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.

Suffered with exactly the same issues for years, completly lost any social life, holding my job down became almost impossible. Then i was introduced to a nutritritionalist. He didnt come cheap and made it quite clear that for this to work I had to do exactly as he said or we would be wasting both of our time and I would be wasting alot of money . I did exactly as he said, it was hard, very very hard both physically and emotionally( yes I cried on many occasion). You need to be very organised and plan ahead but most of all you need alot of support and a clear understanding from friends and family. but after only three weeks of following his instructions to the letter it was miraculas. All of my issues disapeared. I can never go back to my old eating habits, as the momment I fall off the wagan Im in trouble.
I still mourne the lovely foods I can nolonger eat but I would much rather have the life I have now than the life I used to have.
It would be a mistake on my part to share with you exactly what I had to do because my treatment was perscribed to fit me personaly, so maybe completly wrong for someone else, we are all very individual, one size doesnt fit all with this treatment . you have to answer a lot of questions and be brutally honest before you can even start on this journey as its vital to get the correct treatment that will work best for you and you only.however, I would be happy to share with you how to contact this person if you thought it was something you would be willing to do. This is my first time posting on this or any other forum, I really get what a terrible thing it is, most of you on this thread are going through, I felt I needed to share with you my own experience.
hope you all find a way to resolving this terrible infliction xx

My episodes are much reduced by taking a probiotic every day.
For me it needs to be one with at least 40 billion

Yes, I take Imodium regularly which helps a lot. I use the ones that melt in your mouth and sometimes just half is enough.

Id still like relief from this though, once I eat my bowel starts churning and the gas starts to build straight away. My gastrocolic reflex is triggered as soon as I eat. I can feel my bowel pulsing and bubbling straight away.

That starts the anxiety that I need a BM and then I’m rushing to the loo. A nightmare vicious circle. Wish I could relax and eat out and enjoy food without one eye on where the toilet is.

anyone else have to leave a meal mid way through? It’s daily in work! Embarrassing!

Focussed therapy will NOT stop your digestive system from operating in a deficient way if you have a physical issue. I have had in the past a few consultants who have said " oh it's in your mind" etc etc . While I am very aware of the gut/brain connection if someone has a deficiency of bile salts as I do then no amount of "not thinking about it" or therapy will stop you from shitting yourself. If only it were that easy.

Focussed therapy will NOT stop your digestive system from operating in a deficient way if you have a physical issue. I have had in the past a few consultants who have said " oh it's in your mind" etc etc . While I am very aware of the gut/brain connection if someone has a deficiency of bile salts as I do then no amount of "not thinking about it" or therapy will stop you from shitting yourself. If only it were that easy.

This is very true, and I'm sorry if I've given anyone that impression.

I was referring (as did the OP) to irritable bowel syndrome, which in the OPs case doesn't seem to have been put down to any identifiable physical cause, despite what seem to be extensive investigations.

hi op, a family member has a very similar issue, that was termed "functional bowel disorder" linked to CPTSD. I'm not saying yours is the same as his but in case it helps here is our take on it. The gut has a matrix of grey matter and works like a second brain. With his condition it means the signals between the regular brain and the stomach brain don't work properly. I've done a lot of research on his behalf and we are both strongly of the opinion that it's the underlying trauma that needs addressing as well as the physical side of things (we are slowly working towards this but it is difficult because he is very stubborn, eats poorly, has poor self care and doesn't have much money). Do you have undiagnosed trauma issues, maybe CPTSD type stuff from a difficult childhood or difficult life events? It may be worth looking into treatment for these, as until the brain and mental health is healthy it is less likely that you will get your digestive issues sorted. There are a few books that might be helpful for you - "Gut, by Giulia Enders", "The Body Keeps the Score by Bessel van der Kolk" - will enlighten you about the mind / body connection - and if you have trauma "Complex PTSD" by Pete Walker (this one is amazing - until I read a bit of it I was unaware what CPTSD even was but it might be worth you googling this in case it rings any bells).

By suggesting these ideas I am in no way suggesting your situation is linked to trauma but consider maybe it could be a trauma of which you are consciously unaware (something in early childhood or something). Gabor Mate is helpful in understanding unconscious trauma.

If you are in any doubt as to whether stress and trauma might be linked to it I would strongly suggest looking closely at getting therapy and trying to get to the root cause, to treat that, if that is what it is. Healthy mind, healthy body and all that.

Anyway I hope this is helpful and please ignore me if you feel it is of a physical nature only, I do not mean to patronise you, just to relay our experiences.

Thanks MyNameisMathilda I will definitely ask my GP next week and see if it’s a possibility to try these as I have had to wait so long for the scan.
mauvish Sadly, all of the private appointments and therapies were from savings which I have now exhausted. I have had many CBT sessions including 12 weeks focusing on my gut issues, tbh CBT has really never helped my issues, even though I have put my heart and soul into it. I still practice the teachings every day (as well as gut directed hypnotherapy) but am still blighted by these symptoms. I totally understand, there is a huge issue with the vicious cycle of symptoms/thought processes/symptoms but I have never fully managed to break this. I suppose, the constant daily symptoms is what is driving the anxiety, for fear that nothing I implement is having a positive impact therefore it must be something serious!
I definitely want to try antidepressants and appreciate they may upset my bowels further (for a while) and although I am currently in a bad place with my digestive system, I can literally just about cope with my life and symptoms together. I have a mother with Alzheimer’s (who I check on every day), a job looking after a disabled lady and two teens going through their own issues. If I end up with a worsening of my gut issues I fear the deck of cards will come crashing down (yes, I do have a stressful life right now which I appreciate is definitely contributing). I have not heard about MUS clinics, I will talk to my GP about that. I’ve been a member of the IBS Network for many, many years. Thank you, your reply has been very helpful.
Sothisisithoney if you could message me the details, that would be great, thank you.
Marilynsgirl
Id still like relief from this though, once I eat my bowel starts churning and the gas starts to build straight away. My gastrocolic reflex is triggered as soon as I eat. I can feel my bowel pulsing and bubbling straight away
This is exactly how my digestive system acts. I have had several bad experiences in restaurants. I once had to leave a pub whilst eating out with friends, I felt so poorly and had to rush to the loo straight after the starter, the pub had to plate up my poor dh’s meal and cover it with foil for him to take home. The worst thing about that evening was we were out with friends and had to leave them on their own to finish their meals and we were also driving so they had to get a taxi home. I have never forgotten that, I was mortified!

I can see you don't eat lactose, do you eat soya in place of dairy (yoghurts etc)? Soya flares my IBS, also garlic and onions

I'm sorry you're having such a tough OP. It sounds all consuming.

Nobody here has mentioned Bile Acid Malabsorption, and it doesn't sound like they have tested you for that either.

Ask your GP for a SEHCAT scan. If they can't arrange asking to try binding medication.

It changed my life.

flashion that does make a lot of sense for me. I haven’t suffered any major childhood traumas (to my conscious knowledge) but had a lot of anxiety and ocd’s as a young child which were never addressed by my parents. As time goes by and I reflect on a lot of things in my past I do think my childhood anxiety issues could be a contributing factor. I have tried EMDR for this but didn’t get much relief but will have a good look at your suggestions, thank you.

Rattlethestars I don’t actually eat any diary alternatives tbh (which I know is extremely bad especially as my mum has osteoporosis!). I don’t consume any soy products as it does upset me. Onions and garlic are pure hell for me lol!
mollynolly I am on a waiting list for a SeHCAT scan. I was booked for one last April but they cancelled at last minute as my local hospital have run out of some radioactive substance for the scan and now have a massive waiting time!

@Snowspeckledeyelashes the childhood anxiety would have come from somewhere! Also trauma doesn't necessarily need to be caused by a person - it could be linked to childhood poverty or something less obvious. Trauma can be caused by things that many of us wouldn't term "serious" but they can be serious in that they affect us seriously. The CPTSD book is super helpful in this regard. And Gabor Mate's videos are also very useful in understanding it. I hope you find some relief somewhere soon!

flashion I think it may be learned behaviour. My mum has suffered from anxiety and depression all of her life and so to did my grandparents (her parents). I had a really good childhood so can not imagine anything triggering the anxiety other than being around other very anxious people. I will definitely start looking into CPTSD.

That does sound like a contradiction to say I suffered from awful anxiety and ocd yet had a great childhood but that’s how I recall it.

@Snowspeckledeyelashes that makes sense. there is also evidence of intergenerational trauma and it going down family lines if that makes sense. Maybe looking into healing subconscious trauma / healing intergenerational trauma or something could be worth looking into. Best of luck.

The way I explained it to my friends and the consultant was like everything I ate felt like it turned to battery acid the second it hit my throat.

Turned out I wasn't that far off the mark. I was churning out tonnes of extra acid and my bowel couldn't cope.

Three pills every night with my dinner and I am churning out daily Bristol Stool Chart perfection. If I forget or run out of meds I go right back to battery acid again.

@Snowspeckledeyelashes My consultant knew about the SEHCAT waits so prescribed me the binding meds to try without the scan, as it would be v obvious if they didn't work. Yours could do similar. It wouldn't harm you to try. They're not particularly nasty meds. They just bind acids and cholesterol.

I had pretty much these same issues and my gut analysis revealed very high-levels of bile acid. All under control now after a gut cleanse and targeted pre and pro bionics.

None of this worked for me. Colesevelam changed my life.

I did have a private gastroenterologist appointment last year. I will contact her and see if she is able to prescribe the medication on a trial basis if my GP can’t.

Please look up Mast Cell Activation Syndrome MCAS

it is well known to get much worse in peri menopause.

lots of treatments for IBS will make it worse such as probiotics.

I wish I had been diagnosed years ago . A low histamine diet has changed my life.

I assume you have watched this www.channel4.com/programmes/know-your-st-inside-our-guts/on-demand/73111-001

They have a very wide range of participants, which a whole host of problems.

Probiotics twice a day (homemade Keffir, sauerkraut, kombucha) not shop bought. Remove sugar & flour.
Listen to the life after sugar podcast. Fermentation episode .

PamelaBanisha I have often wondered if I may have MCAS but I don’t get any itching, swelling, flushing etc. Did you suffer any of these? I will look into a low histamine diet and give that a try.
AdventFridgeOfShame I’ve binged the lot! I’m drawn to any tv show relating to gut issues in the hope they may offer up something I haven’t yet discovered. It was very interesting.
Thanks Cozytoesandtoast00 I did go a full year gluten/wheat and sugar free but sadly had very little change in symptoms. I haven’t explored homemade fermented produce yet though. I need to do that.

Have you seen an IBS dietitian? The FODMAPs diet is not intended to be followed forever, as it is a temporary exclusion diet used to identify which, if any, of the FODMAPs are causing you issues. If you cannot afford to see a private dietitian (who can be found on the British Dietetic Associations website), ask your GP to refer you to a gastro dietitian through your NHS trust. Also, some GP surgeries have access to dietitians through the Primary Care Newtorks they belong to, so this might also be an option (I know as that is my day job).