Here is my gallery of photos from tests to surgery, I decided to post these to help other people like me to come to terms with what's happening to their bodies and what to expect if you are faced with the same decisions.

                                                        Me Before

                                 Back when it was possible to eat a pork pie!


Nasogastric feeding... did not feel so good!

Keep  Smiling....No matter how hard it gets!

Naso jejunal feeding... Crisis point again.


Home Feeding

Small Bowel Manometry

                  Laparotomy scar from the neurostimulator and surgical jejunostomy

My new Life...

                             3 Months into 24hr tube feeding...4kg heavier!

                                                ...and then...disaster!

Vitamins....Guaranteed to make you glow in the dark lol.

...More testing : (

...but still smiling x

The best of friends...

At Home and smiling!

...but it's not always easy..

There are many many bad days... when you have a good one...make it count!

My TPN Set-up at home

                                             Ready to Come home!


1 comment:

  1. Hey there!
    Rather self-conscious that this looks like the first post!
    I've just been going through your photo diary and began your written journal as well, and just wanted to send you my sincere support.
    I'm another woman with EDS, Type 3 but with symptom overlaps, had my gallbladder removed in Dec 2012 and figured that was that, but have resumed having suspiciously identical pains to those pre-surgery, which happen to resemble my usual migraines, but migrated to the stomach, unheard of in adults, I guess.
    Pain you can't ignore, that changes your plans.
    Right now though, I just really wanted to write you and send support and admiration, out of feeling for the sheer power of your blog.
    Firstly, I wanted to thank you for putting the facts out there - like your note on gut motility and EDS - as I have no time to research my own issues these days due to multiple commitments, likely a situation you know well enough.
    But more importantly, perhaps - seeing what you have gone through, and the strength of spirit you fought it all with really touched my heart, and I'm just hoping that right now you're doing better than you could have thought you would by now, when at those low points in your crisis! <3
    This may sound really corny, but honestly, all the "good stuff" of character you were harnessing throughout your illness/surgery and afterwards just radiates out in the photo chronology you've posted, IMO. :)
    It's tough to fight so hard to remain nourished enough to live when you weren't very big to begin with, if you don't mind me saying, and I only say it 'cause I relate! I struggle to stay above 100 lbs.
    Hard to give up the joys of eating whatever you want with "impunity" - I've been losing weight against my will too, and yet love to eat..
    But you are truly facing things with strength one can see even on a blog!
    It comes across that you are also loved by your friends and family, and that'll give you strength :)
    I realize the tone of my note has been very personal - I'd sign up or PM or whatever one can do, as I do hope to return to your blog - you're contributing something very valuable to the 'net for people with your health issue and similar ones!!
    ..But my PC's kaput, so I'll just have to send this perhaps awkward public note, anonymously, commending you a million times on being a tough cookie, and sincerely hoping your condition stays stable and behaves! ;-)
    _Bless Your Heart_ , and may life bless you!
    L in Canada.


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