IBS C- chronic idiopathic constipation - IBS Network

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IBS C- chronic idiopathic constipation

Eleanor91 profile image
30 Replies

Hi All, I'm new to this forum. I have been "diagnosed" with IBS/Chronic idiopathic constipation. I am at a loss as to what to do. The strangest thing about my problem is that it seemingly came out of nowhere. I live in Australia and about 8 months ago went travelling to the UK and throughout Europe. A few days after arriving in the UK was when my symptoms started. A complete loss of sensation and urge to have a bowel movement as well as bloating were my main symptoms. I travelled for nearly 2 months and only had one proper bowel movement during this time which was after taking a stimulant laxative. I had tried adjusting my diet to include more fibre, cutting out dairy and gluten, nothing worked. Tried taking all fibre out of my diet to see if that worked to no avail. I have been back home for 6 months now and the symptoms are exactly the same. I have had a CT scan, faecal tests and blood tests and all have come back negative. My doctors have told me I need to accept this and get on with life taking laxatives for the rest of my life (which don't really work for me). I have close family history of small bowel cancer (mother) and ulcerative colitis (father). I am very stressed. I am booked in for a colonoscopy soon, which my specialist said was a bit unnecessary and would most likely show nothing so that's what I'm expecting. I have never had problems with being regular every before in my life. I am 24 years old and refuse to live like this. Has anyone else experienced anything like this? I am convinced it has something to do with bacteria/pathogens. Any personal experiences/advice would be greatly appreciated. Thanks guys :)

30 Replies
kimhp profile image

Hi Eleanor - sorry for your troubles. I have lived with chronic constipation most of my life. I have tried colon cleansing and had scans etc etc. I have realised now (54 years) that it is something I have to learn to live with and control myself. I have read that probiotics can help the good bugs in your system. If you have given up dairy, does that mean yoghurt too? Yoghurt contains probiotics. So perhaps look to getting some another way. I too have gone the fibre free, dairy free and gluten free route - with no change. Senna tea seems to help flush me out- so I try do this twice a week. Good luck with it all, and I hope your colonoscopy is negative and you don't have any serious.

Eleanor91 profile image
Eleanor91 in reply to kimhp

Hello Kim, thanks for your reply. I do realise that this may be something that I may have to deal with for the rest of my life, which is depressing, and I am slowly coming to terms with it however I am going to continue to try and find an answer. What I find strange about it is that it happened so suddenly. All of my life I have been 100 per cent regular, after every meal pretty much, no problems at all. One day everything just stopped working and it seems as if the travel, or the contraceptive pill that I tried shortly before my trip, sparked this problem. I am convinced something has happened that can be reversed. I am now eating yoghurt with live cultures, but finding no relief. I take laxatives fairly regular as I simply have to. Did your symptoms come out of nowhere or have you always struggled with being regular to some degree? Have you heard of Professor Borody's research in this field by any chance? I find it very interesting. If you haven't already I suggest you have a look at this link: cdd.com.au/pages/disease_in.... I have an appointment at his clinic in a months time so will see what they have to say about my situation, worth a try at least. Thanks for the tip on the senna tea - I will give this a go. I take coloxyl with senna occasionally or use movicol to flush myself out if I'm feeling particularly "backed-up". I have recently tried acupuncture with chinese medicine but that seemed like more of a Band-Aid fix.

kimhp profile image
kimhp in reply to Eleanor91

Thanks for that link. I will check it out. The constipation is something I have lived with forever, but it seems to have gotten worse with age! I had a colon cleansing once, and she told me I have an unusually long colon which may have something to do with it. Also, try find something called kombucha - delicious to drink and is meant to help add good bugs to the system. Keep me posted as to how you get on with things.

Di-Mc profile image
Di-Mc in reply to Eleanor91

That link is really interesting, thanks for posting it and hope you are now finding some improvement ?

I have suffered with Chronic Constipation for years which was diagnosed as IBS - C and so am always interested in what other people find helpful and your theory about a trigger for its onset is also interesting. I hope you find more answers.

Did you go to the clinic and if so how did you get on ?


Eleanor91 profile image
Eleanor91 in reply to Di-Mc

Hi Di-Mac,

I went to my first appointment with the CDD on Friday. The doctor is certain it's caused by a pathogen and has put me on the vancomycin and rifaxamin combination, I'm meant to stay on hear antiobiotics for 2 months. He is very confident that I will be able to poo again very soon, but I will believe it when I see it. Today is day 3 of the antiobiotics and I have seen a little change but not much, early days though, I will keep you updated. Did your IBS-C start suddenly too?

Di-Mc profile image
Di-Mc in reply to Eleanor91

Unfortunately I have had a problem with constipation for more years than I care to remember so can't pin point when it started but after numerous tests they have put it down to IBS-C.

I also had Endometriosis and as that was extensive I had a total hysterectomy and they hoped it might improve my bowels too if it was a contributory but it hasn't.

I have an MRI tomorrow but not really expecting it to show anything, (not that I want it to show anything bad obviously) just clutching at straws for something to show that can be put right I guess.

I have also just been prescribed Constella, with a plan to add a pain killer if the Constella works and then a strong probiotic. I took the Constella for two days but it gave me such a horrid sick feeling and terrible bloating and churning stomach and the feeling of uncertainty that I have had to stop for the time being and revert to usual meds but may give it another try after I have got this week over.

Eleanor91 profile image
Eleanor91 in reply to Di-Mc

Ah that's a real shame to hear. Constipation is horrible, especially when it's chronic, it rules your life, at least I know it certainly rules mine. Have you ever been on antibiotics and seen any results? Fingers crossed for me, if it shows results it could help a lot of miserable and sick people

Di-Mc profile image
Di-Mc in reply to Eleanor91

No I haven't.....please do let me know how you get on.

Yes you are right, it is horrible and like with many things in life, unless you experience it yourself people don't realise..

O2ADDICT profile image
O2ADDICT in reply to Di-Mc

I tried Constella twice when it recently became legal in Canada and both times had horrid experiences. Initially it seemed to work and then the bloating and pain hit....hit bad, sending me to emergency. Had to stop it.

Part of my problem is transit in nature. So my GI specialist is trying me on Modulon. Can't say much about it yet. Too soon. Ground flax seed did work for me for awhile but when that stopped I started chia seeds soaked for a few hours added to my morning smoothie. That my be helping.

BTW, I've had IBS-C all my life and I'm now 63.

Hobbies profile image
Hobbies in reply to O2ADDICT

So did I. It was awful. Pure liquid Diahorrhoea for an hour, so I didn't take any more than 2 doses. My Consultant said 'it may work, it may not'. Not exactly inspiring. After 3 visits to him I researched a hospital in the North West, other than my local Hospital. I presented a list of 11 specialist Consultants & Professors. I've been referred to a Professor as my GP said after 3 local Cons we'll go to the 'top' now......fingers crossed. Waiting time 3months which will be May. I've already been sent blood forms & a stool sample pot to be taken 2weeks to Hosp before Apt.

I'm impressed so far, but having had IBS for 3years & constantly battling for a 'normal' life, let's see.


Rozzy46 profile image
Rozzy46 in reply to Eleanor91

Dear Eleanor,

I've just read your post of 3 years ago and as I suffer from IBS-c that came on overnight after a stomach upset, I wondered if you had had success with the antibiotics the doctor prescribed you to sort out your problems? Your story struck such a chord with me because of the sudden onset - it's hard to believe it's possible for bowels to stop working overnight. I think the mind-body connection comes into it but it's so hard to break that vicious cycle of problem-anxiety-problem. If you read this I'd be so interested to hear how you are now - am hoping you're much better.

Best wishes

Eleanor91 profile image
Eleanor91 in reply to Rozzy46

Hi Rozzy46,

Nice to hear from you! Unfortunately the antibiotics didn’t work for me and I’m still stuck with the constipation however I feel like things might have improved a little compared to how things were earlier, I am able to have a small BM each day - but not a full motion. So I still need some assistance with laxatives but am trying to experiment with my diet a bit more these days to see what works. I’ll keep you updated! I hear lots of stories of people getting tummy bugs then ending up with ibs-c it’s probably the most common cause so it does sound like it might be something to do with the gut microbiome. Do you take anything for your ibs-c?

Rozzy46 profile image
Rozzy46 in reply to Eleanor91

Hi Eleanor91

Thanks for replying so promptly - it's good that you're able to have a BM each day - albeit 'incomplete evacuation' and it sounds like so many of us, you've found a way to manage albeit not quite as we would wish! Does diet help you? Have you tried going gluten free? Have you been tested for food intolerances? I'm exactly the same as you - have a small BM each day but then eel so uncomfortable I strain to have more. I have a permanent feeling like I need 'to go' but nothing happens unless I force it. If I can empty myself I feel normal again - but that's not very often sadly. I take flax oil, ground flax seed (not too much because too much fibre now causes gridlock where once it worked like a dream) probiotic yoghurt, magnesium citrate 200 mg at night, no gluten (oats, wheat rye bloat me up horrendously) and eat lots of fruit and veg. Sometimes I wonder what to eat because everything seems to make me bloated but I'm pretty sure that's because of the constipation rather than food intolerance. I recently tried Ortis fruit and fibre cubes (not the ones with senna) and they work like a dream but then after you stop, things slow down a lot. They contain fig, tamarind and rhubarb (Chinese) and it's not the same as ordinary rhubarb - it's a known laxative. Anyway, they do work and I can get emptied out if I take one. I'm just scared of making my system dependent and then unable to go at all, so I ration them. It's very hard not to become a 'bowel bore' - which is why this website is such a godsend! Do you feel uncomfortable a lot of the time? Glad to hear things are better than they were - I think it's important to stay positive and keep visualising the bowels working well - 'as we think so do we become'....

Best wishes

Daisy77 profile image

Do you take a magnesium supplement? I take mine at night... Works wonders.

Eleanor91 profile image
Eleanor91 in reply to Daisy77

Sorry only just seen this! I tried magnesium citrate once but did nothing except make me massively bloated, though I only took one fairly large dose at night, I didn't persist with it. I really hate feeling bloated, the constipation is terrible enough let alone having a huge belly to remind me and everyone else of it :(

Daisy77 profile image

Try some oil of peppermint at night. That should do it.

Eleanor91 profile image
Eleanor91 in reply to Daisy77

Thanks Daisy, how do you take it and what dose?

Daisy77 profile image

I take 1 200 milligrams capsule at night if I'm bloated. Have you tried aloe vera colon cleanse? I am doing it at the moment. It is very gentle. again capsules from the health food store.

motoe profile image

Hi Eleanor, I've a similar story except I can pinpoint the exact day my symptoms started - 14th July 2009. I know this because I was on holiday and developed food poisoning and have been suffering with IBS-C since. I know what it's like to have very infrequent bowel movements. I had a transit test done in hospital and my gastroenterologist said he hadn't see as bad an X-ray in 20 years! Unfortunately for me laxatives are a way of life. If I don't use them I get faecal impaction and lots of pain whereas if I do take them I'm no longer constipated but will still have pain. Over the years I've started to develop more gastrointestinal symptoms - gastritis and a hiatus hernia. The reason that I got treatment so early is there is a strong history of Ulcerative Colitis in my family - my mum and aunt have it and my great uncle had it before he died of bowel cancer. Luckily it's not Ulcerative Colitis but at the same time I wish there was better treatment for IBS, something that actually worked! Let me know how you get on with the antibiotics! I've a feeling mine is caused by a pathogen as it happened straight after food poisoning, although I doubt after 7 years it would have much of an effect!

Eleanor91 profile image
Eleanor91 in reply to motoe

Hi motoe, I'm sorry to hear of your troubles, but I can understand. I take laxatives daily now too, things aren't perfect as long as I'm taking them I can go to the toilet pretty much every day and feel somewhat normal. Doctors aren't helping at all, I read the book "the second brain" by dr Michael Gershon not long ago and he states that most physicians, with patients like us who have chronic constipation with no known origin, actually despise us. This is not our fault whatsoever and is incredibly unfair but it's made me scared to go to the doctor, I don't want to be labelled like that. Anyway, it's interesting you state you've been unwell since food poisoning whilst on holiday, many people that I've spoken to have encountered permanent constipation due to the same thing - it's very common. However I did not get food poisoning or get sick - there wasn't really anything that seemed to trigger it besides the travel which is really bizarre. Nevertheless I do think it either has to do with a pathogen or it's an autoimmune response from the body. The only thing that seems abnormal with me on paper is white blood cell count, it's very low, I have neutropenia and the doctors don't know why and nor do the care! So much speculation from me, I never stop thinking about it. I hope we find an answer soon! And P.S my dad suffers from ulcerative colitis too, he has a colostomy bag now. My mum had small bowel cancer, she died young. Can't help thinking my chances aren't great.

motoe profile image

That's terrible to say they despise us, although some doctors I've definitely had that impression from. I think the problem is there isn't that many treatment options available to them or that they know of so they're limited as to what they can actually do for us. I know lots of people suffer constipation when traveling so maybe that was the trigger for you? A white blood cell count doesn't sound good, surely that leaves you more open to infection? I'd push them to find out what's causing it. With me I always have low vitamin B12 levels but they've never investigated why and they just push vitamins on me. Strange we both have relatives with UC. I'm sorry to hear about your mum but we can't live life thinking what if! I suppose having IBS at least we're more aware of our symptoms and if something happens hopefully we can get treatment early.

Grannycake profile image

As I have said on another post,change to soluble fibre healthy eating,drs will insist giving insoluble fibre,always made me worse

Instead of counting calories these days they should be telling people to count fibre,most foods are labelled with fibre content. It's surprising how little people eat,solved my problem

simplydawn profile image

Has the FODMAP-diet been suggested? I have tried it, along with eating for my blood type. I have yet to pin point a solution. Neither has the doctor.

Lulububs profile image

Hey eleanor

So strange isnt it how it just come on like that?

I have ibs c , have for about 20 years. Just got used to the pain of not goin for two weeks at a time until i was traveling and was in amsterdam and id had a pancake and within 5 mins i was in pain.

Never had this before?

Turns out my body was telling me it did have a intolerance to gluten and had been building up for years and that was the final straw! Never been able to eat it since.

I then had a gastro app and was told this is what happens intolerance wise it builds up also i needed to make my gut flora healthy to fight it, so I started taking probiotics ( strong ones) digestive enzymes, peppermint oil. Also most people that are IBS C are magnesium deficient so I started taking them .

Now year down line i have no stomach issues, i still dont eat gluten, yeast or dairy as that my choice and take the supplements and it just went and I POOP EVERYDAY!!!! So mayb try this... it could b ur gut got unhealthy

Eleanor91 profile image
Eleanor91 in reply to Lulububs

Hello lulububs,

That’s excellent to hear that you’ve reversed your ibs-c. I have been tested for gluten and lactose intolerance which both came back negative but i believe you can have a sensitivity to both things that builds up and eventually becomes an intolerance so who knows... I haven’t tried completely cutting either out before so that might be an option 😊

Lulububs profile image
Lulububs in reply to Eleanor91

Also the healthy gut bacteria is a good one to start doin! I had candida/sibo through the copious amounts of antibiotics they gave me it just killed my good flora and it was awful i went from c to d and back i never knew quite what i was gona b like each day.

So i really concentrated on treating my stomach, i had lots of probiotics and digestive enzymes, garlic tablets, oregano tablets. Ate lots of spinach and brocoli and fish and chicken and good stuff. No gluten as it bines and clogs the colon. No dairy. More lactose and went to soya milk. No sugar and no processed food!

After about 2 weeks i noticed difference and after 6 i was so much better i had lost 2 stone where i was so ill , i put half stone back on and i just felt healthy.

People actually remarked on my skin and how healthy i looked.

People forget that if u have a bad leg u treat it but u need to have a healthy gut to, if u dont it can really b a bad deal.

Intolerances dont always show in tests they generally build up coz ur not allergic , so i am allergic( severly to shellfish) so i have a epi pen and ive know that since i was a child but a intolerance builds in ur system over years u prob know u got it as ur have a bad gut every now and again but u put it down to “oh funny stomach” but it not it ur body telling u “ i dont want that” but u keep feeding it that and one day it will just totally reject it and ur get ibs!!! Ibs is generally ur eating something it dont like, ur stress levels or a unhealthy gut flora.

thankful7 profile image

Hi Eleanor91,

Just wanted to share my story with you as it has been very difficult for me to find others sharing a similar narrative or experience. Do you know any other places I can find stories or information about similar experiences?

I accepted a job on a coffee farm in Moshi, Tanzania (near Kilimanjaro) and over the course of the first couple weeks there watched my BM habits change from twice a day to nothing. Absolutely nothing... I managed my symptoms for the first month in Tanzania with Enemas and bottles of Lactulose I could get in Moshi, but didn't have access to harder laxatives and eventually became impacted. 17 days passed without me having a BM, and when I went to the emergency room at the Moshi clinic they suggested surgery! There was no freaking way I was having intestinal surgery in Africa! My parents and I got a $700 flight and I was out of there... It's a shame too, because that was an awesome job and I actually liked it there in Tanzania. Didn't even get to climb Mt. Kilimanjaro and I was living basically at the trailhead.

That was two years ago, and my life has never been the same since. I can't count how many bottles of Magnesium Citrate I have needed for rescue (one every 3 weeks would be over 30 bottles, which sounds like too many to be healthy - but maybe an accurate number). I have been on Trulance, Amitiza, and Linzess. Taken Flagyl, Mebendazole, Triclabendazole, Albendazole, and Praziquantel. Had two transit studies, a colonoscopy, endoscopy, multiple ultrasounds, x-rays, and ct scans. Blood work and stool tests. Read every book I can find on Irritable Bowel Syndrome. I read The Body Ecology Diet, and strictly followed (follow) multiple Elimination Diets including Low FODMAP, Dairy Free, Gluten Free, The Body Ecology Diet - I have now totally cut out all sugar, fruit, dairy, red meat, nightshade vegetables, and gluten completely for the last two months. My diet consists of water, non-starchy vegetables, fish, green juices, coffee, eggs, rice, and occasionally gluten free pasta. I keep a diet of everything I eat, and drink 24 oz of celery juice, and 32 oz of water every day.

I was in the emergency room last week for impaction, and keep pressing my gastroenerologists (on my fourth), viral infection Dr.s , and rectal surgeons to help me understand how I went from "two BMs a day" to "no natural BMs ever" over the course of one week. Also how my body doesn't seem to be healing itself of this bowel issue, rather, it seems it is getting worse. I am so desperate to find a solution... My best theory is infectious bacteria caused nerve damage to my intestines. I am not sure if the bacteria is still there, but anal manometry, and more bacterial labs are my next steps.

I am very interested to learn if anyone has discovered a natural way to exercise/strengthen the muscles or nerve impulses of the intestines, and if that has helped bring any relief or recovery from similar symptoms. Fecal transplant is very interesting as well - I am hoping to convince my Dr. to try that before anything surgical.

Thanks in advance for any responses, insights, or feedback.

Are you still seeking answers or have you made any new progress Eleanor 91?

Eleanor91 profile image
Eleanor91 in reply to thankful7

Hi thankful7,

This sounds a lot like my situation. How long were you in Tanzania before you started noticing these symptoms? Mine started as soon as I landed in the UK, not sure if it was the huge shift in time zone or an infection I’d picked up from eating something on the airplane or from the food at Singapore airport or maybe a combination of everything but my bowels have never been the same since. Like you I have tried everything and it’s difficult going from being like clockwork to nothing! But in saying that the last year has been a little better, I can have small bowel motions mostly once a day but my transit studies are still slow. I use magnesium citrate roughly once a week. What did your transit studies say? The first few years were much worse though for me. Psychologically and physically I suffered terribly. I believe it’s autoimmune and/or bacterial but trust me I’ve done all the research in the world and seen many specialists and spoken to many people and there is no clear answer. FMT could maybe work for you, I’m not sure about where you live (where do you live?) but in Australia FMT costs roughly $11,000 out of pocket.

I only even found one other lady that had her bowel problems start in the same way as me, going from normal to no movement after travelling overseas. I’ve spoken to many who have colonic intertia but most of these people have had issues with constipation their whole life, it just seems to get worse as they get older or after giving birth, OR the person develops it after getting sick with gastroenteritis. Our case is rather unusual I think!

I’m at a loss as to what to do and don’t want my bowel removed (it’s not bad enough for that anymore) but if you’re getting bowel obstructions regularly even with laxatives and medication, surgery might be an option for you. But if you can, try FMT. I’m sorry I don’t have much more to offer - it’s an absolute nightmare :( if you haven’t found it already, check out inspire.com. There is a page for motility disorders an I get a lot of support and advice of other members xxx

Ella113 profile image

Hi Eleanor & all other IBS C Sufferers reading this.

I too experienced a sudden IBC c overnight in October 2017. Since, I have had every test under the sun by my gastro doctor - all which came back negative. Even the dietician was happy with my diet.

He suggested to me that I take a new drug called Prucalopride, after I’ve found little relief with other laxatives. Prucalopride works on sending signals to your cut to produce bowel movements. I can honestly say it’s the best thing I have tried so far. For about 3 months I was going regularly just like before.

However only downside is that Prucalopride has a short lifespan and stops working on the receptors once they are used to the drug. You then need about a month off of them (which I took Constella, which I hated too) and then start retaking Prucalopride and the positive results start over again.

Perhaps worth looking into. Hope you all find some relief soon as it really does take over your life and it is hard for family or friends to understand x

marshamclean profile image

I was literally born constipated. My diet is the same as my mother’s and she has very loose and regular bowel movements. I tried Heather’s fiber found on Amazon for those with IBS. Found it very helpful. With the necessity of pain relief in my life, Things have become very complicated. Also, as stool backs up at exit, a stool found on Amazon to raise my legs to degree of natural expulsion used by those w/no toilets, I have found lots of help.

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