Friday 3 April 2015

Results of SeHCAT Scans....

So it’s official, I am suffering with bile salt malabsorbtion. The results of my recent SeHCAT scans have shown this to be the case. However I am lucky enough not to be suffering from the usual side effects experienced by most people (chronic diarrhoea) and instead it has manifested itself in my low vitamin B12 count.

The SeHCAT scan is the easiest and most reliable way to diagnose bile acidic malabsorbtion and is done in two parts. It measures the multiple cycles of bile acid excretion and reabsorbtion. Bile acid (salts) are produced in the liver and enter the biliary system where they are stored in the gall bladder (mine was removed during my first cytoreductive surgery) and are released after meals where they play an important role in the digestion and absorption of fats in the small intestine. Then, around 95% of the bile acid is reabsorbed by the ilium (which was affected in my initial appendectomy/peritonitis) and the liver (Liver capsulectomy during initial cytoreductive surgery) where they are then re-secreted. This usually happens between 4-6 times a day.

There are three classifications of types of bile salt malabsorbtion-

Type 1- Bile acidic malabsorbtion related to ileal resection or inflammation (found in Crohn’s).
Type 2- Idiopathic bile acid malabsorbtion, Primary bile acid diarrhoea.
Type 3- Secondary to various gastrointestinal diseases including (chlolecystectomy).

 At the first scan I attended the nuclear medicine department at Bristol’s Southmead hospital and was initially given a radioactive pill to swallow some two hours before the scan itself. Next came the scan itself. The scanner is slightly different to a CT scanner in appearance in that once on the “bed” the patient is positioned between large “plates” both above and below the bed. You then have to lie still for a ten minute period where the level of radio activity hitting these “plates” is recorded. And that’s it!



The scan is then repeated seven days later where the radioactivity level is again recorded and the amount of reabsorbancy can be calculated. Retention at 7 days should be above 15% values below 15% are considered mild, below 10% moderate and below 5 % severe. Not sure where I lie on this scale as yet!
Due to my lack of symptoms other than the B12 deficiency which is being treated with supplementary injections every 12 weeks there is no need for any further treatment. However the side effects of bile acidic malabsorbancy can be treated with medication if required.


So for me it’s good news, the reason for my vitamin B12 deficiency has been diagnosed and we now know that bile salt malabsorbancy is present. Something to keep an eye on. But for now I am lucky that I don’t have any other side effects. I am fit and well, feeling better that I have done in a long time now that the B12 jabs are working. I’m back running longer distances (up to 10miles) on a Sunday morning and back caving regularly. Right now life is good! 

6 comments:

  1. My mum stumbled upon your blog and was wondering how you were now. You knew my dad, also a pmp sufferer who, being much older and less resilient, died in 2012. His name was Graham Davies

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    1. Hi Fran, Great to hear from you. I am doing great thank you very much. 5 years since my first op and PMP free (I did have a re-occurrence in 2012). I remember Graham very fondly. He was the very first person to welcome me to the Christies Pseudomyxoma forum when I was first diagnosed and in that dark place feeling helpless and scared. Graham introduced me to a whole host of fellow PMP sufferers many of whom I am still in touch with today. Your dad also came to visit me just after my first op as he was at Basingstoke for a scan. Unfortunately we never actually met as I was still in the intensive care unit and they only allow family in. A real shame as I would have loved to have met him in person he was a great "cyber" friend who helped me a lot. I still think of him and other fellow sufferers who lost their battle such as Chris P, another great "cyber" friend from the Christies forum. I hope that you and your family are all well and thank you for getting in touch. Graham is very much missed from the PMP community as he was always the first to welcome new members to the forum and helped to raise awareness of this rare disease.
      My nest scan is in August where I'll "spin the wheel of fortune" as I like to put it! So far so good and part of the reason why I am posting less regularly.Glad to say nothing to report! :-)
      Keep in touch and I wish you and your family well.

      Dave

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  2. Hi Dave, I'm Lindsey! I have a question and would love to speak with you about your journey. Could you please email me when you have a chance? I'd really appreciate it, thank you. Looking forward to hearing from you :) lindseyDOTcaldwellATrecallcenterDOTcom

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    1. Hi Lindsey, have sent you a mail as requested.

      Dave

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  3. Hi Lindsey, I have tried to mail you but keep getting error messages. Don't think the mail address is correct. If you use the "mail me" functionality below then this will go directly to my personal inbox and we can go from there. Dave

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  4. Hi Dave,
    Your story is uplifting. I would love it if you could contact me so that I can put you and my fiance in touch. He was just diagnosed in March 2015 with PMP. Thank you so much, I would really appreciate your time.

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