IBS-like symptoms near -constant for about 3 months

[SunnyK]

Forgive me if I'm missing other related threads that address this issue; I'm in a bad crash and trying to write this before heading to bed--have a follow-up with my gastroenterologist tomorrow and don't want to be completely inarticulate. I've had GI issues well before I developed ME (assuming my ME onset was in 1994, as I'm guessing, and not in 1976, when I became very ill with a virus that 9 months later caused joint issues and led to a JRA Dx). High doses of adult aspirin and NSAIDs in an 8-10 yr old is not a good idea, and by age 11 or 12 I had stomach ulcers (I know this because I remember the pain and now understand it was ulcer pain). Finally Dxed when I needed emergency surgery for a perforated pyloric ulcer at age 14. Surgery resulted in gastroparesis--mostly mild, but VERY slow gut motility. I end up in the ED with bowel impaction if I don't take Miralax twice daily.
All this to say that gut issues, including IBS, are familiar to me. But not IBS-type symptoms (abdominal pain and cramping, bloating, fullness, alternating constipation and diarrhea) for 3 months with no break is not usual. I've pushed for testing (in part to rule out serious things--my mom had lots of difuse GI symptoms for at least 6-8 months before she was finally diagnosed with end-stage pancreatic cancer): have had CT abdom scan w/contrast (normal other than fluid in the colon), EGD/colonoscopy (normal except for benign gastric and bowel polyps and one tubulovillous adenoma in the colon), an MRI of abdom w/contrast specifically to look at the pancreas (kind of failed, because it turns out surgical clips from ruptured appendix repair when I was 21 created magnetic interference blocking view of the pancreatic head).
I see my GI doc tomorrow and am guessing she will say we've tested for everything, nothing she can do except try other IBS meds. I'm on the fence about just going that route and possibly risking missing something serious (since I've in this year alone had dysplasia in colon, tongue, and precancerous skin spots), or skipping more testing (which has been exhausting and crash-aggravating) and trying the meds.
I guess my overall question: anyone else here have IBS without relief for this long?

 

[Trish]

I don't have anything useful to add medically, just to wish you well and hope the doctor can find a useful way forward for you.

My IBS symptoms seem to be directly related to my diet, so once you have, hopefully, had more serious problems ruled out, a dietician may be able to help.

 

[Kitty]

I guess my overall question: anyone else here have IBS without relief for this long?

I have, only mine was four years!

Long story short, I abruptly lost the ability to digest potato starch. I went through various exclusion diets, but I didn't think of potato intolerance because I'd never heard of it. As soon as I twigged (thanks to a horrible cold virus and a multipack of crisps/chips being the only thing I could face eating for a couple of days), I excluded potatoes and the problem vanished without trace. I'm not intolerant of nightshades generally—I'd read about this being a "thing" online, but none of the other edible plants in the group gives me any problems.

Obviously I don't know whether it's relevant to you, but there are some slightly weird food intolerances. I hope you get some answers from your appointment, anyway.

 

[MeSci]

I have, only mine was four years!

Long story short, I abruptly lost the ability to digest potato starch. I went through various exclusion diets, but I didn't think of potato intolerance because I'd never heard of it. As soon as I twigged (thanks to a horrible cold virus and a multipack of crisps/chips being the only thing I could face eating for a couple of days), I excluded potatoes and the problem vanished without trace. I'm not intolerant of nightshades generally—I'd read about this being a "thing" online, but none of the other edible plants in the group gives me any problems.

I don't know if what I have is relevant, but I have had IBS for decades (since before obvious M.E.), and recently I have had diarrhoea since late May, and have rung my GP to book a phone appointment in the hope of getting an antiviral or other suitable treatment, especially because it's causing loss of sleep.

I'm a bit worried about colon cancer, which my father and aunt had, and as far as I know they had successful treatment. I'm 70.

But reading @Kitty's post I'm going to try swapping potatoes (as chips every other day) for sweet potatoes.

My ME began in 1995 as far as I can make out, although there were a few signs prior to then.

 

[SunnyK]

I don't have anything useful to add medically, just to wish you well and hope the doctor can find a useful way forward for you.

My IBS symptoms seem to be directly related to my diet, so once you have, hopefully, had more serious problems ruled out, a dietician may be able to help.

Thanks so much to all of you about the dietary recommendations. I've actually been seeing a dietitian since 2002 (after a relapse of an eating disorder), and since 2018 have been seeing a truly excellent one, who has been working hard with me to figure out what I can get in me just to keep my weight from falling. I did try a bunch of elimination diets over the years (nightshades first, because of my JRA, but later an allergy-detecting elmination diet, then a FODMAP elimination diet, and whenever I prep for a colonoscopy or have bad IBS, I am eating almost nothing other clear liquids for several days prior). My diet is quite limited already because of gastroparesis, and what used to be intermittent IBS--no "ethnic" foods other than Italian, only certain (cooked) vegetables and fruits, limited range of spices, etc. The only thing I'd found that made a difference with IBS was certain artificial sweeteners (like sorbitol), so I of course avoid those.

I have noticed some correlation between worse IBS symptoms and an ME crash, which is why I thought I'd ask about that here.

 

[SunnyK]

I have, only mine was four years!

Long story short, I abruptly lost the ability to digest potato starch. I went through various exclusion diets, but I didn't think of potato intolerance because I'd never heard of it. As soon as I twigged (thanks to a horrible cold virus and a multipack of crisps/chips being the only thing I could face eating for a couple of days), I excluded potatoes and the problem vanished without trace. I'm not intolerant of nightshades generally—I'd read about this being a "thing" online, but none of the other edible plants in the group gives me any problems.

Obviously I don't know whether it's relevant to you, but there are some slightly weird food intolerances. I hope you get some answers from your appointment, anyway.

So glad that you found what was the trigger! I almost never eat potatoes, just sweet potatoes. Same with other nightshades.

 

[SunnyK]

I don't know if what I have is relevant, but I have had IBS for decades (since before obvious M.E.), and recently I have had diarrhoea since late May, and have rung my GP to book a phone appointment in the hope of getting an antiviral or other suitable treatment, especially because it's causing loss of sleep.

I'm a bit worried about colon cancer, which my father and aunt had, and as far as I know they had successful treatment. I'm 70.

But reading @Kitty's post I'm going to try swapping potatoes (as chips every other day) for sweet potatoes.

My ME began in 1995 as far as I can make out, although there were a few signs prior to then.

I hope your GP can get you help. I know well about that awful loss of sleep. I hope your GP takes the Hx of colon cancer seriously and orders a colonoscopy, if you haven't had one recently. I don't have a family history of that but am glad that my recent one caught something that puts me at high risk for malignancy.

Mostly just hoping you feel better!

 

[Kitty]

But reading @Kitty's post I'm going to try swapping potatoes (as chips every other day) for sweet potatoes.

You'd also have to cut out every source of potato starch in prepared food if you eat it—it's in lots of stuff because it's a cheap filler and sweetener. I knew inside three days I'd probably found my bête noir, and I was certain within six. If you can't digest something there's no need for sustained dietary experimentation, the results are pretty rapid!

I hope it is something like that, because it'll save you all the cancer investigations (not to speak of the worry). I'm very grateful they took my symptoms seriously and I honestly can't say I found the tests particularly difficult, but many people do seem to struggle with lower endoscopies and suchlike.

@SunnyK, I hope your appointment goes well and you manage to find some answers. It can take time, especially if it is directly ME-related—all you can do in that case is hope for a phase where you feel a bit better.

 

[MeSci]

I hope your GP can get you help. I know well about that awful loss of sleep. I hope your GP takes the Hx of colon cancer seriously and orders a colonoscopy, if you haven't had one recently. I don't have a family history of that but am glad that my recent one caught something that puts me at high risk for malignancy.

Mostly just hoping you feel better!

Thank you - hope you improve too.

The idea of a colonoscopy rather terrifies me!

I've just had a proper night's sleep for the first time in ages except when I take strongish sleeping medication promethazine. I wasn't woken by the need to pass large amounts of gas as I have been recently.

I had (potato) chips at dinner yesterday, but left out the potato crisps that I usually had at bedtime. I'm going to continue to avoid these for a while at least, and see what happens. They seem pretty natural ingredient-wise, but the ingredients include tomato powder, jalapeno pepper, paprika extract and bell pepper.

 

[perchance dreamer]

My sister was recently diagnosed with with collagenous colitis form of inflammatory bowel disease. IBD is different from IBS although they share some of the same symptoms. She has made modifications to her diet that are helping her symptoms and will talk to her doctor about the test results soon. I know IBS and IBD are just godawful, but I was relieved that she's gotten some relief from dietary changes.

 

[Peter T]

You have my sympathy.

I had a brief episode of IBS like symptoms following an episode of salmonella poisoning before my ME onset, but then the symptoms re emerged with a vengeance associated with the onset of my ME. For many years I did not establish a clear pattern, though they did vary with the severity of my ME. It was only once I had established I had food intolerances and understood the concept of PEM, that any pattern became clear.

Now I am fairly confident that the symptoms only emerge when I am in PEM or I eat the wrong things, however when my ME was severe for a number of years, I believe I was in more or less continuous PEM so had chronic IBS type symptoms over a number of years. Currently I have more help with daily living activities and now vary between moderate and severe so I can to an extent avoid PEM and have a better diet, so the IBS symptoms only appear when something like an unavoidable hospital appointment triggers PEM or I overdo sugar in my diet. Usually I can avoid the for me specific problem causing foods such as gluten or caffeine, and sugar in moderation is OK, however I have a very sweet tooth. This pattern overlaps with my migraines and often the two are associated.

Though I am now reasonably confident I am experiencing IBS, as already pointed above there is an overlap with the symptoms of IBD and with other conditions.

I do hope you are able to identify your condition and, if relevant, any triggering food stuffs. I started an exclusion diet in discussion with a nutritionalist who obviously worked independent of the NHS, and only later saw a dietician. In retrospect a dietician might be more objective/scientifically based support for any exclusion diet and more likely to consider other relevant health conditions. I was lucky in that at that time there was a community dietician who worked in conjunction with my GP.

 

[lunarainbows]

She has made modifications to her diet that are helping her symptoms

Do you know which modifications to her diet have helped? I’ve been diagnosed with microscopic colitis, and from what I’ve read collagenous colitis is a type of microscopic colitis. I’ve only been given steroids and no other info about what foods/diet could help?

To answer the opening question @SunnyK yes I’ve had IBS symptoms for 3 months with no pause. But that is quite normal for me. Because it’s not normal for you.. it sounds like there’s something else going on and maybe tests would be worth doing (if there is another test they recommend)? I wasn’t sure from your post, what other tests you were thinking of doing. They do say if you have had a persistent change in bowel habits it’s important to get it checked out. Yes it could be ME or could be food intolerances etc but it could also be something else, it’s better not to guess before you know.

 

[SunnyK]

Thank you - hope you improve too.

The idea of a colonoscopy rather terrifies me!

I've just had a proper night's sleep for the first time in ages except when I take strongish sleeping medication promethazine. I wasn't woken by the need to pass large amounts of gas as I have been recently.

I had (potato) chips at dinner yesterday, but left out the potato crisps that I usually had at bedtime. I'm going to continue to avoid these for a while at least, and see what happens. They seem pretty natural ingredient-wise, but the ingredients include tomato powder, jalapeno pepper, paprika extract and bell pepper.

I'm glad you had a good night's sleep, and I hope that the relatively small change in diet helps. I find that so many of these elimination diets aren't as scientifically sound as they're made out to be because there are far too many variables we may not know about re: the gut, and if you suddenly cut out most of what you normally eat, even introducing one thing at a time may cause false positives. I say that because, in my experience (having had anorexia and also working with folks with eating disorders) people who have been restricting their food intake hugely not generally as a way of testing for food intolerance or allergy still have all kinds of gut upset when they reintroduce even something as innocuous as a small bowl of cream of rice, and it's just because the gut got used to a lower food intake that anything can at least temporarily cause an unhappy GI tract. (I realize many folks with anorexia have gone longer w/o proper nutrition than someone on an elimination diet, but I've had GI docs recommend I stay on an elimination diet--the trendiest one right now being FODMAP--nearly indefinitely rather than do a two-week trial and then start reintroducing foods.)

Sorry for that rant. I may now sound like I'm contradicting what I just said, but for me at least, any sort of pepper (with the exception of small amts of black pepper seasoning) puts my gut into WWIII mode. I can't even eat something that has been near enough to a bell pepper to have gotten a tad of its oil on it. So perhaps the potato crisps bother you less due to the potato than to the pepper? But if you tolerate peppers generally, then ignore that idea.

As for the colonoscopies, I am not sure how they're done in the UK. Here, my issue with them is that, because of everyone's fear of it, they started about 20 years ago knocking people out entirely for them, as if they were undergoing major surgery. So I come out of the procedure dealing with more extreme fatigue. When I got them done in the early 1990s, they gave mild sedation--one was awake, but just relaxed enough that the colon didn't go into spasms. (I know this because in one instance a small-town doctor doing the procedure on me was the one trying to get an IV into my worse-than-terrible veins. After many attempts of failing and causing me much pain, he decided to do the procedure without sedation, and that was nearly as painful as when I had a perforated stomach ulcer. But I've heard of people doing them without sedation and being just fine, so it could just be my gut and old surgical adhesions.) All of which to say, I don't mind the scopes at all if I can get the right amount of sedation. My husband and friends say the worst part is the prep, but if you've had many periods of not being able to eat much due to gut issues, have had diarrhea (sorry for the dumb American spelling ) etc., you won't mind that either.

 

[SunnyK]

Do you know which modifications to her diet have helped? I’ve been diagnosed with microscopic colitis, and from what I’ve read collagenous colitis is a type of microscopic colitis. I’ve only been given steroids and no other info about what foods/diet could help?

To answer the opening question @SunnyK yes I’ve had IBS symptoms for 3 months with no pause. But that is quite normal for me. Because it’s not normal for you.. it sounds like there’s something else going on and maybe tests would be worth doing (if there is another test they recommend)? I wasn’t sure from your post, what other tests you were thinking of doing. They do say if you have had a persistent change in bowel habits it’s important to get it checked out. Yes it could be ME or could be food intolerances etc but it could also be something else, it’s better not to guess before you know.

Luna, did your IBS symptoms coincide with the onset of ME, or a worsening of other ME symptoms? Oh wait--just reread your message and saw that you've been Dxed with microscopic colitis--I'm so sorry. So maybe not at all related to your ME. I've had IBS issues since age 14 (now 55) after gastric surgery, but every since the delightful development of OTC Miralax, which I take twice daily, I've been pretty find as long as I avoid foods I know to be problematic. So to have this for so long without pause is unusual. Thankfully, all the testing I've had (and since I live in the US, where healthcare is generally a disaster but very good if you are lucky enough to have a job or a spouse with a job that provides good insurance, as mine does, I've easily gotten all those tests) has shown nothing really worrisome, but also no explanations yet. I do know, to answer Perchance Dreamer (love your name--my husband is always quoting that passage of Hamlet), that I don't have IBD, thankfully. So sorry your sister deals with that. My heart goes out to anyone with IBD, ulcerative colitis, Crohn's...

 

[SunnyK]

You have my sympathy.

I had a brief episode of IBS like symptoms following an episode of salmonella poisoning before my ME onset, but then the symptoms re emerged with a vengeance associated with the onset of my ME. For many years I did not establish a clear pattern, though they did vary with the severity of my ME. It was only once I had established I had food intolerances and understood the concept of PEM, that any pattern became clear.

Now I am fairly confident that the symptoms only emerge when I am in PEM or I eat the wrong things, however when my ME was severe for a number of years, I believe I was in more or less continuous PEM so had chronic IBS type symptoms over a number of years. Currently I have more help with daily living activities and now vary between moderate and severe so I can to an extent avoid PEM and have a better diet, so the IBS symptoms only appear when something like an unavoidable hospital appointment triggers PEM or I overdo sugar in my diet. Usually I can avoid the for me specific problem causing foods such as gluten or caffeine, and sugar in moderation is OK, however I have a very sweet tooth. This pattern overlaps with my migraines and often the two are associated.

Though I am now reasonably confident I am experiencing IBS, as already pointed above there is an overlap with the symptoms of IBD and with other conditions.

I do hope you are able to identify your condition and, if relevant, any triggering food stuffs. I started an exclusion diet in discussion with a nutritionalist who obviously worked independent of the NHS, and only later saw a dietician. In retrospect a dietician might be more objective/scientifically based support for any exclusion diet and more likely to consider other relevant health conditions. I was lucky in that at that time there was a community dietician who worked in conjunction with my GP.

Thank you, Peter. This is very helpful. I feel like what you describe as your experience is very similar to mine. I, too, have things I need to avoid in my diet and have since before I got ME (I think)--I also have a sweet tooth, and often I end up eating more sugar when I am having gut issues because all I can tolerate are things like Jello or Popsicles (and I need to eat those things, which are NOT my preferred methods of getting my sugar fix!) to keep my weight from dropping. What really resonated with me was that your symptoms do seem worse when you are in PEM. I believe I am still in a constant or near-constant state of PEM. Before my actual ME Dx last December, I knew a lot of activity made me feel worse, but I sort of ignored the fact, because I thought my fatigue was due to my (j)RA, and exercise is deemed important for that (plus all doctors, at least on this side of the pond, believe at least 150 mn of moderate exercise as a minimum per week is necessary for anyone and everyone). So I kept pushing. Since my diagnosis, I realize the truth, but I did enough damage for about 30 years that what amount of activity I could tolerate even a year ago is unimaginable now, and learning effective pacing feels like a moving target that I'm hitting with less accuracy than I could hit the mark playing darts as a kid. There are days when I feel able to push myself more, but I'm learning that "feeling able to push myself more" seems not to be about how my body is really feeling but instead a mind-over-matter battle of wills sort of thing.

I'm curious: what is the distinction between a "nutritionalist" and a "dietician"? Here, nutritionist and dietitian are pretty much interchangeable--all need to go through a certification process after training--but most of them practice in ways that sound perhaps similar to your nutritionalist. What I mean is that there is a sense that weight loss is almost always a good thing, with well-known dietitians promoting 1200-calories-per-day diets as key to better health, or even more a sense that there are foods everyone should avoid and foods people should all eat more of, even though research is sketchy. The big thing now is an "anti-inflammatory diet"--even Harvard and the NIH here in the States talk about this as if it's a given good thing, but a closer look shows that the evidence of benefit is not clearly known. (https://www.scientificamerican.com/article/the-messy-facts-about-diet-and-inflammation/). For me personally, as someone with a history of anorexia and thus needing to avoid cutting out foods unless absolutely necessary (because doing so can trigger more obsessive thinking about food and weight), I find I trust only dietitians who look with skepticism at any claim that a certain food is universally good or bad. But I'm not telling you anything you don't already know there. That's one reason I so appreciate this site--it's the only I've found, for ANY of my health conditions, in which people think rationally and critically. (Another reason being that SO many people have pictures of cats as their profile photo. That never ceases to surprise me.)

I wish you all the best and hope you get good, scientifically sound help with your symptoms.

 

[SunnyK]

Thanks, everyone. My GI was very helpful yesterday. It seems that if one isn't experiencing symptoms as coinciding with bowel habit changes (either diarrhea or constipation), those symptoms are not likely IBS-caused. I am pretty sure that, after some medication reactions in July, my habits are back to my normal. So my GI thinks this now may be due to worsening of my gastroparesis. I'm to have another gastric emptying study (haven't had one in nearly 20 years), and if it shows significant delays in gastric motility, there may be some procedures to try.

 

[Peter T]

@SunnyK, yes it gets very difficult to work out what is happening when more than one thing is happening at the same time, what is PEM, what is issues relating to specific food stuffs and what is other conditions, especially as each factor can have a knock on effect on the other.

The nutritionalist I saw, although qualified, was an alternative practitioner not recognised by the NHS. I did not examine the research base, but he had used the York diet to ‘cure’ his own cancer some years before and was definitely evangelical and I suspect going well beyond what the evidence justified. He saw diet and vitamins/supplements as active treatments rather than management or amelioration strategies. In contrast Dietician undertake degrees and their profession qualification is recognised by the NHS. Their approach is much more evidence based in the sense we would understand it here. A dietician would not seek to cure ME through nutrition through they have an important role in helping to manage any dietary impacts of our condition.

 

[SunnyK]

@SunnyK, yes it gets very difficult to work out what is happening when more than one thing is happening at the same time, what is PEM, what is issues relating to specific food stuffs and what is other conditions, especially as each factor can have a knock on effect on the other.

The nutritionalist I saw, although qualified, was an alternative practitioner not recognised by the NHS. I did not examine the research base, but he had used the York diet to ‘cure’ his own cancer some years before and was definitely evangelical and I suspect going well beyond what the evidence justified. He saw diet and vitamins/supplements as active treatments rather than management or amelioration strategies. In contrast Dietician undertake degrees and their profession qualification is recognised by the NHS. Their approach is much more evidence based in the sense we would understand it here. A dietician would not seek to cure ME through nutrition through they have an important role in helping to manage any dietary impacts of our condition.

 

[SunnyK]

Thanks for the clarification, Peter. I was guessing a nutritionalist in the UK is something like a "functional medicine physician" here -- often going well outside the bounds of what scientific research has shown to be viable treatment. I've noticed that many people, especially where I live, are turning to functional medicine doctors for their ME, and sometimes the things that they throw out in conversation as being accepted parts of their illness are " conditions" then make me raise my eyebrows, to say the least.

And you are right that it is complicated to tease out what gut stuff is related to me and what not. Sometimes it is difficult just to tease out what particular food or stressor might be the cause of gut issues.

 

[perchance dreamer]

Do you know which modifications to her diet have helped? I’ve been diagnosed with microscopic colitis, and from what I’ve read collagenous colitis is a type of microscopic colitis. I’ve only been given steroids and no other info about what foods/diet could help?

@lunarainbows, here are some of the things my sister thinks are helping. She's eating low fiber and is pureeing most vegetables in the blender. For protein, she's sometimes eating chicken and fish. Daily she's drinking juiced pineapple and celery from a Vitamix and also drinking turmeric and ginger tea. She's drinking an ounce daily of aloe vera juice (a brand that has the juice with nothing else added) and taking a probiotic.

Next month she will see a functional doctor to hear her perspective about how to treat this disease in addition to the advice of a GI doctor, and she'll see a dietician, too. The dietician is a good idea since my sister has lost so much weight. She needs to at least maintain weight with the dietary changes.

She had been healthy and strong all her life until this past January, when she got horribly sick with something that was undiagnosed. Her insurance would not let her have an RSV test, and she tested negative for flu and covid. However, she took only 1 covid test and now wishes she had repeated it since she had the symptoms. It's possible she has long covid, but we'll never know for sure.