IBS

[Samaritan1]

It's getting to the point where my IBS is starting to affect my life, in particular work.

I've had time periods over the past 15 or so years where it has been particularly bad, but since my son was born 18 months ago it is far worse. My periods have become very heavy since the birth and for that week each month I am having to run to the toilet at least every 2 hours I would say.

Any small amount of stress results in me being on the loo constantly, not great as my job involves presentations, deadlines etc.

I've been to see the gp probably around 5 times regarding this over the years. I've been told to keep a food diary and to try meditation etc for stress, but no other help offered.

I have close family history of crohns and ulcerative colitis (mum, grandmother and maternal aunt) so I'm worried it could be something more, but my symptoms are nowhere near as bad as theirs.

If anyone has any practical tips that could help I'd be very grateful. Cutting out foods etc hasn't worked and avoiding stress is almost impossible.

Hi, thought I'd chip in here. For years my gp diagnosed IBS and prescribed buscopan until I got to the stage where I could take it no more. I have anxiety and that is related to the fear I'll need the toilet whilst out so I went to see a specialist on my company health scheme. He carried out a flexible sigmoidoscopy, which I hit the roof with and needed a second lot of medication to relax me - he said I must just be super sensitive in there - even had pethidine and was wide awake loo. He took a biopsy to check for coeliac etc. He then sent me for a very underused test called a SeH-CAT at my local NHS hospital. You have to go to nuclear medicine, take a pill and have your stomach x-rayed and then go back 7 days later and be x-rayed again to see how much has been absorbed. Turned out I have a "mild but significant" bile salt malabsorption which he said about 50% of people given the IBS diagnosis actually have. He also said that buscopan and colofac are next to useless unless you 100% have IBS. Sorry for the essay but worth pushing for some extra tests.xx

That's really interesting Poin86 and glad this doctor was able to help you. Can I ask about your symptoms? did you feel ill 'all' the time or did it come and go in phases?

I get the anxiety also. it's debilitating as you can't enjoy being out. However I actually feel well just now and don't know why ( I think I spent a lot of time trying to pinpoint triggers, especially in a bad phase but end up nowhere really).

How long did your bad phase last Mystery? I suddenly developed IBS symptoms after the birth of my second baby nearly 5 months ago. The most recent doctor I've seen ordered a stool test which showed 2 different bad strains of bacteria - one of which doesn't usually cause symptoms in small amounts (it was a small amount) and the other does cause diarrhea but doesn't usually need treating as body will usually clear by itself. Doctor decided to treat them both so I'm on two lots of strong antibiotics. I really hope this works although an perplexed as to why my body didn't clear the bacteria and whether this can explain all my symptoms (constipation, bad gas and diarrhoea) or just the diarrhoea. Either way this is such a miserable and embarrassing problem to have.

I gave up milk and cream, for a week. It's disappeared completely. Could you try this? Even if you just buy the lactose free milk?

I do go through phases where I just feel pants all of the time. I'm a lot better now. Would have diarrhoea at least 3 times a week and now rarely if ever get it touch wood as I'm on medication for it. Stomach cramps, diarrhoea, (sorry if tmi) a jelly type discharge when I poo, gurgling stomach, visible skin twitching where my gut is spasming, feeling sick, bloating...all common symptoms for me!
I dont have milk but do have a bit of chocolate every now and then but try to stay as dairy free unless i can take my lactase enzyme tablets (from H&B - well worth it if you do fancy an ice cream!!)xx

I feel your pain, OP, my ibs (if that's what it is) came on after childbirth and coupled with a third degree tear would leave me housebound if it wasn't for careful eating and imodium. It's rubbish it really is. I wouldn't wish this on anyone.

Hi, i am another one who has suffered with Ibs all my life but about 5 years ago was also diagnosed with bile salt malabsorption after a SehCat scan. I have constant diarrhoea and eat Loperamide like sweeties! I was constantly told by doctors that there was nothing physically wrong with my bowels for years but i just knew there was, to have yellow runny poo all the time is not normal!

What can they do for you, Hyacinth, if you have bile salt malabsorption?

I have some tablets Colosevelam, that i can take when it gets very bad, but i cannot take them all the time as they stop my other medications from being absorbed in the gut. So i just try to control it with Loperamide mostly

Shrunkenhead how long ago was your birth? Mine also came on after childbirth and I also had a 3rd degree tear. Mine was 5 months ago although now looks like it may be an infection so taking antibiotics and hoping they work. It's so miserable - it really is.

What medication are you on poin86?

Also ask about a small intestinal bacteria overgrowth (SIBO) test. Something like 40% of people who think they have IBS actaully have SIBO that causes their symptoms, once given treatment it clears up

The test is taken over a period of time, a day, where you are given a liquid to drink and then asked to blow into a tube to sample the gas as the bacteria use the liquid to produce a certain type of gas.

Simmi1 the birth was seven years ago and has got progressively worse. I had blood tests for celiac etc and a colonoscopy revealed nothing but a few ulcers (which no-one seemed concerned about) I also had a barium xray which revealed nothing.
The tests on my anal sphincter also say it'sworking properly....all I know is prior to the birth of my child I could hold on and now I can't and I'm v prone to diarrhoea which makes it worse.

Oh no sorry to hear that shrunken. Have you found any food help or make it worse? I'm finding at the moment that this physical problem is affecting my mental health - has anyone else found that? I feel like I'm pretending to be happy infront of people but an so upset that I have this problem that no one seems able to diagnose/fix.

I'm also on colosevelem and take my medication around this - i take antidepressants before bed and when i was on the pill, i took that at the same time so just took my morning dose of 3 tablets with breakfast. Even if you're getting 3 (if your on a dose of 6 a day like me) a day Hyacinth if you take at lunch time - is that possible? I'm so much better than i used to be!! Got mine through my consultant at first and luckily my GP changed to an NHS prescription as it was over £700 each lot otherwise!!xx

It affects my mental health in the sense that it really gets me down, not being able to eat out with friends, stay at others' houses or socislise unless I take at least 8 loperamide. In order for me to live my life I restrict my food intake as eating seems to make me need to go. So, when I'm working I dont eat until I get home or in the evening when I know I don't need to leave the house.
As for certain food helping/making it worse I can eat a cheese sandwich one day with no ill effects and another day I'll be running to the loo... There doesn't seem to be any pattern!
I've had to tell my close friends (embarrassing though this is!) so they understand my fears of travelling on trams etc (no toilets!) or sharing cars onlong motorway journeys, might get stuck in a traffic jam (no toilets!).
My mother helpfully tells me it's all in my head and I'm just too stressed since becoming a mum......

Yes I've been told mine is stress related too - having the baby and I've also moved country. However I don't think it is that. Were you fine before the baby shrunken? I was completely fine before then. Mine has also got worse. I may only need to go to the toilet 2-3 times a day but I always feel uncomfortable like I have diarrhea and my insides are falling out. It's really miserable. Eating also makes me need to go - especially in the morning. I tend to be ok in the evenings at the moment. I can't even imagine going back to work feeling like this.

IBS is still a bit of a mystery for doctors sadly. But it should only be diagnosed when all other probabilities have been ruled out. This involves lots of tests, especially to rule out crohns, ceoliac, thyroid problems, etc.
The best thing would be to get a referral to a gastroenterologist, for a colonoscopy but not many gp's refer.
If all the tests you're offered come back clear there are things you can do.
The low FODMAP diet (google it) can really help.
Also CBT.
There are new studies coming out right now which might blow your mind - which show that the gut actually plays a much bigger role in the body than we first thought. If you can, download or buy 'gut' by giulia enders. I was sent a copy and it's fascinating.
Anyway, I've had IBS for about 10 years now so I know exactly how you feel. I'm a bit lazy and don't stick to the low fodmap diet but I know a lot of foods that can trigger 'attacks', like dairy, nuts and high fibre foods.
Linseed can help, or pro biotics, green tea, peppermint capsules (which can be prescribed)
You could try amitriptyline which is for nerve pain usually but really helps some people with IBS! It worked for me but I had to stop due to heart problems.
I hope some of this advice will help you, I know what a pain it is (literally) especially with work.

Hi Realitea, I've had the colonoscopy (privately) and have been on low FODMAP for a while now but nothing seems to help. I've tried everything other than the drug. How did that help? I don't really get stomach pain - it's more constant discomfort in my bum!.

Sounds like it's definitely ibs then! I saw a private gastroenterologist too and was just told to have some loperamide every day.
The amitriptyline slows down your system. It's an old fashioned ssri so there are possible side effects such as tirendness, dry mouth, feeling a bit odd for a couple of weeks.. But then it works. It really does! It's a very low dose that's needed.

Simmi1 I was perfectly fine prior to giving birth. If I needed to go I could hold on like anyone else, even used to avoid public toilets, going at work etc as prefer my own bathroom. Now I spend my days toilet mapping!

Sorry only just noticed this again - not showing on my threads I'm on. I originally had tests for Crohns in my mid 20's as I had a lot of problems. After a barium enema, barium meal & lots of blood tests they concluded the results were 'inconclusive' & I was discharged & diagnosed with IBS. Fast forward 20 years & after years of problems I ended up in hospital for 3 weeks & was finally diagnosed with Crohns after a colonoscopy & CT scan. I needed surgery last year due to narrowing causing an obstruction but I'm now in remission & really well. My story is extreme but I do really wish I hadn't accepted the original IBS diagnosis & had pushed for more tests.

Oh dear that sounds miserable shrunken - have you tried physio? I think control issues are normal after a third degree tear but physio is supposed to help.
Thanks Realitea will ask about drug. I'm so miserable at not being able to live my life as I used to. At first I thought it was probably a temporary issue that would fix itself but now 5 months down the line I see that's not happening. I'm so angry this has happened and nothing I try seems to work. My bowels are ruining my life!

Simmi have you seen a gastroenterologist? I have mild bile salt malabsorption but mine is because I have had my terminal ileum removed - at the moment I control mine with my diet. I'm always wary of any diagnosis of bowel issues by GPs & I really believe anyone with long term bowel problems should be referred to a Gastroenterologist. Please push for a referral even if you've had a colonoscopy. I'm not trying to frighten you but I do think you need to see a specialist, even if it is just to put your mind at rest.

Yes I have - he did blood tests and colonoscopy and sent me in my way when nothing found. I then saw another GP who ordered a stool test which found a parasite (blastocystis) and also some food poisoning type bacteria. I'm on two sets of antibiotics for the last week but my symptoms still continue! ☹️