• 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 (FM), 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.

Intractable constipation

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Hi there,
Does anyone else here suffer from intractable constipation? My 13 year old, who has been diagnosed with Post viral illness, has this as a complication. He has suffered now for 14 months and been hospitalised six times so far. He is currently using a Peristeen Anal Irrigation system at home supplemented with enema treatments. He had a Bowel biopsy in May which was normal.

He had a period of recovery between June and September this year during which his post viral symptoms improved greatly and after four weeks of a slow and steady improvement, his bowels just started working normally again. Unfortunately in early Sept he picked up a vomiting and diarrhoea 'bug' in school and this has kicked off everything again, including the complete shut down of his bowels again. His post viral symptoms such as fatigue, sleep reversal, body pain, etc have also returned.

Since the bowel biopsy he has suffered severe pain in his back passage which no one can explain. The pain is so severe that he sometimes spends several hours at a time sitting on the toilet as this position eventually helps to ease the pain to a manageable level.

He has proved resistant to all oral medications to get his bowels moving, including medications which are used to prepare for bowel surgery. Nothing has worked.

My theory is that he may be creating an autoimmune reaction to these viruses which is targeting his digestive system and which is causing his bowels to switch off. What do you think? is there any research out there that someone could point me to?

His doctors here in Ireland are stumped. They have never come across someone like this who has such intractable constipation. At this stage I am desperately looking for anyone else anywhere in the world who has suffered similar symptoms.

Any help would be very much appreciated. We're desperate at this stage and his doctors are now suggesting putting him on Prozac which I think is highly inappropriate. It feels like just because they can't figure it out, they want to throw psychiatric drugs at him to see if it helps! It's getting harder and harder to rebuff them though :(
 

brenda

Senior Member
Messages
2,263
Location
UK
Joan

Hi and welcome. What have you tried apart from medications? High doses of vit c and magnesium usually get things moving. Maybe there is an alternative practitioner you can consult with or a bowel forum? I have not had this problem but l am sure you will find some help.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Joan

Hi and welcome. What have you tried apart from medications? High doses of vit c and magnesium usually get things moving. Maybe there is an alternative practitioner you can consult with or a bowel forum? I have not had this problem but l am sure you will find some help.
Hi Brenda,
Thanks for the reply. He is on vitamin C, probiotic capsules and cod liver oil. Also his diet was very high fibre for six months. When that made no difference we embarked on a primal food diet which has no wheat, no flours, no processed food, no processed sugars, minimum natural sugars, etc. He has been on this for about five weeks now but so far nothing has changed.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@JoanDublin I have IBS with constipation and the thing that saves me is Acacia Fiber and high fiber. But you need to take soluble fiber vs insoluble.

For me, there are certain foods that totally bind me. Dairy, fruit, fats, red meats... I'm wondering if the diet he is on is actually causing more of a problem. For me, when I eat too much insoluble fiber, like fruits and veggies and whole wheat products, or the other stuff I mentioned it binds me completely up. If I start eating white flour and low residue foods then things start to move again. It's important to balance the insoluble fibers with soluble fiber.

Here is some information about the acacia fiber and and IBS diet which you can modify to suit your needs.

This is the acacia fiber I use but there are others around. You have to start slowly and build up. Without it I would never go to the bathroom.

http://www.helpforibs.com

Maybe this will at least give you some ideas.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Psyllium or isphagula husk are also soluble fibrea, available from health food shops, which have been found to help a lot with IBS troubles.:thumbsup:

keep clear of all insoluble fibre though - roughage.:devil:

I have heard of some folk going on to develop IBS symptoms following gastroscopies and tubes being stuck everywhere..

also of folk who had IBS symptoms to start with getting a load of relief after gastroscopies and tubes being shoved up and down them...

I hope you find something that works soon.
It must be utterly miserable. :love:
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
@JoanDublin I have IBS with constipation and the thing that saves me is Acacia Fiber and high fiber. But you need to take soluble fiber vs insoluble.

For me, there are certain foods that totally bind me. Dairy, fruit, fats, red meats... I'm wondering if the diet he is on is actually causing more of a problem. For me, when I eat too much insoluble fiber, like fruits and veggies and whole wheat products, or the other stuff I mentioned it binds me completely up. If I start eating white flour and low residue foods then things start to move again. It's important to balance the insoluble fibers with soluble fiber.

Here is some information about the acacia fiber and and IBS diet which you can modify to suit your needs.

This is the acacia fiber I use but there are others around. You have to start slowly and build up. Without it I would never go to the bathroom.

http://www.helpforibs.com

Maybe this will at least give you some ideas.

Thanks for the reply. It's all very complicated isn't it? I will certainly look into this for him
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Psyllium or isphagula husk are also soluble fibrea, available from health food shops, which have been found to help a lot with IBS troubles.:thumbsup:

keep clear of all insoluble fibre though - roughage.:devil:

I have heard of some folk going on to develop IBS symptoms following gastroscopies and tubes being stuck everywhere..

also of folk who had IBS symptoms to start with getting a load of relief after gastroscopies and tubes being shoved up and down them...

I hope you find something that works soon.
It must be utterly miserable. :love:

Thanks for that info. Yes it is miserable for him. He's such a great kid as well. Full of life and sporty (well he was before he got so ill).
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
You can't avoid insoluble fibers because you need that for your health. The key to eating fruits and veggies is to eat it with soluble fiber. Eat some bread or potatoes THEN add the insoluble fiber.

If you got acacia fiber, which for me is different that psyllium, I would start on that and for a few days do eliminate insoluble fiber but then slowly add it. It's also about trial and error to see what foods cause the least reaction. I can eat asparagus with no problems. Other things I have to cook the crap out of to be able to eat them.

And although magnesium can cause diarrhea, I think for the kind of constipation you are talking about he'd need to take a ton of it.

I know Maryb uses acacia fiber. Ask her where she got it. I know www.iherb.com has it and ships to the UK.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@minkeygirl
yes I use NOW foods acacia powder - a heaped desertspoonful in water ever moring - before this nothing made me 'go' other than mega high sennna - if I miss a day it all starts agin and I have to wait until things move again regularly. you really have to be consistent. Tried physillium husk and fibre drinks from the docs - nothing

I also 'went' with the colonoscopy prep so I'm obviously not as bad as your son @JoanDublin
but I would say I haven't met anyone as bad as me for constipation.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Thanks for the info everyone. Will definitely look into the acacia stuff tomorrow. There's a health food store near me so will go down and talk to them. Anything is worth trying at this stage. My only concern is that if his constipation was diet related, why did it suddenly get better when his ME symptoms started improving and then immediately start again from the very day he picked up another virus in school. He literally hasn't had a single bowel movement without interventions since the same day he came home from school sick.

I will let you know if the acacia works for him!
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
The. Other thing with acacia fiber is you can cook it in food and bake with it. It's really versatile

Maybe it's not totally diet related. Mine isn't but I can control it by watching my diet and the balance between soluble and I soluble fiber.
 

brenda

Senior Member
Messages
2,263
Location
UK
Joan you can use high doses of vit c to empty the bowels. You work up the dose from say 3,000mgs taking an extra gram every so often till you get success. Do a search on it. It can upset the stomach but there ways to avoid it. It is the quickest way to get the bowels to move whilst waiting for fibre to do its stuff.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I think adding too many things
To the mix could cause problems. If there is a reaction you won't know what it's from

And from my experience mega doses of C and senna are stop gap measures.
 

anna8

Senior Member
Messages
122
The constipation is most probably not diet related, I think the best way to look at it is your gut is like the engine of your body if the engine stops working for a number of reason then it will need help to start working again.
It like giving your body medicine to help it get better.

Anna x
 

caledonia

Senior Member
Try magnesium, and if that doesn't work, I suggest getting stool testing and working through the 4R gut rebuilding program linked in my signature. The stool testing will tell you which bugs he has, and then you can kill those off with herbs.

Any form of magnesium except magnesium oxide is ok. Magnesium oxide doesn't absorb well. So magnesium taurate, glycinate, etc.

If your adrenals are not working well you'll be leaking out magnesium. You need to replace it or you'll be deficient, which causes constipation, heart palps, restless legs, muscle twitches and so on. So if he has these other things too, that's a good clue it's magnesium.

At one point I was taking 1800mg of magnesium per day, which is a ton. Now as my adrenals have improved with methylation treatment, I'm down to 450mg per day.

In addition, there are many medicines which can cause constipation, so if he's on any meds, look them up and see if this is a side effect. Magnesium should work for that as well.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I've had good results with probiotic foods--kefir, miso, natto-- as well as a supplement (Align). My problems were brought on by antibiotic use and were not severe.

I wonder if your son's problems are neurological.

Best of luck.
 

leela

Senior Member
Messages
3,290
Poor thing. How awful for him.

So much info here, I know, but I'd like to add that water irrigation of the bowels is actually
(paradoxically) quite drying :eek: Drying causes constipation:( Ack! It also destroys the protective mucosal lining.

I would suggest either adding some pure organic oil like sunflower or sweet almond (unless he has nut allergies) or olive to the enema water, or better yet, doing oil implants--this can be done easily with a bulb-type ear irrigator.
http://www.amazon.com/AMSINO-INTERNATIONAL-INC-AS00502S-SYRINGE/dp/B001B9SJX4

It can be nice to warm the oil a little, which can be achieved really easily by simply resting/swirling the filled bulb pointy side up in a jar of hot water for a bit.

The oil implant can be held as long as is comfortable--often it will be almost entirely absorbed. This is very nourishing and lubricating.

Apparently one can do a full enema of just oil, but I've not tried that. Could be soothing--perhaps something to research. Not sure about that though.

ETA the link I posted is priced for like 25 of them...they just cost a couple of dollars.
 
Last edited by a moderator:

lastgasp

Guest
Messages
40
You can't avoid insoluble fibers because you need that for your health. The key to eating fruits and veggies is to eat it with soluble fiber. Eat some bread or potatoes THEN add the insoluble fiber.

Many people with ME or other cause of dysbisis can't tolerate insoluble fibre, in fact some can't tolerate soluble fibre either - it's all carbohydrate and can be fuel for the microbes involved. I can't eat veg unless they're very well cooked (to break down fibre) and only in small amounts.. Some veg seem better than others a la the specific carbohydrate diet or certain food intlerances. I need to keep microbial activity down with ginger, garlic, oregano oil and silver and yet still have discomfort and occassionally outright inflammation and bm's are uncomfortable. I can eat very little fruit at all due to the sugar content (that would give me wall to wall oral condida in addition!) with the exception of occassional pineapple but I've had to have pineapple less these days due to the acidity.
 

lastgasp

Guest
Messages
40
Constipation might not be due to diet but could be due to ATP deficiency, you could try adding CO-Q10, L-carnitine, and D-Ribose (which has a slight laxative effec but some people find it a irritant). The gut is low priority in energy-sucking diseases compared to the heart. It could be neurological too, what would the treatment there be, to ensure bloodflow to the brain?

I find magnesium oxide and vitamin C helps; you can take them to bowel tolerance (as long as you don't have a slow heartbeat, if he has heart symptoms you should ask his doctor first of course). I haven't come across a claim that m. oxide is constipating before and it hasn't been my experience (a benefit of oxide is that there's less risk of reaching an overdose before reaching laxative effect - althoug it's generally safe). Magnesium is more gentle than vitamin C.