Friday, 9 December 2011

Dealing with Doctors!


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 intimidated to to stand up for yourself. So ALWAYS take someone with you to appointments. Make sure that person is also well informed about your condition and what life is like for you. They will often hear things that you don't take in and can stand up for you when they see you backing down. Make copies of any letters and test results you have and keep them in a file to take with you if you end up in hospital or when meeting new healthcare providers i.e. dietitians. You never know when you might need them and it could save you a lot of time, especially when it comes to explaining your condition to someone new.

If you don't have a good relationship with your consultant and you don't feel they are doing the right thing for you, its perfectly alright to seek a second opinion. Go to your GP and for a referal, it is a good idea to do a little homework before you do this because they will most likely just send you to the next nearest hospital. It is hard to find motility or EDS specialists but the support groups are now an excellent way of finding tried and tested GP/EDS friendly doctors! Be prepared to travel if you do find a good one, it's worth it, but expect long waits between appointments and you also need to think about who is going to care for you locally if/when you need immediate care.

The motility experts I have come across so far here in the uk are:

NHS.... Hope Hospital Manchester
NHS.... Durham University Hospital
NHS.... St Barts and St Thomas' London
NHS.... The Royal London hospital
NHS.... Salford Royal
NHS.... Royal Free London
Private.... Princess Grace Hospital London
Paediatrics... Great Ormond Street

What do you do if you need medical treatment or advice out of hours?

Obviously... if there is something dangerously wrong... you must go straight to A & E! 

However A & E is not usually the best place to go with gastroparesis symptoms but sometimes it is necessary. Don't expect them to fully understand your condition, that doesn't mean they can't help you, but expect a long wait while they try and figure you out. Here in the UK, I find it much better to use the out of hours service, you ring your GP and there will be an answer phone message with the phone number for their out of hours service. Then you call that number and they will arrange to see you or give telephone advice. If they ask you to go and see them you won't have to wait as long, and they can arrange direct admission if needed. 

Never let ANYONE, Dr or otherwise, bully you into something you don't want. At the end of the day, it's your body, your life and you have to live with it!

When you need someone who understands...

Patient forums are an excellent way of sharing information and experiences with with people who have faced similar situations to yourself... I started my own support group on facebook to try and provide a support network here in the UK. You can find us at www.facebook.com/groups/GIFTuk
Of course there are international groups too such as inspire and G-PACT. There is a great community on facebook and twitter, not to mention all my fellow bloggers. So please don't feel alone, there will always be someone there to help you along the way, all you need to do is ask xxx

Here are some links to GIFT and other pages I created x

GIFTuk Facebook Page

GIFT support group

Living with Gastroparesis & EDS





Thursday, 1 December 2011

What to do if you think you have Gastroparesis #Part 2

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 we fight it! Some simple things you can try are:

  • Reduce Fat intake. Foods that are high in fat actually slow the digestive system down. However...if you are fighting to get enough calories to maintain your weight don't worry about the fat content, if you are only eating bits and bobs then go for the stuff that's going to give you the most calories in the smallest volumes.
  • Reduce Fibre intake. Fibre is hard to break down so cooking fruit and vegetables well will help you to break it down and help prevent the formation of bezoars (hard lumps of food that get stuck in the stomach). Avoid things like salad, raw fruit and veg and red meat.
  • Most dietitians will tell you to have 6 small meals a day instead of 3 larger ones
Still not working for you? The next step:
  • Puree / Liquidise everything. Liquid is much more easily processed than solid food and will empty faster.
  • Supplements are a good way of getting maximum calories from small volumes and they come in a range of flavours/ brands. They can be used as a sole source of nutrition if tolerated but I have yet to find anyone who actually enjoys them!
  • Vitamins! If your not eating, you're not getting what your body needs, so top it up with a good A-Z...the kids jelly ones are very popular!
  • Probiotics... not the stuff you buy at the supermarket in cute little bottles, you want the good stuff! The one I use is VSL#3 you can buy it over the counter at boots but you will need to ask for it because it needs to be refrigerated so won't be on display. You can also get it on prescription if you ask your doctor. It is not very well known so don't expect some of the smaller chemists to stock it. It comes in powder form so you can mix it with your supplements if you can't tolerate volume very well. 
If you have tried all these things and you are still losing weight... please don't feel alone like I did. For some of us eating at all is an impossible task. What goes in comes straight back up! If that sounds like you then be prepared for a bumpy ride and some big decisions. There are some good patient groups online like www.inspire.com where you can go and chat with other gastroparesis patients world wide...some diagnosed, some still waiting for answers. It is a great place to ask questions and get support from people who live it like you do! For those in the UK, I have created a facebook support group. You can find us at www.facebook.com/GIFTuk and www.facebook.com/groups/GIFTuk This is a closed group, only members can view posts and it won't pop up in your timeline for friends and family to see, so we can talk freely without embarrassment!

It is highly likely that at some point you will be told that it is stress related, take this into account and try to reduce the stress in your life, but please don't start to doubt yourself! You're not going mad and it does not mean that the problem isn't real...it IS! It is not all in your head and quite frankly... if you weren't stressed before... you probably are now lol.

Please Click Here for #Part 3