Tuesday, 24 January 2012

My Surreal Weekend In Hospital

Oooh it's been a rough ride since last time I wrote my diary.

Where to start?

Well.... I have been getting a lot of pain in my abdomen where my feeding jejunostomy is placed. On Friday (20th Jan) I visited my GP about the pain once again, because it was getting more severe as the days went on. I was unlucky because I ended up having to see a locum who didn't know anything about me. He prodded on poked my tummy, which made the pain even worse. Then he said, he had no idea what to do for me and I should phone my GI when I got home to try and get in to see him sooner than planned. I knew I had to get help soon because I was in constant pain all over my abdomen by the time I got home.

I rang my GI's secretary, who was lovely as usual and told me she would ask him to ring me back as soon as possible. He called me later that afternoon. After explaining the problem he said that he could arrange to see me on Monday because he would be able to organise and co-ordinate everything before I went through. He asked how I would feel if my pain got worse and I had to go to A&E.... as most of my regular readers know, I HATE A&E because they never know anything about GP. It's not a common problem. This always leads to hours and hours of waiting around to be told that your blood is o.k and you've had some pain meds so now you can go home. My GI understood me when I said I probably wouldn't go even if I needed to, so he said he would call me back after he had made some enquiries. I got a call from the surgical member of his team a little while later. He had arranged for me to be admitted to hospital for some further tests.

It's a very long drive from my house and when you're in pain it seems to take forever. You feel every single bump in the road. I was pretty exhausted by the time we got there at 6pm. I got settled into my bed  and hubby left me to go and collect the kids, who had been dumped on grandma at the last minute (again). I felt so bad leaving them, my daughter was in floods of tears that I was going to hospital and leaving her again. The guilt was horrendous.

The nurse who admitted me did the usual thing...Gasto what? Ehlers...how do you spell that? But I'm used to that now and have some great one line comebacks.... I'll post them on here someday!

I spent much of the night vomiting copious amounts of bile. Normally I throw up a bit of acid and then dry heave for the rest of the time. This was different and I knew there was something new going on. On Saturday I went for down for an ultrasound scan, for which I thought they were investigating my tube site. It was the fastest ultrasound I've ever had... and I've had several! He barely looked at my tube site at all and then sent me back to the ward. I didn't know what to make of it at the time, was it a good thing...there is nothing wrong... or is it something so obvious he didn't need to look any further?

I slept...and slept... and slept some more. They had... for once, managed to balance my pain meds enough for me to get some real sleep for the first time in months!

On Monday morning I met my new surgical consultant. He was really lovely and I think he will look after me well. It turns out he had been to see me on Sunday but I was asleep so he didn't wake me. If I hadn't been laying in bed at the time I would have fallen over at what he said next. It turns out that I now have one huge gallstone sitting in my gall bladder.

Right back at the start of all my problems I was convinced it was gallstones that was causing the problem
but after 5 ultrasounds, an MRCP and HIDA scan they were ruled out more than once. So It seemed like a VERY strange coincidence that I now suddenly have a huge gallstone sitting there, clear as a bell.

Now... normally it is fairly simple to remove the gallbladder with keyhole surgery. However, I have the jej tube and pacer (gastricneurostimulator) wires in the way. So my only choice is to have another open surgery. I'm not even over the last one yet and now they are talking about more. I'm not liking the sound of this at all. He went on to say that the pain in my tube site is likely to be adhesion's from the surgery and there isn't really anything they can do about that. I've just been really unlucky I guess. It does not help me feel any better to know that because I know I'm not going to get rid of that pain... at least not for a long while. Anyway, he said that he would ask my GI to come and see me before going home, but I could go after that. At least now I had some better pain medication to get me through.

My GI came late in the afternoon. He is very disappointed about the whole situation because now I have adhesion's from my first op, I am more likely to get them again with another surgery. He did reassure me that I had the best man for the job in my new surgeon. That's good to know, however I would rather not have to go down this road at all!

As per usual, it was kind of a bad time to go home from hospital because the pharmacy was closed by the time it was confirmed I could leave. So I asked my mum to phone my GP for a fax number so we could arrange for me to collect my oramorph first thing today. The hospital offered to let me stay in overnight until they could dispense it themselves but foolishly I just wanted to be home in my own bed. I trusted that everything would go as planned so why stay? I needed to see my daughter and reassure her that I was going to be o.k.

My hubby went to get my meds this morning, only to be told that they had not received anything at all from the hospital so they couldn't dispense anything. Aaarrrggghhhh! So I have spent the whole day in agony, ringing back and forth between the hospital and the doctors surgery. It got to 4pm and we still hadn't heard anything back. My mum had to go down and get them to ask the GP to just do the script himself so I could get some relief! It worked lol and they soon got it made up for me. However, they still need ME to chase the hospital for them to fax the script through....erm...why does the patient have to do that? Shouldn't that be their job? really...c'mon people, I'm SICK!!!!

Thursday, 12 January 2012

What to do if you think you have Gastroparesis #Part 3

Please click here for #Part 1 and #Part 2


There are a wide range of tests that can be done to diagnose Gastroparesis but you may need to persevere to get them. Not all hospitals have the necessary equipment to perform the tests so expect to have to travel a bit.

When you first start out on the gastroparesis journey you will usually be faced with a host of tests that eliminate any organic causes first. The tests you have will depend on a combination of your symptoms and your consultants clinical judgement. This is one of the hardest stages for patients suffering from gastroparesis because it can be a lengthy process and the standard ultrasounds and abdominal tests are not specific enough. In most cases they come back clear because they are looking for growths and abnormalities and not the overall functioning of those organs.

Initially, most people are referred to a surgical gastroenterologist due to the severity of the pain. You might be lucky and get a great surgeon who is happy to think outside the box and take the investigations further, but from personal experience here in the UK and from what I've heard from others around the world, it's quite unlikely. This is the turning point in the process and it becomes a case of sink or swim with the healthcare system. Be aware that if you are young, female and underweight and they can't find the cause, some doctors DO jump to the wrong conclusions and start looking at mental health issues instead such as; eating disorders, anxiety and stress. Also, not everyone losses weight at the same speed and if you are not visibly malnourished it can sometimes be difficult to get people to pay attention to your nutritional status and can be incredibly frustrating!

By this point you will most likely be tearing your hair out wishing that someone would find SOMETHING, just so you know your not going mad! One very important thing to remember, is to keep striving for a diagnosis. Just because one person can't tell you what's wrong, it doesn't mean that there IS nothing wrong. You are the best judge of how you feel and you know what's normal for you, so don't let anyone convince you that they know better!

Your main priority is to find a physician rather than a surgeon. The best option for gastroparesis patients is to find a Neurogastroenterlolgist but they are few and far between. The next best thing would be to locate a hospital which does gastric emptying studies (GES). That's where you will find the doctors who know about this stuff! There a couple of different gastric emptying tests, one is a 2 hour test and the other is 4 hours. In both tests you eat a portion of egg which has a radioactive tracing agent in with either bread or toast. They then take a series of x-rays to observe the time it takes for the stomach to empty. There is also a breath test version where again, you eat the eggs but you then blow into little bags at timed intervals. This test also takes 4 hours. It is not the easiest test for someone who can't eat much and vomits a lot but it's worth the struggle just to get an answer!

Finally BINGO!

So you had a positive GES and have been diagnosed with gastroparesis. There are three types of gastroparesis, they are: Diabetic gastroparesis, whereby the delay is caused by diabetic neuropathy. Post-Viral Gastroparesis, which is caused by an acute attack of gastroenteritis. Then we have the "I don't know why group" which doctors so nicely term Idiopathic Gastroparesis (my take on that term is that it means the doctors are the 'idiots' for not doing enough research, not that we are just the stupid bunch!) However it is also worth mentioning that those suffering from connective tissue disorders such as ehlers-danlos syndrome are prone to gastroparesis, but as yet it is not recognised as a cause.

There are a wide range of tests out there to assess gut motility and once you have had a positive GES test you may be asked to go for further testing. Especially if medications aren't helping or your symptoms are severe. Here is a list of the ones I have come across in my journey : Barium x-ray, Sitz-mark study, manometry, Capsule endoscopy (smart pill), and intestinal biopsy. These are all aimed at determining whether you have an isolated gastroparesis or further intestinal involvement.

So that's about all for testing apart from blood tests of course, which become second nature as you gradually start to resemble some kind of voodoo doll but hey, that's just part of the process x

If anyone would like to know more about any of the tests mentioned or would like to add to the list feel free to post comments!

N.B. Once again, I must stress that this guide is not intended to replace professional medical advice. 

Tuesday, 10 January 2012

Still here x

Hey guys, sorry for not posting much recently, I have been working on connecting some of my groups and pages to my blog so that I can tidy everything up a little. I decided to write a full account of my story but as I started writing I realised it was going to take me much more than one session at the computer. So that's what I'm busy doing for now in case you were wondering why I'm so quiet at the moment. I have not slept much recently and it's not easy to write well when you have brain fog! So it's taking longer than expected and is looking more like a book than a blog but hey I'll finish it some day soon x