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Follow-up appointment with Prof Aziz

December 16, 2011

I had my follow-up consultation with Prof Aziz this morning (although I actually spoke with one of his Doctors and not the Prof himself, she was equally as open and friendly).

She confirmed that the blood tests they carried out were all satisfactory, which was a good thing, as they could confirm that my gastro problems definitely are a result of the EDS causing hyper-mobility in the bowel.

Once again confirming to me what was happening to cause the problems was very reassuring, and its comforting to know ‘what’ is happening with your body, and that alone helps when dealing with it.

I explained that the antibiotics had cleared the infection, and that the Domperidone was doing a good job controlling the nausea and the VSL3 seemed to be helping too. Although after 6 weeks of relative normality, I began to experience signs of bacterial infection in the bowel again.

She explained that this wasn’t surprising and that 6 weeks seemed to be the usual period of time before the slow movement of the bowel, caused it to become infected again.

As a result she wants to try pulse antibiotic therapy – its a type of cycle method, which will work as follows:

A course of 1 type of antibiotic, followed by 6 weeks of VSL3, then a course of a 2nd type of antibiotic, followed by 6 weeks of VSL3 before returning to a course of the first antibiotic, followed by 6 weeks of VSL3 and so on…

In theory this should keep on top of things and stop any infections from getting a chance to grow. The antibiotics will be unpleasant to take, but I guess its the price to pay for relative normality, and the alternative is not a good place to visit on a regular basis. Fingers crossed this combination will work.

I have a follow up for 3 months time, so if this doesn’t work, then she wants to look into dietary measures – presumably choosing a diet of foods which digest quickly might help in some way. But for now, she seemed pleased with how well I have taken to the meds (despite my body rejecting the last lot!) and didn’t want to go the dietary route, unless we were out of options.

I asked about the stomach cramps and pain that I still suffer with and she explained that normally gasses build up in the large intestine, which is fine, and something that the body is designed to deal with. The problem occurs with the small intestine (this is above the large intestine). When gasses build up in the small intestine, it causes cramping and spasms and it’s these that cause the discomfort and pain.

After my last videos while away in the lake district, I have had good feedback on how well the message came across watching a video. For some months now I have been working with a few other POTS sufferers (who have since become better friends than I have ever had). Together we have been setting up an awareness organisation. Great things are in the pipeline for the new year, most of which I cant say as of yet, but it has certainly given me a purpose in turning such a shit situation into something mildly positive.

If anyone is interested, our website is www.ukpotsies.org and you’ll find our channel by searching ukpotsies on YouTube. I’ve been making videos for the channel for some months now, and I’ll warn you now that some of the videos are not for the feint hearted, but we have a great following of people all over the world that have come together to form a community. My video of one of my seizures has had in excess of 300 hits and the support and feedback I have had from other sufferers, has made the difficulty of showing it online worth while! I always intended this blog to be a means of sharing my story with friends and family, I didn’t however realise so many people would have discovered it that also have POTS/EDS. The whole aim for me now is to raise as much awareness for these illnesses as possible, and this is precisely why Marcia, Tara, Liz, Rebecca and myself are working hard on the UK Potsies!

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