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Loose bowel movements
My husband is dealing with loss of appetite and loose motions for over a month now. This leads to overall decline. Is anyone else going through this.
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16 Replies
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my partner has experienced this for quite some time. Nothing seems to resolve the loose bowels.
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Thanks George. How long you are having this issue.
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At least a year now. He is eating less and less every day and still very lose and incontinent
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I was having the issue when 1st tried using Riluzole…plus EXCESSIVE fatigue…so I had to stop Riluzole after 4 weeks. Bowel issue persisted, so I started reading labels & tracking foods eaten for connections. Turned up soy, advocado, fried food, all made list on worse days… but my Primary Care did a blood & urine test that showed I had ZERO good gut bacteria. So, I’ve been on a specific probiotic she recommended, (4x daily) and I am out of the loose bowel category most of the time (eating out still creates havoc, but I’m prepared).
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ALS does not traditionally affect the digestive system or bowels. Perhaps you should look toward certain foods or medications as the cause.
Probiotics may be of help. Or a daily serving of Greek Yogurt.
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Greek yogurt mixed with Manuka Honey ( reduce inflation) and tea spoon of olive oil,
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My husband had issue of loss of taste and appetite as well. VSL#3 probiotic has made all the difference. Our Costco has it approximately a dollar a pill taken once a day has made all the difference!!!
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Dagmar, did you mean to write “ALS does NOT traditionally affect the digestive system or bowels”?
Thank you as always for your helpful advice.
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oops, oops, oops! Yes, Louis, I meant NOT… apologies everyone for that typo (and an important one too!) ……..I’ve edited my original comment to prevent future misunderstandings 😉 Thank you for cathing that one Louis 😉
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This is interesting. For years I’ve been seeing doctors because of digestive issues and pains in my abdomen and 2 colonoscopies, x-rays, cat scans, fod map diets, food allergies, gluten and all kinds of things over the years has ruled out crohn’s, diverticulitis, colitis and everything else. This is all over a decade! I had an episode of severe muscle cramping and pain while I was at the ALS clinic during a pre-fALS study visit a few years ago so they started monitoring some of the muscles in that area. After a few years, and finding out that other people (and family members) with the exact same mutation also have had this symptom, my doctor suspects that is is likely linked to ALS in my case. Keep in mind that every case and person is different, I just found this interesting.
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Whew! —I was feeling like an anomaly of some sort with the digestive/bowel issue…thank you for that final comment; I am thinking that this is another example of ‘new learning’ about ALS—especially as it becoming more studied. Seems it is more complex & heterogeneous than formerly understood. Some day, it might even rise from the rare disease category to more of a ‘spectrum disorder’ category (meaning that sub-groups exist under the large umbrella name…beyond just the familial & sporadic designations). Hope opens doors to anticipating possibilities—thanks to all forum moderators, writers and participants!
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I absolutely agree!! I think as we learn more and more about the different causes and triggers of ALS “we” will know how to classify and treat cases. We already know that each genetically linked case can not be treated the same way. The Tofersen treatment for the SOD1 mutation will not fix what is wrong in other mutations that lead to ALS. The good news is that the technology can be used!
Amanda
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I happen to have a decent amount of experience with this issue, but my solution(s) might not work for you. As you will read below, my situation is rather different than yours, so please keep that in mind.
Although I have motor neuron disease, I also have Crohn’s. Thanks to my most recent bowel resection (8/2020), my Crohn’s is currently in remission. However, beginning in Spring 2021, my diarrhea got extremely bad. On my doctor’s recommendation, I started taking psyllium husks. I mix them with water and take them a few times a day. They are soluble fiber, so they end up absorbing water and expanding. This ends up slowing down transit time (for me), and I now have solid BMs on a regular schedule.
My gastroenterologist recommended that I consider also using Imodium, so that I didn’t have to take as much psyllium husks each day. (I take a lot.)
Diarrhea can be caused by gut muscles contracting too quickly, causing food to move through you too quickly. Imodium apparently works by slowing down the muscle contractions in your gut, so that your muscles don’t push food through your intestines so quickly. (Link)
I’m fortunate that I can still swallow things fairly well, so the psyllium husks don’t bother me. And I’m reluctant to try the Imodium because I just don’t know the impact it might have on my gut muscles and how it might interact with my MND. But I might try it when I get to the point that I can’t swallow the fiber.
Anyway, I thought I’d share my approach to this issue, and let you know that you are not alone.
Howard
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Not loss of appetite but has anyone else been having an issue with keeping food down?
a lot of times now after eating if I bend over I come close to losing it. Sometimes just turning. Even very small meals.
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I had a speech-language pathologist give me direction on this—she explained that the muscles that help swallowing just past the back of the throat are sometimes weaker & cause food not by to ‘make it down’ efficiently. Her suggestions: chew WELL—like 30x before swallow; alternate type of food during a meal (like something hard/Something soft, something like cooked veggie, something crunchy) AND, keep chin in neutral ‘down’ position (not head tipped back to swallow). Also helpful to take a sip of liquid AFTER a food is completely swallowed—-NOT at same time chewing. (Risk of food particles going down with liquid creating problem). FINALLY, resting in a semi recline or upright position for 20-30 min following eating WILL HELP the slow travel process of throat/esophagus muscles complete their work without bends & twist interference. I have been practicing these things the past 3 months—it has made a difference. Not easy, but safe & I can get proper nutrition still (3 meals & 2-3 snacks daily)…like everything with ALS, worth doing if it’s more pleasant for self & caregiver, family, friends.
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These are great tips Kathleen – – good for all of us who have difficulty swallowing.
I recently came across this helpful video on practicing better swallowing techniques. Hope it will be of help to others in this forum:
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thank you
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My husband has a PEG tube and occasionally issues with diarrhea. He takes nothing by mouth any longer, tube fed mainly with formula. I have found that that a dose or two of Imodium slows motility a bit which is helpful. Also, giving him things to increase fiber allows absorption of water and of course nutrients too. For that I give him Metamucil and a mixture of applesauce and flaxseed meal (ground flaxseed). I have to water it down to administer through the tube, I’ve had good success with this and I also make sure he gets probiotics daily. Sadly, he also suffers from gastroparesis and bile reflux.
In the course of doing some research, I found a couple of recent studies that reveal that the vagus nerve in ALS patients can atrophy and be damaged. (I just shared these studies with our neurologist at the clinic we attend.) Interestingly, the vagus nerve affects many organ systems, including the GI tract. More studies are needed, but perhaps there is a correlation.
These studies are published in the Journal of Neuroimaging available in the NIH Library. “Ultrasound Detection of Vagus Nerve Atrophy in Bulbar ALS” and “Autonomic Dysfunction in ALS: Neurophysiological and Neuroserology Study”. I know these sound complicated, but the conclusions are easy to understand. Another, older, but interesting abstract is “Gastrointestinal Dysfunction in ALS”. Best to Google this title.
Just thought I’d share for those who who might be interested. Hope the applesauce/flaxseed mixture will be helpful.
Gail
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