Wednesday, 16 November 2011

What to do if you think you have Gastroparesis #Part 1

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 to see someone else. It is vitally important to feel that you can trust the people involved in your care, at the end of the day it is your body and you deserve the best.

Due to a general lack of understanding and wide variety of overlapping symptoms, gastroparesis can go undiagnosed for years. This leaves many patients struggling to cope on their own and suffering in silence.

Many doctors believe "functional disorders" to be a mere annoyance to most patients and dismiss it as a mild complaint which is not life threatening. In many cases this is true, lots of patients can live a normal life with a modified diet and a few small lifestyle changes.... however for some, the story is very different. In severe cases it can lead to a total inability to eat or drink adequately which then leads to long term malnutrition and dehydration. Living with any long term illness can have a serious effect on the QUALITY of life and that is what is important to Gastroparesis patients.

We don't simply want to be alive, we want to be able to live life.

Take a look at the "Gastroparesis"  page if you would like to know more about the signs, symptoms and treatment options. Also take a look at "useful sites" for informative websites that have helped me along the way.

So, step one:

Before you visit your GP it is a good idea to do a bit of ground work first. This will help you get the most out of your appointment and give him/her a clear understanding of what life is like for you.
  • Keep a diary of your symptoms, include the time of day and what you were doing ie exercising, resting, sleeping, eating.
  • Keep a record of any food you eat, if possible write down how you felt after you ate ie pain, nausea. It is a good idea to do this in the form of a common pain scale ie 0 no pain 10 worst pain. 
  • Keep a record of bowel movements if this is a problem for you.
  • Weigh yourself once a week to monitor weight loss.


It sounds like a lot of leg work but it's not so bad. You can make up a simple A4 chart to contain all the information. You don't have to go into great detail, it needs to be clear enough for your Dr to read it quickly... so stick to the number scoring and simple descriptions to make it easy.

Take a friend or family member with you to your appointment and don't be frightened of suggesting gastroparesis as a possibility! We can all be guilty of thinking that Dr's know everything and leaving it up to them (after all Dr knows best right?). I have had the "eye roll" from Dr's numerous times for making suggestions etc, but if it sparks a basis for diagnosis then you could knock months off the diagnositic stage! Now that's got to be worth speaking out for!

I have compiled a list of Gastroparesis specialists for the UK, follow the link below x

Doctors List 

Click Here For #Part 2 I hope this helps get the ball rolling for you x














Friday, 11 November 2011

Weight gain!

As promised here is an update on my visit to the dietitian on Wednesday.....

I've gained 3lb!!!!!!

We suspect that this is due to taking on more fluid through the increased feed rate so I must have been severely dehydrated last week! Not surprising I was feeling so low! It was so nice not to stand on the scales and feel that the weeks effort was wasted.

My plan is to increase the feed rate whenever I can tolerate it by 5mls/hr until I get to the magic 60ml point. Then I can start thinking about having a few hours NOT attached to my backpack! I'm so pleased that things are starting to go in the right direction and am looking forward to making some real headway over the coming months. My wounds are healing nicely too, and each day I am able to stand up a little straighter.

I have been very pro active this week and am once again trying to raise awareness for all those who suffer as I do. I have started a facebook page: http://www.facebook.com/pages/Living-with-Gastroparesis-and-Ehlers-Danlos-Syndrome/183940928358425?ref=ts

You can also friend request me: Minx Natalie.

I'm hoping that this will help my GP community to talk more freely and share research and resources with each other.

Please help me spread the word and get my new project going...I hope to see some of you guys there!

Much love

Minxy 

Thursday, 3 November 2011

I'm back!

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 again in the morning at the same speed...determined not to let it beat me! That didn't go too well either...it's all going but it ain't coming out if you get my drift. So after much consideration I had a few hours rest from it and then started it up at a slower pace of 30ml/hr. This is nowhere near enough for me to gain weight on but it's better than nothing at all. So, back to the doctors for some Movicol, which I can now put through my jejunostomy tube (I couldn't take it before because I am unable to drink it). I'm hoping this will help to move things along ASAP! For now though I feel pretty low and very nauseous but hey what's new! I'm psyching myself up for my appointment with the dietitian this afternoon but for now I'm going back to bed.