Did going to private clinics helped you?
I've basically ended up on a dead end with public health care both in Greece and the UK. They'd done extensive tests on me (except endoscopes) and by process of elimination concluded that I have IBS.
They then prescribed to me typical medicines like Laprazol and some other stuff which didn't really help. They are convinced that the problem is psychological and have suggested CBT. But my symptoms can be very severe, and are often triggered after a few hours when I eat food. Those symptoms are there regardless of whether I am feeling stress so that theory doesn't make much sense to me.
I just don't feel that it's the case. But the entire surgery thinks so. They refused a colonoscopy because there is no indication of something serious in my initial tests.
Therefore, my Mother suggested, why don't I go to a private clinic? I've already passed my tests to a gastroenterologist and she basically ended up in the same conclusion as the GPs. As far as I was told, IBS is poorly understood, and the only reason to get a colonoscopy at this point is to get the "IBS Label".
My Mother still insists that the problem can be solved with a really good clinic. But I'm afraid to pitch in thousands of pounds only to end up in the same conclusion. After all, there is no solid understanding of IBS, only a bunch of theories. And I've spoken to something like 10 different GPs and a dedicated gastroenterologist and they all had the same verdict.
So is it worth it? Did that kind of approach help you?
Sorry you are going through this. What are you symptoms? Any blood? Mucous? -Elizabeth (team member)
No I do not have blood. I only get mucous if I eat raw veggies. Other than that I have some very bizarre symptoms. My bowels tend to do random horrible spasms which cause my heart to skip beats (super scary). That also causes random muscles in my body, mostly in my legs and neck, to twitch. I think it's the vagus nerve.
There are honestly a lot of symptoms but I can't recall all of them as they tend to alternate. For example, the heart skip tends to be very episodic, appearing at random with months apart.
I also of course have typical IBS symptoms like reflux (which can honestly get really bad), pain, diarrhea, gas.
Occasionally, I get a nauseous feeling so strong it feels as if I'll spill my stomach out of my mouth. I remember how hard I panicked the first time it happened. I honestly thought that I was dying and that's not a joke at all.
Food definitely influences all of these things, especially acidic foods like vegetables and fruit. My diet is horrible. I survive on wholegrains and some tomato (treated with bicarbonate of soda) for the most part. All legumes make me REALLY sick. So I'm pretty restricted.
It didn't used to be like that by the way, it just kinda became this way this year.
Like I said, multiple doctors have done a lot of tests, nothing worrying on them. They say that I'm fine. But clearly not. So that's why my Mother wanted me to see a private clinic. But is that worth it? I came here to hear of others experiences to help me make a decision.
Not sure what SIBO is but it doesn't appear to be classified as an actual thing here in the NHS, unless it goes by a different name?
By a specialist do you mean a person who focuses on IBS? Are there such people? I'm honestly afraid of burning money on them considering this is a very poorly understood disease.
I've already seen a gastroenterologist. I have also been considering one that focuses on the upper GI tract since I have very intense symptoms that seem to be originating from there. For example, reflux so strong it blocks my airways and leaves me gasping for air for a few seconds. Or the deathly nauseous thing.
Thanks for sharing. SIBO stands for small intestinal bacterial overgrowth and can mimic and/or exacerbate IBS symptoms. This article on SIBO may be helpful to you: https://irritablebowelsyndrome.net/living/sibo-treatment-cured-my-ibs. By Specialist, someone who focuses on IBS treatment and getting to the bottom of your symptoms. Best, Kelly, Irritablebowelsyndrome.net Team Member
Cognitive Behavioural Therapy can sometimes help I think. I researched a bit about it because I was wondering if it might help me. Maybe it could help in some small way for you to cope when the symptoms get on top of you. IBS can really mess up our feelings and responses to everyday life. It can be a really scary journey. and I often wonder if learning some behavioural strategies to manage things which I haven't already thought of, can at least help ease the stress IBS causes.
That's not to say the symptoms are "all in our heads" because of course they aren't.
But there are other things to consider which can cause a bad gut and which aren't always thought of in standard tests. One is bile acid malabsorption, and another is microscopic colitis. And there are other things such as food intolerances or histamine intolerance. The NHS I am sure, won't even mention those (?)
I also get heart symptoms. Literal missed heartbeats, and speeding up and slowing down of my heart rate at rest, all within one minute. Three times I have mentioned this to doctors and they have listened for quite a few minutes and said my heart is perfect!
I think it is something to do with the vagus nerve. When something happens with that it can cause awful deathly feelings, cold and hot sweats, passing out, tingling and numbness, awful nausea, and a sense of doom. I had a couple of vagal attacks like that and ouch! I never want one ever again!
