Gastroparesis and Ehlers-Danlos Syndrome

In response to a question I got this week about dealing with doctors and other healthcare providers. "Thank you very much for replying, please could you give me any strong tips on dealing with professionals and other services who don't understand my condition and keep harassing me. I would be very grateful."  The best way to get the most from your healthcare provider is to be organised and well informed. Arm yourself with as much information as you can, but don't just read the stuff you find on google. You can access thousands of medical journals online for free (there is a link on the "Gastroparesis" page to a great free site) and you can try searching google scholar if you feel good enough to wade through the jargon that is lol. Dealing with Dr's can be very difficult, especially if you feel intimidated by them. When you are ill you feel especially vulnerable and more likely to forget what you want to say, or in a hospital situation,  feel too ...

Please click here for  #Part 1 So, you went to your GP and the chances are... you came home with a bunch of pills and were told to go back if things didn't improve. This is standard practise and you mustn't feel that this is a brush off in any way. There are several medications that help improve gut motility and nausea so it's highly likely that you will try a few before you find a regime that suits you. Remember: When they say come back.... they mean it. Doctors don't chase their patients and if they don't see you they will presume you are ok. It is best to give any medication a good chance to get into your system so don't expect immediate results. 4 weeks is usually enough time to know if something is working for you or not but some medications can take longer than this. In that time, there are many things that you can do for yourself to help minimise your symptoms. Dietary changes are a must when it comes to gastroparesis, no matter how hard ...

Gastroparesis literally translated means stomach paralysis. Some other terms you may hear used along the way are: Delayed Gastric Emptying, Motility Disorder, Functional Disorder, Functional Vomiting/Cyclic vomiting, visceral hypersensitivity/hyperalgesia, Visceral Neuropathy. This advice is based on my own personal experience, it is not intended to substitute professional medical advice and if you do think you may have Gastroparesis you should seek advice from a doctor. Gastroparesis is a chronic (long term) condition and diagnosis and subsequent therapeutic treatment can be a lengthy process. You need to keep a strong head, even if the rest of you feels like it's falling apart. Arm yourself with as much information as possible to help you make the decisions you may face on your journey. Now we have that out of the way, what I will tell you is... you don't have to take one doctors word for gospel! If you are not happy with the treatment you are getting PLEASE PLEASE ask...

Finally I feel up to sitting at the computer...just! I will post some journal entries in my diary section that I hand wrote in hospital if you would like the full run down. For now I will just bring you up to speed with where I'm at today. I had my surgery on the 21st of October. All went well and I'm now working hard to get myself well again. I have had a few issues with the feeding regime already but I expected it to be a bumpy ride. After almost 2 years of eating nothing, my body is a little overwhelmed by the new set up. I'm sure that it will all settle down eventually but for now it's like one step forward two steps back. I left hospital on a feed rate of 50mls per hour over 24 hours. This was fine for all of one day but I soon started to feel unwell once I got home. I think it was all just a little too fast for my slow digestive system. I was in so much pain that I had to switch it off all together. After a full night's rest from feeding I  set it going a...

Tuesday 28th October 2011 Ok now back to the future guys, got to keep strong and live for the living. I am still in a sense of total despair but I can't afford to loose my head now. I have a family to think about and that's all that keeps me going these days. Yesterday was my pre-assessment for my surgery. It brought it home to me just how much I need to get on top of things. For those of you who are new to the page, I am having  a surgical jejunostomy (feeding tube), full thickness biopsies and a gastric neurostimulator. You can view information about the device at:  www.medtronic.com/health-consumers/gastroparesis/device/index.htm . The surgery is scheduled for this Friday (21st oct). My appointment went as expected, there were lots of questions about my general health, body weight, height, blood pressure etc and a blood test. I didn't need an ECG this time, as I had a cardiac echo in June this year. The nurse was lovely and again, genuinely interested in my cond...

Wednesday 12th October 2011 So far this week I've managed to stay away from doctors and hospitals... an achievement in itself these days. I have just about managed to balance myself out enough to do what needs to be done. It dawned on me this weekend that I did not have anything smart to wear to the funeral, all my clothes are far too big for me these days. So my mum and I went out to try and find something that fits. Surprisingly I managed to find the perfect dress in the first shop we went to...how often does that happen? So thankfully I didn't have to expend as much energy as expected. Although it has been a struggle to get through this last few days, I feel that grandad is there making sure it all goes well. Tomorrow is the day of the funeral and I have GOT to keep going for that, I am just hoping that life is kind for a change and allows me just one pain free day. I am resting today in the hope that I will be able to stand up for all the necessary parts of the service...

The following journal entries are from my written journal. I keep one when I'm too ill or tired to use the computer. Those of you who follow my diary will understand my current situation and I just hope you can bear with me through this roller coaster ride I'm getting right now. I hope to get back to my usual chirpy self some time soon but for now...things are going from bad to worse. Thursday 6th October 2011 Following my recent bereavement, my own health has decided to take a nose dive too. By Monday morning I was getting the palpitations and nausea in a big way. My hubby dragged me to the doctors and she was not too pleased with my overall condition. She rang through to my consultant in Durham who arranged for me to be admitted the next day, after my botox injections (which were scheduled for Tuesday anyway). So... here I am again, the last place you want to be following a bereavement. I know I need some rest now as my weight has plummeted from 46.3kg to 42.5kg today....

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...

As I am spending so much time in bed again recently I have decided to take my mind off things and make some changes to the blog. I am going to try and improve the usability a little by posting all new diary updates on the HOME page and also archive them in the diary section for a one page overview (just the way it is now). This will make it much easier for you to just pop in and read the latest update. I hope this will help you all to navigate the site a little better. I would like to say a huge thank you to all of you who have sent messages and left comments for me, they really do help! If anyone has any suggestions on topics you would like me to mention feel free to email me with your ideas. You can contact me at helpmeminx@yahoo.co.uk or leave your suggestions in the comments box.