Our BAM Stories

 

I would like to say a massive thank you to everyone who has shared their story with me to feature on my blog. I'm hoping that these posts can become a place for people suffering with BAM symptoms or recently diagnosed to find support. The stories in this blog are from Andrea and Lisa. Andrea was diagnosed with BAM about 9 years ago following treatment for cervical cancer and Lisa had her gallbladder removed 28 years ago, going far too many years before finally being diagnosed.

Andreas's BAM Story

Age 54 | Diagnosed approximately 9 years | 

I was treated for cervical cancer late in 20212 (chemotherapy, external beam radiotherapy and brachytherapy). Was told the risks of late effects to bladder bowel and vagina etc. but basically was more concerned with beating the cancer so powered on.

My bowels were never the same again and seemed to be getting worse and I was referred to gastro team. They wanted to rule out any other issues rather than assume radiotherapy related so tested for bacterial overgrowth in bowel, coeliac disease, lactose intolerance and did SeHCAT test for BAM and results were positive for Lactose intolerance and BAM and shortly afterwards I was confirmed to be B12 deficient and this often goes hand in hand with BAM or bowel issues.

I have a radar key now, an I just can't wait card and my employer is aware and sympathetic but I am stubborn. I don't want to be viewed as a victim or someone that people need to make allowances but working at home and being near my own loo on the bad days helps. There is little awareness of BAM in the medical profession and more generally and I think it gets grouped with IBS but it's very different in my opinion and so unpredictable too. 

I just wish people understood without having to explain in graphic detail but I'm trying to get on with life without having constantly justify why I can't make this night out or that party or that meal out. It can be frustrating that's for sure!

Lisa's BAM Story

Age 56 | Diagnosed 2 years |

I had my gallbladder removed 28 years ago due to gallstones that caused severe pain attacks. I recovered well other than having severe diarrhoea within a week. I thought it was just the disruption of having my gallbladder removed and struggled on for a couple of months during which time it became worse than ever. I eventually had to take sick leave from work

I went to the GP who sent me for a barium swallow where they found nothing and he also said it was nothing to do with my operation. I was however convinced it was. He said it was anxiety and IBS so sent me to hypnotherapy which obviously had no affect. I struggled on and on until eventually I had to leave my job as it wasn't sustainable, I had severe anxiety around leaving the house and felt unwell most days. I had a young family so needed to work and got a job waitressing at night when my stomach seemed to be a little more settled. 

I struggled on and seemed to have more settled periods but still had symptoms which included severe stomach cramps, burning stomach, a very limited diet and everyone knew I had a "funny stomach". I then got a job where I could use the toilet if I needed to as and when, although I tried not to (as if, if you know you know). 

Fast forward 5 years ago I retired early and became really unwell with my stomach and decided enough was enough and I paid privately to see a gastro consultant.  I told him my history and he immediately said I'm pretty sure you've got BAM. He arranged for a trial of binders and arranged for a SeHCAT scan which came back that I have moderate BAM with 7% retention. 

It was bittersweet, I knew what was wrong finally but I knew I had it forever and had been failed. I no longer take binders as the side effects were too much for me. I have some good days and then days that aren't so good. I struggle with the anxiety that it causes, the struggles it brings around travelling and planning and feeling unwell. It's always in your mind and the fact that many people just don't understand what it's like to live with but then again unless you have it I understand why you don't get it.

As I tell my husband, imagine having a stomach but everyday of your life and your close to understanding life with BAM. I have joined a few support groups which I find really helpful and it helps talking to others who really do understand. We really do need groups and pages like [This Little Gut Of Mine] to raise awareness around this illness.

PLEASE NOTE: I earn a small commission if you buy items from Amazon which are linked in this blog post.