A long time ago, in a surgery far, far away...

By TONY284

2 min read

Hi everyone from (sometimes) sunny Wales, UK.

The saga begins in a doctors surgery far, far away. I might as well have gone to the mighty Jabba as to date, no one has given me an answer, which really does make me go to the dark side and join the Empire rather than the rebels.

Late 2019, I started getting bloating, feeling very tired, bad indigestion, headaches, back pain. I was regular on the loo, but constipated, so went to the 'doctors'.

They took a zillion blood tests, and initially suggested I had a H Pylori infection. Blood test showed zilch.

They then suggested it could be celiac disease, as there was a very slight trace of the thingy that could cause it, even though my son has coeliac disease and we'd been gluten free for two years previously. They suggested I go totally gluten free for a month.

Frustrating experiences with doctors

You've guessed it, no change. Third visit. Dr Hopeless said it could be diverticulitis, off you go, and booked me an appointment with a gastroenterologist at a local hospital...

Then lockdown in the UK happened. This was March 2020. In August 2021, I eventually had my appointment with the most annoying specialist ever, who cut me off at each question, and exclaimed after 18 months of waiting that it 'could' be microscopic colitis, but 'probably' IBS. I walked out in disgust, waste of my time and a pointless half hour with a complete idiot.

Anyway, since then my symptoms have been the same, no worsening, sometimes changeable, happening more often, but just THERE!! AAGGH!!

Symptoms

So, the symptoms are usually: Random flare ups, sometimes last for a few days, the longest has been six-seven weeks, then stop for anything between a week and two months.

It's usually bloating, lots of hiccups and burping, hideous acid reflux (which I've had for years before on and off) and feeling lethargic, irritable and very tired.

When it stops, it stops, totally back to normal. The stomach ache, isn't really an ache, it's just a weird feeling of fullness and soreness, and wanting to just have a good burp and farts, which are incidentally positively evil on occasions, sorry again to my long suffering wife.

I believe GERD has joined the party a few weeks ago, with the usual top of stomach burning and burping up food, and the 'oh my god what's wrong with me' comes and goes every so often, yes I suffer from anxiety as well, oh joy of joys!!!

Lifestyle changes

I stopped smoking ten years ago, and my wife cooks the healthiest food ever, and has recently gone vegetarian, and I'm going the same way.

I have tried just about everything in the book, and prebiotics don't help at all. In fact, the only thing that helps is prune juice, yoghurt, and my wife's lovely curried soups, full of lentil goodness!!

I'm tempted to back to the 'doctors' but know they'll just fob me off with some crap.

I found this forum out of the blue, and hope all you lovely fellow sufferers can suggest some remedy or relief, or share your stories too in the hope that I don't have to go to the far side of the galaxy to find an answer. And yes, I'm a 50 something Star Wars geek, as you've probably guessed.

Thank you in advance for any help.

Stay safe, and bloat free!

Tony I.

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Kim Dolce Moderator & Contributor
<inline-mention username="TONY284" user-id="7017507"/> Jeepers, it does sound as if the Force has not been with you for a long while. Here's hoping you have better days. Under such chronically-stressy conditions, it's understandable that a sufferer might think dark thoughts. Feeling uttely helpless can be a dangerous trigger. Good that you have found some things that work such as yoghurt, prune juice, and your wife's curried soups. Sadly, some people don't even have that kind of thing to hang their hats on. It really is a matter of trial and error, a medical approach familiar to many people who live with a chronic medical condition. I won't directly advise you on a course of action, I am not you. All I can do is show you a corner of my battlefield, where my digestive system fights daily skirmishes with food and drink. Sometimes it's more like one-on-one duellist action, other times it's a full-on advance, color guard banners aflap, bagpipes wailing. I learned the hard way that the latter--banners flapping, bagpipes yowling like cats--requires me either to stay home and dig into my bunker until the smoke clears, or choose a side and join the battle. Also learned that it's not so much what I eat that triggers IBS, it's THAT I eat. Probiotics do nothing, prebiotics have always been included in my probiotic supps, so that isn't a factor. I also have multiple sclerosis--which can cause gastroparesis, delayed emptying all by itself, but cannot clearly be judged as the cause of MY IBS! Even if it could be some day, treatment would be the same as what we talk about here. Ugh. We can only do our best, and keep reading others' experiences.
DEATHDARKBITCH Member
I have had the same issue with Dr's. For the last month I have been out of breath, heart problems, panting like a dog. Symptoms got worse so even though I have PTSD when it comes to Dr's. I went. Usual tests Yadda Yadda Yadda. Ended up in hospital. Again same old tests over and over again. But when I mentioned my IBS radio silence. Only wanted to know about chest pain. So around 3am the consultant told me that I might have blood clots in my lungs and they were going to inject me with blood thinners. I knew what was going to happen but as usual they thought I was whistling Dixie. Until the screaming started. But because it was "normal for me" they ignored me. Then in the morning the age old food problem. I got a yogurt and bless her she thought she was doing me a favour by cutting up apples into artful slices and obviously they had to be chucked. At 11am I was jonesing for a tuna &mayo sandwich. Which they didn't have. But 30 mins later I got one. Bless her. Then came lunch. Menu too much food, nothing for me to eat. If I ever have to stay in hospital I am going to be dead. These people admittedly do a thankless job treating a/holes like me but their education about IBS needs some improvement.
1. Karina Moderator & Contributor
 <inline-mention username="DEATHDARKBITCH" user-id="4250368"/> I'm so sorry that you had such a bad experience. It's terrible that they didn't take you seriously and didn't offer you any food you could eat. 🙁 I'm just glad that you got your sandwich at least. How is your breathing now? Did it get better with the blood thinners? I'm so sorry you had a bad reaction to those, too... The last time I was at the hospital for the birth of my son, they gave me a list of foods and I was able to cross off anything I couldn't eat. Since I can't have gluten, they then send over a dietitian to discuss possible meal options for me and it ended up working great. I received only safe foods the entire time. I wish they did this everywhere... I hope you have started feeling better. Big hugs, Karina (team member)
DEATHDARKBITCH Member
Unfortunately round here it's the post code lottery and they obviously can't afford dietitians. Hell knows why. I'd have thought it was numero uno especially nowadays. My breathing is calming down slightly just a bad cough until I throw up. The "virtual ward" team is keeping an eye on me. Good to hear. One of the medicines causes bruises and I have a massive one on my arm. But at least I can eat my own food and all the other things that was impossible to do and get in hospital. 
1. Karina Moderator & Contributor
 That's very frustrating, I wish they had dietitians everywhere, too. 🙁 I'm glad that you're starting to do better, hopefully the cough will ease up soon. It must be such a relief to be able to eat your own food after that hospital experience. Karina (team member)
DEATHDARKBITCH Member
You have no idea. Lol. It's like nectar. 
1. Karina Moderator & Contributor
 <inline-mention username="DEATHDARKBITCH" user-id="4250368"/> I believe that. 😀 Wishing you all the best, Karina (team member)