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Please help me to create a useful resource for people who suffer from functional gastrointestinal disorders. Your comments would be most valued. I would like to hear from anyone who suffers with pain after eating, unexplained vomiting, irritable bowel syndrome or general stomach pain on a regular basis.

I would also like to hear from people who are unable to eat for medical reasons and are either living off supplements or fed through a tube (PEG). It would be great to hear your stories and how you cope.

After 10 months of pain I finally have an answer! I have now been formally diagnosed with Ehlers-Danlos Syndrome and would love to hear from other people with this condition.

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Please post any comments or suggestions you have below. Unfortunately I can't enable comments on individual pages, I'm still learning lol.
19 October 2010 10:47 

Comments

  1. Anonymous21 December 2010 at 10:26

    thanks for the blog. it is a very moving story. my sisters problem is similar but she too had to fight to get a diagnosis. after 3 operations and 3 years of pain she is on enzyme tablets and the pain is now under control thankfully !! she had trouble with her pancreas and bile was being passed back into her stomach, All i can say is your friend must not give up. KEEP asking and research as much as she can into her symptoms .dont be fobbed off the doctors tried telling my sis she was making her illness up !!

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  2. Anonymous23 December 2010 at 14:47

    Thanks for the comment, been following the blog with interest, what are the enzyme pills for? How do they help your friend?

    Did your sister ever get a proper diagnosis?

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  3. Anonymous29 December 2010 at 06:35

    for a start it seems like yr consultant just wants to patch you up and send you on your way i wonder what he would do if it was his daughter !! i wouldnt do anything just yet until you can find a new consultant one with bedside mannors and who actually treats you like a person. A pegs all well and good but its just going to mask the problem, you need a definate diagnosis, hang in there see what yr consultant in London says and what the further tests show xxx

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  4. Anonymous30 December 2010 at 06:00

    I just wanted to send u a message to let you kno i am following your blog, and am really moved by what you are going thru. I really hope you get something sorted soon. who is ur consultant - he sounds like a monster!.I have also sent the link for ur blog to a girl i used to work with who has similar problems with unexplained weight loss, I'll let u kno if she gets back to me.

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  5. Minx30 December 2010 at 07:50

    THANK YOU! To all who have posted on my blog. I'm really grateful for all your support and good advice :0)

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  6. Anonymous9 January 2011 at 15:08

    Hello, I have just read your blog on the advice of our mutual friend Lizzie :) I'm so sorry to hear of your terrible situation; please keep trying to get rid of that awful consultant. I nearly died once myself because of an arrogant man like that thinking he knew everything! It was only my hissy fit that saved my skin! I really hope that there is an answer for you in London; perhaps the hospitals there will have a wider spectrum of tests and professionals more inclined to dig a little deeper and have a greater idea of patient care. In the meantime, perhaps hersprungs (not correct spelling?!) Maybe something to look into...although I think that is something that happens from birth. Other than that I can only say to try and stay positive and focus on your family :) they seem to be the sunshine breaking through a stormy time for you! Perhaps you could broaden awareness but contacting the bbc - something like the one show? Or taking your story to widely read magazines like take-a-break...a bit cheesy (!) But maybe someone out there has gone through what you are going through now and may hear of your plight? Take care, thinking of you and pray that you'll get some answers....all the best, kerry xxx

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  7. Minx10 January 2011 at 03:52

    Please take a look at this page, it is similar to this web site and covers another persons journey for answers with gastroparesis. www.gastroparesis.org.uk it is very similar to this page xxx

    ReplyDelete

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