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.

The trouble is, there is so much focus on "gut" health that people forget the gut is made up of different parts. IBS is your large intestine and if the issue is at the (ahem) bottom end, all the probiotics in the world won't help.

I didn't find Symprove any good.

Have you had a breath test for SIBO? If not, I would definitely be requesting that tomorrow

cherryassam the egg thing is weird as I could eat them freely u til about 3 years ago and then just developed some kind of intolerance to them. I will check out the dietician on the IBS network, that may prove to be helpful.

Nouvellenovel I eat spelt sourdough. I have made a couple of buckwheat breads which turns out like bricks lol. Maybe I need to have another go at it. I will try the liquorice dgl, I’ve seen that mentioned a few times on the support groups I follow. Is the hay diet food combining?

Oh goodness you sound just like me, bloody miserable isn’t it?

I can’t believe the waiting times for scans and simple procedures these days, it’s getting ridiculous. I’m sorry you are struggling with this too.

I have asked my gastro several times about a SIBO test especially as the comprehensive stool test I paid for last year came back with dysbiosis and I have all the symptoms of sibo. She says the test is extremely unreliable and that sibo is quite controversial.
Saldy, this means that I would have to pay privately for the breath test and I just don’t have the money for it especially as I’d then have to pay for the Rifaximin privately and it’s £200 for a 2 week course and many people have to take several courses to fully kill off the bacteria (I’m on several SIBO support groups and it appears to be an absolute bugger to kill off).

Didn’t help me either LadyEloise1 and it’s so very expensive.

Have you had the coeliac blood test and also tried excluding gluten for a month? Ditto lactose?

The relentlessness of your symptoms sounds as though your gut is being constantly irritated by something.

@Grownyourownway I've had chronic SIBO for a long time, it is indeed very hard to get rid of. I'm very lucky to have an excellent Gastro who knows all about it and agrees that the NHS is way behind in diagnosing/treating it. They look to the US for guidelines on treating it

I buy the tests privately because the NHS only tests for Hydrogen type, and I have both Hydrogen and Methane types (Methane type is now called Intestinal Methanogen Overgrowth (IMO))

Personally, I would do a private test if affordable to you, and if it comes back positive then you could ask for a second opinion from a different Gastro. If it comes back negative, then at least it's something else ruled out

The York Test might be worth looking into.

I’ve not touch dairy for 20 years as I know it’s a big no-no for me.

Ive had both blood tests and a biopsy of the stomach lining to check for coeliac disease, both were negative. I went gf for a full year but felt no better although I may try it again to see if I have any luck this time round.

It definitely does feel irritated and as though something has made my digestive system so unhappy but after several years of keeping a food diary I just can not see a connection to anything I’m doing, it’s so frustrating.

I’ll have to start saving for the test, I think the Healthpath one is the cheapest atm.

Can I ask how did you eradicate yours? With Rifaximin? Or anti microbials? Did you feel unwell whilst on treatment? I see so many on the support groups going through die-off symptoms and it seems brutal.

They say on the groups that until you find your route cause it’ll always come back, have you found that to be the case? Did you find your route cause?

I do follow Dr Pimentel and have his books.

Sorry for all the questions but I definitely think I may have SIBO.

VentBox I did the york test a few years back. It flared up eggs and dairy which I’d already eliminated from my diet as I know they cause me issues.

Have things like histamine intolerance been explored? I think that might be behind some of my issues

cherryassam I often wonder as I have other symptoms such as a sore tongue, raspy throat and stingy eyes. Maybe even MCAS? Thing is that no one I’ve seen on the NHS seems to take these things seriously. They just throw out suggestions for antidepressants, ppi’s and the standard IBS meds and aren’t interested in entertaining any other potential causes.

I feel your pain. I have apparently had IBS for 25 years but the last two or so years the symptoms have worsened. I alternate constipation with the toothpaste consitency poos that don't wipe cleanly at all and just smear. I've had tests Etc but nothing shows. I've been told it's various things. They thought it was Diverticulitis. Then Sibo. Then gallstones. Then lactose issues. Also checked for gluten. Nothing.
I'm unusual as I can eat onions and other high Fodmap things. I can sometimes go weeks or months and then I get a flare up that lasts and lasts. And it definitely feels like inflammation.... everything is tender and the pain is intense.
I feel it ruins things as I can't concentrate when I'm having an attack and if I'm out for a meal for example then it's impossible to carry on. I've a fear now of days out Etc in case of an attack.
I have no answers and just offer sympathy as it's miserable not knowing when it will strike.

Unfortunately, after multiple courses of Rifaximin and Neomycin/Metronidazole (including a 3 month course), mine has never been fully iradicated. Mine is most likely due to slow gut motility because I have EDS, but I've never been able to get to a stage where it's just a matter of stopping it reoccurring. It also flares up my other conditions. Gastro is currently looking into the Elemental Diet, because I can't keep taking antibioics, which can be pretty brutal like you said

This is the company that I always use for the tests, and my Gastro has no problem accepting them as accurate
https://smartnutrition.co.uk/shop/sibo/

I also have MCAS, which is one of the conditions that my SIBO flares up

I started having random hives around the same time as my IBS got very bad and I do think they must be connected.

My GP has been very good with doing all the tests etc they can do but I’ve found the NHS dietician service here are very much as you describe. And it’s difficult to identify food intolerances at the best of times! I think I probably have low lying inflammation all the time and then the massive flares of pain, cramps and diarrhoea / endless unsatisfactory bowel movements when I ingest a trigger.

The very good GP at my surgery who has a special interest in gastroenterology, along with the other very good GP who has a special interest in women’s health think I have some functional muscle issues with my pelvic floor as when my IBS is flaring I also often have frequent and urgent urination. So that’s another referral I’m pursuing.

It does feel endless though. I am lucky that I have an endlessly supportive DH and my work are also very supportive because otherwise I think I’d be struggling even more.

@cherryassam Frequent and urgent urination can also be caused by Mast Cell issues

@AriannasGuitarCase I didn’t know that! That is interesting… I know that my next research rabbit hole will be

Have you tried fasting? I did a four hour eating window every other day and ate very simply within the window. I did for a couple of months and it really sorted my guts out.

The wind is awful and painful when you can’t fart. Mine is worse in the evenings. Has anyone mentioned SIBO to you? I’ve got a test in waiting to be done at a convenient time. They’re £200 to get online but could be worth it.

I might have missed it but have you been on propranol at all? I was given it for mild tachycardia and have found it a good low level help with the physical symptoms of anxiety - I have seen one or two people on MN say it can help with IBS-type symptoms for that reason.

It could be a totally random food? My husband's gut is super irritated like this by cabbage, cauliflower and sprouts to the point he feels really ill - his mum is the same. Could you get some allergy testing done privately? I don't really know how that works so maybe that's a silly suggestion.

Have you tried activated charcoal for the gas? I don't know if there's anything to it but DH says it helped him.

Apologies if I've missed these things being said.

High dose turmeric for inflammation?
Cold water swimming? (Random I know...but it seems to help with some quite random things...)

All the sympathy to you and others on here suffering. I had a bout of post-viral IBS lately which luckily cleared fairly quickly but was so miserable and limiting while it lasted.

See a BANT registered nutritionist. Evidence based but more alternative than dieticians