar symptoms that interrupted and interfered with my sleep most nights. My doctors didn't have a clue, but when I figured out the problem and significantly increased my magnesium supplementation, the symptoms quickly disappeared.

You've posted a nice photo. I could easily turn it into an avatar for you if you want. Just let me know.

Tex

[tbenton7]

I posted in Nov that after over 5 years in what my Gastro calls 'deep remission' ....I had vicious flare while in the Bahamas while on vacation for two weeks and no amount of Imodium helped so I knew it was not normal diarrhea because Imodium works perfectly when its 'just' that. Used expired Entocort when I got home and its worked and I went to Gastro the week after Thanksgiving to discuss the flare and the cost of the Entocort generic and to tell him I would order from Canada or India next time. He loathes what we pay for meds in this country and said he did not have any issues with me ordering offshore and would happily give me an RX if I needed it. He also said that 'legally' he would tell me to toss the expired meds BUT ......! I respect him so much and we are good friends so I knew what he was 'trying ' to tell me about not taking the expired meds. He was elated that they are working for me and he knows I have quite a stockpile.

He was checking my meds list to see if anything I was taking might have caused the flare and I told him I was glad he brought that up based on what I read on this forum on meds that can trigger MCC. Wellbutrin was no longer on my meds list because I have not taken it for many years. I took it for about a year to help stop smoking and it worked so I never took it again UNTIL this past October when I started having strong smoking cravings and asked my primary to put me back on it. When I took it the first time around I got my first diagnosis of MCC thru colon biopsies after many stool tests and so forth and no meds worked except the Entocort which at the time I got cheap thru employer drug plan before I went on Medicare. I don't think we discussed the Wellbutrin back then. Well.....he smiled and said YEP....that is what surely did it. He said Wellbutrin is the number one culprit he has found to cause trouble. I was thrilled to hear that. I had already been tapering off the Wellbutrin because of the way it was making me feel this time around and it didn't seem to be doing its job anyway. I have been off it totally for 2 weeks and my 'poop' is more and more normal so the combo of stopping it and taking the Entocort is working fine. He said once I finish the current regimen of Entocort I should be FINE. Time will tell of course but he doesn't seem to think I will flare again since I already was in deep remission for over 5 yrs. HERE'S HOPING and I wanted to share this information.

[tex]

Thanks for posting this. I wasn't aware that Wellbutrin has been mentioned by anyone as a problem for triggering MC, Consequently, I always considered it the safest of the anxiety/depression classes of medications. Apparently, none of the anti-anxiety or anti-depressant meds are safe, since they're all known to trigger MC for some patients.

Tex

[dolson]

I've been on Klonopin since 1993. I take it for dystonia and can't live without it. It relaxes the tight ropes or muscles in my neck and oral mandibular area. It calms the nerves that make me feel like I could light up NYC! I take 4 mg in the morning and sometimes 4 mg in the afternoon. This is below the therapeutic range. I've had no ill effects from the drug. It helps my disease.

[Perky22]

My gastro doctor recommends I start taking Fibercon on a daily basis, a bulking agent for a treatment of Microscopic Colitis to develop more regular bowel habits. Is this a wise thing to do in your opinion? Also the doctor recommended an antispasmodic to help relieve back and stomach aches. Not sure if that’s a safe medication. Thanks for your help.
Carol

[Erica P-G]

Hi Carol,
The quick answer is no fiber (at least very minimal until you reach a better bathroom point). Fiber acts like a rake on the intestines use with caution.

The antispasmodic, well you’ll probably get benefits from Epsom Salts baths without stressing the gut with chemicals, and applying magnesium lotion directly at the source of discomfort. Also be sure to apply enough magnesium on a daily basis to meet the needed 400-500 mg requirement plus your VitD3 this along with no dairy or any unsafe food should give you best results.

It takes a little tweaking to find what works best..

[Perky22]

I appreciate your response.
Carol

[tex]

Hi Carol,

FWIW, I agree with Erica — neither one of those suggestions by your doctor will help to reduce the inflammation that causes MC. While fiber will indeed "bulk up" the stool, it not only does not reduce the intestinal inflammation, it significantly increases it. Fiber is not our friend. While we can usually tolerate it after we're in remission for a while, it's one of the primary causes of failed recovery attempts, because it perpetuates a low to moderate amount of background intestinal inflammation (and we don't need any added inflammation when we're already in a flare).

In support of Erica's suggestion to try using more magnesium, I'll point out that the intestines contain a lot of smooth muscle tissue, and the number one cause of muscle spasms is magnesium deficiency. The body requires magnesium in order to complete many hundreds of different chemical processes. One of the main functions of magnesium is to help muscles to relax. That's why magnesium is often used by savy ER docs to stop or prevent a heart attack. The heart is mostly composed of cardiac muscle.

I hope this helps.

Tex

[Lss]

Hi! I’m new here. I was diagnosed four years ago when my gastroenterologist took biopsies during my colonoscopy. This was after years of having what was thought to be IBS. I was put on Budesonide after a trial of Imodium. It worked and I was in remission for three years. Then last November, I got Covid and my only symptoms were diarrhea, headache and loss of taste and smell. Seven months later, I still have the diarrhea. I was treated with a course of Budesonide and things got a little better. Now after coming off Budesonide, I’m back to the diarrhea. Now on my second course of Budesonide. I am in heart failure and have cardiac cirrhosis from my right sided heart failure. I have to stay on a low sodium diet and also try to eat a liver friendly diet to put less stress on liver. I’m almost 69 and in pretty good shape for someone who’s first heart surgery was at 22. Wondering about diet for my MC that goes with my other diets. Also your thoughts on Budesonide. I feel I have a good gastroenterologist (trained at Mayo). Been with him for years for Acid Reflux originally. My hematologist is at Duke.

[tex]

Hi,

Welcome to the group. If your gastroenterologist was trained at the Mayo, he should be at least somewhat familiar with treating MC by diet changes, although, like most MDs, he probably prefers to use budesonide. The problem with budesonide, is that published research shows that fully 85 % of patients who respond to budesonide, relapse, after the budesonide treatment ends. So, like most medications, it's only a temporary remedy, with a relatively high side effect risk.

Because every MC patient has different food sensitivities, determining a safe diet is an individual task. We can tell you which foods are the safest to try, and which ones are the most likely to be causing you to react, but we can't tell you exactly what foods will be best for you, especially because of the restrictions imposed by your other health issues. We're really not qualified to specify a safe diet that incorporates the requirements for a heart failure patient. You and your doctor would need to look at the list of foods that are safe for most of us, and determine if they would be safe for you. Another issue is supplements. MC causes a serious malabsorption problem for most patients, but most of us are better off avoiding supplements while we're recovering (because many supplements are triggers for MC reactions), and then we worry about balancing our dietary nutrition after we're in remission, because we can absorb supplements much better, then. But for all I know, that might not be an option for a heart failure patient, because of certain essential nutritional needs.

Vitamin D is an exception. Most of us are low on vitamin D, and MC depletes vitamin D and magnesium. So most of us need a supplement in order to allow our immune systems to function normally. Without vitamin D and magnesium (to activate the vitamin D), we cant heal. For some of us, these deficiencies may be the main reason why we have MC in the first place. But the wrong type of magnesium, especially, can cause diarrhea, so many of us use magnesium oil or lotion on our skin, or soak our feet in an Epsom salt solution, or add Epsom salt to our bathwater, so we can absorb it through our skin, while we're recovering.

Basically, the best diet is a simple diet of a safe meat, maybe potatoes, and a few overcooked vegetables, to heal your digestive system and put the disease in remission. The safest meats are turkey, lamb, and wild-type meats such as venison, goose, duck, rabbit, pheasant, quail, etc. Avoid all foods (or medications) that contain gluten, dairy products, soy, or chicken eggs. Avoid all artificial sweeteners, and minimize sugar. Peel and overcook all vegetables, and minimize fiber. No raw fruit, except maybe a banana or two. All other fruit needs to be overcooked (or avoided until after you recover). You may be avoiding fruit anyway, because the fructose in fruit has to be converted into glucose by the liver, before the body can use it.

Anyway, the simpler the recovery diet, the better. And all food should be prepared from simple ingredients (cooked from scratch) at home, with only a little salt, for seasoning. Research shows that over 50% of meals at restaurants that are claimed to be gluten-free, are not. We can't just minimize our food sensitivities — we have to avoid them 100%. Even a tiny trace will cause us to react.

I hope this will help you to select some safe foods for your recovery diet. The intestines require a lot of protein while they are healing, so we go heavy on the protein. Carbs are totally unnecessary, for good health.

Again, welcome aboard, and please feel free to ask anything.

Tex