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.

You could try - if you haven't already - 1000mg Vitamin C per day; a soluble one if tablets are hard to, pardon the pun, stomach.
It helped me enormously, having tried a lot of things already.
At the time it was the only change that I made.
Usually vitamins need to be taken with food to metabolise properly, but I find the soluble one does not have the same need.

@Snowspeckledeyelashes my only symptoms were gastric. No rashes / wheezing at all. All my handbags had an Imodium supply as I was so worried about getting to the loo in time when out and about . I was like this for many years.

unfortunately I then developed anaphylaxis every few weeks. The low histamine diet has stopped my bowel problems and the anaphylaxis.

fermented foods like kefir and probiotics are very high histamine so maybe try some of those and if they make you worse you will know if histamine is an issue for you.

ScienceDragon yes, I’m under a NHS gastroenterologist. They are trying to help me come off the low fodmap diet.
Thanks LoveMyPiano
PamelaBanisha That’s interesting, I will have a deeper look into the low histamine diet. How quickly did you start to get relief?

I am also wondering about MCAS. I see some improvement by taking a daily antihistamine.
is there anything else I can take for MCAS?

I’ve also had something similar for a long period of time, approximately 20 years. I eventually stopped going to the GP and just had to try and avoid different food types over a period of time to see if I could work out myself what was causing it. I have been off dairy for about 18 months now and barely had a flair up in this time. I do feel for you, it’s a horrible thing to have to deal with on a daily basis.

I really feel for you, my life is also blighted by gut and bowel issues. I'm fine as long as I don't eat and try to only eat in a small period of the day. Only today I had lunch at work and got uncontrollable stomach churning and wind. At one point this afternoon I let out a massive fart that I had no control over at all. Miraculously and fortunately I was alone in the office at the time!

I do worry about not being able to get to the toilet but like a pp I acknowledge this to myself and crack on with life as best I can.

One thing to investigate is sibo, if you haven't already done so. I can't get the breath test on the NHS but am considering paying for it

@Snowspeckledeyelashes I can't recall is you said you still have a gall bladder? The removal of it is usually a factor in getting BAM.

I’m not sure what other treatments there are Marilynsgirl, I believe it’s tackled with a low histamine diet, antihistamines and acid blockers.
SusieKin dairy/lactose definitely seems to be a huge issue for many. Lots of us just don’t possess the enzymes to break down the lactose.
Leakingtoilet I’m the same, I often go without food when I have to work or go anywhere but I know that’s counter productive but my digestive system is calm when I don’t eat. Have you asked at your local hospital because our NHS hospital is now offering SIBO tests to do at home. My gastroenterologist is sending me the Healthpath one to do. Hopefully all NHS hospitals will do this. I’ve read that SIBO can account for up to 75% of IBS cases, although I am dreading it if I do have it. I am on a lot of SIBO FB support groups and it’s a bugger to get rid of, apparently!
MyNameisMathilda I do still have my gallbladder which is why I’m a bit concerned about taking the medications without the scan as I’m not sure I have the exact symptoms.

flashion I want to thank you again for your suggestions and info on CPTSD. I have taken the time to have a real good look into this and am beginning to wonder if this is the avenue I need to go down atm. I had a chat with my dad yesterday (sadly mum has Alzheimer’s so can not ask her anything about my childhood). He said that my mum had suffered greatly with depression when my sister and I were very young. Obviously, 48+ years ago this probably wasn’t diagnosed as pnd but dad says mum was basically whacked out on Valium. I had no idea my poor mum suffered so much. This may (or may not) have had implications in my early years and could be some of the reasons why I had so many anxieties and ocd’s as a young child? I would love to see a psychiatrist to unpick all of this. That needs to be my goal, I think (when I can afford to see someone).

@Snowspeckledeyelashes hi there, I am so glad that you found it helpful. I definitely think when we cannot pinpoint a definite physical cause there is invariably some trauma there maybe unconscious that needs addressing.

The Pete Walker book is really excellent for self help related to CPTSD (and there's a CPTSD subreddit that's helpful too) and so too the Gabor Mate videos etc - he has a personal story that explains how he was a baby that was separated from his parents during the war but had no conscious memory of it but it manifested later in his life as anxiety, OCD and addiction.

I too believe I have CPTSD caused by a traumatic childhood even though my childhood wasn't "that bad" I am left with a lot of aftermath, both mental and physical issues that I am still trying to clean up but these books and teachings have been a godsend.

I am really interested in all the stuff that involves addressing the subconscious issues, accessing and hearing the "inner child" and inner child work too, as it involves reparenting your distressed inner self to solve the traumas. I realise to many people it sounds very hippyish but if you can remain open minded it is so helpful. You may have a traumatised child inside of you that is crying out for help but in a way that shows up as digestive issues and strange symptoms as it cannot speak your conscious spoken language. So accessing your subconscious and healing those issues might help you a lot. Apologies if this all sounds a bit airy fairy but for me it is really evident in my life and my family member too with their issues.

You would be surprised at how common CPTSD is in issues like these. I hope you find some suitable therapy, if it does turn out to be the cause. Never stop looking for solutions! Best of luck.

It doesn’t sound airy fairy at all flashion, I too am very interested in the psychological side of brain health. I started to work on my inner child whilst having some EMDR with a psychotherapist. I was quite taken aback at how emotional it was and was left very upset, that must represent something. I turn 50 soon and it’s my goal to get somewhere with this in my 50th year!

snowspeckledeyelashes how to contact the nutritionalist I worked with. outworkfitness.com/ or
Sam Barley nutition & bio-optimisation on facebook. hope this helps