I am at a complete loss, how do I get my gut health back on track?

[Grownyourownway]

Sorry in advanced if some of this is tmi (I promise this is a genuine health concern of mine) but I’m getting myself in such an anxious state over my gut health that I no longer know what to do anymore.

My issues are daily, ongoing and wearing me down.

I have a bad tummy and weird stools most days. Have to go the moment I wake up. Loose but not fully diarrhoea (although that can sometimes strike at any time, out of the blue) but it’s kind of mud/peanut butter/toothpaste-like. Sometimes, like this morning I have to get to the loo quick yet other times I can sit there for ages trying to squeeze out this toothpaste poop it leaves me with a feeling of incomplete emptying.

I have such a horrible gut. I have suffered from IBS for 26 years and it is just getting worse. I no longer know what I can eat, I am scared to eat if I’m honest. I stick to low fodmap eating, I don’t eat any dairy and I only drink water but nothing helps. I even went gf for a year and saw no real difference in my symptoms.

I have tried all the medications recommended, Imodium just holds everything back (and often just constipates me) and the moment I stop taking it the floodgates open. Mebeverine or peppermint oil never help either. Probiotics make me worse. PPI’s make things worse (give me diarrhoea) and amitriptyline/nortriptyline left me feeling like a zombie.

Gut directed hypnotherapy is lovely but does nothing to help (I do listen every day though as it helps me to sleep). I walk my dog every day so get plenty of gentle exercise.

I also suffer from daily upper issues and experience lots of nausea, burping and gas. Literally, the whole of my digestive tract seems affected. I have had all the tests/procedures (2 colonoscopies, a gastroscope, biopsies for h pylori, coeliac disease etc), a bile acid scan and various stool tests all via my gastroenterologist and because these all come back as normal I feel she has just given up on me, she really doesn’t want to know anymore despite my issues getting worse. She basically implies that it’s all in my head (I have a telephone consultation with her tomorrow but I don’t hold up much hope of any help form her).

I can’t function properly, especially in the mornings and am often scared to leave the house because my symptoms are becoming increasingly unpredictable (I no longer enjoy a social life, I just endure my part time job for fear of having an accident and then come home). I am lucky that I only work part time but I am going to have to give up my job soon as I can not predict when my tummy will get upset. I have no idea how I am going to bring any money in without working. This is a constant source of stress which is obviously not helping. It affects my relationship with my dh and dc and my friends as I no longer want to go anywhere as my guts dominate everything.

I feel constantly exhausted and washed out. I also have constant pelvic discomfort from endometriosis and adenomyosis but it’ll be a full year before I get any surgery due to long waiting NHS waiting times. I feel a complete mess.

Can anyone offer up any advice, something I may not have thought of that could possibly help me? I am going crazy.

I use this Symprove Probiotic Supplement - Lowest Price Guarantee

No personal involvement from the company except for it being reconmended to me by a doctor and buying a 3 month supply

They have a face book group and you can see who people get on

elizabethdraper thank you. I have tried Symprove and other probiotics but they make me so much worse.

If amytriptyline did not help there are other drugs in that class that might.

Gabapentin or pregabalin are possibilties.

In addition you may have endo deposits on your bowel which will not be helping the situation. Are you having periods? If you can stop them then that will also help.

I know you've tried hypnotherapy but tapes tend to be rather ineffectual. Have you tried in person (Zoom) hypnosis? It gets to the actual origin of the issue rather than simply being soothing.

Thanks, I will ask by GP about trying other drugs.

I had a mri scan which picked up the endo and adeno. It did state deep endometriosis but none seen on the bowel but obviously I wont know that until I have my lap and excision surgery. Sadly that’s a good year’s wait away.
I am still having periods (although at 51 I was hoping they would soon stop) and it’s been suggested that I try the mini pill. I need to get myself on that as I’m certain my hormones are flaring everything up.

I should have stated that the hypnosis recordings are personalised ones from face to face hypnotherapy I have had.
I have had years of hypnotherapy but sadly it’s never been anything other than a relaxing experience for me.

If you are willing, you could try a strict ketogenic diet, or even carnivore. I have heard a lot of people sorting their guts out this way.

Have you tried Enterosgel? https://enteromed.co.uk/

I have heard good things from other IBS people (Also recommend joining the IBS Network as I find their content helpful and knowing I’m not alone has been huge!) It has gone through trials in the NHS and been deemed successful and effective.

It might be worth seeing if you can see a dietitian who specialises in IBS - they might be able to help you see if there are any food triggers that you haven’t identified. My triggers are really weird and not the usual triggers for IBS sufferers, but if I have them it’s like my whole digestive system from top to bottom goes into painful burning spasms.

You could try other medication potentially - I am on Sertraline for my mental health but it makes a huge difference to my IBS too. When I tried to come off it once, it sent me into a really long IBS flare. Sertraline might not be right, but there might be other meds which are.

Have you tried YourGutPlus? My DS took it for over a year and it definitely helped his gut health. He tested negative for coeliac disease but has obvious issues with gluten. Cutting it out of his diet was the only way to go for him though he's able to tolerate small amounts.

I have so many people suggest this, I tried it for two weeks but I couldn’t afford to keep it up though. Good quality meat and fish is so expensive and I’m intolerant to eggs.

I did the 21 day course of enterosgel back in March but it did nothing for my symptoms sadly, I had high hope’s especially as it was costing my £15 per week!. I’ve been a member of the IBS network since I got as first diagnosed in 1998, they are very helpful.

I am under a nhs dietitian but they just tell me to continue low fodmapping and keep with the hypnotherapy which obviously isn’t helping much atm.

I’m still experimenting with meds. Sertraline and Citalopram gave me awful diarrhoea and the TCA’s made me zombie like and as I drive for my job I felt unsafe so had to wean off them.

I have a telephone consultation with my gastro tomorrow and will ask her what other meds she could suggest. I do think I need to take something as diet etc isn’t cutting it right now.

I’ve not heard of that. I will take a look, thanks.

Sorry to hear that nothing has been working, it’s so tough I know

I found my NHS dietician was not very willing to look beyond the usual IBS triggers - mine aren’t FODMAP at all. I found better luck with a private dietitian who was willing to look beyond the normal and who also was a specialist in food intolerances and allergies more widely.

@Grownyourownway I had all the symptoms you describe, especially the morning poops, which were always a total emergency. I decided to give a gluten free diet a go, but right at the same time I also had a few polyps removed as I was having tests for ovarian cancer due to all these symptoms. Well after these two unrelated things, I started to feel so much better, and I have carried on the GF diet. My bowels are back to normal, no more rushing to the bathroom on a morning, bloating has disappeared, and I feel generally better. But if this is the diet or the polyp removal, I'm not sure. But I do notice if I lapse on the GF and have normal bread or a sneaky sausage roll, I get the pains and bloating back, so I feel it's more likely that it's the GF diet helping. Has your dietician not suggested this?

Would it be OK to DM you?

I have awful guts too. Not quite as bad on the poo front but I have some follow-through moments which were awful and I get terrible wind.
My issues are mainly upper with GORD happening for nearly 2 years now.
Ive also had loads of tests and been treated for h pylori.
GPs think I have some form of IBS too but I don’t really get pain very often (I used to get trapped wind a lot but rarer now as I just fart!).
I am v careful with my diet but I think one day I should just strip it back totally and add things back in gradually as I find it hard to pin point what gives me the wind (it’s not there every day but I get bad phases). It’s hard as you say, your relationships suffer when you can’t go out to eat easily etc. Have you tried just eating really bland like chicken, white fish, sweet potato, white rice and then adding in slowly to see if a food is the culprit?

The anxiety you’re describing will undoubtedly be making this much worse. Can you focus on addressing the anxiety? I’ve seen this approach make a huge difference. Relaxation techniques, guided meditations, worry time etc. can all be really helpful.

I feel this could be my issue.
Low fodmap is now the go-to for all NHS dieticians and they seem unable to consider any other possible causes these days. I never actually got to a point of no symptoms on the low fodmap elimination stage to actually start re-introducing so am kind of stuck on low fodmap as I now fear high fodmap foods. I react badly to several apparent low fodmap foods such as chicken and eggs. The dietician is fully aware of this yet has offered no other help.

Were they uterine Polyps? I have a history of those and have had them removed quite a few times but they alway grew back, I ended up having a uterine ablation in the end which has sadly failed and left me in a lot of pain because of this I requested a mri which has lead to the detected the adenomyosis and the endometriosis.

I did go gf for a full year around 8 years ago but I didn’t get much relief at the time. The dietician has told me I should be fine with low fodmap levels of wheat products including sourdough but I think maybe I should try a full gf diet again to see if I get any relief. I have been reading that it’s also good for endometriosis, apparently the gluten can cause more pain?

Of course Eyesopenwideawake that would be fine.

I would say that much of my issue is wind/gas related. That seems to be the hardest of all the issues to treat doesn’t it?
I have tried so many things diet related but nothing really helps. I’m certain I could eat only dust every day and still have symptoms!

EdgarsTale I do believe the stress/anxiety is the main instigator to all of this.

I try so much to rid myself of it but I’m so naturally anxious, have been since I was a small child, for some unknown reason.

I have had endless CBT sessions, counselling, psychotherapy, EMDR and countless hypnotherapy sessions. I still listen to my hypno recording every day and the Calm app every night. I have tried reflexology and acupuncture. I also exercise every day and do yoga. I try so much but nothing sticks.

Yes I’m able to tolerate all sorts of high Fodmap foods in great quantity but one of my triggers is eggs too! They make me feel absolutely terrible.

I think the IBS network offer a reduced price dietitian service - might be worth a look?

@Grownyourownway have you tried buying ancient wheat flour and making your own bread.
Modern wheat doesn’t agree with many people.
I also take liquorice dgl for heartburn.

Years ago I tried the Hay Diet, I think it works if you’re strict.

I feel your pain. I've had "mild IBS" for about 10 years but the last 12 months my symptoms are daily and unbearable along with severe reflux. I'm on a non-urgent wait list for colonoscopy because my Qfit test and calprotectin tests were both negative, I rang the department and they said it's about 18 months wait.
I've had a barium swallow test, abdominal ultrasound, blood tests. I take a daily PPI and gaviscon (half the time doesn't even work). I take laxido daily after a feacal impaction in February but they cause their own side effects.
Every day I am nauseous, my stools are horrifying (flat as pancakes when formed, mush, toothpaste as you described) lots of straining, piles, gas, gurgling, bubbling, nausea EVERY day (this is the symptom I struggle with the most), struggle to eat. I'm fed up and you're not alone I promise!