u/ComprehensiveSand640

Like the title... Does anyone have stools that look undigested and seem to dissolve super quickly? My bf has hydrogen SIBO, and super incredibly pale, loosing weight steadily (50 pounds over 17 months), and his stools look like the foods just went through his gut without being digested. Is it SIBO related?

My bf (35m) can't even be on wheelchair, not able to walk, stand, or sit except just lying down. No diagnosis. All the test came back normal. Yesterday we did a wheelchair ride (outdoor) for 5-10 mins and he said that was truly exhausting and he had to come back and recover for hours and hours. Is he terminal? No doctor knows what's wrong with him.

Edit:

My boyfriend (35) has lost 45 pounds unintentionally over 15 months (180 → 135 lbs, 5'7"). I want to outline his symptom timeline, as it may help distinguish between GI and other causes:

Weight and muscle loss began in December 2024. Stools became paler and lighter months later, around August 2025. Severe weakness and low tolerance to daily activities followed, and he has been bedridden since February 2026.

His detailed symptoms include: severe weight and muscle loss; GI issues (pale, almost beige, floating stools); angina-like symptoms ruled out as non-cardiac by a cardiologist; severe, profound weakness that he describes life-threaning; fainting-like sensations; tachycardia; heart rate spikes with minimal exertion (e.g., standing for ~3 minutes); and leg muscle twitching, atrophy, and weakness. His quality of life has been devastated — he spends the entire day lying down, only getting up to use the bathroom.

Testing completed so far: abdominal CT with contrast, HIDA scan, MRCP, stool tests (pancreatic elastase, fat malabsorption), and blood work (celiac panel, calprotectin, liver enzymes, thyroid, vitamins and micronutrients: B12, B1, D, zinc, copper, lipase, CBC, CMP — all normal), and EMG — all normal.

The only diagnosis so far is SIBO (small intestinal bacterial overgrowth), though his doctors do not believe SIBO alone accounts for all of his symptoms.

He completed a course of rifaximin on April 11th and is currently following a low-FODMAP diet, with no improvement whatsoever. ER doctors have told us, "We are here to rule out life-threatening or acute illness, not to treat chronic conditions."

He has seen three primary care physicians, three gastroenterologists, one neurologist, and one dietitian — and still has no answers.

Thank you so much in advance.

If you can't take Midodrine, is salt and water still sufficient? or any alternative medicine worked? Thank you!

For those who worked with her, is it worth consulting with her? Did she provide any insights that your PCP or neurologist hadn't provided? Do they accept insurance? Would Telehealth be worth it?Thank you so much in advance!

Hi, thank you for reading. My bf (35), I think has a severe dysautonomia but never was diagnosed. He lost 46 pounds over 16 months, muscle atrophy, leg weakness, tachycardia, POTs like symptoms, severe weakness, unable to stand longer than 1 min. He also has very pale stools and sometimes float.

He did all sort of GI testing all came back normal. Except SIBO. however doctors told him SIBO doesn't cause all this.

His EMG was normal, his neurologist doesn't think he has ALS.

He has been bedridden for 3 months or more now, and his symptoms are getting worse. Last week, as we both thought perhaps gentle leg exercise would prevent further muscle atrophy, so I helped him doing leg resistance exercise with a band. He crashed immediately.

Two days ago, our wheel chair arrived. I took him for about less than an hour long ride, he crashed afterwards.

Today, he was a bit constipated but before his bowel movement he almost had what I understand as adrenalin surge.

If bowel movement triggers what should he do?

He is unable to go to do anymore blood work, or doctor's appointment is difficult as he is literally unable to walk, or sitting is difficult now.

I have been in communication with his doctors but they just tell him to go to the ER, finish the blood work that they ordered (autoimmune is included, as well as tick borne illness and others), but he physically can't unless I call an ambulance.

What should we do? Any comments or thoughts would be greatly appreciated.

I (35F) had a hysterectomy last May 2025 (exactly a year ago), and my surgeon thinks that my endo has returned upon listening to my symptoms:

• Pain during bowel movements
• Pelvic pain during the month I ovulate (I kept one ovary, so I have a "period" without bleeding every other month)

He wanted to do a physical examination in person, but he is fully booked until this summer. Can I ask a few questions for those who have had a hysterectomy and are currently dealing with endo?

• When my endometriosis and adenomyosis flared up pre-hysterectomy, I bled with crazy contractions, which caused enormous pain. Without a uterus and with my cervix sutured, does my body still bleed? If so, where does the blood go — just absorbed into the body?
• My surgeon thinks that I have endometriosis between the vagina and the large intestine. He said the endo tissue not only causes inflammation but can also penetrate the organ. I regularly have bowel movements (in fact too many times (!) per day post-hysterectomy), and I don't see any alarming signs such as narrowing of my bowels, bleeding, etc. What are the signs of endo penetrating the intestine? I am honestly quite worried.
• I have had two endo excision surgeries and two uterine polyp removal surgeries under general anesthesia in the past six years, totaling four surgeries. How many surgeries are too many? I expect another endo excision surgery sooner rather than later, and honestly who knows more surgeries until hit menopause.
• I am 35 — are any of you intentionally going into premature menopause at an early age? I know it affects your heart, bones, and virtually overall health, but is it a possibility?

Thanks so much in advance.

I (35F) had a hysterectomy last May 2025 (exactly a year ago), and my surgeon thinks that my endo has returned upon listening to my symptoms:

• Pain during bowel movements
• Pelvic pain during the month I ovulate (I kept one ovary, so I have a "period" without bleeding every other month)

He wanted to do a physical examination in person, but he is fully booked until this summer. Can I ask a few questions for those who have had a hysterectomy and are currently dealing with endo?

• When my endometriosis and adenomyosis flared up pre-hysterectomy, I bled with crazy contractions, which caused enormous pain. Without a uterus and with my cervix sutured, does my body still bleed? If so, where does the blood go — just absorbed into the body?
• My surgeon thinks that I have endometriosis between the vagina and the large intestine. He said the endo tissue not only causes inflammation but can also penetrate the organ. I regularly have bowel movements (in fact too many times (!) per day post-hysterectomy), and I don't see any alarming signs such as narrowing of my bowels, bleeding, etc. What are the signs of endo penetrating the intestine? I am honestly quite worried.
• I have had two endo excision surgeries and two uterine polyp removal surgeries under general anesthesia in the past six years, totaling four surgeries. How many surgeries are too many? I expect another endo excision surgery sooner rather than later, and honestly who knows more surgeries until hit menopause.
• I am 35 — are any of you intentionally going into premature menopause at an early age? I know it affects your heart, bones, and virtually overall health, but is it a possibility?

Thanks so much in advance.

I had a hysterectomy last year due to endometriosis but endo came back. My surgeon wanted me to be on norethindrone again but I am cautious about blood clot risk. Generally speaking norethindrone is safer than bc with estrogen contents but I want to be super careful. Thank you in advance!

My partner (35 m) has been bedridden for about 3 months or more and I am only his caregiver (35 f). His symptoms started about 15 months ago and we saw so many doctors and no one knows why he can't walk. Why he is continue losing weight. Last night I wanted to him to stop atrophying his leg muscles so I had him move his feet back and forth with resistance band. Just 10 reps each and he immediately crashed and almost passed out. He used to be the most healthy person I even saw (we met 6 years ago), and seeing him struggling this much breaks my heart. I don't cry, I try to stay strong amid this process of being diagnosed. I spend hours and hours taking to doctors office and oncall nurses just to see if there are any cancelations, if referrals are delivered alright, explaining his symptoms, update, etc. I work part time but I am at early career at university so works can take a lot of my time. I cook and try my best to make it appetizing but make sure it's not harmful for his body. I try my best to stay strong so he doesn't feel scared. But I am scared. I feel like no doctor cares. I am deeply sad. I often don't react well to his flare ups. I have mixed and overwhelming feelings when he is declining. I am disappointed my efforts don't show, I am upset that this happens to us, I am scared if there will be no treatment or cure or diagnosis. I am upset that I am the only one who is juggling so much but no one is willing to help. My family lives abroad though. When his doctorr or nurses just say "go to ER" I want to scream and say "ER DOESN'T DO SHIT".

I honestly don't know what to do and need support but don't know where or how.

Thank you in advance for reading. This may be a lengthy post, but I am desperate.

My boyfriend (35) has lost 45 pounds unintentionally over 15 months (180 → 135 lbs, 5'7"). I want to outline his symptom timeline, as it may help distinguish between GI and other causes:

Weight and muscle loss began in December 2024. Stools became paler and lighter months later, around August 2025. Severe weakness and low tolerance to daily activities followed, and he has been bedridden since February 2026.

His detailed symptoms include: severe weight and muscle loss; GI issues (pale, almost beige, floating stools); angina-like symptoms ruled out as non-cardiac by a cardiologist; severe, profound weakness that he describes life-threaning; fainting-like sensations; tachycardia; heart rate spikes with minimal exertion (e.g., standing for ~3 minutes); and leg muscle twitching, atrophy, and weakness. His quality of life has been devastated — he spends the entire day lying down, only getting up to use the bathroom.

Testing completed so far: abdominal CT with contrast, HIDA scan, MRCP, stool tests (pancreatic elastase, fat malabsorption), and blood work (celiac panel, calprotectin, liver enzymes, thyroid, vitamins and micronutrients: B12, B1, D, zinc, copper, lipase, CBC, CMP — all normal), and EMG — all normal.

The only diagnosis so far is SIBO (small intestinal bacterial overgrowth), though his doctors do not believe SIBO alone accounts for all of his symptoms.

He completed a course of rifaximin on April 11th and is currently following a low-FODMAP diet, with no improvement whatsoever. ER doctors have told us, "We are here to rule out life-threatening or acute illness, not to treat chronic conditions."

He has seen three primary care physicians, three gastroenterologists, one neurologist, and one dietitian — and still has no answers.

Thank you so much in advance.

My bf (35) lost 45 pounds over 14 months. Only diagnosis he has is SIBO, for which his rifaximin treatment didn't improve any symptoms. He doesn't have typical SIBO symptoms (bloating, constipation, etc) but has weight loss, fatigue, weakness, pale and floating stools.

He has done CT, HIDA, ultrasound, MRCP, Stool test, liver enzymes test, bilirubin, celiac, calprotectin, all came back normal.

At this point is EGD/colonoscopy helpful to diagnose his ongoing symptoms? Or to find out underlying disease that possibly caused SIBO? Or hidden malignancy?

I am asking because last week, the EGD/colonoscopy prep was too much for his already severely deconditioned body. He is not improving with foods and rest. It is rescheduled but not sure if he can tolerate then either.

His doctor won't discuss it with him. Just telling him that it is necessary, therefore, if he passes out during the colon cleanse and prep, go to ER, pass out there, continue prep, and finish the procedure.

His dietician thinks it's necessary too. One of his PCPs thinks they probably won't find anything. The GI team won't tell us what they are looking for through this procedure.

Thank you for reading

My bf (35) was positive for SIBO hydrogen, lost 45 pounds, severe muscle wasting etc. Did anyone find EGD/colonoscopy helpful in finding the cause? His GI says it's necessary but the sedation and prep is too much on already severely deconditioned body. His dietician thinks it's necessary but his GI doesn't even want to tell us what they are looking for (e.g. signs of SIFO, celiac, mucosal inflmmation, etc).

Does anyone has food intolence appearing as delayed onset such as next day fatigue/extreme weakness sort of symptoms? Rather than bloating, nausea, or diarrhea?

My bf(35) is diagnosed with Hydrogen SIBO, but never had bloating.

After rifaximin, he is on low fodmap diet and I have been in charge of cooking and coming up with recipes. I am not sure if it's food related, but some days he is doing better and some days he is completely "ER mode". Not sure what triggers it. But some days he is completely severely weak and deeply fatigued. Could you perhaps look at what I have been cooking and tell me possibly food reactions?

- chicken thigh, ground chicken

- oils (I use olive and peanut oils)

- some cheese (cheddar, mozzarella, parmaggiano reggiano)

- tomato

- GF buns, GF breads

- lactose free yogurt

- avocado

- berries (strawberry, blueberries, raspberry)

- some herbs (oregano, dill, pepper, thyme, rosemary, paprika)

Thank you so much in advance

My bf(35m) started losing weight and muscle unintentionally about 14 months ago (180->135). Then his stool started looking abnormal (pale, float, gassy, etc). All GI testings came back normal (CT, MRCP, HIDA, stool test (pancreas elastase, fat malabsoption, calproctectin), celiac). About 3 months ago, he is completely bedridden and was diagnosed with borderline POTS. Only thing is he was diagnosed with SIBO (Small intestine bacteria overgrowth) but the antibiotics didn't help at all, so his doctors think GI is not the primary cause for all this. Reading POTS subreddit, so many people shared very similar symptoms to my bf: heart rate spikes upon minimal exertion (~3 mins standing), feeling fainting, feeling passing out, extreme weakness.

I am not sure what caused it though. He had COVID during his illness timeline but his symptoms started before he had COVID.

Hi, thank you for reading. My bf (35) lost 45 pounds over 16 months due to chronic illness (what seems to be GI as he was diagnosed with SIBO, but some doctors say it's not GI), which also resulted in severe muscle atrophy particularly his leg muscles seem severe. Due to his illness he has been completely bedridden (except going to bathroom) 24/7 for about two months or more now. His leg muscles are wasting significantly. Can inactivity alone can cause muscle atrophy? In that case how can he build muscle again? His heart rate spikes upon minimal exertion (e.g. walking or standing ~3 mins)

Thank you

My bf (35, hydrogen SIBO) saw many many many doctors so far. His dietician, one PCP, and neurologist say that his SIBO positive can explain: massive weight loss (50pounds), muscle mass, weakness, dysautonomia symptoms, whereas his GI doctors- we saw three or four GI specialists so far- said SIBO doesn't cause this, and it's not GI attributed? So confused and feeling lost

Just like the title.... I have been having bowel movement pain ever since I had the hysterectomy a year ago. I had a year post op app just now. I told him that I have been having bowel movement pain consistently not every time but very frequently which can be excruciating sometimes. He thinks that due to Endo, my vagina and colon are possibly stuck together and possibly endo penetrates my colon. I already had two endo excision surgeries :( when does it end? I am 35. Should I consider early menopause?

Hi, thank you for reading. My bf (35) has been completely bedridden for over 2 months. He lost 45 pounds over 16 months (unintentional) as well as has severe muscle atrophy and twitching (legs) and weakness.

Due to his pale and floating stools, we worked with GI intensively. He's done: stool test (pancreas elastase, fat malabsorption), CT, MRCP, Ultrasound, HIDA scan and many blood testings to rule out malabsorption. All came back normal except hydrogen SIBO (small intestine bacteria overgrowth).

Even though he is SIBO positive, his blood works so far seem to show nothing malabsorption (B1, B12, D, copper, zinc, etc)

His GI started to point towards something systemic and not GI attributed. He tested for EMG for leg weakness, muscle atrophy as well as twitching, and his neurologist doesn't think he has ALS. How conclusive is the EMG test to rule out ALS or neuromuscular disease? His twitching is constant.

Does it sound like something tick borne illness, autoimmune or anything that direction? He also has tachycardia, heart rate spikes upon minimal exertion (e.g. walking 3 mins), feeling like passing out upon standing for a few minutes.

Thank you so much for reading.

Hi, thank you for reading. My bf (35) has been completely bedridden for over 2 months. He lost 45 pounds over 16 months (unintentional) as well as has severe muscle atrophy and twitching (legs) and weakness.

Due to his pale and floating stools, we worked with GI intensively. He's done: stool test (pancreas elastase, fat malabsorption), CT, MRCP, Ultrasound, HIDA scan and many blood testings to rule out malabsorption. All came back normal except hydrogen SIBO (small intestine bacteria overgrowth).

Even though he is SIBO positive, his blood works so far seem to show nothing malabsorption (B1, B12, D, copper, zinc, etc)

His GI started to point towards something systemic and not GI attributed. He tested for EMG for leg weakness, muscle atrophy as well as twitching, and his neurologist doesn't think he has ALS.

Does it sound like something tick borne illness, autoimmune or anything that direction? He also has tachycardia, heart rate spikes upon minimal exertion (e.g. walking 3 mins), feeling like passing out upon standing for a few minutes.

Thank you so much for reading.

Edit: I have attached his lab results if it's helpful.

Endocrine

TG (Triglycerides)

118 mg/dL

Date: Feb 24, 2022 02:07 p.m. EST

Reference Range: < 200 mg/dL

HbA1c

5.1 %

Date: Feb 24, 2022 02:07 p.m. EST

Reference Range: 4.0% – 6.0%

Estimated Average Glucose

100 mg/dL

Date: Feb 24, 2022 02:07 p.m. EST

TSH

1.12 uIU/mL

Date: Mar 10, 2026 01:52 p.m. EDT

Reference Range: 0.47 – 4.68 uIU/mL

Free T4

1.04 ng/dL

Date: Mar 10, 2026 01:52 p.m. EDT

Reference Range: 0.70 – 1.48 ng/dL

Free T3

2.8 pg/mL

Date: Mar 10, 2026 01:52 p.m. EDT

Reference Range: 2.0 – 4.4 pg/mL

Other Lab Results

Stool Pancreatic Elastase 1

800 mcg/g

Stool Fat Screen

Normal

Stool C. difficile Toxin B Gene PCR

Negative

Stool C. difficile 027-NAP1-BI

Presumptive Negative

Methylmalonic Acid

94 nmol/L

Arsenic

<3 mcg/L

Serum Copper

73 mcg/dL

Lead

<1.0 mcg/dL

Mercury Level

7 mcg/L

Zinc Level

67 mcg/dL

Blood Counts

White Blood Vitamin B1 Level

136 nmol/L

White Blood Count (WBC)

5.23 K/uL

Red Blood Count (RBC)

5.42 M/uL

Hemoglobin

16.4 g/dL

Hematocrit

49.5 %

Mean Corpuscular Volume (MCV)

91.1 fL

Mean Corpuscular Hemoglobin (MCH)

25.2 pg

Mean Corpuscular Hemoglobin Concentration (MCHC)

33.1 g/dL

RDW Standard Deviation

41.6

RDW Coefficient of Variation

12.7 %

Platelet Count

287 K/uL

Mean Platelet Volume

10.5 fL

Differential (Auto)

Immature Granulocyte %

0.2 %

Neutrophils %

53.3 %

Lymphocytes %

25.4 %

Monocytes %

5.9 %

Eosinophils %

2.2 %

Basophils %

0.4 %

Neutrophils #

3.33 K/uL

Lymphocytes #

1.33 K/uL

Monocytes #

0.31 K/uL

Eosinophils #

0.11 K/uL

Basophils #

0.04 K/uL

Immature Granulocyte #

0.01 K/uL

Metabolic Panel

Sodium

137 mmol/L

Potassium

3.9 mmol/L

Chloride

102 mmol/L

Carbon Dioxide (CO₂)

27 mmol/L

Anion Gap

8

Blood Urea Nitrogen (BUN)

19 mg/dL

Creatinine

0.95 mg/dL

eGFR

107.5

BUN/Creatinine Ratio

20.0

Glucose Level

93 mg/dL

Calcium

10.2 mg/dL

Total Bilirubin

1.4 mg/dL

Aspartate Aminotransferase (AST/SGOT)

13 U/L

Alanine Aminotransferase (ALT/SGPT)

12 U/L

Alkaline Phosphatase

54 U/L

Total Protein

6.7 g/dL

Albumin

5.2 g/dL

Globulin

2.5 g/dL

Albumin/Globulin Ratio

1.8