The Importance of Keeping Your Gut Healthy: Part Two

If you read my last post for MultipleSclerosis.net you know I’ve been having stomach issues for several months. Pain and cramping in my abdomen, along with chronic diarrhea, have plagued me for too long. It also forces me to stay home. You don’t want to be far from a bathroom. My gastroenterologist prescribed several medications for me to try. One cost over $400, after a discount, for a two week period. Nothing worked.

(If you want to read my prior post click here.)

Tests and more tests

Last week I had a colonoscopy. I had one two years ago, but as my doctor said he had to get a closer look at what was going on. The fun (NOT) prep was the same as always. After the procedure was over I consulted with the doctor for the few minutes he allotted. All was clear. No polyps. They’d grow a culture to see if the bacteria they previously found in my small intestine (the reason for all the medications mentioned above) was lingering. He seemed annoyed at my many questions. I was annoyed by his demeanor. Results from the culture found no lingering bacteria. That was good news, right? Then why did I feel so desperate and vulnerable? Because I’m living with the same symptoms with no answers in sight. I called my doctor’s office and told the nurse to ask the doctor to call me. I kept the phone by my side all day. I turned the volume up so I wouldn’t miss his call. He never did.

In the meantime, I called my neurologist to put her on notice about what was happening. The nurse gave me this message from the doctor: “I doubt your issues have anything to do with MS.”

Huh?

The last article I wrote focused on the correlation between MS and the gut. How could my symptoms have nothing to do with my disease in one quick call? For now, I am living on Imodium, Bentyl, and lots of patience, but my patience is running out. I plan on calling my gastroenterologist and my neurologist to insist they discuss my symptoms. I refuse to allow them to brush me off with easy answers and no thought. I matter, and I must use all my advocating knowledge and skills to get what I need. I am tired of living with these symptoms and so is my MS exacerbation. My walking is difficult and I won’t drive on highways. I pray the feeling in my right foot returns.

Considering my options

If I’m not happy with the answers I receive I may go out of my comfort zone by consulting with a well-known neurologist who has done important research on the gut microbiome. He practices in another state, and it might cost more than we have, but I can’t live like this much longer. I am trying my best to de-stress, get whatever exercise I can, drink lots of water and meditate. My diet is bland, bland, bland because I am afraid of eating anything that might trigger more discomfort.

Have you experienced the same symptoms? What did you do to feel better? Medications? Special diet? Any and all thoughts are very welcome!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (51)
  • J R
    2 years ago

    Thank you, and everyone, who writes the uncomfortable (literally and figuratively) articles here. It helps my sanity, or lack of. LOL
    I have felt for the last ten years or so that all doctors seem to be passing, or completely unaware, of the buck. They have no time, or desire, to connect any possible dots. I am so much more than annoyed right now with my doctors. I used to be such a pleasant person and annoyed now seems like my modus operandi because so much of my life revolves around the medical field. Yuck. Just saying that out loud annoys me. I go from one extreme to the other. Both extremes require lots of fluid which is absolutely my kryptonite for my bladder issues. I just needed to vent. Thank You Very Much!

  • B.L.
    2 years ago

    Hi.

  • LuvMyDog
    2 years ago

    I was sick for months at a time. Terrible nausea and stomach pain. None of the “brilliant” doctors could come up with an answer. I did a lot of reading about the symptoms and went back to my gastroenterologist and asked to be tested for h.pylori. The test was positive. Finally, somebody knew what the problem was. I have attacks of this bacteria about every 2 months and they last anywhere from 1 week to a month or more. It’s miserable but I can tell the second is starts again. Most doctors never test for this and many will tell you that if you get it and are medicated for it, that it’s over. That is a bald face lie! I have had this for several years now. Anytime my gastro guy tells me it can’t possibly be the same problem, I take the test again and prove him wrong.

  • tramcram
    2 years ago

    Hello Cathy… I have enjoyed your posts for quite some time. I decided I wanted to join. I was diagnosed with ms in 2009. I have never had bowel issues until the last 4 months. symtoms include: bloating, incredible gas, upper abdominal pain, liquid leakage of fecal matter, and loud rumbling sounds, with odd shaped stools. I just got results from a stool test. My PCP tested for everything associated with the problem… all negative. My neurologist told me that it is associated with ms. This condition has greatly interferred with my daily life. I too have to know where the bathroom is at all times. I am going to have a colonoscopy in two weeks. upper and lower. I’m hoping I can find an answer. In reading everyone’s comments, I’m going to start taking a probiotic to see if it helps. Thank you for your posts. I look forword to being a member of this site.

  • Alex Schilling
    2 years ago

    Thanks, really good article and comment tips. I have similar but not as severe problems as you. I have found that I am very sensitive to food spoilage, can’t eat leftovers at all. When I have the runs, my wife makes me “mushy rice”, rice that has been boiled to the consistency of a porridge, and along with Imodium it always straightens me out within 48 hours.

  • jennyb
    2 years ago

    One thing I have learned over the years of autoimmune disease is that no one cares as much about your health as you. Keep at it!

  • Cathy Chester moderator author
    2 years ago

    Exactly, jennybrownlee4. We must be our own best advocates. Always.

    Thanks for sharing your thoughts and being a part of our community.

    Best to you always~
    Cathy

  • Sandy368
    2 years ago

    I also have MS along with IBS-D I under went every test from upper GI to nuclear gallbladder to colonoscopy. Really everything they could test, they tested and found nothing. All I kept being told was to increase my fiber which did nothing but make my cramps and gas worse. What I learned after much research, trial and error was that the only thing that works for constipation is insoluble fiber, it can not be soluble. Soluble only makes the issue worse. Starting of for me was quite difficult but after eating bran cereal on a daily basis which is a minimum of 7-10 grams fiber (7 grams per cup) I can now eat anything. My stomach still feels a confusion of yucky and hunger at the same time about 2 hours after eating quite often and my stomach is still a bit bloated after every meal after the first meal of the day but it is the best that I can do for now. So keep trying until you find what works for you, but in my opinion, it has to be done naturally with out all the medications that are compounding the issue. I to used to live on every laxitive out there, script and otc.

  • Cathy Chester moderator author
    2 years ago

    Thanks for sharing your story, Sandy. I’m so glad you found what works for you. And you are right, we have to find it naturally and get off all the meds the doctors keep prescribing! Thanks again. Cathy

  • Evalentine
    2 years ago

    I have MS and had bowel problems as well. I cut out gluten and lowered my dairy intake and it helped, but I still had problems. Then I started following the diet for irritable bowel syndrome and it has done wonders!!!!
    Maybe it would help you as well. You need to eliminate foods containing fodmaps. It has made a huge difference for me!

  • Cathy Chester moderator author
    2 years ago

    I’m so glad it worked for you, Evalentine! Several people told me about Fodmap. I just got a book I want to read, Gut Imbalance Revolution. This is a new area for me so I need to learn what SIBO and FODMAP is, and what the IBS diet is, too! Many thanks.
    Cathy

  • BillD999
    2 years ago

    Hello Cathy, I have not read all your posts so I don’t know if you have tried different diets. Are you familiar with the Wahls Protocol diet? Terry Wahls is an MD with MS and I would recommend you look into it. In a short summary, it is a type of paleo diet, gluten & dairy free, low sugar, low carbs, lots of high nutrient fruits & vegetables. There is more to it of course, and it is rather strict but I believe it has helped slow the progression of my SPMS. Here is a link to the book:

    https://www.amazon.com/s/ref=nb_sb_ss_i_1_3?url=search-alias%3Dstripbooks&field-keywords=wahls+protocol&sprefix=wah%2Cstripbooks%2C211&crid=1WGAZCZ61HXKS

  • Cathy Chester moderator author
    2 years ago

    Thanks, Bill, and thanks for circling back.

    I’ve gone gluten free and when my antibiotic round is over a friend of mine, who works in nutrition, made some suggestions for me. I also ordered a new probiotic in hopes that it will work better than my current one.

    I sincerely appreciate you taking the time to help me and offer your guidance. I was hoping to help others with my post, but I believe (again) that the readers of MultipleSclerosis.net are generous of heart and so smart and savvy! Hooray for all of you.

    Have a wonderful day~
    Cathy

  • BillD999
    2 years ago

    Hi Cathy, I didn’t know you had interviewed Dr Wahls. I do follow her diet, although not exactly to the letter. It is very restrictive but the main guidelines that I mention in my reply are important and can become a habit the longer you stay with it and, most important, if you see some benefit. The cravings for carbs & sugar are tough at first because these are so much a part of our diet. I have found that it gets easier over time.
    I don’t know if this diet is the solution to your stomach issues but I think it’s worth a try and I agree with you that the connection between MS and the gut microbiome is becoming more accepted. That being said, it does not surprise me that your dr does not seem familiar with nutrition issues. Unfortunately very common.

  • Cathy Chester moderator author
    2 years ago

    Thank you, BillD999. I interviewed Terry Wahl’s a few years ago so I’m a bit familiar with her protocol. Thank you for reminding me about her diet. Have you tried it? I am afraid it is very difficult to stay on because it is so restrictive. Then again perhaps I need to bite the bullet! Thanks so much for sharing this information with me. It’s greatly appreciated. Cathy

  • Michelle
    2 years ago

    Cathy-

    Not sure if this has been answered, but have you tried something like the autoimmune protocol? It focuses on elimination common allergens from your diet with the thought that some foods can cause inflammation in the gut creating the issues you’re talking about(there is good science behind this as well). It isn’t necessarily eating “bland, bland, bland”, but eliminates things that might be stressing your gut out. For example, I have learned that gluten and eggs are very bad for my system. It takes a bit of work to learn to cook without these, but when all is said and done- it’s not so bad. I do have to bake my goodies now- but you know, they are much healthier because I do (I can have a cake or cookies without too much guilt because of al the healthier substitutions I make). If you haven’t tried the AIP lifestyle, I highly recommend it!

  • Cathy Chester moderator author
    2 years ago

    Michelle~

    Many thanks. I’ve heard of the Autoimmune Protocol but honestly, I haven’t looked into it. I do think the key is elimination. Right now, with what I’ve been eating, it’d be ADDING things back into my food regimen. I’ve limited myself to gluten free, chicken, turkey, rice, etc. What you say makes GREAT sense! Many, many thanks for your kind thoughts. Take good care, Cathy

  • Learner2010
    2 years ago

    Thank you for sharing your story and I’m sorry you’re experiencing this. Gut issues effect your whole world!
    For myself, my digestion/gut has been a longstanding issue complicated by my sugar addiction and emotional eating. Whenever i would try to build a healthy biome (e.g. eating healthy, probiotics, supplements, etc.) the effort would always be offset by eating desserts and other baked goods.

    In early January this year i completed a 7 day fast. Electrolyte water only. I found the True North nutrition center (in Santa Rosa CA) online and watched all their videos and read all their resources.

    Its only been nine weeks, but my pallate has changed. I’ve eaten 95% vegan and gluten free, with no sugary desserts. I firmly believe the fast re-set my biome and now my body craves healthy food. My gut feels 90% cured. I still have much work to do about the emotional eating/addiction, but knowing there is a safe way to re-set the sustem is a godsend.

  • Cathy Chester moderator author
    2 years ago

    That must have been a difficult fast to follow, but your results sound so worth the effort! I am so happy for you, Learner 2010. Thanks for sharing your story and being a part of our community. Cathy

  • FoothillJoey
    2 years ago

    Gut bacteria, google B Fragilis A Polysaccharide PSA. Let me know if you find this strain, so I can add it to my probiotic. Vsl#3ds for ulcerative colitis. Have progressive MS, Viberzi was saving med for accidents I was having with bowels. Hope this helps

  • Cathy Chester moderator author
    2 years ago

    Foothill Joey~

    The probiotic you describe is one recommended by Dr. Howard Weiner from Brigham and Women’s Hospital in Boston. He is an authority on the gut microbiome so you’re taking a good one.

    Never heard of Viberzi before but if it works for you then great! Thanks for letting me know.

    Now I have to read up on Fragilis A Polysaccharide PSA in a way I can understand – mostly see medical jargon. I hope you feel better and I thank you so much for sharing your knowledge with me. I hope we both feel better and better!!

    Best always~
    Cathy

  • tladler22
    2 years ago

    Before I ever found out I had ms I had my gallbladder and appendix removed. Well it caused chronic diarrhea I couldn’t eat anything without rushing to the bathroom. Salad, chicken, God forbid anything spicy or greasy. Then I tried to get rid of sugar. No added sugar for breakfast just something with protein for a week, then the next week no sugar till lunch. I started taking short walks because you still have to be close to a bathroom. Each week I got a little bit better. I would recommend reading this book big girls do it running by jasinda wilder it’s so easy to follow and it helps remind you of the positive things that can come from each day. I found that medications that stopped me from pooping made any pain so much worse. But lots of fiber, meals with protein, no added sugar has helped me immensely. I hope it will get better for you and you don’t have to go out of state to see a doctor who will help you.

  • Cathy Chester moderator author
    2 years ago

    tladler22~

    OMG thanks so much for sharing your story! You really came a long way with all of this. Thank you for your recommendations. Is there a particular diet you follow or is it simply eliminating sugar and adding in fiber and protein?

    I hope you feel better and better and better! I deeply appreciate your kind words and your suggestion for a lovely book about thinking positive. How wonderful.

    Best to you always~
    Cathy
    PS So you’re also saying that meds like Imodium made you feel worse? Curious because I’m taking that and it helps 50/50. The drug I’m on, Xifaxin, is causing more and more, um…..diarrhea. Thank you.

  • suzmears
    2 years ago

    I’ve had MS for 25 years but just recently started having stomach problems. I had chronic diarrhea for 3 months before they finally diagnosed me with Collagenous Colitis, this type of Colitis is rare but happens mainly to women in their 50’s and also to people with auto immune disease. I am on medication now for it and it seems to be some better but like MS it will never go away and, it will come and go like MS symptoms/exacerbations………you never know what your going to wake up to!

  • ASteeltownGirl
    2 years ago

    Hi Cathy,

    I have had some good results with a Naturopathic doctor. He found that I had leaky gut and we cut out a bunch of foods including gluten, dairy and eggs that exacerbated my gut issues and were increasing inflammation in my body. He also started me on probiotics and supplements to support the nutrition I was losing.

  • Cathy Chester moderator author
    2 years ago

    This is probably a dumb question, @ASteeltownGirl but did insurance pay for that or did you have to pay out-of-pocket? I was trying to decide about going to one.

    I’m so glad this worked for you. Thanks for sharing your story and being part of our community. It is greatly appreciated.

    Best always~
    Cathy

  • shsanford
    2 years ago

    Cathy, you sound like me! I alternate between loose bowels and diarrhea. Sometimes I don’t even know I’ve gone. Gee, those Depends are attractive. I’ve been to the gastrologist more times than I can remember. He says I have IBS and acid reflux. I can’t eat anything spicy, which I used to love. I’ve had a colonoscopy, endoscopy, MRI, CAT Scan, you name it. I take Imodium, sometimes Pepto Bismol or Pamine. I really never thought this had anything to do with my MS! Sometimes I get tightness in my chest, and when I wake up in the morning it sometimes feels like birds are flying around in my stomach. Maybe all gastrologists are the same; he has no other answers. Just thought I’d make you feel like you’re not alone!

  • dawggrad
    2 years ago

    Hi Cathy,

    When I first read your article the other day, the idea that came to mind was Irritable Bowel System (IBS). IBS symptoms can get as bad as Crohn’s and ulcerative colitis, but will not show up during testing. It’s incredibly painful and miserable. Do you feel like that could be a fit?

  • lgoddard
    2 years ago

    Cathy,

    I sit here having just come home today from hospitalization #3 since January because of stomach issues. My issues are constant nauseau and LOTS of vomiting. This all began January and since then I’ve lost 80lbs as well. It’s overtaken my life and only exacerbated my MS.

    I’ve done a colonoscopy, CT scan, x-rays, and so on; but no one seems to know what’s wrong! After doing my own digging online, I’m fairly certain I have bilary reflux – basically acid reflux but instead of stomach acid coming up into the esophagus (acid reflux) it’s bile coming up into the stomach from the gallbladder. Yuck! It’s caused A LOT of vomiting which has caused gastritis because of 3 months of vomiting and has left my stomach pretty painful, sore, raw, and swollen (per the colonoscopy results).

    I’m just now going to start over on a completely bland diet for the next 2 weeks to try to let my stomach heal from this, but none of the doctors I have seen over 3 months could tell me what was wrong. I found this from my own studying and research of my symptoms.

    All that to say, I definitely feel your pain! It has been utter horror and so painful to be throwing up EVERY day for the past 3 months! No one could tell me why this was happening and I spent many nights hunched over a trash can, praying for relief.

    Don’t give up your search to find out what’s wrong. This is NOT normal and your body needs relief!

    I can’t say I’m past this (as I’m right now feeling nauseous again!) but I do feel some sense of relief that I feel I’ve found the cause after this whole time of vomit, tears, and agony. The recovery will take a while for me, but I feel lucky to finally have an answer (hopefully).

    Good luck in your search for an answer! And keep at it! MS is awful on it’s own, but it’s especially horrible when you have something like GI issues keeping you close to your home bathroom and limiting what you can eat. 🙁

    If you have any questions on more specifics of my symptoms, online search, or what doctors have told me; please feel free to message or contact me. Like I said, I know your pain VERY well and I don’t wish that on anyone, let alone a fellow MS sufferer. 🙁

  • Cathy Chester moderator author
    2 years ago

    lgoddard~

    I am so sorry for what you’ve had to endure and what you’re still going through. What an ordeal and I pray you will find relief soon.

    Doctors don’t seem to be trained to find the cause of symptoms AND tell you how you should use food as medicine. They never mention that last part! So my search continues, on my own, to try and repair my stomach through eliminating gluten, sugar, and soy from my diet, hoping that will help.

    Since I wrote this article I’ve been told by friends about the SIDO and FODMAP diet, both of which I am researching. I also am changing my probiotic to one I hope will prove better than the one I’m currently using.

    Thank you for sharing your story and reaching out to me. It is greatly appreciated. I hope we both find better health and that our MS will decide to go easy on us! We’ve certainly earned that.

    Better health to you and keep us posted on how you are~
    Cathy

  • MomLife
    2 years ago

    I can’t stress the importance of a GOOD probiotic enough! I had stomach issues for almost 6 years before finding the probiotic that has helped me.

  • Cathy Chester moderator author
    2 years ago

    MomLife~

    I’m so happy you found a probiotic that helps you. Would you mind sharing which one that is? Thanks for being a part of our community.

    Many thanks~
    Cathy

  • MamaG
    2 years ago

    Hello,
    I was diagnosed with MS in November of 2006.
    I must say that I find this very interesting. I have had bowl issues for YEARS, and they have only gotten worse.
    I was also diagnosed with colon cancer in October of 2015. since then, I have had four colonoscopies and part of my large intestine removed.
    I mentioned this because, as I said, I’ve had severe bowl problems for years, (before my cancer diagnosis). My gastro doc has performed numerous tests and prescribed meds. The meds aren’t helping. We have ruled out several things that could be causing the problem, but still can’t find what IS.
    I have soiled myself on many occasions. I have had to leave clothes in public trash cans. I am afraid to leave my house.

  • Cathy Chester moderator author
    2 years ago

    Oh MamaG~

    I am so sorry for all that you’re experiencing. I hope you have a good medical team that is working to help you find answers. Keep pressing them to find answers, and if necessary get second and third opinions. Follow your instincts until they find whatever it is that can return you to a better quality of life. You deserve that. Please keep us posted.

    Cathy

  • Lisa
    2 years ago

    Certainly not a 100% fix, but a tremendous help for both myself (MS) and my sister (Lupus) in conjunction with probiotics: cannabis

    Think about it: widely used for chemotherapy side effects, mainly, nausea, diarrhea, appetite …

    Do your research, different strains, different consumption methods, we don’t have to live in pain or be addicts.

    *Bonus* calms my neurogenic bladder almost instantly. Can’t live without cannabis

  • robynz
    2 years ago

    Sorry, bladder, not bladdee, derp!!

  • robynz
    2 years ago

    Hi Lisa,

    I’ve tried cannabis for my MS and my bladdee became significantly worse. I found that I had zero control of my bladder. I take meds for the spasms and they help, but I still have to be aware.

    Also, my balance and coordination was terrible with cannabis. It was pretty humorous, but probably not the best solution.

  • Cathy Chester moderator author
    2 years ago

    Another great reason to use medical marijuana, you are so right Lisa. In my state, for now, it’s legal. I am so glad it works for you and your sister.

  • brcampos
    2 years ago

    I started a gluten free diet almost two years ago, and while it has limited some restaurants and choices, it has made my stomach issues almost completely disappear. I’ve had issues since I was a little girl, and was diagnosed with MS when I was 21. I’ve read about some correlation between Celiac Disease and MS, so I completely agree that the stomach and the brain can affect one another. Hope you feel better soon.

  • Cathy Chester moderator author
    2 years ago

    I have heard from so many people that they follow a gluten free diet, brcampos. I am happy it works for you and I certainly will have to try that route.

  • sara
    2 years ago

    I was having alott of the same stomach issues and had even been diagnosed with IBS (Irritable Bowel Syndrome). Then one day on the advicee of ny PCP I started taking Culturelle Lactobacillus everyday to combat the side affects of frequent antibiotic use.
    I noticed that I no longer had stomach isuues, no IBS, no longer Lactose Intolerant, no bouts of constipation or diarhrea either. In fact I had the digestive system of some unknown person and I wasn’t giving it back!!! Is this what normal is??? As long as I continue to take Lactobacillus everyday I continue ti have no issues. YEAH!!!

  • Cathy Chester moderator author
    2 years ago

    I’m so happy to hear that, Sara! That is remarkable!!!

    I am also taking Culturelle. I wish I could say it’s working the way it did for you. So I’ll keep on exploring other probiotics. In the meantime, thanks for sharing your story. I love happy endings!!

  • poetgirrl
    2 years ago

    I’ve had something similar, which has alternated between diarrhea and constipation, my symptoms have included a lot of gas and the extra unpleasant symptom of fecal leakage. Like you, I didn’t get much help from my gastro or neurology docs. On my own, I started taking a daily probiotic, Renew Life’s Ultimate Flora for people over 50 and that has given me quite a bit of relief (so far).

  • Cathy Chester moderator author
    2 years ago

    That’s great news, poetgirrl! I hope it continues to help you!
    Cathy

  • Christina Hegarty PT, DPT moderator
    2 years ago

    I’m so glad you are feeling better, poetgirrl! Thank you so much for sharing with us. We are glad you’re a part of our community!
    Best,
    Christina, MultipleSclerosis.net Team

  • kodylu
    2 years ago

    My issue was gall bladder. Big stone, had it taken out (the gall bladder and stone) not really much help. Naseaus all the time.

  • Cathy Chester moderator author
    2 years ago

    I am sending you healing thoughts and prayers. I hope you begin to feel better.

    I also had gallstones and kidney stones at the same time. Worst than childbirth.

    Best to you always~
    Cathy

  • Christina Hegarty PT, DPT moderator
    2 years ago

    Thinking of you, kodylu! Thank you for your post.
    Best wishes,
    Christina, MultipleSclerosis.net Team

  • llamalee57
    2 years ago

    I’ve been having severe stomach pain off and on for several months. The meds didn’t work so I had an ultrasound yesterdAy and am having a scope next week. I’ve never had problems like this before.

  • tmilko
    2 years ago

    I have had many tests, lost alot of weight, saw specialists, tried many different medications and then finally found the one med that worked for me! 🙂 The name of it is Lomotil 2.5 mg. I have not had any problems since and have gained my weight (maybe too much) back. You may ask your Dr about it. Hope you all find comfort soon!

  • Christina Hegarty PT, DPT moderator
    2 years ago

    Thank you for sharing with us! I hope you are able to find relief soon, llamalee57. Please keep us updated with how things go! We are here for you anytime for anything.
    Take care,
    Christina, MultipleSclerosis.net Team

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