Anonymous wrote:Have you had breath tests and ruled out SIBO? Especially autoimmune SIBO? This can drastically effect treatment.

Yep.

Xifaxin (sp?) got rid of my problems.

Get tested for SIBO.

Small Intestinal Bacterial Overgrowth

Here is what helped me most: giving up oatmeal. I love oatmeal and it was my comfort food and what i ate when my gut was really bothering me. It's on every list of safe foods ever written. But when I tried low-carb for a while, I felt better, much less pain and bloating and diarrhea. And when I went back to eating oatmeal, back all the symptoms came.

Of course, without oatmeal (or bran, which i already knew was a trigger), I now struggle with constipation, although it's not terrible. What's helped most with that is Sunfiber (guar gum). This has also been found to be helpful for people with SIBO.

I feel better now than I have in years. So I suggest trying a combo of low-carb/low FODMAPS, which no lie will be difficult and truly annoying, and see how you feel. If that helps, you are eating something that is bothering you. Start with things that you tend to eat a lot and very slowly and deliberately add them back to your diet, one at a time. See if you can identify a culprit. It might be something you never imagined it could be.

Good luck, IBS is terrible.

Anonymous wrote:You can try a course of Xifaxan, if that has never been done.

I know you said you avoid dairy. How about artificial sweeteners? Would get rid of any of that.

I think low FODMAP can cause disordered eating, in the long-term.

Try cholestyramine (without sugar). It is like drinking sand. If it is helpful, there are pills you can take instead.


If no one has changed pancreatic elastase, you can do that. You need to take Imodium to have a formed stool sample.

Gelcaps can give you loose stool. Would recommend a Vit D tablet and trial of avoiding gelcaps.

I hope things get better!

Thanks for this. I hear you about FODMAP and disordered eating. I struggled with this in my 20s and my mother, who had similar digestive issues, struggled her whole life. It was never about body dysmorphia or control, but when you’re so desperate for relief and food feels like the enemy, it can be hard to think of eating in a normal way.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I suspect you have bile acid diarrhea and not IBS. See if you can get a doctor to try you on Questran.

OMG this is ME!!! I’ll talk to my doctor about it. Thank you!!!

Us chronic GI-issue women have to advocate for ourselves. Best of luck to you. So depressing that we have better luck with random Internet forums than we do with our own physicians who tell us years of chronic diarrhea is just "anxiety."

You’re not kidding! I can’t count how many doctors have dismissed me and sent me along with a shrug and orders to treat my anxiety and try low-FODMAP - the most restrictive and unpleasant diet ever. It’s so depressing and discouraging I just give up.

Yup! Two gastros ago, the doctor told me I needed to stay on low FODMAP "until it works." I have done the diet for 2 months under the supervision of a Monash-certified dietitian and never moved past the elimination stage. She said it was dangerous to continue on the diet from a nutrition standpoint and there was no reason to believe I would see improvement by staying on it longer when I had two months with no benefits.

These doctors are lazy with anyone who is remotely complicated.

My new doctor tried me on a round of budesonide. 80% reduction in symptoms.

That’s amazing! I’m happy for you. Would you recommend your dietician? I’ve been looking for a good one.

You can try a course of Xifaxan, if that has never been done.

I know you said you avoid dairy. How about artificial sweeteners? Would get rid of any of that.

I think low FODMAP can cause disordered eating, in the long-term.

Try cholestyramine (without sugar). It is like drinking sand. If it is helpful, there are pills you can take instead.


If no one has changed pancreatic elastase, you can do that. You need to take Imodium to have a formed stool sample.

Gelcaps can give you loose stool. Would recommend a Vit D tablet and trial of avoiding gelcaps.

I hope things get better!

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I suspect you have bile acid diarrhea and not IBS. See if you can get a doctor to try you on Questran.

OMG this is ME!!! I’ll talk to my doctor about it. Thank you!!!

Us chronic GI-issue women have to advocate for ourselves. Best of luck to you. So depressing that we have better luck with random Internet forums than we do with our own physicians who tell us years of chronic diarrhea is just "anxiety."

You’re not kidding! I can’t count how many doctors have dismissed me and sent me along with a shrug and orders to treat my anxiety and try low-FODMAP - the most restrictive and unpleasant diet ever. It’s so depressing and discouraging I just give up.

Yup! Two gastros ago, the doctor told me I needed to stay on low FODMAP "until it works." I have done the diet for 2 months under the supervision of a Monash-certified dietitian and never moved past the elimination stage. She said it was dangerous to continue on the diet from a nutrition standpoint and there was no reason to believe I would see improvement by staying on it longer when I had two months with no benefits.

These doctors are lazy with anyone who is remotely complicated.

My new doctor tried me on a round of budesonide. 80% reduction in symptoms.

Have you had breath tests and ruled out SIBO? Especially autoimmune SIBO? This can drastically effect treatment.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I suspect you have bile acid diarrhea and not IBS. See if you can get a doctor to try you on Questran.

OMG this is ME!!! I’ll talk to my doctor about it. Thank you!!!

Us chronic GI-issue women have to advocate for ourselves. Best of luck to you. So depressing that we have better luck with random Internet forums than we do with our own physicians who tell us years of chronic diarrhea is just "anxiety."

You’re not kidding! I can’t count how many doctors have dismissed me and sent me along with a shrug and orders to treat my anxiety and try low-FODMAP - the most restrictive and unpleasant diet ever. It’s so depressing and discouraging I just give up.

My husband has Crohns and has had great treatment at Hopkins and UVA.

I know it's not the same, but both gastro departments are very good. Both addressed new symptoms and changed treatments as science changed.

Anonymous wrote:

Anonymous wrote:I suspect you have bile acid diarrhea and not IBS. See if you can get a doctor to try you on Questran.

OMG this is ME!!! I’ll talk to my doctor about it. Thank you!!!

Us chronic GI-issue women have to advocate for ourselves. Best of luck to you. So depressing that we have better luck with random Internet forums than we do with our own physicians who tell us years of chronic diarrhea is just "anxiety."

Anonymous wrote:I suspect you have bile acid diarrhea and not IBS. See if you can get a doctor to try you on Questran.

OMG this is ME!!! I’ll talk to my doctor about it. Thank you!!!

I found several months on a carnivore no fiber diet really transformed my health. My doctor suggested it after another patient had success.

Anonymous wrote:

Anonymous wrote:After 20 years of dealing with this, I started taking an Imodium every other night before bed about 18 months ago and I feel like I have my life back. I can drive morning carpool, go to morning church without worrying, go into work without worrying, etc..
I know it’s not an ideal solution, but my doctor told me it’s safe since there’s nothing else wrong with me. I honestly just think that I have an overactive digestive system, and Imodium’s slows it down until it functions at a regular speed. It doesn’t make me constipated, it makes me normal.

hm GLPs do this too. I wonder by OP wouldn't try it just to try it? She's tried everything else....

Does a GLP make you lose weight though? I’m not overweight (PP about Imodium)

Anonymous wrote:I suspect you have bile acid diarrhea and not IBS. See if you can get a doctor to try you on Questran.

Good point, with h/o hall bladder removal!