Bile acid malabsorption

[Netbet22]

I got diagnosed with bam over a year ago taking colesevelam for it i take 1 or 2 a day but it has my bowel movements all over the place its all or nothing and usually in a formed mush and sticky i try to eat healthy but just wondering if any one else has bowel movements like this i have ibs aswell and gastro said they could be overlapping eachother watever thats supposed to mean any advice

[MyStar86]

do you have any other bowl symptoms? Do you have any pain? Do you have your symptoms 24/7? Has taking the medication helped improve your symptoms?

[Netbet22 in reply to MyStar86]

Yes i get pain upper stomach above belly button all over right side like knot feeling i do suffer with constipation aswell , colesevelam does make me feel better but think it adds to the bowel problems have asked doctors for a ct scan wont give me one and to be tested for ibd totally refuse obviously something more going on

[MyStar86 in reply to Netbet22]

Do you have pain all the time or just when you eat? What tests have they done on you? Have you had a colonoscopy etc? That’s weird that they totally refused but took the time to test for BAM so sorry I know how awful it is putting our lives in doctors hands it’s devastating when they won’t help fully. How do you feel the pill make your bowels worse?

[Netbet22 in reply to MyStar86]

I have had test done ct scan bout 9 year ago colonoscopy 7 year ago and a pill cam done in 2018 this one came back with problematic and symptomatic ibs docs are goin off these tests keep saying to them that they were all ages ago but just wont do any further investigations its like am banging me head off a wall .

[MyStar86 in reply to Netbet22]

That’s just crazy is there a way that you could ask for a second opinion? A lot can change in even a year so they need to rethink this for you and start again. Do you have any option to have an initial consultation privately just to get the ball rolling and then ask to be put on their nhs list? Do you have pain all the time??

[Netbet22 in reply to MyStar86]

Yes most days i have pain in upper stomach goes round to ribs i have a doctors appointment next monday so will be asking if they can refer me again to a different gastroenterologist, over the years i have had borderline colprotin levels in stoole samples and i have lost over 3 stone in the last year its just worrying

[MyStar86 in reply to Netbet22]

That is a lot within a year so I am shocked that they are not taking any notice of it, if I lost 3 stone I would be dead. The only way for them to know if there is inflammation in the colon is via a colonoscopy but one 7 years ago definitely should not count as I said a lot can change in a year. I’m glad you have asked for a second opinion because that’s awful and if things get delayed I would definitely turn to PALS to make a complaint as you are left suffering so they are at fault here and if they can’t find the cause they need to refer you on to someone who can help!! Sounds like they didn’t even do the proper tests to check that you actually have BAM because taking the meds if you don’t really won’t help your gut symptoms. Have you had your gallbladder removed or even checked as there could be a stone stuck in the bile duct if they haven’t done an MRCP then they won’t know and that would explain your pain. A simple ultrasound would show stones in the gallbladder but an MRCP would be needed to check for stones outside the gallbladder. This has definitely been poorly managed I would turn to PALS based upon what you have said.

[Netbet22 in reply to MyStar86]

Yes i have had my gallbladder removed 9 year ago , i did get the test for bam the se cat bile study over a year ago , i did complain to pals but didnt get anywhere always cover they own backs will see wat doctors say on monday and if i dont get anywhere will be getting back intouch with pals as i need to get to the bottom off whats going on