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Had BAM since 15, only diagnosed 4 years ago

Hello everyone - I'm a 54 year old female who has been "living" with BAM since I was 15....a severly lifestyle limiting illness that has caused me so much grief and embarrassment only others in this forum will understand. I only had a SehCAT after working with someone who was a Hepatologist and suggested Questran. My old GP said he wouldn't prescribe it until I'd had the scan and hey presto 30 years after being patronised and told I'd grow out of it I had a diagnosis. I came across the Questran manufacturing problem and gave up on it going back to good old Loperimide. I'd been surviving by taking up to 8 a day I knew it was working when my mouth and throat went dry.(side effects of cellulitis, ankles like balloons, feet splitting open and walking like a duck on hot coals).

You can't discuss the symptoms with work mates or Managers, after all how can you describe being incontinent driving to work and have to turn back to clean up and change? How can you explain the anti-social side effects, explain how you can't go out with them for the evening, how you, well YOU know what I mean.

After moaning and bitching about how bad it was to my cousin on email I finally decided to grasp the nettle and went to the Doc's after arming myself with information from Google about 'new' treatment. It was difficult explaining and embarassing but he was very sympathetic and impressed with my research and agreed to prescribe Colesevelam although it costs the NHS about £90.00 a month. Now into the second month it has made a difference although as mentioned in other threads what I eat does decide how my day will be. I've upped the dose to 3 tabs each meal and only eat twice a day (a hang over from old times when I couldn't eat or drink before leaving home because of the danger of an unplanned bowel movement). Now I can walk the 15 minutes to work without having to leave half an hour early because I may need to turn back home. I'm still not able to go anywhere unless I know there the toilets are (just in case) and have panic attacks if caught in heavy traffic but after 30 years of experience you can't unlearn your reactions in a few weeks - I'm getting there.

BTW my cousins eldest had the same symptoms as me (started at about the same age too) and she dragged him off to the GP to demand a scan and yes, he also has BAM. My sister has a very mild form of it and together when were out shopping we plan our route after ascertaining where the toilets are and double checking they're open (don't want to be caught out). I've booked a holiday in September, a coach trip to Switzerland (and yes the coach has a toilet) and will take a shed load of Loperimide with me to back up the Colesevelam! I'll keep you posted.
 
Hi! Welcome to the forum!

Thanks for sharing your story. So sorry to hear that it took so long to get you on a treatment that helps your debilitating symptoms - and that those symptoms were dismissed and ignored!

Very pleased to hear this new treatment is changing your life for the better :)

Please do continue to update, share or vent. On this forum we know all too well about living life with unpredictable bowels.
 
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