Just can not get a grip on my IBS symptoms

[Silverumbrella]

And it’s making me so very low and depressed.

I have had IBS for decades.
Its been and down to over the years, some years I’ve managed to keep it at a manageable level, other times it’s been quite bad but I’ve always found a way managed to find a way to settle it or it’s just naturally settled itself.

However, around 5 years ago the symptoms started to become more and more frequent and has now reached a point where I have symptoms daily, on/off all day and even wakes me through the night. I have IBS-mixed but more prone to IBS-d and a constant bubbling, gurgling, growling gut which leaves me feeling very nauseous and with a feeling like I need the loo, on/off all day.

I know it’s a condition which never fully goes away and it’s something to manage rather than cure yourself of but I can’t even get to a place where I can manage it anymore and feel so trapped by this condition. I hardly go out anymore, have the most plain, boring (low fodmap) diet, only drink water and hardly any treats. I am afraid to travel anywhere, go out for meals, theatre trips, the cinema etc. My life has become very small and confined. It affects my relationship with DH and DC as we do very little as a family now.

I appreciate there is also a huge mental health aspect attached to the physical but it’s seems a chicken and egg thing and I can’t break the merry-go-round.

I feel that I haven’t left any stone unturned when it comes to finding relief. I have had many gastroenterology appointments which are always fruitless as my gastroenterologist seems uninterested tbh.
I have had a colonoscopy, gastroscope, pill camera endoscopy, a ct scan, various ultrasound scans and lots of different stool tests.
I exercise, avoid all known triggers, I’ve had lots and lots of CBT and therapy, I listen to gut directed hynoptherapy every day. I have tried all kinds of meds and antidepressants (these make the gut issues worse!).
I have trialled probiotics, tried kefir, live yougurt etc…….with no relief.

No one fully gets its, most people tell me it’s all in my head and I just need to get in with life (Well yeah! That’s what I’m trying to do but effing well difficult when your digestive system constantly reminds you that’s it’s there!).

Is there anything else I could do or try, I am at the point of desperation?

I am hoping someone on here may have been through this and can give me some advice or tips on something that worked for them as I’m getting more and more despondent and feel my life is over.

If you haven’t tried symprove, I have found that really effective. No other probiotic made any difference.

It’s one I haven’t tried continentallentil, I think they are offering a discount on the IBS network atm, I’ll have a look, thanks.

@Silverumbrella I've just thought of something. There's a drug called LDN - low dose naltrexone. At standard doses, naltrexone is used in cases of opiate overdose and alcoholism (iirc), but at much lower doses it has a different mechanism of action and different applications.

I remembered it's helpful for crohn's and wondered if it might help for ibs. So I searched and found this: https://pubmed.ncbi.nlm.nih.gov/17080248/

If you ask your gp or consultant, it's likely they won't know of its use or applications at low doses. But you can get it prescribed by some drs who know about it and you can find them online. More info here: www.ldnresearchtrust.org

SilverUmbrella I'm on 2 x Omeprazole twice daily plus Peptac liquid (or gaviscon if preferred) after every meal if needed (it is if it's a bad few days). x

Thank you comeondover, that’s really interesting, I will ask my gastroenterologist about this.
KnackeredBack I have found PPI’s make my lower gut issues worse (typical!) but do well with gaviscon which I take daily. I’ve not tried Peptac, is that the same as gaviscon? Im willing to try anything new.

I've found this interesting,
My dh has been really poorly since last October with ibs. Only seen gp and dietician but had blood tests and stool test to rule out nasties. He has a gastro referral for September.
I'm so worried about him as his ibs seems to be making him generally unwell every day. Can it make you so poorly? I'm terrified it's something else.
Sorry to hijack the thread, I really needed to off load.

Choccymumma I really feel for your dh, I don’t think people underestimate just how bad IBS can make you feel. It’s good that the stool and blood tests have come back clear. What symptoms does your dh have and what has he tried so far to help?

@Silverumbrella
Thank you.
He started with diarrhoea daily, headaches, abdominal pain, achy body, nausea, just generally unwell a lot of the time. He cant find a food trigger. He takes buscupan now as mebeverine didn't help.
He looks awful and we are both worried. He doesn't have a job where he can get to the toilet easily.

IBS makes you feel really really unwell - ill, tired, run down - just generally awful. I also had panic attacks, which went away after I recovered.
I'm going to suggest OP that you might be allergic to some foods - have you had allergy testing? In particular, have you been tested for soya allergy? The list of foods you can't eat makes me think you might have food allergies, esp the dairy and egg, one of which (can't remember which) is often associated with soya allergy. You could try taking anti-histamines to see if that makes a difference? Any history of allergies? They can manifest themselves in all sorts of ways. Can you eat well cooked meat, eg casseroles? I do think you will find acupuncture helpful.

Choccymumma Has he tried the low fodmap diet? It really helps many people. I used to heave really bad diarrhoea when I was first diagnosed, couldn’t understand what triggered it until I gave up diary as I realised any kind of dairy would go through me within hours. Does he take imodium for the diarrhoea? I find the standard imodium makes me go the other way but the dual action one really helps me, it’s tablet form and can be cut in half, I often find half is enough to help. Also there is a condition called Bile Acid Malabsorption which has very similar symptoms to IBS, it’s worth him asking for the scan to check for that. There are some really helpful FB support groups which I’ve found invaluable over the years in particular IBS support group U.K. and IBS support (official).

Just wanted to say I get it. My symptoms aren't that bad but I do get severe anxiety related IBS and totally understand the brain/gut cycle of getting anxious about needing the loo and then needing the loo because you're anxious.

You mention that you don't go out much anymore. Are your symptoms as bad when you're at home? I ask because if you're finding it's much worse when you're out and about it could be a subconscious anxiety reaction to getting caught short in public.

Epwell when you say allergy testing do you mean via the hospital or the intolerance testing such as the York Test? I’ve done the York test but never had any allergy testing in hospital. I haven’t noticed any immediate allergy type symptoms after eating but do suffer from a regular sore tongue and a weird raspy feeling in my throat a lot of the time but gp doesn’t think it’s anything significant. I haven’t thought of trying an antihistamine but will try it as we have many in the home due to dh and ds hayfever. I will definitely try the acupuncture, thanks.

Thank you.
He has tried to eliminate foods but hasn't found anything yet. He does take immodium but the dual action one sounds good. Does half stop the diarrhoea?

AriettyClock22 I do feel bad at home but probably worse when out but I think it’s because I’ve gotten in such a state not only worrying about needing the loo or having an accident out but also stressing what else it could possibly be as I often worry it’s not IBS but I do have awful health anxiety and appreciate that’s not helping the situation - vicious cycle overload!

Choccymumma half a tablet often helps me but I’m also low fodmap and as I say don’t eat dairy either so think that helps also. I find the addition of the simethicone really helps settle my stomach.

I mean proper allergy testing by a proper doctor. Skin prick or a blood test. I suspect you may be allergic - is your throat itchy? (Sounds weird but you'll know what I mean) There is an "allergy face" as well which allergic children often have - hard to describe but dark eyes and a redness around the mouth and lips and dry lips and pale skin. You can recognise it instantly if you know what you're looking for.

You can also get LDN directly from Dickson chemist by having an online consultation from them
https://dicksonchemist.co.uk/new/ldn-page/

Have a look at Mast Cell Activation Syndrome (MCAS), it can cause stomach issues as well as allergy-type ones, and is linked to IBS (and SIBO)

Epwell it’s what I call a ‘scratchy’ throat. I don’t have the face symptoms but will definitely ask my gp about this, thanks.
Thank you AriannasGuitarCase I will take a look.

Hi,
I'm back on this thread again!
My husband daw the gastroenterologist yesterday who was really good and has an interest in ibs. But he has referred him for a colonoscopy (which i expected and am glad about) my worry is, he has referred him on the urgent pathway so I'm terrified its bowel cancer. Do they normally refer that quickly? Sorry, having a wobble.

@Choccymumma my husband also has a few health issues and everything seems to be under the 2 week rule now. My DH has diverticulitis and has had a recent flare up, called Consultant Wednesday and is booked in for a CT scan on Monday, only one appointment left for that day. It’s exactly a year since his last scan, so hoping it’s nothing bad, DH is certainly seems happier that it’s being investigated. Not looking forward to the prep, last time he had it, he virtually spent all night on the toilet, but he knows it’s important to be as empty as possible and consultant thanked him for doing the prep and told him it really makes their job easier.

@Mindymomo
Thats reassuring about the 2 week rule. We have wondered about Diverticulitis for my husband. I hope you're husband is ok and the scan goes well.

Choccymumma I had a second colonoscopy on 15th July, the appointment had come through really quick (within 2 weeks of my consultation) I panicked like crazy but on the day they said it’s standard because I’m now 50 and my symptoms have changed/become worse. Thankfully, all was ok and the gastroenterologist who did the procedure said it all looked great. He took some biopsies to check for microscopic colitis which I haven’t had back yet. So now I’m back to somehow finding out just what is causing me so many gut issue?
I hope all goes well for your dh.

I can’t add much @Silverumbrella but I have had mild IBS symptoms for years and was starting to have occasional bouts of very severe pain - I think probably linked to perimenopause. both my parents have digestive issues so there might be a genetic element. Guided hypnosis worked a little bit on the pain but not much.

Anyway because of anxiety about other things/generally I was listening to an audiobook by Claire Weekes, Freedom from Nervous Suffering, in which she repeatedly tells you to ‘loosen and accept’ and specifically to loosen your tummy muscles. I was tightening my abdominal muscles all day long without realising it - ‘holding on’ to myself. After a few weeks of loosening and accepting I suddenly realised I hadn’t had a pain episode and that my digestive system was totally calm. I’m now a few months on and still no pain episodes and everything is working okay.

The fear and anxiety in your posts really struck me and i wonder if this approach could help - I don’t think it could possibly do any harm. I think the book is even free on Audible but I strongly recommend her other books as well.

Thanks for the co-codamol advice above @Silverumbrella .
I have been taking two a day ever since
weeks as well as silica gel and calcium carbonate ( thought that id give it all a go!)
10 days camping and all good. Almost Normal poos!! (If not too much information ) and I even ate kidney beans in chilli and a curry ( first ones in over a yea(! ). This week because of worries about possible codeine addiction I went down to one / then half a tablet a day .. ( still taking the silica and calcium) .. last two days the ' bubbling' and diahorrea is back 😢..
So Codeine seems the thing .. I am a bit worried about going back to the doc and telling her and asking for a prescription ( I have a bit of a daft thing about fear of Doctor disapproval..I know, but I get anxious about going .. . Maybe I have had too many unsympathetic ones .. or its 'fraud' fears .. )..

But yes codeine..( I think that id rather become addicted than carry on with diahorrea 5 times a day .. but 2 co-codamol a day of it works seems ok to me? .. )