u/Weary_Newspaper6133

M30. Not diagnosed, but heavily suspected BAM. Had it since I was 16, but it was manageable until about 18 months ago, when even eating 10g of fat a meal would sometimes give me a lot of urgency (as little as 15 minutes). Gastro had me doing low FODMAP with no improvement on random flares. I was then given ondansetron, which solved general urgency as long as I stayed low fat, but gave me mild constipation and hand tremors. It suddenly clicked as I read about BAM and I asked my gastro to give me cholestyramine, to which he agreed and prescribed. I’ve been on it for about 6 months.

It got rid of my urgency, and I appear to be able to eat a fair bit of fat in a sitting without urgency now which is great. But when I first started, I had one small episode for a week where if I ate a regular amount of fat a sitting (15-25g) I got terrible, terrible gas. Lasted for hours every time I ate and smelled like pure sulphur. I asked my gastro about this and he passed it off as “gastritis”. I was discharged and have an open appointment if I want it.

Last couple of months, the gas has just not gone away. I’m back to feeling like a prisoner in my house, because I can’t be around people for 6 hours after I eat, which is basically 100% of the time. I typically tried to stay around 45g of fat per day and take 2x4g doses, one with lunch and one with dinner. If I eat a large amount of fat in one go, it’s definitely worse. I haven’t been brave enough for really high fat foods (lots of cheese, burgers etc) yet.

Has anyone else had these side effects? I could only find one post that mentioned it, but with little info. My gastro (and all other nhs contact for that matter) has felt very dismissive, so I want the confidence from other people’s experiences to know whether it’s worth taking that open appointment. I’ve been threatened with a sehcat test if I return. I’ve read people have a a better time with the pill?

I will attempt to keep this as short as possible. Apologies in advance.

I'm m30. The last 10 years of my life have been a struggle. My aunt was diagnosed with hEDS a long time ago and it clearly runs in the family as my Grandmother, Mother, Sister and cousins have suffered varying amounts of EDS-like symptoms.

To start, I was diagnosed with ADHD and Autism age 7.

I just thought it was normal having aches, pains, stiffness, co-ordination issues. I've always had terrible balance. Doctors knew I was hypermobile, but I maintained an active youth. At 16, I dislocated my left knee. At 20, I herniated a disc in my back for no discernible reason. At 26 I herniated a second disc and since it's been completely unmanageable. Doing anything leaves me crippled for large amounts of time, even just going shopping for the day. Last year, I dislocated my knee again and managed to fracture my femur doing so. During the surgery I had an adverse reaction to the sedation and woke up, pulled the tubes out and started talking. The anaesthesiologist said this was a first for her. The surgeon also confirmed the knee issue will be chronic.

I've had GI issues since I was 16. They were manageable until about 18 months ago. I changed my diet and lost the weight I'd put on in my 20s. I then got food poisoning for the first time in my life. This made the symptoms extremely worse. After being gaslit by my doctors for a year, I was thrown to a dietician and did FODMAP. Didn't really help. Got sent to gastro. All tests, found nothing. Finally figured it was fat that was the main trigger and surmised BAM myself, asked gastro for Cholestyramine. It helps a little, but it's still all over the place. It makes leaving the house a real struggle, especially having to eat outside of the house. Eating in general just leaves me in pain and feeling very ill.

I'm quite confident that it's at least hEDS adjacent. I've mentioned it to every doctor I've seen about each issue, none are interested. The surgeon tried referring me to rheumatology, denied because "we can't cure it".

Has anyone had success with being diagnosed in the UK? How? Has it helped? Can I get help with other things? I'm genuinely miserable and trying to get anything out of public services feels impossible.

Even just how you manage things would be appreciated. TIA.