DOES THIS SEEM LIKE IBS?

[nokmax76]

Hi guys. Long-time sufferer of ME here. Have had on-off stomach and lower bowel problems for the last twelve years or so. Nothing major, mostly digestive (bouts of gurgling and flatulence) malabsorption (inability to put on weight) and bouts of constipation which seemed to be caused, as strange as it sounds, directly by the amount of physical stress I put on my stomach muscles. I also have hyperalgesia, and I think this often fools my body into shutting down in various ways even though I'm not actually hurting. So, even a relatively low-key activity like typing on a keyboard for twenty minutes can lead to stomach stiffness.

And I'm sure you can all relate to the fact that I'm a seasonally-affected PWC and all my digestive problems tend to get worse in winter. However, they do seem independent of stress, or at least temporarily increased stress (God knows what the underlying perpetual stress of having CFS is doing to me).

I have had loads of tests and scans, probably all the mainstream ones except the colonoscopy and the only thing they found was H. Pylori bacteria which was quickly treated with antibiotics.

Last two years though, despite the tests, I've been suffering with different symptoms and over the last three months they seem to have become permanent. These are:

Shifting Lower bowel pain - everywhere below the belly button - not bad enough to keep me awake the whole night but bad enough to make it difficult for me to get to sleep at times

Tightness on each side of the abdomen and below centre of ribcage - regardless of physical exertion

Bloating and embarrassingly-loud gurgling after eating

Straining bowel movement - sometimes so hard I think I'm going to rupture something

Constipation - two to three days longer than before

Rocky hard stools

All the above are made slightly better by;

One paracetamol every 4 hours

Bowel movements (despite the straining)

And a lot better by;

Skipping the odd meal - which of course is not a viable long-term solution.

I've shrugged off having the invasive colonoscopy test as all the other tests were negative (including the painful urinary tract one) but I think I will finally get it done. However, as I suspect the test will probably come back negative, I want to know how to move forward. So, given what I've detailed, do you guys think this is IBS?

I think when the dust of inadequate research, misdiagnosis and skepticism finally settles around this illness, I think more than a few of us will be diagnosed with some type of vascular CFS. I've thought for a long time that this is the cause of my most frustrating symptom of cognitive dysfunction and I suspect the gut/brain axis is playing havoc with the blood flow to my digestive system as well. Your thoughts would be appreciated. Thanks for reading.

 

[Foxglove]

As best as I understand it (and I could be missing something), IBS is a diagnosis like "ideopathic chronic fatigue", not a diagnosis like ME/CFS.

That is, it means, "you have GI symtpoms and we can't classify it as Crohn's or something else specific".

I think it comes from a failure to study the GI complications in major diseases like ME, EDS, scleroderma, and so on, and a lack of sufficient diagnostic tools for conditions like MCAS, and lack of familiarity with conditions like SIBO. As well as probably some as-yet-unnamed-and-unstudied conditions thrown into the mix.

I have "IBS", too, "severe IBS" that for whatever reason causes bleeding (which IBS is not supposed to do), but I think it's ME, dysautonomia, EDS, and MCAS in my particular case. So I think that's not a lot different from what you're thinking in your case.

Either that or I really do have Crohns but my excellent adherance to food intolerance diet has stopped it from destroying my cilia or whatever it's meant to visibly do.

This could be different from what your doctor may have said, but I find that if I am having constipation, that I am eating too much fiber. I follow a low-fiber diet to reduce pain, and avoid straining and constipation.

Some people with IBS need more fiber, some need less. Only you can know what makes your symptoms improve.

I find if I want to skip a meal, sometimes it's better to have chicken broth at least.

Taking more vitamins, drinking electrolytes. and going on fludrocortisone has improved my weight. Over time with that and a food intolerance/allergy diet, my stools have improved. I've added back one or two foods.

Colonoscopy is not easy, but the hard part is the prep. If you have a good team who will watch out for pain spots and pick a good anesthetic, the procedure itself is not that difficult.

 

[Rufous McKinney]

Some people with IBS need more fiber, some need less. Only you can know what makes your symptoms improve.

My version of IBS (d) seems different from the versions here....but for me, most foods are cooked. My IBS is quickly triggered by eating raw vegetables and salads for instance.

Bitter greens worsen IBS d in my case so I don't eat those often either. Meanwhile, some people are living on kale.

 

[WinterWren]

If you still have your gallbladder I’d get that checked. It can cause problems before becoming really obvious pain in that area (at least it did with me)

 

[kangaSue]

GI dysfunction is a very complicated area and there are any number of things it can be but one thing your symptoms can fit for is Nutcracker Syndrome.
https://forums.phoenixrising.me/thr...attributed-to-nutcracker-syndrome-2017.78333/

 

[Foxglove]

My version of IBS (d) seems different from the versions here....but for me, most foods are cooked. My IBS is quickly triggered by eating raw vegetables and salads for instance.

Bitter greens worsen IBS d in my case so I don't eat those often either. Meanwhile, some people are living on kale.

I have the same IBS-D reaction to uncooked vegetables. And a lot of other foods.

But if I eat oats, whole grains, string beans, flax seed, psylium, or so on, I can go IBS-C.

I take a half an immodium to control IBS-D? Straight to IBS-C. I have to use caffeine or some IBS-D trigger to fix it.

 

[MTpockets]

Have you tried any supplements to help the constipation? I take magnesium citrate and potassium glucanate and it really helps. Also you may want to be tested for celiac disease. A common misconception is that celiac only causes diarrhea but it can be the opposite or even a combo. With the pain and malabsorption, you would want to rule that at as a possible problem. Another thought would be a hernia of some type.

 

[nokmax76]

Thanks very much for all the replies guys. I suffer from brainfog and the cold has slowed my thought processes to a crawl ATM. So it'll take me a while to (ahem) digest the info and reply fully.

For now though, @Foxglove I have avoided the colonoscopy precisely because of the prep. I forgot to mention that for around three years now my body shuts down bowel movements for days at the first sign of diahorrea or rapid stools - as if it knows it can't cope with the constant strain due to the hyperalgesia - so I don't want to take necessary laxatives involved with the colonoscopy and risk further damage by forcing my body to do something it doesn't want to. One specialist did suggest that there might be another way to do the test without the laxatives but I forgot exactly what they said. I really am getting to the stage where I need someone with me at all my appointments.