My Experience So Far--a UK perspective

My Gastroparesis was diagnosed about 4 years ago after a barrage of tests. I was told by my GI Dr ‘Go home and live with it’. I went away devastated but determined nobody was going to write me off at 35. So I looked to the internet. I found lots of bits of info in the US but nothing in the UK. I contacted the Mayo Clinic and they suggested a few different web sites that may be useful but they didn’t know what treatments were offered in the UK.

I checked and found that if I lived in the US there was an in plant I could have called a Gastric Pacemaker by Medtronic. Through Medtronic I found the contact details for Dr Sri Kadirkamanathan at Broomfield Hospital in Chelmsford. I contacted his Secretary and she was really helpful informed me that I needed to have a Gastric Emptying test to confirm I did have Gastroparesis as it was only my Drs opinion. So I went back to my Dr and gave him all the printouts about Gastrapresis and that to confirm the diagnosis I had to have a Gastric Emptying test. He did agree to arrange the test but they didn’t do them in in my area. Well after a lot of phone calls I had the test done and spoke with Dr Kadirkamanathans secretary again with the results. She let me know that the nearest hospital that did the op was in Leed about 80 miles away. I got a referral to see Mr Dexter or Mr Sarela. They agreed that I was a good candidate for the Pacer.

Then the problems start. The National Health Service in the UK is split into counties. I lived in Derbyshire and Leeds is in Yorkshire, so Leeds would have to apply to Derbyshire for the funding, first of all to have a temporary pacer fitted. Then if that was successful they could go back and apply for funding for the permanent one. Well the application for the temporary one was made in the February and was granted in the July. All the time I was vomiting up to 30 times a day in severe pain. Every time the mail came I was hoping for the letter. I eventually had the temporary pacer fitted in August of 2010. Wow amazing. I woke up and I felt strange not knowing what it was. Well that sensation was HUNGER. For the first time in ages I didn’t feel sick. When I went back to see the Dr, he said they had to apply for the funding for the permanent 1. This was in the September. Every week I would call chasing things up trying to find out if the application had been successful. Finally at the beginning of January 2011 the call came I was granted funding to have the permanent pacemaker fitted. I was astonished I cried as the funding coordinator was telling me how things would go. Later on in the January I was called to Leeds for a Preoperative assessment. I thought great if I’m having this then the operation must be within the next few weeks. Well weeks drew out to months with me calling every week asking them if they had any news. In June I was given the date July 19th 2011.

So I hadn’t seen a Consultant since I had had the temporary one out in September of the year before. On the morning of the operation I saw a surgeon not anyone I had seen before. He told us that he didn’t know if the pacer would be switched on or not when I came out of surgery as he didn’t know how my surgeon did things. (alarm bells should of started then but I continued along the process). I thought I would see a Medtronic Rep but no he said I would see my consultant in Theatre.

Well went to theatre. No consultant. The Anaesthetist said I would see him in recovery and I would have a Morphine pump fitted as I was normally on Fentanyl patches so I would need the pump to deal with my pain.

I woke up in excruciating pain. No Morphine pump. After complaining of severe pain and that I had been promised a pump they finally got authorisation to have the pump put up. Still I didn’t see a Dr but I could tell it was switched on as my stomach was gurgling. It hadn’t done that in years. I was taken back onto the ward and given a small box and told to read the booklet when I felt better. The morning after the nurse came round and said we can take your pump down now as you won’t need it anymore. I was just given my normal pain meds but they didn’t have any Fentanyl patches. She then said I could go home. I said I needed to see a Dr before I could go as I had been told I would see one. I made her aware what I had been told before my surgery and she had nothing to say, just that I could go. I was not at all happy about this as I hadn’t been told what I could or couldn’t do, when I needed to come back, if the stiches were dissolvable or if I needed them removing. I was not impressed, so I made a call to my consultants secretary explained that I didn’t want to cause any trouble but I explained the situation to her and she was amazed that they were trying to send me home. Within 20 minuets a Dr came to see me to explain that nobody from my consultants team were even working today and I would have to wait until the next day to see anyone from that team. He didn’t know anything about the operation I had had so he couldn’t help. The following day I saw a Dr who said obviously the pacer was switched on, the stitches are dissolvable, no bending or twisting for 8 weeks, not to go anywhere near any type of magnets such as in store security systems and I would be seen in clinic in 2 weeks. So off I went home I waited for an appointment to arrive. None did. I called Mr sarelas secretary to find out I would be seen in clinic in 6 weeks where the pacer would be adjusted.

Well the treatment hasn’t got any better. I am still sick every day but not half as much. I am not in as much pain. Each time I have been up to Leeds I have asked if I can go shopping and every time I’m told no and even your laptop computer could alter the settings. It sometimes makes me wonder if they actually know what they are doing. Well they say the operation was a success as my hospital admissions are down and my sickness has reduces significantly. I just hopped that it would be the same as having the temporary Pacer in. Apparently I am expecting miracles. Well aren’t we all. xxx

*about the author: Suzanne was diagnosed with gastroparesis 5 years ago. She is patient in the UK and had a gastric stimulator placed in July of 2011.