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Gluten & Dairy
Ann from Rugby
For 20 plus years I was experiencing quite severe bowel dysfunctions. My GP referred me to Gastroenterology for all the usual tests. Unconfirmed Irritable bowel syndrome was the diagnosis given. No treatment had any lasting effect.
In 2002 my Gynaecologist had to do a 2nd hefty rectal repair for problems caused by IBS. He re-
Unsurprisingly, although most grateful to have had life saving surgery, I was left with even worse bowel symptoms, with chaotic diarrhoea which seriously impinged upon my quality of life!
Two more excursions through Gastroenterology ensued, with no resolutions except to use Lomotil for symptomatic relief.
2011 saw me on holiday abroad, with florid diarrhoea/pain resulting in near collapse and sudden loss of weight. A local doctor treated me symptomatically to enable an easier journey home and urged immediate investigation.
My GP subsequently ‘fast-
This helped to some degree. However, the long years of missed diagnosis had taken its toll on the integrity of my bowel/rectal muscle and sphincter control, resulting in frequent and unheralded faecal incontinence to a distressing degree.
Ultimately, because of problems with Cholestyramine, I was put on the much more manageable Colesevelam tablets. But once again, I required a large number of these.
Against a background of previous bowel surgery and other medical conditions, the management of my B.A.D has proved a little more complex than that of other sufferers. I am profoundly grateful to Dr Arasaradnam and his team for constantly monitoring me and adjusting my treatment in a holistic way against this background, and indeed dramatically improving the quality of my life.
Alex from Tamworth
My name is Alex and I’m a 33 year old male and have had a bowel disorder for as long as I can remember, probably from birth.
I was diagnosed with having a High Motility Disorder and moderate Bile Acid Diarrhoea after consultations and SECHAT scans at UHCW hospital. I can now say that after having the diagnosis it has been a milestone in what I consider to be years of avoidable suffering.
I remember as a child that I was in and out of doctors on numerous occasions about having severe wind and extreme diarrhoea. The doctors were adamant that it was me eating the wrong foods and I had not been eating enough fibre and was put on that horrid fibo gel for years and ended up being told that I had IBS. I was basically told to go away and live with it as there was nothing they could do for me but to see a dietitian.
My first job when I left school was in a mechanics garage and my symptoms were getting worse. I was going to the toilet at least 5 times a day and going home with burns to my groins and private areas where i was seeping and absorbing bile acid throughout the day. Obviously I went back to the doctors again and was told I have IBS(D) and had nothing more than sweat rash!(man rash) and that I should just put up with it and to control my IBS.
I gave up with it all in the end and ended up trying to manage all the symptoms as best as I could.
Unfortunately my illness wasn’t getting any better. Bloating, abdominal pain and cramping, severe diarrhoea, the uncontrollable urge to have to get to the toilet within minutes with burns and itchiness to my groin. I was consuming food and not digesting it properly and would pass through me in as little as 12 hours! Because of the extremes I was going through I also developed bad piles and also needed to have these removed. Even after colonoscopies, endoscopies, blood urine and stool samples the doctors were insistent that I still had IBS and that I was mistaken as it wasn’t possible to digest food that quickly.
It was several years later that I approached a nurse practitioner at my new GP’s surgery who listened to me and asked for all my records to be sent to him for review. Hie was convinced that I had something more that needed to be investigated. He had done his training at UHCW and was insistent that I saw Dr Simon Darlow, a Gastro specialist. He really took on board what I was going through and did some more routine tests and also had me do the SECHAT scans. Along with all my previous results he diagnosed me having a Motility Disorder. At last! I wasn’t lying, I was digesting food that quick, too quick. The scans had revealed I had a 7% Bile Salt Retention and that I had Moderate Bile Salt Diarrhoea. This explained my enormous hunger and losing weight as well as all my symptoms.
I have no explanation as to why and I don’t know if I ever will get one. To be honest for now I’m not too bothered why but am just relieved not to hear the dreaded letters IBS. I Had a short period on the sequestrants but they wasn’t really agreeing with me. I’m on a combination of Amitriptyline and Codeine and am feeling great. This is definitely the right medication for me at the moment, I’m still getting all the symptoms but they are so much more manageable now. The flare ups are much less and hopefully with more time might even improve some more.
The big question for me is why has it taken 3 decades to get to where I am now? And why have I had to suffer for so long before someone would actually listen to me and my needs? I still feel alone in what I am going through as there is no or very little support out there for me but am so still relieved to be able to say BAD instead of IBS even if no one knows what it is.
Like the contributor on your experience page I too have suffered for as long as I can remember. I have always had a lot of build up of wind and my gut has been very noisy especially when you do not want it to be such as when sitting in a Church during a quiet period. I have also had the urgent need to rush to the toilet often several times a day all this has made my life rather embarrassing and difficult at times.
A year or so ago I had to see a Gastroenterologist for a different unrelated condition but after a chance comment I made regarding these long term symptoms he suggested that these could be down to either or both BAM or Fructose Malabsorbance. The Fructose breath test showed that I was on the high side and the SeHCAT test showed that I was moderately also a sufferer of BAM.
We first started with treating the Fructose Malabsorbance which was just a case of avoiding foods with Fructose but I took it one step further and reduced my sugar and carbohydrate intake as much as possible and it reduced the wind and noise to a normal level.
I still had the occasional need to rush to the toilet so then started taking one sachet a day of Questran Light and that has sorted out the urgency.
This diagnosis and treatment has changed my life completely, I feel more confident and no longer have to have a pocket full of Imodium or Codeine tablets every time I go out.
It would appear that a lot of Doctors and even Consultants are not always aware of these causes so perhaps a mention to your Doctor about these might just change your life.
At our support groups we asked some patients: What do you wish had been different about your care prior to your diagnosis / what would have made a difference to you?
I’ve had the condition for many years, passed off as IBS. Would go urgently 14/15 times a day. Could not go out anywhere for several years. I found I lost confidence
More advice before gall bladder removal
Follow up care after an IBS diagnosis – then other things can be considered
More knowledge at 1st contact i.e. GP, questionnaire leading to pointing out symptoms, signs
For GP to LISTEN to patient
Quicker referrals, quicker scans, quicker treatments
Someone to believe, that I can go to the loo so much in an hour let alone a day!
Dietician – specialist BAM after diagnosis
Support longer than 10 minute consultation – link to other services
Leaflet to give to other Doctor and work employers so you do not have to describe over and over again. Not just IBS.
Medical profession other than Gastro to understand BAM i.e. A&E, GPs, other specialist Doctors, Nurses
It to be recognised by employers