• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Mysterious, extreme constipation - need this board's help!

Messages
6
Hi everyone,

First time poster. I've seen some excellent analysis and advice shared on this board. I'm now asking for your help. I have suffered constipation of an extreme degree since 2016. For those of you who might be able to help, please read my entire post - I believe the answer is somewhere in these details, and I just can't see it.


Symptoms:

-Constipation: Zero bowel movements per week. I have to force them with 20-30mg Dulcolax (biascodyl) twice per week.
-No urge to defacate. Ever. This is not an "I have to poop but I can't!" situation.
-Mild headache in morning, when I'd normally have a BM in the past
-Little to no flatulence. Disturbingly little.
-No ulcers
-No pain
-No nausea; no vomiting
-No diarrhea (except after taking biascodyl)
-I do not have fibromyalgia, weight problems, heart problems, history of cancer, etc


Allergies that I'm aware of:
-Sulfa drugs, some antibiotics (discovered both of these during childhood while treating chronic ear infections)
-No food allergies


Food sensitivities that do not produce an allergic reaction:
-I appear to be incapable of digesting wheat. More on this later
-Potentially dairy, but I'm not sure. Pizza is my worst trigger food for constipation. No diarrhea or stomach pain or gas from dairy
-Unclear whether red meat helps or hurts movement


History of this illness:
-I was a once-a-day kind of guy my entire life with no digestive issues whatsoever. At age 22, in 2011, I began a course of Accutane (isotretinoin), which has been reported to cause IBS or ulcerative colitis. The data is sketchy. 1 year after coming off the drug, I became constipated, and went to the doctor. She prescribed Senna and I was all fixed up.

-Every few months from that point in 2012, I'd find myself constipated, take a small dose of Senna, and clear out. Then it became every two months. Then once a month. Then twice a month. I knew not to take Senna too often, so I switched to fiber supplements, which helped.

-In 2016 I stopped pooping altogether. Senna stopped working. Fiber stopped working. I went to the doctor, who recommended Miralax. It worked for a while, then stopped. I moved to Dulcolax (biascodyl) but used it rarely because I was afraid I'd get addicted or damage my intestines.

-Everything fell apart after this. I tried tons of medicines and had tons of tests done. After seeing three specialists, I was finally diagnosed with slow-transit constipation, but it is a preliminary diagnosis.


Tests I've had performed, by chronological order:
-Fecal blood test: negative
-Standard blood panel: All levels within normal range
-Thyroid-specific panel: All levels within normal range
-CT-scan: Some divurticulosis, no blockage, no tumors
-Gastric emptying study for gastroparisis: Normal emptying speed
-SITZ marker study: Stomach and upper intestine empty normally. Very slow movement of large intestine, especially colon
-Upper endoscopy: normal, biopsies normal
-Lower endoscopy (colonoscopy): Tortuous colon, mild diverticulosis, no obstruction, no tumors, no ulcers, biopsies normal
-Upper/lower endo performed same day. Specifically, no damaged villi, no indication of Celiac's


Tests I'm having performed soon:
-Stool gut flora/parasite test


Medicine I've tried that no longer works:
-Miralax
-Senna
-Docusate: Never worked, just made me nauseous.
-Linzess (linaclotide, 290mcg): Worked fantastically for 2 months, then stopped working at all
-Magnesium citrate powder: For 6 months, produce a BM every morning. Now occasionally produces a BM the next morning, but rarely
-Lactulose: I think it helps with bulking a bit but doesn't move anything
-Coconut oil: never worked
-high fiber, both types. High quality supplements and foods
-Gargling: never worked


Medicine that currently produces BMs:
-Dulcolax: it's extremely painful and makes me feel like vomiting. I absolutely loathe taking it. I take it twice/week
-Magnesium citrate powder: I still feel like this occasionally works but I cannot explain why


Diagnosis:
-Gastroenterologist # 1: Colonic inertia
-Gastroenterologist # 2: "It's not colonic inertia. # 1 is wrong. It's slow-transit constipation. You have nerve damage or dead nerves around your intestines."


Medications I might try soon:
-Resolor (prucalopride): This is a nerve drug that was just cleared in the US for treatment of slow-transit. I think it raises seretonin levels.
-Mestinon: Gastroenterologist # 2 says "I will only put you on this if Resolor doesn't work. It's got a lot of side-effects." Mestinon raises acetylcholine levels.


Normal diet:
-Lots of red meat, tons of bread, tons of wheat cereals. Lots of chicken. Moderate dark-green veggie intake. No fruit. No salad. No fish.


Diet that helps slightly:
-I have cut gluten from my diet on 3 occasions for two weeks each. All three times, passing stool was easier with medicine, and I occasionally had bowel movements with no medication at all. Every single time I eat bread I feel heavy, bloated, and "stuck." But bread has never caused me brainfog/nausea/pain/diarrhea/gas.

-I now eat tons of fruit, tons of cruciferous vegetables, some fish, lots of chicken, moderate red meat. Greasy foods appear not to cause any issue or maybe even help, as long as there's no bread whatsoever. Lettuce-wrapped cheeseburgers.

-I cut dairy for one week and retained gluten. No changes; constipation remained.


Diets I should probably try but have never:
-FODMAP
-Paleo


My questions:
1. Do you agree that this is slow-transit constipation?
2. I've recently discovered the relationship between acetylcholine and constipation. I ordered Parasym Plus. I've also been told to try the following:
-wormwood leaves (chew on one)
-thiamine/B-1 (should I try thiamine mononitrate or thiamin HCL?)
-DGL (a kind of licorice?)
-B-12
-Pantothenic acid/B-5
-Alpha-GPC
Should I try/skip/know anything special about any of these?

3. Any other advice would be appreciated. Thank you so much.
 
Last edited by a moderator:
Messages
6
Please allow me to append one thing to my above post: my "normal diet" is not my diet anymore. That's the diet I had prior to 2016. I now eat the fruits/veggies/some fish/red meat and chicken diet and I try to avoid bread whenever I can.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I am sorry you are going through this @Metaphors
I know this sounds silly...but have you tried coffee? No I don't mean a coffee enema, but just drinking a nice medium strength roast in the morning after getting up? One or two cups.
Coffee has a reputation for stimulating the lower bowel.
There's something about that here:
https://www.thespruceeats.com/coffee-makes-you-poop-765051
There are far better sources about this, but that was the first one I found just right now.

A more "extreme" measure also works a treat. A coffee....with a shot of brandy on the side! (Yep, I know. BAD in the morning. But if it worked look on that shot as the best medicine.)

Also make sure you do drink a lot of water in the day. Not TOO much but maybe 2 litres.
 

Hip

Senior Member
Messages
17,858
It's slow-transit constipation. You have nerve damage or dead nerves around your intestines."

I wonder if that nerve damage might be due to enterovirus infection, one of the the ME/CFS viruses, and known to live in the gut (hence the name).

Oxymatrine and Epivir are two treatments used by Dr John Chia to treat enterovirus in ME/CFS; you can see some before and after treatment pictures of an enterovirus-infected gut in this post.


High dose vitamin C is something to consider; you can buy ascorbic acid by the kilo. I find doses more than around 10 grams in one go leads to bowel flushing.
 
Last edited:
Messages
6
I am sorry you are going through this @Metaphors
I know this sounds silly...but have you tried coffee? No I don't mean a coffee enema, but just drinking a nice medium strength roast in the morning after getting up? One or two cups.
Coffee has a reputation for stimulating the lower bowel.

I should have mentioned this, but I have never had coffee or alcohol in my entire life. I'm 30, haha. I made a vow to a loved one never to drink, so I haven't, and I just never liked the smell of coffee so I never tried it. I suppose I could choke it down... I'm also a bit worried about getting addicted to caffeine. I perform well at work and I don't want to suddenly start crashing at 2PM. But maybe I'll try it.
 
Messages
6
I wonder if that nerve damage might be due to enterovirus infection, one of the the ME/CFS viruses, and known to live in the gut (hence the name).

Oxymatrine and Epivir are two treatments used by Dr John Chia to treat enterovirus in ME/CFS; you can see some before and after treatment pictures of an enterovirus-infected gut in this post.


High dose vitamin C is something to consider; you can buy ascorbic acid by the kilo. I find doses more than around 10 grams in one go leads to bowel flushing.

Is this anything like a high dose of magnesium citrate? Because I do that all the time. It used to lead to an immediate flush, but now it either does nothing, or takes 12 hours (so I drink it before bed and sometimes have a BM in the morning).
 

Tammy

Senior Member
Messages
2,186
Location
New Mexico
Celery juice in the a.m on an empty stomach has worked for me like no other. It's pretty powerful. I used to drink it every morning to build up my HCL and found that it helped my bowel movements and gut inflammation. It helps if you have a juicer.....otherwise you can blend and then strain juice through a sieve or nutbag.........but that's a pain in the ass. I started with 4 oz and built up to a full glass. I hated the taste in the beginning but now my body actually craves it. I don't eat dairy or gluten anymore. If I eat too much meat it will stop me up also.
 
Last edited:

Eastman

Senior Member
Messages
526
Is this anything like a high dose of magnesium citrate? Because I do that all the time. It used to lead to an immediate flush, but now it either does nothing, or takes 12 hours (so I drink it before bed and sometimes have a BM in the morning).

How much magnesium citrate do you take? I usually take anywhere from about 50 to 200 of Mg from magnesium citrate and don't get a response until about a day later whereas senna or bisacodyl works within a few hours.

Some people report getting more regular with digestive aids like digestive enzymes, betaine HCL, bile acids, bitters.

Lecithin supports bile function as well as provide choline for acetylcholine production.
 

kangaSue

Senior Member
Messages
1,853
Location
Brisbane, Australia
Sounds like a typical onset pattern I've seen mentioned dozens of times before in people who are told they have either colononic inertia or slow transit constipation.

Your situation is complicated by the tortuous colon factor though. If the bowel is dilated too, possibly colonic pseudo-obstruction (Ogilvie's Syndrome). Ogilvie's also refers to Chronic Intestinal Pseudo Obstruction (CIPO) which can have slowly progressive symptoms (and some hypothesise that IBS is the more mild extreme of this). Full thickness biopsy checks for myopathic or neuropathic cause.

Otherwise with tortuous colon, transient bowel intussusception could be a factor causing constipation and these won't always show up in imaging on any given day.

Autoimmune Gastrointestinal Dysmotility (autoimmune neuropathy) can cause just constipation. Parasym Plus or Mestinon may improve symptoms in this case. Mayo GID1 antibody panel tests for AGID.

Autonomic Neuropathy alone can be a cause of constipation too, sometimes from causing a stuck ilieocecal valve so you could try massaging this area. Alternatively, try Dr Driscol'sl tip of placing a nicotine patch over the area of the ileocecal valve and if you have a bowel motion within a couple of hours, it's vagus nerve dysfunction related. Tilt Table Test, QSART sweat test and a Heart Rate Variability to Deep Breathing Test are a good basis for determining Autonomic Neuropathy.

Check that it doesn't involve a bowel vascular blood flow issue as these can linger for years with nondescript symptoms before progressing to more severe dysfunction. Doppler Ultrasound of the mesentery arteries to check blood flow velocities and have a doctor listen to your epigastric area for a bruit, a sound indicative of a blood flow restriction.

There is some evidence that TENS stimulation can move the bowels in STC, as can FMT (fecal transplant). Taking an arginine supplement along with some sodium bicarbonate is known to trigger diarrhea in some of those in the weightlifting game.

I have found that taking varying quantities of epsom salts (1 - 1 1/2 teaspoon), vitamin C powder (1/2 - 1 teaspoon (2000 to 4000mg)) and a cayenne capsule (as a bowel stimulant) together causes me a good clean out.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
Very distressing for you. I hope your doctors can fix this.

Are you bed bound? (Complete Lack of exercise can have that effect)

How about your normal medications? Some of these can cause constipation

eg Opioids; Calcium channel blockers. There are probably many more possibilities.
 

pamojja

Senior Member
Messages
2,397
Location
Austria
As I wrote already in this other thread:

I take high doses of vitamin C and magnesium (~22 g and 1.5 g respectively, in avg. during the last 9 years) due to conditions it helps a lot (Mg-deficiency, PAD, Rhinitis..). Needless to say, as side-benefit got at least 3 bulky bowel-movements each day from that.

Recently my father complained about a 1 week constipation (usually he could every 3 days and found that normal) where no meds helped, and his pains intensified. Advised to at least try a glass of Mg-rich mineral water with a teaspoon of ascorbic acid powder in it (about 4 g). Though usually he doesn't follow my advises, now he follows it religiously :). At least every second day, considers everyday bowel-movements a bit too extreme.
 

Deepwater

Senior Member
Messages
208
You say you cannot digest wheat and avoid bread where possible, but have you tried going totally gluten free? I have similar issue with digesting wheat and was very constipated before giving it up. Undigested gluten is - well - glue.

It may not be the whole answer if your bowels are very sluggish, but it may help.