A Little Learning is a Dangerous Thing… By Victoria Bartlett
I am stuck in a waiting room, not in the literal sense, although I have been lately on a couple of appointments. No I am counting down to my first operation on 1st August this is a surgical Jejunostomy and is basically a feeding tube that bypasses the top of my bowel and means I can be fed through my stomach without throwing up hopefully. I pray for two things, one that the operation goes ahead and second I get put in one of the Queen Elizabeth Hospital numerous side rooms on my own, as I once ended up sleeping one night in the relatives room, drip stand and all but that’s another story.
I have had a good patch lately, so it enabled me and his Lordship (husband) to go down to Edgbaston, to watch some cricket – Warwickshire Bears playing in the Nat West 20/20 Blast. I was touched that Ms H, who works for the club, had done some search into Gasroparesis (GP) to see if there was anything they could do to make my visit more comfortable. It was interesting hear what information the Internet had thrown up.
When I was diagnosed with Diabetes, I came across Diabetes UK, I found all the information I needed, including the wonderful telephone help line. With GP it was a totally different experience, there were brief mentions on health pages but no major resource. The biggest resource was Facebook where I found over 12 forums promising to help: “Laugh with GP”; “Cope with GP”; Survive with GP. Most of these appeared to be closed forums, so you have to apply for membership, which means only other members of the forum can see your posts.
I joined a host of them to separate the wheat from the chaff. The first thing that struck me was the amount of American run pages. The largest was GPact (Gastroparesis Patient Association for Cures and Treatments) an American charity, it was very helpful but also confusing with drugs having different names and each state seeming to have their own legistlation for treatment. Another US based organisation intimated it could help to heal GP naturally not wanting a lifetime of medications I decided to join.
It soon became apparent that to access the good stuff you have to be a cross between the Stepford Wives and the Moonies. If you made any comment or questioned the regime you were considered subversive (like me) and disposed off. I never really got a chance to find out how it worked, apart from the fact it recommended coconut milk, kefir, bone broth and a selection of oils that can only be obtained through the website of admin and originator of the Fbook page. forum. Eventually it got so that the Facebook page was just a portal and to access the real stuff you had cough up $10 a month to see the website. Since when did GP become elitist?
Finally on Facebook I discovered the Gastroparesis & intestinal Failure Trust (GiFT). Founded in 2012 by Natalie Roux-Bean and Rachel Stott, the pair met on G-Pact after their own three-year battle with Gastroparesis, they decided to set up a GP support group with a UK focus. As well as the Facebook forum, they also have a website with advice for patients and medical professional and just achieved charitable status. The money raised will be used to support patient education and research. It is already has over 700 members on the Facebook forum with everything from blocked feeding tubes, to people in venting, consultant recommendations, inspirational quotes, jokes and everything in between. GiFT really is a gift for people like me, it is run with passion, knowledge and most of all love. I do suggest you check out their website it is really very comprehensive and helpful.
I know that in the coming months GiFT is going to be the rock I cling to as I start my surgical NHS journey. I am not sure if I will get another blog in before MrD wields his knife, so if not I will see you on the other side.
Facebook Forum: https://www.facebook.com/groups/GIFTuk/