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Life with gastroparesis

Posted 02-27-2012 at 04:09 PM by sue97
Updated 02-27-2012 at 08:30 PM by Administrator

Hi

This is the first blog I have written. i have a contition called Gastroparesis or paralasis of the digestive system. It causes severe pain, nausea, severe vomiting,bloatibg,belching, malnutrition.
I have suffered from this since 2008. At first the hospitals said they didn't know what was wrong with me. I was told by one Dr that they may never find out what was wrong and I would just get worse until they would have to put an NG tuble in to feed me. I went home devastated not knowing what to do. My answer was to research my symptoms and find out what was wrong with me myself. My first thought was Spincter of Oddi disfunction. I was correct with this but when I had a botox injection in the sphincter it onle aleviated a few symptoms. I then looked into Gastroparesis. I asked my Consultant to refer me for a Gastric Emptying Test. This was positive.

The food wasn't just slowly moving through my digestive system it just wasn't moving at all. So my consultant finally agread with me but he said there wasn't anything that could be done for me. I just had to alter my diet acordingly. As I had already been doing this with no effect I told him I had researched about a Gastric Stimulator or Pacemaker. I asked if he could refer me to the nearest Hospital that did the operation. In February or 2010 I was told yes I may be a good candidate for it. They put an application in for funding to have a temporary stimulator fitted. The funding for this came through in July of 2010 and I had the temporary one fitted in September of that year. It was amazing.

It was the first time I hadn;t felt sick in years. I had an appointment in 2010 and was told they now had to go for funding for the permenant one. All the time I am waiting I am in and out of hospital with severe pain and vomiting. My consultant where I'm based said there was nothing that could be done until funding went through and I finaly got the stimulater fitted.

In January of 2011 I was granted funding and I had a preop appointment. I thought that as I was going for a preop the op would be very soon. Wrong I was ringing on a weekly basis asking when will it be. When I called in June of 2011 I was told should be done by the end of July . At last. Finally got a date in July 2011. So the day of the op, we saw a surgeon first off who said that the stimulater wouldn't be turned on when I came out of surgery. I thought this was wrong but I thought they knew what they were doing. He also said I would see the doctor before I went under. Wrong I didn't see anyone other that Anethatists before the op. I was told by them that I would have a morphine pump put in as I was on Fentynal patches so I would need a higher level of pain relief. Well I woke in pain. No morphine pump.

I had to ask over and over again for it. When they finally gave in and put one up they had to give me 4 doses before they got ontop of the pain. Day 1 wasn't too bad I was still on lots of antisickness and pain relief. I was told I could eat straight away. Only one problem. They didn't have anything on the menu I could eat as I was mainly on liquids and soft food. I can't eat read meat,fruit or veg, fiber or meat that wasn't very well cooked. They kept trying to give me sandwiches that I couldn't eat. I ended up eating porrage and custard. Then on day too the nurse said I could go home.

I questioned this as I hadn't seen a Dr and didn't know what I could or couldn't do. I though it was switched on as I could feel my stomach gurglling. In the end I had to call my Consultant secretary asking to see someone asap. Within 20 mins a Dr apears, who didn't have a clue about the op or what I could or couldn't do. He sugested that I stay in hospital until I saw a Dr the following Dr. Well he didn;t really have a clue but gave me more info than I had before. So I was sent home beibg told I would be seen in clinic in 2 weeks. I called the hospital after being home 5 days to find out when my appointment would be. I was told 6 weeks. At this I was at the end of my teather. But still had to wait 6 weeks to be seen.

Then it was 20 or so miles further away. Great well he turned up the stimulater. I was still being sick every day but it had come down from sometimes 30 to around 10. Also I hadn't been in hospital since my op. At achievement in its self. I think I need to take a breather I'll lell the rest tomorrow.
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