EVL - Prof. A. Forbes: Chronic intestinal failure

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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. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 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 
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Gastroparesis, EDS & the Final Piece of the Jigsaw Part #3 / Cranio-cervical Instability!

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I know I left Part 2 somewhat in the middle of the consultation, so I'll try and start where I left off and see where it goes. Obviously there are inevitably going to be more "parts" to this series the deeper we go, so bear with me I WILL get it all down on here eventually. To sum up the last post in a few words, the diagnostic term for my neck issues is, Cranio-Cervical Instability. Naturally our next question was, "What can we do about it and what does it mean for the future?" This is where I struggle to explain. When it comes to brain/spinal surgery the decision process is not so cut and dry! So, the only way to actually fix the instability in my head and neck and prevent any further neurological damage would be to fuse my skull and top two vertebrae together using metal rods (permanently immobilising my skull C1 & C2) and remove the excess tissue that is causing the brainstem compression. Obviously this is a very risky procedure and not one...
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Tips for Hospital Trips!

Only 1 full day left before I finally get my feeding tube. I have had no bad news from the hospital saying it's been cancelled or anything to suggest that it won't finally go ahead.  I have been packing my bag and thought it might be useful to post a list of essential hospital packing. I won't go through the usual stuff like toiletries and nightwear, we all know that...but here are a few extra things that may help. MP3 player Laptop (and mobile dongle!!) Warm blanket (so you can have a little piece of home with you!) Scissors (always handy!) Surgical tape (for those pesky tubes and cannulas) DAY Clothes (so you can feel a bit less intimidated when the Dr comes round, plus it helps you feel human again! But be sensible and choose easy loose clothing) Lip balm Hair clips/Alice band (you never know how long it will be before you can wash your hair!!!!) Sweets (For the nurses, they will come and talk to you more lol) Cotton buds Perfume... but don't take your...
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