Maybe a rant/seeing if anyone has gone through the same

[Crybaby45]

Hi all, about 2 years ago I started having migraines with/without aura. Shortly after that chronic Diarrhea over 20 movements a day. I have had 2 years rejected referrals to gastro. I had a gallstone and I had a referral rejected because of it untill I had surgery to remove the gallbladder then had to wait to see if the Diarrheahad resolved ,even tho the surgents said it wouldnt resolve my problems . So fast forward till now I received a letter from my latest referral that I need the test for celiacs if that's negative, then I'm diagnosed with IBS D. They also want me to try colestyramine 4 daily. For bile salts. I also have low folate for 2 years that I have had 2 round of folate for 3 months I'm now on for a year. In all this time I have tried going back to work twice at night as my gut is less active over night. I was sooo tired, bloated, pain all on my inside to the point tlmy largest paint would hurt. I had an accident at one of them. My days off would be spent recovering from my measly 24hrs a week. It seems the more I do the worse I feel. I can sometimes get the frequency down to 5 times a day but mostly it's between 10/15. I have lost 5 stone due to diet changes for the gallstone. I can't eat when I have to go out. As there is a 50/50 chance it will start the Diarrhea in urgency. So sometimes I forget to eat all together. I have been trying my best for the 2year to manage what ever it is have have got and it never stays less for long before I'm right back to where I was. I cannot remember the the last time I felt good in the morning. My symptoms are nausea, being sick,Diarrhea, headache,fatigue, bloating,pain in my joints, pain in my abdomen,pain in my pelvis hips right down my legs , sharp shotting pain in my insides, thrush, random infections,blinding migraines and more. It's just is this the best I'm going to get? Is anyone else struggling this much ? I'm not yet 30 yet 3 years ago I could eat, I could go out,I could work.

[Crybaby45]

I have tried a food diary nothing specifically triggers me. My stomach does what it wants when it wants. Probiotics .pils anti Diarrhea meds. Some prescription meds. Still in a low fat diet. Just feeling fed up .

[Gee12345]

For the urgency / bowel regularity - I have found postbiotic Lactobacillus LB (Lbiome) to help

I used to buy it in france / Itlay before Brexit & ship it over.

But now found it in sachets in UK

It looks from the message you've written you may be using American english - so look for a porduct with LBiome or Lactobacillus LB - it could really help

Google for studies - plenty out there to assure for efficacy

[Yani_1012]

So sorry to hear about the extent of your symptoms and the impact they have had on your quality of life. It sounds like you have been struggling with multiple health issues, and it's understandable that you feel frustrated with the lack of progress in finding a diagnosis and effective treatment

it may also be helpful to explore other approaches to managing your symptoms, such as stress reduction techniques, dietary changes, and regular exercise. Based on your experiences, it might be helpful to read this blog casadesante.com/blogs/diges...

[Luisa22]

I do know about migraine symptoms and IBS because that seems to be what might have started my IBS, though I haven't had any migraine-like symptoms for a very long time now.

It was 2018 and the Beast from the East and I went walking in the snow for miles. I love snow and live in the country so it was lovely. I got a "migraine aura" with rainbow zig zags and scintillations. No idea what it was as never had headaches. Thought it might be snow blindness starting. Anyway about 10 days later felt ill every day with nausea, shakiness, weird things happening to me, one eyelid drooping, one eye reddened, legs going weak to the point of not working at all and I had to sink to whatever surface I was standing on , thought I was dying. Though weird....I hardly got any headache at all. Just twinges in my right eyebrow.

Then got an upset gut. Went to the doc. and he referred me to a Neurologist. The Neuro diagnosed me tentatively with migraine. Even he wasn't sure.

I haven't had a "visual aura" for ages now, well over a year maybe more. And the other symptoms seem to have gone fingers crossed.

But there seems to be a link between migraine and IBS.

I might have a tendency to the abdominal form of migraine. I don't know.

[Crybaby45 in reply to Luisa22]

Thank you for your reply. I did think I was having a stroke as half was going going numb face arm leg. The temporary blindness was scary really bad. My ibs has been quite constant since this started maybe having a good couple of weeks befor my body is like nope to comfortable. My migraines ..... well this year so far I have had 3. last year I had maybe 5 with regular head aches. Atlease 3 headaches a week intese enough for pain killers a week. I too feel ill for days after. Keeping my fingers crossed for you too 🤞

[Maureen1958]

Hi Crybaby45, It seems to me from what you say that you have BAM (Bile Acid Malabsorption) sometimes called BAD (Bile Acid Diarrhoea).

I have attached a couple of links to two sites that may interest you.

gutscharity.org.uk/advice-a...

bad-uk.org/life-with-bile-a....

The second site mentions that BAM is now classed as a disability. If you scroll down you will find a highlighted sentence about this and a link to another site regarding Disability Rights. Bearing in mind your age.

Sorry meant to get back to you yesterday but was feeling really rough yesterday.

All the best

Maureen

[Crybaby45 in reply to Maureen1958]

Hi there I hope yor feeling better today 😊 I was reading through the links you sent to me. I was like that sounds like me. My gp has said it could be bam but I need to see gastro for a formal diagnosis but they have looked at my notes and test and said if it's not celiacs the diagnosis is ibs d. The celiacs test was negative.I am hopeing to speak to them in April. I only eat once most days as eating encourages movement. Thank you soo much for taking the time to reply. I think when I do talk to them I'm going to suggest bam. Its just so frustrating.

[Iesgobdafydd in reply to Crybaby45]

Suggesting BAM sounds like a good idea, and then if they say no it isn't, asking them why they think that, because it could be useful information and you're not going to get another chance to ask them in a hurry. Sometimes in the past I've hesitated to suggest things to doctors and regretted it later.

Joint pain, chronic fatigue, IBS and occasional partial migraine corona (usually a partial coloured ring, once a large blind spot) without any kind of headache are all things I've had as a consequence of distorted connective tissue following repeated dental injuries in the same place in the past (TMJD). I also had recurring thrush for years, which I suspect was also related though it's hard to be sure. TMJD typically affects the jaw, head, neck, shoulder area, but there is a higher than random co-occurrence of it with IBS. I have mildly hypermobile joints, and possibly that may have let the distortion spread around my entire body rather than limiting it to nearer my jaw. I'm not sure if you could have something similar, but there's some overlap with your symptoms, so I'm just throwing that out there in case it's useful.

It's horrible being hit by something like that when you're so young, and it sounds pretty severe. I really hope you can find something that starts to help soon.

[justmyluck]

I too have migraines and it makes it worse for IBS D. I find that by eating small meals in the day is better, but also - no gluten, no dairy and no sugar if possible - you can get sugar from fruits. That makes it a little better and lessens the amount of times you need to rush to the bathroom. Also magnesium is very important for migraines so do take one each day after your meal. I also take probiotics at night on an empty stomach. All in all this sucks big time but we all have to live with it and find solutions that work. So please give it a try and see if that helps. I don't like the idea of medicine unless it's absolutely necessary.

[Crybaby45 in reply to justmyluck]

Thanks for your reply I have tried small regular meals befor and probiotics. The magnesium is a new idea. I may try them all together it's worth a shot. I am the same about taking medication. I feel so unwell most of the time its now normal.

[justmyluck in reply to Crybaby45]

Yes Magnesium definitely helps with the amount and frequency of the Migraines. I have experienced it personally and it really helps. Also cut the gluten, dairy and sugar - it really helps. May the universe bring you luck and health, Amen. (I am just spiritual not religious