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.

@Belindanomates yes I do have morning urgency as soon as I wake up, I also have mucus but no blood.

I didn’t know the morning urgency was a symptom of ibs.

You have had diahhorea for over 4 weeks , morning urgency, a change in frequency of bowel movements and mucus . Under the NICE guidelines you should be investigated further .

I think I would speak to the practice manager and say you will make a formal complaint if your request for a referral is turned down again. It’s not enough to use a blood test for inflammation markers and for inflammation and on the basis of this go go straight to a diagnosis of ibs. It may well be that is what you do have but you absolutely need to know if there is another cause for your distressing symptoms.

@DianaT1969 I am only drinking water at the moment. At the beginning I ate just rice for a few days to settle the diarreah. However now I am following what my dietician says and we are trying to slowly increase the fibre that I am eating.

@PoxyPixie thank you. I will try to get a referral. I am hoping that this will all flare down soon and I wonder if the anxiety it causes is now what is keeping the symptoms going. I do mediation however I have not been sticking to doing it everyday so I think I need to do this. It is the fodmap diet I am following but also eliminating egg, wheat,dairy,soua,nuts and fish as dietitian did wonder if I had a food allergy either as well as ibs or instead of.

@turnthebiglightoff that is such a long wait, it really isn’t good enough.

@TheSunIsStillShining thank you that is good advice. I think you are correct that I need to just carry on doing things and just thinking there is a toilet available. I think it became worse that due to Covid I started to also worry about using public toilets in case I caught it from them.

@Steppingonrakes thank you. All I want is for them to take me seriously and carry out the testS necessary. You are correct it could be ibs but the uncertainty when you feel they aren’t really listening to you or testing is worrying.

I do feel for you, op. I had a bout of that some years ago which seemed to last forever. I stopped going out because of it. Honestly, I never knew I had so much in me.

I completely gave up citrus, wheat and gluten. Within a fortnight everything was normal. Then I gradually reintroduced a little wheat and gluten back into my diet and on the whole, have been OK. I tend to drink apple juice rather than orange but can have the odd orange.

There is a strong psychological component to IBS. I was in hospital last year and had terrible diarrhoea all the time I was there, even in my sleep! What's more I wasn't even eating. It cleared up when I came home.

Nurture yourself, op. You need to replace fluids and nutrients that you are losing with the diarrhoea and please do de-stress.

There's no cure but it can be brought under control.

@jessstan2 I was hoping for quicker results from my elimination diet as I have been doing this since the beginning of August. I keep hoping it will stop soon but I am also wondering if it is stress/anxiety keeping it going.

You need investigating further as others have said, but even 'just' IBS can be very debilitating. I've had it over half my life and it's affected everything. I also now know I have diverticula disease too after being told it was just IBS!
Do you have pain anywhere?
You need to know your blood inflammation markers and also have a stool sample. Mucous is a sign of inflammation.

I have suffered terribly from IBS for 30 years. Pain, wind, bloating, urgency and faecal incontintence.
The incontinence was the worst as I had lots of very embarrassing incidents and it would restrict what I did a lot. I could manage at home as I we have 3 toilets but holidays were very difficult and I was often confined to the house until mid morning.
My son has Coeliac disease and I was convinced I must have that but it was ruled out. I did go gluten free as a result of my sons diet changing and my life has been transformed. I cannot tell you what a difference it has made to my life. I now have normal bowels. I am very strict though. As strict as a Coeliac. Not even the smallest crumb of gluten.
I really would recommend everyone with IBS going gluten free. AFTER Coeliac has been excluded of course. You can get all your carbohydrates from other sources like GF bread, GF flour, rice or potatoes. There nothing particular in gluten that the body needs apart from carbohydrates.
Just remember to exclude Coeliac BEFORE going gluten free (OP I know you have this is in case anyone else with IBS is reading this).

Would I be able to ask the gp for my blood inflammation markers?

At the start of this in July I had a lot of pain which my gp said was colon pain as it was down my sides and even lying down to go to bed hurt. However the gp have mebeverine and then over the weeks this pain has gone. Now I occasionally have some gurgling sounds from my stomach and then just lots of bowel movements.

My dad does have celiac disease which is why the gp tested for that early on. Even though the test came back negative I have stayed eating gluten free as part of my elimination diet however I know my dad felt better within a few days of not eating gluten.

Christ IBS is dire. I had it very badly in my 20s and one of my sisters followed suit - she was travelling at the time when she had a massive flare up and had to poo in some very wierd and wonderful places (ie the Daintree Rainforest).

Both of our diagnoses were exclusion based, after tons of tests. Can you go private for the tests at least?

[quote pinky987]@Belindanomates yes I do have morning urgency as soon as I wake up, I also have mucus but no blood.

I didn’t know the morning urgency was a symptom of ibs.[/quote]
From what you've said, I would strongly recommend you request the GP do a faecal calprotectin test. Its the best non-invasive test for IBD (its just a poo sample) and its not expensive for the NHS so no reason to deny it. If your levels are raised, the next step would be a colonoscopy but I think GPs try and avoid referrals for these because they are more expensive.

Just to be clear, this would be to query IBD aka Ulcerative Colitis or Crohn's. Are you sure you're not having any bleeding? It can be brown as it comes from higher up the digestive tract.

I feel for you as I have suffered with my bowels all my life, but a year ago I started REALLY suffering, passing watery yellow stools all morning long. It was absolutely miserable, and a nightmare with the school run etc.

I saw a gastro doc and then had a scan and was eventually diagnosed with gallstones - my bile was all over the shop.

My gallbladder has gone now but I still have the bile issues and urgency HOWEVER...

Two things made a huge difference from day 1:

1. taking two Imodium at night before I go to sleep (this was advised by a very experienced gastroenterologist)

2. eating a 90-95% plant based diet (cutting dairy, meat and fish)

And when I do both of those things religiously I can live a semi normal life. Make a big fuss about it OP, it can absolutely ruin things.

My gp discussed having a stool sample to test for blood but then changed his is and said it wasn’t needed. He has also decided the blood test was enough for ibd but when I contact them next week I will ask for this test. I know the nurse did tell me a stool test for inflammation couldn’t be done due to Covid - I am not sure if this is the test that you mean.

I have seen on ibs groups that people are doing well from plant based diets so I will have a look when I am not on such a strict elimination diet.

Many GPs don't seem to know the diffenrece between IBS and IBD and dont carry out the appropriate tests.
Yes, you need to ask for your bood results. As others have said, you look at CRP plus your iron and vitamin/calcium levels. Request a stool sample for fecal calprotectin and a referral for a colonoscpoy. If you have health insurance, use it.

"Generally, CRP levels of 10–40 mg/l are found in cases of mild inflammation or viral infections. Severe active inflammation or bacterial infection will typically generate CRP levels of 50–200 mg/l, and very high levels of >200–250 mg/l are only found in severe conditions..." www.ncbi.nlm.nih.gov/pmc/articles/PMC1856093/

OP I feel for you. IBS can be a vicious circle.

I’d say my IBS is probably 80% stress related. It has a huge impact on your mental health as it makes you unable to trust your body, it can be embarrassing and there’s the constant worry of being caught short. Even if it’s never happened in the past! I find when I’m not stressed I can eat whatever I want!

Giving up dairy helped massively for me. I actually think most people suffering from IBS probably have some kind of intolerance to milk. I also like to plan. Most places have loos anyway and I have a little wash bag with some of that vipoo (I rarely have to go when out but tbh it makes me feel better to be prepared especially if eating out!). Colpermin the peppermint capsules are amazing as it’s not too strong but stops me having cramps/ going to the loo. Also it’s worth having Imodium in the house. I find it too strong and don’t take it regularly but it is great for when I really need to get on with my day without having to worry about ibs symptoms.

To be honest, since working from home I rarely have any symptoms but I know how much it can affect your life. There’s a few good accounts on Instagram if you are on there- theyummydiaries and I think ibsnutrician .

I also agree with everyone else get other things rules out. I had bloods and a camera done.. although nothing came back it had eased my health anxiety to know it is ‘just’ IBS.

Remember you are not alone and so many people are going through the same thing! Be honest about it with your friends and family- it will help so much and I wish I was sooner.

*thetummydiaries !

Hi OP......2nd what other posters are saying about you pushing for further tests. Have been there myself and it’s so tough to fight for help when you fell so ill and vulnerable. Serious conditions absolutely need to be ruled out which was what happened for me (& I’m grateful for that) but once those tests were done usual G.Ps just said IBS due to stress. I finally decided to get a private gp (£90 or so) referral to a Gastro who’s first step was to send me for a SECHAT scan which tests for a very under diagnosed condition called Bile Acid Malabsorption. Symptoms are same as IBS but most G.Ps have never heard of it. Can be medicated and a low fat diet really helps. I still have flare ups and painful days (or nights!) but my life is so much better now I know what’s wrong and so have learnt how to manage it. I’ve got my busy life back!! Suggest you google Bile Acid Malabsorption/Guts Charity for more info just in case that’s what you have! Good luck!

Thank you all for your advice it is really appreciated.

I am going to look for a private gastro I think as the battling with the gp is so hard and the wait times will be so long. I’m not sure if I will be able to afford all the tests private but I think I will feel better if I have someone actually listen to me.

I am just so tired and fed up of feeling like this. As soon as I wake up every morning I have to rush to the toilet and it all begins again for the day. How I would love to just think let’s have another 10 minutes sleep and go back to sleep.

They can (and should) send a stool sample for calprotectin levels which is an indicator of inflammation in the gut. Blood inflammatory markers aren’t so reliable in gut problems. That would be a start at least. Mucous is not generally part of IBS.

If you can get an initial private appointment then they can request the tests through the NHS.
The bloods you've had should have your inflammation markers on them, assuming that was part of the test, so just ask what your results were.
Try peppermint tea for wind and grumbles, and Buscopan can help with cramps.
Pain in your sides, particularly left side could be diverticula disease. When it flares up the pain can be severe.

I have presumed IBS and triggers for me are stress, wheat/gluten and hormones - I'm worse at certain times of the month and was loads better when pregnant and breastfeeding.
When I had my worst flare up liquid iron supplements helped - I was breastfeeding a 5 month old at the time and I think all the diarrhoea meant I wasn't absorbing my vitamin tablets properly. Taking the supplements didn't affect the diarrhoea but I felt much brighter in myself and much less anxious.
Plenty of fibre helps me - brown rice, chia seeds, porridge, even baked beans. When I had the worst diarrhoea bout I was trying to eat the standard bland diet you would eat for an upset stomach eg plain chicken and white rice and with hindsight this was very low in fibre and probably made things worse.
I take the odd immodium if I have a loose motion but only occasional eg once a month max
I haven't pushed for further tests as my signs are pretty mild on a very low wheat diet.
Good luck!

I am currently eating a bland diet you describe and my fibre levels are low.

My dietician is working with me to increase the fibre which I have been doing this week and I am wondering if this is why last night I felt bloated and had a gurgling stomach in the night. It’s difficult increasing the fibre as I am scared this will mean more diarreah.

Be careful with upping your fibre as it makes it worse for some people. Too many experts churn out the same advice for all and what works for one won't work for another. Have you looked at the FODMAP diet? Lots of people find that helpful. Lots of high fibre foods can aggravate IBS.
I also agree with the above poster who says stress and hormones play a role too.

Yes I am following the low fodmap diet, I agree that it is so hard to tell of fibre makes it worse or better. I did eat less fibre but found I still had symptoms so now trying the dieticians way with more fibre increased slowly.