Gastroparesis and Ehlers-Danlos Syndrome

I had my appointment in Durham yesterday to discuss my surgical options. We went through step by step listing the interventions along with a few pros and cons. The options for me were as follows: 1. Botox into the pyloric valve in roughly two weeks time. Done via endoscopy and minimally invasive. My help relax the valve and allow the stomach to empty faster. Roughly 20% effective. 2. What tube? Endoscopically placed gastrostomy tube (into the stomach) with a J tube extension. No need for general anaesthetic but would cause trauma to the stomach (my consultant advised against this option). / Or surgically placed jejunostomy (avoiding the stomach) tube. Surgical procedure, so slightly greater risk. Avoids damaging the stomach. Less problems with blockages and movement of the extension. 3. Biopsy, If I choose the Jejunostomy tube it would be a good opportunity to take a full thickness biopsy from the wall of the intestine. This could help to identify better treatment in the future an...

Wouldn't it be nice if the systems that are put in place actually work! I have had some major issues with the company that provide all the kit for my feeding tube. I was supposed to get a delivery of sterile water on Tuesday this week. It didn't arrive but I had enough to keep me going and the dietitian ordered it again for me on Thursday when she came to visit. They promised to have it to me by Friday....it didn't arrive. So I rang them myself and they apologised and told me they would send it on express courier and it would be here by 10:30 on Saturday morning. Yes you guessed...it didn't arrive! I don't have the 24hr number to ring and they don't deliver on sundays so it's going to have to wait till Monday for me to sort it out. In the mean time I'm left with the problem of no water to irrigate the tube with. I had to trek out to the chemist to ask them if they had any but they don't stock it. They suggested I go to the little minor injuries unit...

Sometimes in life you really do have to question your very existence on this earth. As much as you try to get back on your feet...something always knocks you back down. This is the way it has been for us for as long as I can remember. So, what do you do? Pick yourself up, dust yourself off and start again. It's just what you do right? That's what the world expects. But what happens when you get tired of the knocks and scrapes and too frail to get back up again and again? My baby girl decided it was time for drastic action, so...she decided to write a letter to God. We are not a religious family but allow the children the freedom to make up their own minds about such matters. Here it is: Dear God, Thank you for the world, even though people do bad things, you have to stop people being bad. I want the world to be good! From E.  Aged 9 Nothing quite like the sheer straight forward sense of a nine year old eh! She gave me the letter and then promptly asked me if I knew Go...

OK OK that will teach me, never speak too soon! I have the most excruciating pain in my nose, face and throat. I have had 4 tubes in total now so I know roughly what to expect these days...but this is something else! I started with the mega sore throat yesterday so I went to the chemist and stocked up on over the counter anaesthetic throat spray. It helps a little but it soon wears off. So, step two was to try and eat some ice-cream to soothe it. Bearing in mind I have not eaten ice-cream since a bad experience over 8 months ago. It was brave, but hey, I was having a good tummy day so why not? Today I know "why not"....vomiting your guts up is not a good way to soothe a sore throat! Especially when you have a tube to contend with too. What on earth was I thinking????? In shear desperation to soothe my throat I managed to aggravate every nerve in my face, to the point where I'm struggling to speak or even swallow and my eyes are streaming with tears from the pain ...

Friday 9th September 2011 Hey folks, I'm back! Everything went according to plan, I went into hospital on Tuesday to have the naso jejunal tube fitted. It was a bit of a painful experience this time round, the medazolam (sedative) started wearing off just at the worst possible time. Needless to say it was not a pleasant experience and my nose and throat hurt like hell...BUT I don't care...I'm finally getting some food. I would put up with anything for that and at the end of the day it was only 5 minutes of pain in exchange for months of agony and starvation. I'm so grateful to everyone at Durham for helping me to get some quality of life back after all these months of uncertainty. The treatment... I had a few days on IV Pabrinex (Vitamins) which has made me feel much brighter in myself. I have also been able to give my body a real rest this week with plenty of quality sleep and ...

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...