Unexplained GI distress and abdominal pain

Posted by medicalunicorn @medicalunicorn, Jul 23 8:08am

Hi all,

I'm writing because I'm out of ideas and would like some help. In the past two-ish years, I've struggled with abdominal pain. After three ER visits, a same day, and a follow up, I'm not sure what to do. When I went in to see an internal medicine specialist for a follow up (my PCP was booked), she told me that my bowels sound like an 80 year olds (Im 32). I drink 100+ oz of water a day, when I take fiber supplements it makes the constipation way worse, I take 2 caps of miralax daily (it doesnt always help). Ive had 2 CT scans, ultrasoumds, xrays, an endoscopy, HIDA scans, pelvic floor dysfunction testing, endoscopy, and colonoscopies ×2.

For the past few weeks I've had blood with every stool. I've tried to manage hemorrhoids, but short of having watery stools I don't know what to do. I have many medical diagnoses that complicate this issue. I've posted here instead of GI because Im partly convinced that i have an undiagnosed autoimmune disease that I haven't seen.

My diagnoses: Charcot-Marie-Tooth type 1c/peripheral neuropathy, Fibromyalgia, chronic fatigue, Mast Cell Activation Syndrome, POTS/autonomic neuropathy, Endometriosis, Hypothyroidism, Ehlers-Danlos Syndrome (hEDS), pelvic floor dysfunction, anxiety, depression, adhd, ptsd, sleep apnea, low libido, nightmares, periodic leg movement disorder, chronic constipation, hemorrhoids (due to constipation), TBI x 2 in last 15 years,

The constipation started in 2013 when I turned 20 and has been chronic since. Upping my levothyroxine tended to help the constipation slighly, but i still feel exhausted a lot.

Any help, advice, or recommendations are highly appreciated. I'm sick of feeling full of shit, literally.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Colleen Young, Connect Director | @colleenyoung | Aug 10 3:59pm

In reply to @medicalunicorn "Hi all, I posted in the autoimmune group earlier, but my symptoms have worsened in the..." + (show)

@medicalunicorn

Hi all,

I posted in the autoimmune group earlier, but my symptoms have worsened in the digestive regard. Im (32F) with chronic constipation since 2013 when I first experienced rectal bleeding.

In the past year and a half I've gone to the ED 3 times. All three times every test came back normal even when I had gallbladder pain. I've had 2 CT scans, ultrasoumds, xrays, an endoscopy, HIDA scans, pelvic floor dysfunction testing, and colonoscopies ×2 (return in 7 years).

Recently, I've really been struggling with abdominal pain. I went to a same day clinic and she basically asked me why I was there when I frequently experienced rectal bleeding. I told her its been more than two weeks and she told me to increase fiber (this only makes my constipation worse- even in small increments).

When I went in to see an internal medicine specialist for a follow up (my PCP was booked), she told me that my bowels sound like an 80 year olds. Idk what Im supposed to do with that information.

I drink 100+ oz of water a day, when I take fiber supplements it makes the constipation way worse, I take 2 caps of miralax daily (it doesnt always help).

My biggest complaint recently is pain behind my rectum. It feels like there's someone either pushing on my rectum or it feels like there's a large marble behind it. It used to only hurt during bms but I can feel the pain constantly.

A while ago, I couldn't stop bleeding from hemorrhoids. Thankfully, I havent bled in a week or so, but short of continuing to feel full and feeling like I need a weekly dulcolax, I'm out of ideas.

I have many medical diagnoses that complicate this issue. The most likely are: endometriosis (currently managed by 5mg of norethedrone), Mast Cell Activation Syndrome, or hypothyroidism.

Other diagnoses include: Charcot-Marie-Tooth type 1c/peripheral neuropathy, Fibromyalgia, chronic fatigue, POTS/autonomic neuropathy, Ehlers-Danlos Syndrome (hEDS), pelvic floor dysfunction, anxiety, depression, adhd, ptsd, sleep apnea, low libido, nightmares, periodic leg movement disorder, chronic constipation, hemorrhoids (due to constipation), TBI x 2 in last 15 years,

If you've made it this far, my username is based on a joke I told my spouse. Doctors are told to look for horses, not zebras. Well, that must mean I'm a unicorn then with all of my different diagnoses (I still feel like I have another autoimmune disease too). Any help, advice, or recommendations are highly appreciated. I'm sick of feeling full of shit, literally.

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@medicalunicorn, I merged your two discussions into one thread that appears in both the Autoimmune Diseases and Digestive Health group. This way you will have the benefit of connecting with members of both groups and only have to go to one place to connect with others.

researchmaven | @researchmaven | Aug 11 7:55am

In reply to @mimidrc "@researchmaven I agree with the no fiber approach. Only made me worse too! When things are..." + (show)

@mimidrc

Good to know about Trulance, I may need it someday. I had only heard of Linzess.

The prune juice sounds like a great option, but I have other gastro issues and cannot tolerate it.

As for Milk of Magnesia, I should try it. Right now I take Hilma Constipation Relief -- Magnesium Citrate -- gentle, not strong. I may be ready for something like MofM, so thanks for the reminder!

Alta Net | @altabiznet | Aug 11 1:54pm

In reply to @bug3 "Sorry for the typos. Hang in there. Keep at it and never ever give up or..." + (show)

@bug3

Here is a link to the form for STRATAXRT prescription with StratPharma. Looks like it is only available through one designated pharmacy ProModRX - contact is in the form. I have not used this source - just found it on the web.
https://us.strataxrt.com/wp-content/uploads/2026/02/Rx-Prescriber-Information-Sheet-SX-CT-GR-ST-SK-US-004-13-1125.pdf

ckjk6260 | @ckjk6260 | Aug 11 3:50pm

You need a very good GI specialist. I have IBS mixed, meaning somedays I'm constipated and others I have diarrhea with significant abdominal pain. No medical advice here, just saying what I have been through recently. My GI usually trys to first rule out infections. If you are IBS or IBD, infections can be a common thing. A lot of blood work related to gastro infections. CT scans and a colonsocopy. Finding a treatment plan has been the hardest for me because IBS is ever changing. There are even biologics available now but finding the right one is like finding a needle in a haystack. Anxiety comes with these diseases, so does food fear. For me, I am always afraid of causing another flare or bad abdominal pain from I what I put in my mouth. So I eat very clean and read ingredients on everything. I also have FODMAP cookbook and you can get an app that will tell you how many fodmaps are in each food and suggested portion sizes. Stress increases EVERYTHING! So I see a counselor and practice calming techniques especially when in pain.
I wish you the very best!

bug3 | @bug3 | Aug 11 3:51pm

In reply to @altabiznet "@bug3 Here is a link to the form for STRATAXRT prescription with StratPharma. Looks like it..." + (show)

@altabiznet
TYVM! 💖

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