Looking for direction in treating Irritable bowel syndrome

Posted by wa34937 @wa34937, Jun 21 7:29pm

My 35 yr old daughter is desperate to find a solution to her (diagnosed) irritable bowel syndrome which has plagued her for decades and is increasing in severity. Her symptoms include chronic burning sensation in stomach and diarrhea among others. She is simply unable to eat for periods. She has been seen by numerous doctors and received exhaustive testing, As noted in studies, she had a hysterectomy which now seems to have possibly been unnecessary. Her other classic issues include celiac disease and acute anxiety disorder which may have been exacerbated by IBS and being treated for interstitial cystitis in her early teens. These conditions have as of late caused her to be unable to work, her mental well being is deteriorating. She is in need of a practioner or facility which will take an active interest in this challenge, we live outside the Detroit area.

Hi @wa34937, having a child that suffers from multiple diagnoses is definitely rough. As parents we just want to take their pain away. There have been several members on Connect that have discussed some of these issues and I would like to invite @amberpep, @astaingegerdm, @fit, @mugglemary, @jeanette527, @mamacita, @beverlymarks, @catsue, @beverlymarks, and @learningeveryday to the conversation.
A lot of times, stress and anxiety can manifest itself into bowel issues, so I am not surprised that her symptoms and exacerbated during her acute anxiety.
You mentioned her seeing several doctors. Along with her testing and diagnoses, did they offer any treatment options? What has she tried so far?

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@amandaburnett

Hi @wa34937, having a child that suffers from multiple diagnoses is definitely rough. As parents we just want to take their pain away. There have been several members on Connect that have discussed some of these issues and I would like to invite @amberpep, @astaingegerdm, @fit, @mugglemary, @jeanette527, @mamacita, @beverlymarks, @catsue, @beverlymarks, and @learningeveryday to the conversation.
A lot of times, stress and anxiety can manifest itself into bowel issues, so I am not surprised that her symptoms and exacerbated during her acute anxiety.
You mentioned her seeing several doctors. Along with her testing and diagnoses, did they offer any treatment options? What has she tried so far?

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Thank you for your concern, prior to puberty she was very bright, normal, adventurous, and suddenly developed acute anxiety becoming morbidly obese. Two decades of therapists and psychiatrists have done her little good. The MD's say it's in her head and tell her to lose weight, the therapists suggest a physical issue. She has seen Rheumatologists, Gastroenterologists, Gynecologists, et al. Treatments have included anti-depressants, anxiety, and the typical indigestion meds. I'm sure this list is incomplete given my second hand information. We agree that a solution must be had ASAP.

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@wa34937– I am happy that you found us!
Your daughter’s illness sounds almost exactly like my daughter’s history.
She started putting on a lot of weight when she started college and over 4 years+ went from a lean looking athlete to morbidly obese. It was also unfortunate that we didn’t see her day to day.
Anyway, at age 27 she was finally diagnosed with Cushing’s disease. She had a tiny pituitary tumor that stimulated large release of the hormone cortisol.
She had also seen numerous doctors, including endocrinologist.
Other symptoms she developed include depression, diabetes and rapid heartbeat.
My advice is to see an endocrinologist at a major university medical center or Mayo Clinic.
Routine tests won’t show this, unless suspected.
I realized that any doctor seeing her would think- another fat girl. Therefore, she started bringing photos from before she got sick.

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I will follow up on that, thank you.

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@wa34937 also the right probiotics could help. There is also a product line called heathers with IBS type products. Importantly Heather has a type of soluble fiber that can smooth out constipation And diarrhea and it is different than the garden variety insoluble fiber. It’s called heather‘S tummy fiber. Last, check or Dr. Fors book called “why we hurt and how we heal”. He talks about chronic pain but also gut health a lot. He suggests certain supplements and diet suggestions. Those might help. Good luck.

Liked by wa34937

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@wa34937 strangely, your comment about the unnecessary hysterectomy and the interstitial cystitis suspicion brings what is in the book “a headache in the pelvis” to mind by Dr Anderson and Wise (a urologist and a physical therapist). What causes many issues is tension in the pelvis. It is actually chronic myofascial pain (CMPD) they describe that causes this and there are many different presentations- but they very often include IBS and IC pain, among others (Doctors use pain patterns, but they are often wrong- especially in the pelvic area). Don’t rule out seeing a pelvic floor physical therapist – that might help. If I am correct, Dr. Fors book has many suggestions as his book speaks to CMPD and fibromyalgia. Briefly, the correct stretching and exercise is crucial as are dietary changes (which may include certain supplements) and I mentioned souluble fiber, today in my other post. I’d posted a review I gave Dr. Fors book on the digestive health thread – a sub thread about anal pain (another occasional symptom of pelvic CMPD) right here on this connect web forum if you care to look for that. That post listed specific exercises I do, too, if you want to read that review (I do a lot of core work to get rid of my glute and back pain; IBS is another irritation I have, too). It is a viable possibility now that you’ve been bounced around various specialties. What is clear after unnecessary surgeries is that the doctors are guessing (hate to say that). Consider chronic myofascial pain/ pelvic floor issues. A good physical therapist and what I mentioned above might really help if that is the issue. Good luck.

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I also was diagnosed with IBS… for years.
I finally went to another gastroenterologist who sent me for additional tests.
I have celiac disease… determined by a biopsy, and by a breath test at a hospital lab.( screening may also include genetic and antibody testing.) I cannot eat anything that contains WHEAT.
Celiac Disease for Dummies is a great resource written by a Professors of Medicine ..specialists in internal medicine.

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Look into a non-FODMAP diet. And meanwhile have her try apple juice for the diarrhea. It couldn’t hurt!

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Hello @wa34937

I would just like to follow up on the post above by @stefspad about the Fodmap eating plan for IBS. If her GI doctor has not mentioned this eating plan it might be a good idea to talk with the doctor and give this a try. Here is some information from Dr. Wang a registered dietician from Mayo.

What exactly is the FODMAP diet?
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/what-exactly-is-the-fodmap-diet-dr-wang-explains/
Here is a video on the topic

How is your daughter doing now? Any improvement?

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@richman54660

@wa34937 also the right probiotics could help. There is also a product line called heathers with IBS type products. Importantly Heather has a type of soluble fiber that can smooth out constipation And diarrhea and it is different than the garden variety insoluble fiber. It’s called heather‘S tummy fiber. Last, check or Dr. Fors book called “why we hurt and how we heal”. He talks about chronic pain but also gut health a lot. He suggests certain supplements and diet suggestions. Those might help. Good luck.

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Has your daughter tried Bifidobacterium MIMBb75, a paraprobiotic manufactured by Kijimea. Available in the US only on Amazon!
It did go through a clinical trial and did well! The Lancet Medical Journal published a recent article that made me hopeful that this
Paraprobiotic offered IBS relief. I want to hear from anyone who has tried it successfully or unsuccessfully! Moo1

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@moo1

Has your daughter tried Bifidobacterium MIMBb75, a paraprobiotic manufactured by Kijimea. Available in the US only on Amazon!
It did go through a clinical trial and did well! The Lancet Medical Journal published a recent article that made me hopeful that this
Paraprobiotic offered IBS relief. I want to hear from anyone who has tried it successfully or unsuccessfully! Moo1

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She's exploring, with a Holistic practitioner, possible lower bowel issues. With the wuhan mess testing through the mail is a challenge. I'm pushing major university medical facilities but she's the one in pain, unfortunately. Thanks

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@moo1

Has your daughter tried Bifidobacterium MIMBb75, a paraprobiotic manufactured by Kijimea. Available in the US only on Amazon!
It did go through a clinical trial and did well! The Lancet Medical Journal published a recent article that made me hopeful that this
Paraprobiotic offered IBS relief. I want to hear from anyone who has tried it successfully or unsuccessfully! Moo1

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Is this the same as ALIGN pre and probiotic?

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@cim37343

Is this the same as ALIGN pre and probiotic?

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No, Align is more commercially available, but each probiotic product has a different blend of “ good gut bacteria”. I read as many
medical articles as possible to check on Clinical Trials as I’ve had IBS and digestive issues for 40+ years. Look up “The Lancet” on
line since a Doctor just wrote an article about this particular probiotic and it’s success in treating IBS. I know I’m looking for a
miracle, but all other probiotics have not worked for me. Hopefully, someone who’s tried it will write in! Sending prayers your
daughter’s way! Moo1

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@moo1 Have you tried Heathers tummy fiber? It is a soluble fiber. Heather also wrote several books about IBS. Her products are also available on Amazon. Here is a link to her website. https://www.heatherstummycare.com

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cim37343l: if you want to find a major program using GI advances, contact The Rome Foundation, whose members are involved and share the newest
research on Digestive Issues. They know the most up-date treatments and will guide you to those that will serve you daughter best. Dr Douglas Drossman
at the University of North Carolina, helped to advance the research and treatments for Gastrointestinal Diseases. The Rome Foundation is a great source of
information. Wishing your daughter some relief from her medical issues. Moo1

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