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.

Would anyone be up for a coeliac chat thread? - www.mumsnet.com/talk/autoimmune_disease/5019243-would-anyone-be-up-for-a-coeliac-chat-thread

What Is Wrong With Me? Gynae or Gastro? - www.mumsnet.com/talk/general_health/5067850-what-is-wrong-with-me-gynae-or-gastro

Your symptoms are fairly similar to how I feel on and off. Complete urgency in the morning etc. I can see you’ve already tried so much, it must be so difficult and frustrating for you.

For me, I have only recently been able to control it by not eating past 6ish, and in particular avoiding anything sugary late in the day. I have also been doing regular pelvic floor physio (I’m 9m pp from second baby). I also have CBT for anxiety. So I don’t know if there’s one magical trick, but a combination of all sorts of approaches to try and calm my gut.

Fingers crossed you find a combination of things that can work for you and you can start enjoying yourself again.

I know you said you tried keto but did you have any improvement in the two weeks? Keto is an anti inflammatory diet already and it improves my gut issues after 2/3 weeks.

It doesn't need to be expensive as it should be high in fat more then protein but I do understand if you can't have eggs or dairy that it's harder for you then most. Lots of people see an improvement just by cutting out the big carby things. Pasta, rice, potato and bread. It tends to be lower fiber too which may give your gut a rest?

It was £80 a session and I had 6. I stopped as couldn’t afford anymore, but it’s definitely had an impact. It was an appointment about every 2-3weeks

I don't think gut issues are always caused (or cured) by diet. I have the same symptoms except mine were only present at menstruation until I started hrt/hit perimenopause and then it became chronic. I've always been convinced my symptoms were down to hormones. My gp dismissed this but did refer me to gastroenterology. IBD was suspected but various investigations have ruled this out. My gastroenterologist however was in agreement that my symptoms could be caused by hormones and is currently doing a huge study on IBD symptoms and female health. He said the womb is a hugely inflammatory organ. IBD symptoms are twice as common in women on hrt than those not on hrt.
I still have no answers however and think I'm going to have to figure this out by myself somehow.
My mum suffered IBS symptoms when she was going through the menopause for a few years but no longer does. I'm hoping mine are temporary too!
I hope you find some answers OP.

Thank you, that’s really helpful. I’ll check that book out, I did watch her Netflix documentary the other day, it was very interesting.

Inhave only just gone onto the waiting list but have a follow up in a few months so will ask the gynae when I see him.

You are right, I definitely think the issue needs to be approached from lots of different angles and I don’t think my issues are caused by one thing alone. It would be wonderful if it were as simple as removing one food or adding in a supplement but like you have tried, it’s a matter of trial and error.

I would love to win the lottery, not for anything material but so I can go hammer and tong once and for all and try absolutely loads of things in the hope something will stick.

I hope you manage to find a strategy which helps you.

I found that it was so restrictive as I obviously don’t eat dairy and seem to be intolerant to eggs and chicken. I also find red meat gives me a terrible stomach too so that just left fish, turkey, nuts and apart from keto safe veg, not much else.
I will try cutting back on my carbs though, that might be a better option for me atm.

Newname197373 I will look into it, thanks

Although I have had IBS since I was 26 it wasn’t until I hit 45 that the symptoms became out of hand, before that they were quite predictable and I kind of knew what would set things off but these last 6 years have been crazy. I never experienced the upper digestive issues until my 40’s either. I’m with you there, I think peri has sent it to a whole other level.

I do recall my mum having a lot of unpredictable gut issues when she was around 50, I remember her once having ran all the way home from a dog walk with a doggy belly, maybe it is something in our family, my sister is 48 and having some issues too. Sadly, mum has dementia now so I can’t ask her.

I hope you find something to help too, not much fun going through menopause as it is but with the addition of a crazy digestive system that is just about enough to finish us off isn’t it?

For me, a low carb high protein diet has helped. I eat a lot more fruit and veg than i used to and it does seem to have evened out the stomach troubles. A couple of weeks ago we had a bit of an unhealthy week and I really noticed my stomach going back to the cycle of constipation/diarrhoea.
Also, re eggs. Perhaps if you manage to find a diet that helps you, you could try to re introduce them? They're so versatile and filling.

Also, I find this is a viscous cycle with anxiety. It's very difficult to deal with.

there is some very new developing research on a link between endometriosis and certain gut conditions. It's not about endometriotic lesions in the gut, it's a about a specific bacteria that can be treated with specific antibiotics. https://www.juno.bio/blog/study-connects-endometriosis-fusobacterium#:~:text=The%20study%20showed%20a%20significant,for%20bacterial%20vaginosis)%20and%20chloramphenicol.

Have you tried cutting out ultra processed foods?

I am trying to work my way towards reducing my carbs at it does seem to really help so many, especially in perimenopause. I just find certain carbs so comforting, they leave me satiated. I didn’t feel that when I tried going high protein but maybe that’s more psychological than anything?

It would be wonderful to be able to eat eggs again, I used to eat them regularly and like you say, they are so versatile. I don’t have a sweet tooth and I just can not stomach sweet breakfasts, my go-to was always eggs for breakfast, I miss them so much.

That’s interesting wanderingstar23

LouLou198 I don’t really consume many upf. Because I follow the low fodmap diet many processed foods have high fodmap ingredients so I tend avoid those and to stick to basic foods and make things myself.

I’ve just looked back at my report from my microbiome study and it’s states that my Fusobacteria is at optimum levels so not sure what that means for me and my endo but I’m going to look into this a bit further.

maybe Turkey Tail mushroom could help too

I realise this is an old chat, but did you have biopsies done when you had colonoscopies, to check for microscopic colitis? Unless they take biopsies and examine under a microscope, this form of IBD is missed entirely and the colonoscopy declared all clear, when actually it's a fairly treatable IBD once identified.

https://gutscharity.org.uk/advice-and-information/conditions/microscopic-colitis/

Just a thought. I hope things are improving for you.

I'm similar.

Follow the FODMAP diet where you cut out all the foods listed (they are ones known to aggravate your condition).

You slowly introduce them again until you can eventually work out which are your friend and which are your enemy!

Thank you, they took three biopsies during my colonoscopy last summer, all came back clear for microscopic colitis.
Sadly, things are still not great but I'm coming to the conclusion it's perimenopause causing these issues.

I've been following the low fodmap diet for 5 years, worked with 3 different dieticians. They've come to the conclusion I'm one of the 25% the duet doesn't work for. Typical 🙄

There's a Facebook group you may want to check out called the Gut Health Protocol. Lots of people in there sharing their learning.

Sorry, haven’t read all the PPs but wanted to ask if you’ve been checked for Bile Acid Malabsorption? It causes chronic, often daily, diarrhoea. If you haven’t already been checked then I’d ask, if just for completeness.