Would you feel rest assured after all of these tests?

[RedorangeyellowBLACK]

I am so very anxious about a health issues that I suffer from and despite having many tests because I still have the issues/symptoms, I can not rest assured all is ok. My dh says I need to.

I have had digestive issues from the age of 25, I am now, almost 50.
I had tests back then and it was determined I have IBS.

My symptoms have been up and down over those years and often controllable. However, over the last 5 or 6 years these symptoms have exacerbated and are now on a daily basis.
I suffer from upper and lower gut issues. Excessive gurgling of stomach, intestines and colon (will often wake me throughout the night), acid, awful nausea, burping, gas and discomfort, bloating and gas especially in the evenings.
Although over the years I have had a mix of diarrhoea and constipation, the last year I have been mainly IBS-D or very loose every morning as soon as I wake (weirdly, although loose, I often only go once a day but have all the other symptoms throughout the day).

I have had quite a few tests.
In 2019 I had a colonoscopy and gastroscope with biopsies (biopsies for h pylori, coeliac and various inflammatory markers etc), I had a US scan and CT scan to check the liver, gallbladder etc.
I have various blood tests and I do a FIT stool test every 6 months (purchase this myself).
This year I had a pill camera endoscopy to check the stomach and small intestines and another US scan to check upper digestive organs.
I have had a pelvic scan to check my ovaries and a CA-125 blood test earlier this year.
All have come back ok.

But because my symptoms are daily and I can not improve the morning loose stools, I live in constant fear something is not right.
I have spent a small fortune trying absolutely everything recommended for IBS yet can not find anything which will give me regular relief.
I am on the low fodmap diet, am gluten/wheat free, I do not have dairy, no alcohol or artifical sweeteners. I just live off rice and oatcakes, chicken, turkey, tuna and salmon. Very few veg, no fruits. Careful about my fibre intake. Only drink water or mint tea. It’s a boring existence tbh. Food is no joy at all.

Imodium stops me going to the loo and as soon as I stop taking them the IBS-d returns.
I have tried antidepressants (SSRI’s make the issues worse and TCA’s leave me feeling like a zombie), peppermint capsules, mebeverine, loads off the shelf products. Probiotics, kefir. The list goes on.
I exercise, do yoga and listen to hypnotherapy every day.
I have had various CBT sessions to try to help.
But still I can not drop the constant fear something is going on despite the tests that I have had.
My gastroenterologist says there is nothing more he can offer.
I just can’t live a full life feeling the way I do, the constant fear of having something wrong (especially now I’m hitting 50) and also fearing I’ll have a ‘toilet’ accident whilst out.
I now only go out if I absolutely have to.

Would you feel assured after having all of these tests that it was ‘just’ IBS?

The only thing I can think of is that you say you are gluten free so testing for celiac disease would be inconclusive. As you have to eat gluten in order to be tested.
You don't mention your calprotectin level but this would usually be checked via a stool sample before you have a colonoscopy
I have microscopic colitis. This was diagnosed due to high calprotectin (inflammation) levels and bowel biopsy. (It's called microscopic as it can't be seen by eye)

Sorry HumourReplacementTherapy I should have said that I was eating a fully gluten diet each time I’ve been tested (both blood test and the stomach biopsy).
I was frustrated with the gastroenterologist as I only found out after the procedure that he didn’t take any biopsies via the colonoscopy, he said this was due to the fact the colon looked fine with no abrasions or polyps but I only discovered afterwards they can only diagnosed microscopic colitis via a biopsy. Although all my calprotectin blood tests have come back ok so I don’t know if this means ok for microscopic colitis?

I've had loose stools every day for years, it's the norm for me and i worry when they're solid!!

Have you had a SeCHAT scan op? A fair amount of IBS-d is related to bile acid malabsorption. I’d say it would be worth pushing for that.

FatToFitPart3 I was due to have one in April but the hospital cancelled it. I rang last week to find out how much longer but they said they have a huge back log and have no idea!

ive had horrible gastric issues since having covid in July. Prior to that I had no real
gut issues, bar occasional trapped wind.
sunce covid I’ve had a few episodes of diarrhoea (3 x in 4 months but only lasting 3 days) , excessive rumbling/gas and reflux.
I’ve had colonoscopy (no biopsy either but my issue isn’t really w my stools although I’ve had 3 calprotectin tests, the last was normal), small bowel mri, ultrasound (I paid for this myself) and going to have an endo soon and will ask about coeliac. I am a private patient so it makes a big difference in terms of waiting times.
i have been really anxious since it all kicked off which doesn’t help so I really sympathise. I’m a similar age to you too.
do you have trigger foods? I can’t seem to pinpoint any!!

JustDanceAddict I am on several FB support groups for IBS. So many on there have said that they have had such issues after Covid. I had Covid in June and was bad for so long. It definitely does something to the digestive system. Did Covid affect your stomach at the time? I had awful nausea and an upset stomach on day 4.
Although I am very strict with my diet and have eliminated diary and wheat, in all honesty I don’t think food is the real issue as I could eat the same foods, at the same time every day and have different symptoms every day! I’ve kept a food dairy for 3 years and can not see a big connection.
I hope you find some answers and relief soon, having an unruly gut is miserable.

@RedorangeyellowBLACK i had diarrhoea at the tail end. I also lost my appetite throughout the week.
i actually haven’t felt too bad today, I’ve eliminated reflux causing foods and I’m on a ppi. When I feel ok it makes such a difference. It’s really affected my mental health too and I’m awaiting a call from the nhs counselling service. They must be inundated though.

I think what you need is CBT maybe combined with antidepressants for your health anxiety. I have suffered like you for years - had tests, went to see doctors, paid for things myself, but the CBT really helped me understand my thought and behavioural patterns. I had my last bout of health anxiety 3 years ago, before starting therapy. I am so much better now. All the best!

Your symptoms sounds similar to mine. I’ve had digestive issues since having the flu (badly) In 2019.
like you all tests come back clear.
I’d be reassured that if it was something really wrong, they would have found it by now.

I’m 41 and wonder if my symptoms are hormone related / peri?
I’ve cut out all processed food and take a really really good probiotic (three times a day) and that keeps things manageable. Any less and my symptoms come back. I take biokult .
have you tried symprove? It didn’t help me much but some people swear by it.

There is no point in having tests if you are not going to accept the results. Maybe some psychological therapy would be beneficial because the fear of "what if?" is more damaging than any real or imagined physical illness.

It sounds like you have health anxiety non responsive to CBT.
I am in the same situation and feel for you, it's a hard life living with such anxiety and all treatments failing.
I think the cure to this lies in further therapy and psychological support rather than gastro tests, but I do understand that it is hard x

I wouldn't say 'just' IBS, that can be quite awful. However if nothing sinister shows up on investigations you can relax somewhat.

There is a supplement called 'Bowel Care Plus' made by Woods. I think it is pretty good (and it won't do any harm): www.woodshealth.com/bowel-care-plus.html

Its your anxiety that needs treating more than the IBS I'm afraid. Have you had longer term counselling.

JustDanceAddict I do hope you manage to get some help, it really does wear down your mental health in the end.
ichundich Thank you, I have tried CBT and antidepressants, several times but I can’t find an AD which doesn’t exacerbate my gut issues.
Sunnysideup999 I did try Symprove but couldn’t keep up with the cost. I haven’t tried biokult though, I’ll look into that one, thanks. I really do think my hormones are now making things so much worse.
tattlytote I’m sorry you are going through the same thing. I do think you are right, I truly believe longer term therapy could possibly help me but I don’t think I will get that in the NHS sadly, I only ever get 6 weeks of therapy and it just doesn’t cut into it. I’m going to need to self fund but can not afford it so it’s a vicious ongoing cycle atm. I do hope you find some relief soon.
LBFseBrom Thank you, I will go take a look at that.
username8888 I agree, I really believe that longer term therapy would benefit me but I will need to fund that myself as it’s not available to me on the NHS and I just can not afford it.

I live in constant fear something is not right.

Did you know that hypnosis is proven to help with IBS?

www.ncbi.nlm.nih.gov/pmc/articles/PMC1773844/

It's relatively low cost, fast and non intrusive.

The bit that jumped out to me is the “living in constant fear”, it sounds like your in a state of “fight or flight”, this can cause excess adrenaline and cortisol that lead to gastro symptoms. Have you experienced any trauma in your life? can you pinpoint when the gastro trouble started?

Eyesopenwideawake I do the Nerva app gut directed hypnotherapy every day. I can’t afford one to one sessions unfortunately but imagine they would probably help significantly more than listening to a generic app.
AnnoyedHumph My IBS started Wednesday 22/7/98 (I remember the day like it was just yesterday!). I was 25 and had been at work. I had experienced no previous guts issues up until that day. Went to work, fine all morning, had lunch and then basically pooped myself. I’ve never gotten over that and my digestive system has never been the same since that day, that day seems to have set off, (or was the beginning of) 25 years of IBS. I was going through a lot of stress at the time which was probably the catalyst. I have explained this to my GP and the gastroenterologists I’ve seen but they just don’t take in that day with much significance but at the time it felt like a huge traumatic incident to me (and tbh, as stupid as it sounds, it still does!). I would like to try EMDR for this but my GP says it’s not available on the NHS.

@RedorangeyellowBLACK A lot of my colleagues do free initial sessions so it's possible to check to see if it would work for you without any further commitment. Happy to send you a list if you're interested.

Gut issues are very typical when you start antidepressants; they normally settle within six weeks. When you tried them before, how long were you on them?

That would be great Eyesopenwideawake, thank you.
ichundich I tried the TCA for 6 months and SSRI’s (Citalopram and Sertraline) for approx 5 weeks, the problem is that my job involves driving and the meds were exacerbating my diarrhoea symptoms, not idea
when I am driving along a motorway and can’t get to a toilet in time! I would love to take something which would help long term but don’t know how to get past the horrible side effects.

Sent 😊

Very few veg, no fruits. Careful about my fibre intake.

I can't help thinking your gut microbiome must be in a very poor state. This all sounds very hard to live with. I do hope you find some calming therapy that will also calm your gut and that in turn will further calm your mind.

Try HRT if you're not already on it.

Patches, gel or spray for the estrogen and micronised progesterone.

Many of your symptoms could be perimenopausal/menopausal.

That’s one of my fears MadelineUsher and the reason I want to get better, I want to eat a wide variety of foods for optimum health.
I have wondered if peri may play a part but wasn’t sure if digestive issues were a Perimenopause symptom? SophiaLarsen