Digestive issues are ruining my life

[Snowspeckledeyelashes]

And I honestly don’t know what to do anymore.

I have had digestive issues for the last 25 years (I am almost 50, so a huge chunk of my adult life).

Back then, I was told I had IBS. I have had up and down days during those years but was able to get on with life well, to a degree.

However, 4 or 5 years ago they started getting worse and daily. They now completely rule and dictate my life.

I live in constant fear that I have something very wrong (despite many tests), I just can not shake off that fear, especially now I am heading into my 50’s.
I also live in fear of soiling myself (this happened once at the very beginning of this journey yet I still can’t get over that and the fear of it happening again especially on the days I have loose stools), so now my world has become very small. I work just 9 hours a week (and I struggle with that), pop to the shop for food, walk the dog and that’s about my life. It is affecting my family life also, my husband and teen kids have to live with this too. I often feel so unwell with the symptoms and I never want to go out or do anything much as I can not concentrate on my life when my guts are screaming at me. It’s left me very depressed and low but antidepressants make the gut issues worse. It’s such a vicious cycle.

How can I move on or accept that this is how my body is now and there is nothing I can do?

Over the last 4 years I have put myself through barrage of tests. I have had a colonoscopy, a gastroscope, a ct scan, endless ultra sound scans, a pill camera endoscopy, blood tests and stool tests. All (thankfully) come back clear yet I still have doubts. I have now gotten to the point that I don’t believe the doctors as they are human and mistakes can be made (crazy thinking, I know but it’s how my mind plays tricks on me).

I spend all my spare money (don’t have a lot as this condition dictates my life and how much I work), on private tests and gastroenterologist visits (as the NHS ones are so few and far between), special foods and diets (I follow the low fodmap diet and have a very limited diet and poor relationship with food now), alternative treatments, books, downloads - literally anything my budget will allow.

I hate my digestive system and what it’s doing to me. I literally live every day convinced I have something seriously wrong because I have symptoms almost daily. Every symptom I have (daily, excessive gurgling, growling, nausea, pain, bloating, excessive gas, constipation, diarrhoea, sometimes urgency, rectal discomfort….), sets off this frenzy of anxiety and stress that I will need the loo quick or that it’s something ‘missed’ by the doctors.

I try hard to relax and listen to hypnotherapy etc but the symptoms start off the anxiety. I have had CBT and probably need long term therapy to get over this fear but I can not afford it sadly. It’s so hard to relax your mind and body when you fear your body may let you down at any minute.

How on earth do I get to a place where I can start to live a better life with this?

Has anyone been in this position? Had bad digestive issues and now manage it well? I feel so alone with this. I basically get told ‘get over it’, so spend most of this turmoil inwardly. I know I need to get over it but God, it’s bloody hard. I’m trying.

That sounds do hard and as someone who has recently (2 years) developed very similar issues I can only say that:
Tackle the anxiety- a course of AD may well help
Address any hormonal issues - HRT? I've definitely been able to link mine to being peri and to times of the month
I've found it's also not always about what I eat but how much - overdoing it produces lots of gas. I then need to re set by having some gentle eating days - small meals of soft food no meat or heavy carbs. The carbs for me are the worst for setting off symptoms

I've found that I need to break down each symptom rather than look for one overall diagnosis. I've also accepted that I need to find coping mechanisms and not a cure.

Lastly going for a walk, as simple as it sounds, really helps physically and mentally

DH has found some relief by trying prebiotics, eg. Kefir and sauerkraut.

I’m hoping you have tried going completely lactose free? Lactose intolerance is much more common than people realise. I suffered for years had several unpleasant tests and procedures. Then a locum doctor suggested I try lactose free, bingo it changed my life.

My daughter 27 has similar loads of tests all negative severe cramps bloating so she looks pregnant constipation the diarrhoea. She cut out gluten...can tolerate spelt...and dairy is largely lacto free with one dairy a day (or you develop a true allergy rather than an intolerance) she takes probiotics daily. Symptoms have died down she can now eat a bit of gluten and only has flare ups if she has more dairy. Allergy tests done not show intolerances.

applepearsbears thank you. I really must look into trying ADs again, there must be one which won’t exacerbate my symptoms. I do often wonder if peri has a lot to with this, it’s strange that everything went haywire at 45. I have many peri symptoms but as I still have periods and no hot sweats my gp says I’m not in peri 🙄
Dahliarules thanks, I will go and have a look into those.
talkingmorenonsense definitely! I’ve been lactose/dairy free for 17 years. Milk worse a huge trigger for my IBS-D
Jannier thank you, I am currently diary free but do have a small amount of wheat/gluten on the low FODMAP diet. I will take them out and see if there is any improvement.

@Snowspeckledeyelashes
i sympathise - I’ve only had major digestive issues since covid (6 months), all tests now are coming back normal. My symptoms are a bit different- mainly upper gut - but depends what I eat.

at 45 you are prob in peri - I certainly am as have only had a couple of periods this year, but never had a hot flush. GPs are woefully ill informed about peri symptoms. Maybe you could make an appt w a meno specialist? You can be in peri up to 10 years before your periods stop.

I have hrt to start but I’m worried it’s going to exacerbate my stomach issues - or it could help as well. I’ve just changed my PPI meds so will give them time to settle before I go for the hrt!

If this all worsened at 45 and you're 50 now then OF COURSE menopause is having an impact. If not on the physical symptoms then definitely on things like your anxiety. Have you thought about/discussed HRT with your GP?

Given your limited diet, I think HRT to protect your bone health should be a given, even if you aren't showing any other symptoms.

Many GPs see hot flushes as the 'gold standard' symptom for peri menopause but that's just not true. I've had no more than a handful and I'm very definitely menopausal.

Anyway, at 50 they shouldn't be looking at peri markers, they should be assuming meno.

What do the medics suggest in terms of treatment? Have they tried you with peppermint tablets (they're prescribed to people with IBS, this ain't alternative medicine) and mebeverine? (Which helps with cramps).

There are some other tests you can have, like a calcitonin test. This would rule out an unusual cancer (medullary thyroid cancer). It's a difficult test because the blood has to be put on ice immediately and be sent to a specialist lab to be processed and results can take a long time to come through. It's vanishingly unlikely that you have it as it is extremely rare, but it is one of the tests that should be performed as IBS is a diagnosis that relies on ruling every other possibility out.

Have they checked you for helicobacter pylori? The treatment for it is cheap and easy.

Finally what about a regime of pre and pro biotics? Our gut flora is a delicate microbiome and sometimes just having one thing out of whack can cause real problems in some people.

I feel for you, it sounds horrendous. Hope you find some relief and some answers.

JustDanceAddict I really would like to try HRT to see if it would help but like you, I’m concerned it will exacerbate my symptoms as I’ve heard the progestogen side of things can cause tummy issues.
MilkshakesBringAllTheCoosToTheYard I do worry about my bones as my mum has osteoporosis and I know HRT can help protect from that.
JuneOsborne over the years I have tried all of the standard IBS meds and antidepressants. Very little relief from the meds other than mebeverine which I do take most days but it is very hit and miss and does give me other (unwanted) side effects. I do very much hope my issues are not linked to anything like medullary thyroid! I have had a quick look and am not experiencing any of the other symptoms other than the tummy issues. I have a gp appointment soon, I will mention it. I had biopsies when I had the gastroscope and was tested for h pylori and coeliac etc, they were negative. I do need to explore the world of pre and pro biopics, I have always been a little nervous incase they exacerbate my issues.

Should add JuneOsborne that I had a whole panel of blood work done around November last year, my blood calcium levels were fine. Not sure if the thyroid cancer would affect that but my sister has hypothyroidism and is being investigated for parathyroid issues, her blood calcium levels are all over the show!

I could have written this post.
I’m 50 this year and around 4 years ago I started having bowel issues. It seemed to stem from a period of stress (a job change and a couple of bereavements). My symptoms started as urgency to use the toilet and I had a few episodes of extreme urgency and sudden soiling - I just could t control the diahorrea.

The upset stomachs continued, worse in the morning with multiple stressy trips to the loo in work (up to 8 times if I was feeling particularly anxious). I cut down on cups of tea, tried avoiding food, spent a fortune on probiotics that made everything worse.

I get gas, cramping, gurgling, sudden urgency that appears from nowhere (a strange almost heightened feeling in my bowel) I’m absolutely terrified once I feel the need to open my bowel as I can never be sure it won’t just pour out of me (I rarely trust a fart!)

The soiling has become more frequent and when I happens I literally get 5 seconds warning. The issues kick off around absolutely anything. Travel, work presentations, meetings, visiting people, people visiting me, anything.

I saw my GP a year ago - all bloods and stool samples were clear. I asked for a trial of bile binders as I suspected I had bile acid malabsorption as my stools are frequently yellow but they made little difference.

I have had some relief by taking a daily antihistamine and every evening a sachet of Fybogel as that seems to bulk up the stool and slow things down a bit which at least gives me a bit of extra time to get to the loo.

Ive started to feel panicky around opening my bowels altogether now and realise I’m on a dangerous slippery slope to agoraphobia if I’m not careful as I find myself turning things down now as I’m worried about how my stomach will behave.

id love to be free of this - I’ve read that amitriptyline is good for some people at a low dose but the side effects put me off. The GP offered Sertraline but one of the side effects is diahorrea! No thanks!

I've had the same issues all my life, and like you every test comes back clear. Its exhausting!

I don't let it take over me life though. I acknowledge that I have the concerns etc it brings me, but do everything anyway.

I was on a train yesterday when my bowels decided to play up. But I always book a seat by the toilet and so j was prepared. I find exercise makes the pain worse, but I have to exercise for my mental health so I do it anyway.

I've spent many hours sobbing, both in frustration that no-one can figure out what is wrong, and in pain but the next day I wipe it all away and try to start again.

I wish I knew what was causing this, but until I do I have to live my life as best as I can.

Probiotics. Fixed me totally. But you can't just buy any old ones. I tried a few, from £6 ish up to £30, and they had no effect. I did more research and spent £100 ish I think, on a months supply. It was pretty much fixed after a month, but I did another month just to whip it's arse, and my guts have functioned perfectly ever since. I eat a healthy varied diet now, lots of veg to feed my wonderful bacteria colony!

Have you had a gut biome analysis done?

I bought Optibac Extra (£26) and after day 3 had the most extreme stomach pains and foul smelling yellow diahorrea that I had to stop them immediately. Every time I’ve tried a probiotic I get the same issue.

Marilynsgirl I’m so sorry you are suffering too, it’s just awful. I really feel for you. My current issues seemed to stem from a huge amount of stress from 5 years ago, it just will not settle down. I’ve been told that an SNRI like Duloxetine may help but like you I’m worried about side effects etc but am literally at breaking point right now. Have you tried Imodium? My friend takes the IBS one, every other day and says it’s changed her life. I’ve ordered some and may try that. If I take it every day, I just don’t go, which isn’t ideal either. I hope you find some lasting relief soon. It’s not a nice thing to suffer from.
MooseAndSquirrelLoveFlannel it’s not until I talk about these things that I realise so many suffer from bowel issues, I’m sorry you do to. It’s fantastic you are not letting it hold you back. I need to get into that mindset as right now it’s taking over my life.
Gingernuttie that’s really encouraging. I don’t know why but I’ve always been a bit scared to take probiotics. Can I ask which ones you take?
BideshiI haven’t yet but along with a fully comprehensive stool analysis, it’s something I would love to have done but just can not afford it right now.

vitaminsuk.com/products/vits62675
I used these. I followed the instructions religiously. If you go for it, I hope it works for you.

Thank you Gingernuttie

Have you had a SeHCAT test for Bile Acid Malabsorption? I did and I am now on binders for it. Check out this page.

www.bad-uk.org

MyNameisMathilda I had a SeHCAT scan booked for last April. Unfortunately, the hospital cancelled at last minute and now say they have a huge waiting list as they are low on a certain radioactive ingredient they use for the scan! So God only knows when I will get an appointment. I can’t get a gastroenterologist app for another 3 months. I’m not sure if a gp can prescribe the binders? I will ask when I see her next week.

MyNameisMathilda did you tested positive for BAM? I have heard of gastros prescribing the salts without a positive diagnosis. I wonder if mine would do that?

Yes I did and am now on the binders. I have heard also that many doctors are doing this now - prescribe the binders and see if that works without the SeHCAT.

I am on this www.webmd.com/drugs/2/drug-4803/cholestyramine-light-oral/details and you also get capsules I believe. It's not 100% but it has definitely helped and I will top up with Immodium if eg going on a flight or long journey. Look on FB for this group. It's wonderful to realise you are not alone.

I'm sorry you're having such a hard time of it. Some thoughts:

1. If you had something like a cancer causing your symptoms, it's vanishingly unlikely that it would have dragged on this long without being found.
2. If you can afford private gastro, scans etc, you could divert some of that money to a therapist to get some focussed CBT (or other therapy) to help you cope.
3. Bowels reflect your emotional health. Anxiety and low mood -> bowel upset. Bowel upset then worsens your anx + low mood. Focussed therapy should be able to help you break this vicious cycle.
4. Conversely, the worst thing you can do is to keep going for more physical investigations. It seems that you gain nothing from them, and they simply make you feel worse and worse because they don't give you answers or help you feel better.
5. SSRIs do often cause loose stools (did you know that there are more serotonin receptors in your gut than in your brain?!) But I would definitely discuss other types of AD with your GP.
6. You're worried about side effects of ADs- but what side effects are going to be worse than being held a prisoner by your gut?
7. You could ask your GP if there is an NHS clinic in your area for "medically unexplained symptoms" (MUS). IBS is one of the conditions that comes under this banner.This is a field that is growing, and if you can get linked in to an suitable clinic, you may well find that you can get the appropriate psychological treatments to help you live with this.
8. ---- and remember that vicious circle? If you can start to feel easier about living with the problem, you may well find that the problem then starts to lessen.
9. I've blethered on enough so one last thing - do you know of the IBS Network? It's a UK charity - it offers support, suggestions, help, contacts etc --- might be worth a look. www.theibsnetwork.org/