Desperate for IBS Help

[Anonymous]

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.

[Anonymous]

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]

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]

Get tested for SIBO.

Small Intestinal Bacterial Overgrowth

[Anonymous]

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.

[Anonymous]

Anonymous wrote:I’ve had IBS since my 20s. I’ve cut out all dairy, alcohol, and sugar. Tried going gluten free but it didn’t make a difference so I added it back. I’ve been on elimination diets on and off for 30 years including low-FODMAP to no avail. But I suspect I haven’t been rigid enough and because my condition is such a part of me, I’m not objective anymore about my symptoms. I’ve never had a solid poop, I’m always bloated and uncomfortable, and I can’t schedule morning activities due to bathroom issues. My Vitamin D levels are dangerously low (11-12) despite supplementation and osteoporosis is looming.

I’ve had colonoscopies, endoscopies, and CTs out the wazoo. I’m on Lexapro for anxiety. I’ve got a referral for a new GI doc specializing in IBS. I think I could use a good dietician and I’m about to start another elimination diet. What else can I do???

If you have managed IBS successfully, what helped you? Any dietician recommendations?

Are by chance not able to burp (Retrograde cricopharyngeus dysfunction)? I ask because it can be misdiagnosed as IBS

[Anonymous]

Anonymous wrote:Get tested for SIBO.

Small Intestinal Bacterial Overgrowth

I’ve not been tested. I’ll ask about it, thanks.

[Anonymous]

It sounds like your IBS could be linked to SIBO. There is some very useful research being done at Cedars Sinai in Los Angeles by Dr. Mark Pimentel and he has developed both advanced SIBO breath and blood tests that are available through a company called TrioSmart. Many of his webinars that are designed for patients are available on his website and there are also some on the Gemineli/TrioSmart website. Locally, Dr. Poorvi Shah DO is a board certified integrative medicine physician who is familiar with and uses Dr. Pimental’s protocol to treat SIBO patients. She is in Falls Church on Park Ave. I had struggled for years and have other autoimmune conditions, so my healing path took about a year, but all of my GI symptoms are 99% improved. I am still not able to eat raw vegetables and salad greens and some other things, but that is minor now that everything else is resolved. Hope this is helpful. Good luck. Don’t give up.

[Anonymous]

Anonymous wrote:It sounds like your IBS could be linked to SIBO. There is some very useful research being done at Cedars Sinai in Los Angeles by Dr. Mark Pimentel and he has developed both advanced SIBO breath and blood tests that are available through a company called TrioSmart. Many of his webinars that are designed for patients are available on his website and there are also some on the Gemineli/TrioSmart website. Locally, Dr. Poorvi Shah DO is a board certified integrative medicine physician who is familiar with and uses Dr. Pimental’s protocol to treat SIBO patients. She is in Falls Church on Park Ave. I had struggled for years and have other autoimmune conditions, so my healing path took about a year, but all of my GI symptoms are 99% improved. I am still not able to eat raw vegetables and salad greens and some other things, but that is minor now that everything else is resolved. Hope this is helpful. Good luck. Don’t give up.

This is so helpful thanks. I’ll ask my doctor to test for SIBO. I just started taking a bile acid binder yesterday and will see if that makes a difference. I’d love to stop this low-FODMAP diet. I’m starving.

[Anonymous]

You need to give diet changes at least a 5 month trial.

It took me 2 years of diet changes and eating the few food regimen to go into remission and have normal bms.

[Anonymous]

Anonymous wrote:You need to give diet changes at least a 5 month trial.

It took me 2 years of diet changes and eating the few food regimen to go into remission and have normal bms.

This is absolutely not recommended. The elimination phase of the low FODMAP diet is nutritionally deficient. It is not advised to stay in the elimination phase for any more than 2-4 weeks.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It sounds like your IBS could be linked to SIBO. There is some very useful research being done at Cedars Sinai in Los Angeles by Dr. Mark Pimentel and he has developed both advanced SIBO breath and blood tests that are available through a company called TrioSmart. Many of his webinars that are designed for patients are available on his website and there are also some on the Gemineli/TrioSmart website. Locally, Dr. Poorvi Shah DO is a board certified integrative medicine physician who is familiar with and uses Dr. Pimental’s protocol to treat SIBO patients. She is in Falls Church on Park Ave. I had struggled for years and have other autoimmune conditions, so my healing path took about a year, but all of my GI symptoms are 99% improved. I am still not able to eat raw vegetables and salad greens and some other things, but that is minor now that everything else is resolved. Hope this is helpful. Good luck. Don’t give up.

This is so helpful thanks. I’ll ask my doctor to test for SIBO. I just started taking a bile acid binder yesterday and will see if that makes a difference. I’d love to stop this low-FODMAP diet. I’m starving.

Keep us posted!

[Anonymous]

SIBO. Get tested now. And in case it is, good luck. It is a pain to deal with it.

[Anonymous]

Try Florastor with each meal. Generic is ok.

[Anonymous]

To the OP I have no suggestions but hope you find the issue and solution. I'm sorry you are going through this..