I have been under the GI team at my local hospital since November, referred by g.p. I had an endoscopy to check for blockages and that was claer except for a sliding hernia (apparently common in EDS). They came to the conclusion that my tummy issues are down to EDS and autonomic dysfunction and the unit there was not equipt to deal with it. They wrote to my G.p asking him to refer me to Prof Aziz. My symptoms are sudden upset tummy needing to get to loo fast (that however after 11 years suddenly stopped after the barium swallow it caused a really bad episode of diahorrea then bowel packed up) I have difficulty swallowing and a lump in my throat which we now think is food sliding back up from the stomach, the last solid meal I had was 4 months ago which after 24 hours of the food staying put in my stomach and not going down it eventually came back up completely undigested. bloating, used to pass wind like a trouper
but that has stopped too, dont burp either
I have regurgitation and reflux. and bowel only sees action about once a week if I am lucky. I was sent a letter that was copied to my g.p from Prof Aziz saying that they will see me and now to wait for the appointments people to get in touch, They said i will have tests then a telephone appointment to give me results then discharged back to G.P, the letter arrived a couple of weeks ago, I know it will probably be a long wait. At the moment I am prescribed Ensure (lost 12 Kilos which was in fact a small bonus for me as I was a tad over weight) So I switch betwen baby porridge and baby food and Ensure fo calorie top up. I founf I cant digest lumpy baby food and also stuff with certain veg and tomato.
I have some questions if you can help.
How long after you are told you will be ssen by the team is it before they call to make an appointment and what is the wait approx for appointments.
What tests do they do on the first visit, do they do them all on the first visit or do you need to go back for more depending on the problem.
thanks for any info/input
ps swallowing tablets is big trouble as they seem to come partway back up the oesophagus too and sit there tramadol is the worse as I cant cough it back up if needed, when the midodrine gets stuck I can cough that back and start again sorry to be so grosse. have tried taking a swig of ensure after tablets to keep them down which sometimes helps, also found that the only sure way of keeping the liquids/puree from popping back up is to eat standing up.