IBS taken over my life

[pinky987]

Since the start of July I’ve been having problems with my bowels. GP says classic ibs and prescribed mebeverine. I was struggling with diarreah when I went to the GP which did stop after taking the medication but my bowel movements kept troubling me.

I then went to a private dietician who I am working with through an elimination diet but still my bowel
Movements are erratic.

I have called the GP several times to be told it’s ibs find your trigger and dh rang the other day as I am so down about it and gp advised he thinks it is being caused by stress and to go to therapy but no other help given. A nurse I spoke to said you can’t carry on like this and referred me to the hospital but the sent back the reply no appointments available which the gp has advised is because I have no red flags and I am of non importance to the hospital.

But how can I get on with my life when I constantly need to go to the toilet? This morning I have had three bowel movements already and some days I can have up to 8. When I went food shopping yesterday I had to rush home as I thought diarreah was coming but when I got home I didn’t need anything.

I am now no longer going to work as I can’t bear the drive for fear I’ll need a toilet, I want to start up at the gym again but again have the same fear. What with lockdown as well I have been mainly just in my house for months now. If I go out it will be an achievement if I’m out more than an hour.

All this is bad for my mental health but how can I help myself when I need the toilet so often?

I don’t seem to be able to find anyone who is willing to help me at all.

IBS shouldn’t be a first diagnosis but one that is made after other causes have been ruled out such as colitis, crohns, coeliac, infection,etc. You’ve had symptoms for just about 2 months and I think it’s time for some investigations and a referral to a gastroenterologist . I don’t think your GP is following the guidelines. After this length of time you should have been offered an ultrasound and a colonoscopy I’d have thought. I would ask for a referral.

Around 20 years ago I went to the dr with constipation and he said it was ibs just from symptoms so from that this dr says it is ibs. We have asked for a referral but the dr advised I have no red flag symptoms so the hospital will not see me this year as I am of low importance. He said he would write a letter if we wanted to go private.

The dr said that they have done a blood test which would show inflammation so it’s not an ibd and they don’t need to do anymore tests.

I also think he thinks I’m a hypochondriac as I called again this week as I have some piles that are hurting me and he kept telling me it wasn’t bowel cancer. I advised I never thought it was but I just wanted some cream/suppository as my bottom hurt.

That sounds tough - I have something similar, but not so bad.

Have you tried Immodium? I take it preventatively on days when toilet access is difficult. I also know the locations of all the public toilets in my city, including those in shops - you mentioned you were food shopping; does the supermarket have a toilet?

It's still worth you trying to get a diagnosis - have you been tested for coeliac disease?

@bathorshower I do have Imodium to take but I get confused whether to take it as some times I just pass tiny bits of poo every hour for the day rather than diarreah and I am not sure if they are constipation but they are re not hard to pass.

I have been tested for celiac and that was negative.

The toilets were closed for cleaning at the supermarket yesterday when I was there so I couldn’t use them.

Hi OP. I was on two packs of Imodium per week until I finally got someone to take me seriously. See if you can get a prescription for a bile acid sequestrant (Questran or Colestid). I had fantastic results almost overnight.
And good luck, I know how tough it can be. My morning commute became a nightmare and I spent my life toilet-mapping as there was no way I could wait.

@paap1975 thank you. Its getting them to take it seriously that is so hard. I really tried to get them to listen but I keep getting passed onto the same dr who just tells me he has ibs so knows what it’s like. My dr also won’t see anyone in person unless you have a red flag symptom.

I even got dh to speak to them to hope that might make them listen more but it didn’t.

I understand, when I told the specialist how long I have been struggling for (a year) he said "is that all?". I don't think there is much understanding of how debilitating it can be, not to mention embarassing!

I agree that IBS should never be the first diagnosis.

You really should be tested for other things including ** https://gutscharity.org.uk/advice-and-information/conditions/bile-acid-malabsorptionn**/*

A daily sachet of salts has transformed DH's life

Thank you. I will try to speak to a different dr next week and mention this.

I just don’t understand how they can just leave you suffering with no options at all.

Absolutely agree with suggestions above. You should push for referrals.
Meanwhile do take the dietitian’s advice seriously. As food group elimination may eradicate, or at least ease the severity.
Gluten, wheat, fruit glucose, lactose etc the list is endless. Eliminate and try everything out.
Also identify the stress source. Meditating doesn’t work unless you know what is causing you stress. Stress from the daily grind, your significant other, family in law, again the list is endless.

@roastedsaltedpeanut thank you. I have been following the elimination diet very strictly I was just hoping that it would give more
Improvements now, I’m probably being impatient.

Your right with regards to the stress finding the issue. One issue is that I cut out so much food I was not eating enough each day and I know that definitely affected my anxiety levels.

They might not have carried out the correct blood tests, but even if they have, a negative test doesn't rule out IBD. I would ask for further tests inc a stool sample. www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/tests-and-investigations-for-ibd

@EveryDayIsLikeMonday thank you I’ll also mention this to them. It’s just very difficult when they are so insistent that it is ibs but as noted they haven’t ruled out other possibilities.

So sorry you're going through this. I was ill for years and never taken seriously, so I understand how you're feeling.

I still remember when the doctor finally did blood tests for coeliac disease amongst other things. She called me to say my results were back...normal as expected...but the coeliac disease was still outstanding. However I shouldn't worry as she knew it would be negative.

The next day she called me to apologise because my results were very much positive.

Please push for another doctor...when you find the right one it will make such a difference. And if you can afford it, go private because they will be more thorough and work to different less restrictive limits for diagnosis.

From what you've said about how many times a day you're going to the toilet, it sounds like colitis.

Good luck and I hope you find out what's going on soon

You could also ask them to follow the NICE guidelines:

cks.nice.org.uk/topics/diarrhoea-adults-assessment/management/chronic-diarrhoea-more-than-4-weeks/

Agree with PP that it sounds like they've jumped to IBS very quickly, I suffered for 4 years before finally getting a diagnosis. Celiac, crohns, colitis, diverticulitis all ruled out first. Sadly it does seem that even amongst medical professionals IBS isn't really taken seriously, for years I was fobbed off with 'must be a bug' and 'you just have a sensitive stomach' before seeing a different GP by chance who finally took me seriously and got the ball rolling with tests.

It's tough when you feel like you have to keep nagging and pushing for more but do keep pushing, you deserve better care.

IBS should be a diagnosis of exclusion - it's basically a diagnosis of "we don't know what's wrong with you"

Do you pass any blood or mucus? Do you have morning urgency? If so, that is classic IBD symptoms. I'm assuming you've had CRP (inflammation markers) that are ok which is why GP is saying its not IBD. It is possible to have raging IBD with normal CRP levels. If you think it sounds likely ask for a faecal calprotectin test (and if the GP fobs you off, point to the NICE guidance).

Also, celiac, again have you just had bloods done? They are also not that accurate and the only definitive test is biopsies done via endoscopy.

Absolutely agree about the stress response adding significantly to the complexity of running the food elimination diets

It is very difficult to distinguish between an upset caused by good and one caused by stress. You might a lot of false positives on foods which are actually due to stress.

Likewise, you make be able to tolerate a wider range of foods when you are not quite so stressed.

Good luck.

What's your diet like OP? Do you eat or drink anything with artificial sweetener by chance?

Have your tried fasting with just water (and black coffee if you like it) for 1 to 2 days and slowly introducing small amounts of food each day. 1 small meal of egg and avocado perhaps, followed by a light meal of whole foods later in the day. Some fibre, but not too much. Your nutritionist should be able to advise.
Look into gut health and prebiotics/probiotics. If not already, you could introduce a daily multivitamin vitamin plus magnesium, potassium and ensure your vitamin D level is good.

I was very similar to you when my symptoms first flared a couple of years ago. My GP ruled out coeliac disease because I said that a family member has it and when that came back negative I was diagnosed with IBS. I have actually finally been referred to a gastroenterologist but he also seems happy to stick with the IBS diagnosis without ruling anything else out though he has agreed to send me for an abdominal ultrasound. It seems confusing to me that IBS is labelled a diagnosis of exclusion when so many of us seem to be diagnosed without other issues seemingly being excluded.

So I tried exclusion diets (I assume you’re doing low FODMAP at the minute?) which did identify some triggers for me but definitely didn’t fix everything. I do also find my symptoms worse when I’m stressed/anxious but, again, that doesn’t explain all of it because I still have symptoms when I’m not stressed/anxious as well. I have no magic answers for you I’m afraid but I do go through flares so it’s perfectly possible to do all of the things that you want to do while going through a good period. You should be due a good period soon! I’ve found the things that were really key to getting me out of my last flare were giving up smoking and eliminating all caffeine, alcohol, onion, garlic, cruciferous vegetables and spices. Also not eating after 8pm has helped a little, though that has been more helpful with my reflux than my IBS I think. The other thing I did was work on daily yoga at home and I started attempting meditation to deal with the potential stress triggers (I’m patchy at best with meditation so I’m not sure how helpful it necessarily is for me but I’m too scared to stop anything that could possibly be helping!) and trying to get a good, regular sleeping pattern sorted as well.

I would try and speak to somebody else if you can and see if you can get a gastro referral.

I've waited 2 years for a gastro appt at my local hospital. GP can't do anything other than talk to me about it. They say classic IBS, I have to listen to them. Hospital say I'll be seen between May - Oct 2021. It's ridiculous.

I had this and was referred to a gastroenterologist. He said that for women my age (I was 25 then) there is a presumption that it is IBS. However, he still did an colonoscopy with biopsies to rule out anything else. Only after that was clear did he give me the diagnosis of IBS. For me the symptoms went away about six months after I quit a mental job and stopped having so much milk (I used to have milk and cereal as a second dinner at about 9/10pm at my desk)

I had health insurance through work so GPs referred everything to a consultant and consultants were very liberal with tests.

However, for the NHS can you look up NICE guidelines for IBS and check what GPs are supposed to do? Or say something to PALs which I think are an NHS watchdog - type thing.

Practical suggestion: just give up caring about when and where will you have to go and find a toilet.
Having had crohn's for 20+ years, this is the one piece of advise I got early on from another patient saved me so much mental stress.
The other advice was to have a very good sense of humour!

1. Don't stress! there is always a toilet somewhere. Even if there is a sign, physically the toilet is there. You'll just get told off after.
2. absolute worst case scenario: you shit yourself. That's why you should always have another underwear and jeans and cleaning stuff with you. And once it happens you see that the world doesn't stop and usually noone notices if you are discreet. Also if you are well prepared chances are it will never happen. And another also: once it happens you're stress level about it drops to almost zero.
3. keeping a mental map of toilets will reassure you.

I used to take Mutaflor, which is a pro-biotic specifically for crohn's patients. It might be worth looking into it. It did wonders for me.