IBS challenges

Posted by Barb @amberpep, Aug 8, 2017

Hi .... I don't think there's a group for this, so I thought I'd try you all. I have been prone to IBS with constipation since my divorce 12 years ago - we were married for 40 years and I felt as though I'd been thrown away. My gastro-intestinal doctor suggested Metamucil, which seemed to work. Between then and now I've had 3 moves, one about 4 hours from where I'd lived for 30 years, a TKR and also a revision, am on several psychotropic medications for cyclothymia, and just feel awful. Well, I'm 73 and have had my teeth removed in order to get dentures .... there's been quite a harang with this and it's been over a year since I've been eating soft and pureed foods .... cream of wheat, soups (pureed), pureed spaghetti, if I do eat a piece of fruit it has to be pureed, but I try not to. It's been a long haul. Well, now I'm packing to move to a low-income apartment closer to my girls, and the IBS has become the diahrrhea form ..... OMG, it's awful. I'm afraid to go out. I don't know what to do anymore. I'm new down here and only have an Internist, but with moving that will have to change. I need the name of a good gastro-enterologist at the hospital I will be using. In the meantime, does anyone have any suggestions for me? I'm forced to use pads right now "just in case" ..... I know this is anxiety and tension, but it's got to stop.
Thanks much,
abby

Interested in more discussions like this? Go to the Digestive Health Support Group.

Profile picture for junita @junita

Hi Teresa,

Thanks for getting in touch. My symptoms currently plaguing me are diarrhoea, stomach cramps and flatulence not to omit weight gain. Here, in India,doctors only suggest you a food list . They do not share any eating plan as such.

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Hello @junita, As you are not familiar with the low fodmap eating plan for treating IBS, I wanted to share this website with you. The foods listed as "Low Fodmap" are the ones that are the best for IBS symptoms. The other, listed as High Fodmap, should be avoided for at least a month. You can then begin to add in some of the High Fodmap foods to see which ones are a trigger for your IBS symptoms. This eating plan is recommended by GI doctors here in the U.S. and it can be quite helpful.
https://www.benefiber.com/fiber-in-your-life/fiber-and-wellness/beginners-guide-to-low-fodmap-diet/?
If you do try it, I would like to hear how you are doing.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @junita, As you are not familiar with the low fodmap eating plan for treating IBS, I wanted to share this website with you. The foods listed as "Low Fodmap" are the ones that are the best for IBS symptoms. The other, listed as High Fodmap, should be avoided for at least a month. You can then begin to add in some of the High Fodmap foods to see which ones are a trigger for your IBS symptoms. This eating plan is recommended by GI doctors here in the U.S. and it can be quite helpful.
https://www.benefiber.com/fiber-in-your-life/fiber-and-wellness/beginners-guide-to-low-fodmap-diet/?
If you do try it, I would like to hear how you are doing.

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Hi@hopeful33250, thanks for sharing the link. have checked it out. The list is very similar to the ones that are prescribed by the docs here in India. However I wan't aware that it is a part of a diet plan for IBS. Thanks again for sharing.Will surely let you know as I progress.

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Profile picture for harmonyln @harmonyln

It would really be helpful for me to hear from others about what they're going through and how they cope with their IBS issues. I've never had this problem and could always pretty much eat what I wanted without any ill effect. Now if I accidentally eat even the smallest amount of gluten or anything with dairy I am sick for 2 to 5 days and I feel totally exhausted the entire time. First starts belching, then painful bloating and cramping and I become constipated. My upper abdomen hurts as if I had been hit with something hard, my gut feels raw inside and often unremitting nausea also sometimes happens. Once the bloating calms back down, out of the blue I experience urgent diarrhea that can come even if I eat even a few bites of "approved" food. (I've been on FODMAP since Feb). My appetite has gone away and I've lost 19 lbs since I started eliminating foods on the list. The diarrhea can last the entire day and by the time it stops my body is weak, i'm very tired and my abdomen feels tender for the next few days. I've become hesitant to eat, although I'm falling woefully short of calories nearly every single day. Food has lost it's appeal to me and feels more trouble than it's worth. My social life has been totally impacted by these problems and I pass up on fun activities that have been a part of my life forever. Going out to a restaurant is mostly a nightmare now. My GI dr prescribed Bentyl and Omeprozole, which didn't help much, and basically sent me on my way telling me that I need to work on reducing my stress levels. I have dealt with major depression and an anxiety disorder for going on 25 years, which is currently well managed with the exception of the anxiety that being this ill can trigger. I'm getting acupuncture twice a week and that does seem to help. The D.O. that is doing this for me also has me on a regime of Digestive Enzymes. He's also given me a recipe for a "gut healing smoothie" that contains several holistic ingredients, including probiotics with acidophilus/bifidus. I'm currently waiting for these things to come in the mail so I can't speak to its effectiveness yet. At this point I'm willing to try just about anything to get my life back. I feel that I am constantly complaining to my friends and family when they ask how things are going, The only thing that I can point to as what brought this all on, although my GI dr wouldn't agree, is that I had two colonoscopies within 6 months (March and August of last year) as a result of numerous polyps, one of which was difficult to fully remove in one session. None were cancerous but all were of the type that will eventually turn into cancer. Because of this she now wants to start doing colonoscopies every 3 years, which I totally dread just it case it triggers my IBS to become worse. If its not related to those procedures and their prep, can and did your IBS just come on suddenly with no warning and nothing particularly prompting it? Do you feel, or have you been told that this illness will be something that you have to live around forever? Have you ever heard of it going into remission and/or going away entirely? I've done a lot of reading on this subject but really need to hear from those of you who understand and can relate to what I am talking about. I feel alone in this and am afraid that this is my new normal. Thank you for reading this and for hopefully sharing a bit about your experience with IBS.

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I have IBS and ulcerative colitis for the rest of my life. I'm on a low residue diet which includes very little fiber so I'm always constipated. I have an excellent GI Doc. Could you get another opinion from another Gastroentologist? Two Colonoscopies in 6 months is crazy. Hope nothing else is wrong. I do have days when my stomach aches are so bad I can barely function. I am in remission though with infusions. Hope you get the right help. Maria.

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I was diagnosed with mesentric panniculitis from a CAT scan. My doctor and my gastro guy do not think it is. They think it is IBS. The only symptom I have is I wake up every morning anytime between 1:00 am and 5:00 am with a mild pain or cramp in the very bottom, right side of my pelvis. I get up and walk around as it feels better. If I have even a little bit of gas pain goes away... within a short time I have a bowel movement and the pain is gone and does not come back until the next morning. Doesn’t appear that anything I eat irritates this. I have had this for over a year and before that something similar but it was sporadic before that. Does anybody else have this! Need some feedback please....

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Profile picture for nancykeenan @nancykeenan

I was diagnosed with mesentric panniculitis from a CAT scan. My doctor and my gastro guy do not think it is. They think it is IBS. The only symptom I have is I wake up every morning anytime between 1:00 am and 5:00 am with a mild pain or cramp in the very bottom, right side of my pelvis. I get up and walk around as it feels better. If I have even a little bit of gas pain goes away... within a short time I have a bowel movement and the pain is gone and does not come back until the next morning. Doesn’t appear that anything I eat irritates this. I have had this for over a year and before that something similar but it was sporadic before that. Does anybody else have this! Need some feedback please....

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Hello @nancykeenan

I appreciate your post. When doctors don't agree on a diagnosis it certainly is frustrating for the patient. As you probably know, mesenteric panniculitis is very difficult to diagnose. Here is some information from Mayo Clinic's website about this disorder, I would recommend that you read it, especially the sections about the symptoms and how it is diagnosed. https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/diagnosis-treatment/drc-20450343

One of the diagnostic tests mentioned is a biopsy of the tissue. Do you know if this has been done?

As you know, on Mayo Connect, we are not medical professionals, just patients like yourself who give and receive support and encouragement. Have you considered getting another opinion at a multidisciplinary health system like Mayo Clinic or a university medical school? These types of medical centers tend to be strong in the area of research and in diagnosing and treating rare disorders. As MP is a rare disorder you might consider making the trip to one of these health centers in order to get state-of-art treatment.

With regard to the possible diagnosis of IBS, many of us with this disorder have followed a Fodmap diet for a month in order to determine if there is gluten/dairy or other food sensitivities that might be causing the symptoms, We have a discussion that topic on Connect. Here is the link https://connect.mayoclinic.org/discussion/fodmap-eating-plan/

If you would like to try this eating plan, I would encourage you to ask your GI doctor to refer you to a registered dietician who can explain this eating plan and help you with the specifics.

I hope you are able to visit a medical center that can help you treat this problem. Will you post again with an update as to how you are doing?

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Profile picture for nancykeenan @nancykeenan

I was diagnosed with mesentric panniculitis from a CAT scan. My doctor and my gastro guy do not think it is. They think it is IBS. The only symptom I have is I wake up every morning anytime between 1:00 am and 5:00 am with a mild pain or cramp in the very bottom, right side of my pelvis. I get up and walk around as it feels better. If I have even a little bit of gas pain goes away... within a short time I have a bowel movement and the pain is gone and does not come back until the next morning. Doesn’t appear that anything I eat irritates this. I have had this for over a year and before that something similar but it was sporadic before that. Does anybody else have this! Need some feedback please....

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Has anyone used both Cymbalta and Gabepentin together for abdominal pain?

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Profile picture for winweb @winweb

Has anyone used both Cymbalta and Gabepentin together for abdominal pain?

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@winweb, I have not used those medications however these links present the role vitamin B1 plays in the gut and it may help you. . Note that magnesium is needed to activate B1 (thiamine). Activated thiamine is needed to activate B6 so you see the B vitamins work better together. Standing in the way of normal thiamine intake are anti thiamine factors that diminish or destroy thiamine. Always consult your health care provider before using any supplement.
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.eonutrition.co.uk/post/when-sibo-ibs-constipation-are-just-unrecognized-thiamine-deficiency
https://www.healthrising.org/blog/2021/06/02/fibromyalgia-chronic-fatigue-syndrome-benefit-high-dose-thiamine/
https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency

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Profile picture for winweb @winweb

Has anyone used both Cymbalta and Gabepentin together for abdominal pain?

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Cymbalta has horrible side effects and trying to get off it is H..
Yet seems to be the only thing that reduces my abdominal pain
I have tried low FODMAP, registered dietician, reducing amines, ENT , autoimmune Dr , neurologist , accupunture , nothing helped ..wish I could find a dr that calls back that sticks with me that cares they all have way too many patients and don’t see to be good on follow up any have an anazing GI in the St. Louis area please share !!!!

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When I was a child, I was constipated. It was hard to pass a poo, the poos were the small hard pebbly kind. As an adult (I'm in my late 60s) my poops tend to form too wide. It's either the first poop of the day, or the first part of the first poop. My drs have always labeled this as constipation - but I go poop every single day so it seems like the wrong diagnosis. I'd poop even if I didn't use Citrucel or Colace, which I do. And you won't be surprised to learn that I've had hemorrhoids and 2 surgeries for fissures.

To make this more complicated, I had the bad luck to get CDiff a few years ago which morphed into IBS Mixed - I've found that drs pretty much leave it up to patients to determine what kind of IBS, but I think I'm mixed, but maybe it's actually D? Anyway, I now eat low FODMAP which is very effective, but means I can't have certain things like prunes or Metamucil. Oh, and most GIs I've seen are glad I'm eating low FODMAP and just don't care if I call my condition IBS-D or IBS-M or even IBS-C. Oh and I had a rare bad reaction to Miralax, so I can't use that.

So I'm just wondering if anybody would recommend I try anything to help with this poo-size issue. I'm thinking about getting ground flax seed, I think that might be my next experiment. If I overdo the stool softeners or counting my fiber intake or Citrucel, then I poo and poo and poo - it almost never becomes watery, but it causes many bad mornings and sometimes can't leave the house until noon. I'm so sick of myself! I'm in my golden years and I just want to enjoy them!

Thanks.

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Profile picture for mikayla68 @mikayla68

When I was a child, I was constipated. It was hard to pass a poo, the poos were the small hard pebbly kind. As an adult (I'm in my late 60s) my poops tend to form too wide. It's either the first poop of the day, or the first part of the first poop. My drs have always labeled this as constipation - but I go poop every single day so it seems like the wrong diagnosis. I'd poop even if I didn't use Citrucel or Colace, which I do. And you won't be surprised to learn that I've had hemorrhoids and 2 surgeries for fissures.

To make this more complicated, I had the bad luck to get CDiff a few years ago which morphed into IBS Mixed - I've found that drs pretty much leave it up to patients to determine what kind of IBS, but I think I'm mixed, but maybe it's actually D? Anyway, I now eat low FODMAP which is very effective, but means I can't have certain things like prunes or Metamucil. Oh, and most GIs I've seen are glad I'm eating low FODMAP and just don't care if I call my condition IBS-D or IBS-M or even IBS-C. Oh and I had a rare bad reaction to Miralax, so I can't use that.

So I'm just wondering if anybody would recommend I try anything to help with this poo-size issue. I'm thinking about getting ground flax seed, I think that might be my next experiment. If I overdo the stool softeners or counting my fiber intake or Citrucel, then I poo and poo and poo - it almost never becomes watery, but it causes many bad mornings and sometimes can't leave the house until noon. I'm so sick of myself! I'm in my golden years and I just want to enjoy them!

Thanks.

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(Also wondering if I start using flax seed, any advice on how to start? How much? Should I start small and work up to a certain amount?)

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