I always knew that in order to have the botox injections I was going to have to have a gastric emptying study. It was just part of the process to get to the end game. I also knew that the test involved eating a bit of food and seeing how it would travel through the stomach. Everyone knew that I wouldn't be able to tollerate the food but it was one of those cases of just grin and bear it. There was also a selfish reason for getting it over with quickly in that I was due to address the European Parliament about my journey from Crohn's to a Bowel Transplant. May is Crohns and Colitis month around the world and 19th May is World IBD day so to have been asked was kind of a big deal. Anyhow my speech had been written, we had a technical run through at 8am when they kindly took a we. Oh how webcam around the Parliament so that I could see what it was like. Skype was set up so it was just the test.
Most of the nurses on the ward was intrigued as to what this test actually was. They had heard of it but didn't know anyone who has had it. One nurse thought that perhaps you have to eat the raw eggs and that with the radioactivity it would glow a different colour in the body making it easy to detect. Can't say that filled me with huge excitement.
So around 9.15am yesterday a lady from Nuclear Medicine arrived on the ward with blue gloves on and carried this cardboard box of goodies down for the test. I followed a few minutes after with one of the porters and another lady who I assumed was also a nurse. It turned out she was a team leader for the porters but could never find her way around the hospital so she was on a day's exercise following the porters.
I digress, apologies. As I went in to the nuclear medicine x ray room I have to say I was nervous. I've had so many tests nerves shouldn't come in to it. Perhaps though it was due to the fact that the floor was covered with disposable mats indicating where I was allowed to be sick and the nurse was holding my breakfast tray with thick blue gloved. She was very kind and then apologised for making me it this. Couldn't too bad I thought it was scrambled eggs with a bit of white toast. Boy was I wrong. She then proceeded to tell me that unfortunately there was no milk with the egg, no salt, no pepper and that the lump in front of me was 2 eggs mixed with radioactive dye and a splash of water that was shoved in to a microwave. The night before I had been watching Gordon Ramsey's Hells Kitchen where he had thrown a chef mike out of the window. Chef Mike was a microwave that the actually chef had been using instead of doing the cooking and I couldn't get that thought out of my head as I was greeted with this bright yellow, almost glowing, lump of hard cold egg.
I did manage about 15% of the egg and after about 3 mins 95% of what went in came out again. Sadly for me it meant some had stayed in and what I thought would be a fairly quick test ended up taking over two hours and it meant that I had missed my speaking slot in Europe.
I arrived back at my room to be greeted by my wife who had come up to take me home. About two minutes later my nurse arrived to tell that the doctor who wanted to do the botox and who ordered the gastric emptying study had been in to say he was doing it tomorrow. To say we looked puzzled was an understatement. My surgeon had always said that the infections needed to fully be out my system and in fact the doctor himself had said that it would be a couple of weeks after my test before he could go ahead. Thankfully I have a team here who allow me to text and email them with concerns and questions and so a quick text and 5 minutes later my surgeon appears saying he will sort it all out. He did and despite his concerns the doctor said that the botox could go ahead and so I ended up still in hospital.
This morning arrives and I had been told that I was being picked up by transport at 11am and would be back at 5pm. Given that I was to be sedated for the botox that would allow enough time in recovery for me to come round and be ready for collection. i spoke to my nurse before leaving to say that I was due my anti sickness meds whilst I would be out so could she phone the department that I was going to and find out what would happen. Twice I asked and she came back telling me not to worry and that they would administer the drugs there. I reminded her I had a picc line but don't worry Michael came the response, they know what they are doing.
I arrived at the hospital just after 11am and was the only one in the room. The nurse attended to me very quickly and said that I am likely to be first on the list. Great, done soon and maybe even back to my own ward early I thought. Immediately I told him that I would need my meds in a couple of hours and was comforted when he said yes, don't worry. I was sitting for a while and the room was still empty, so I asked another nurse what time I would be done. Well she said the clinic doesn't open until 1.30pm but you will be first. 1.30pm, so why was I actually picked up at 11am?
Anyhow time ticked on and a gastro doctor came to canulate me. I reminded her that I needed by meds around 1pm and that I had a picc line. Oh she said I wouldn't get it done via the picc, I am not sure any of them have seen one or would know what to do, then she left. I spoke to another nurse to ask if she would be getting my meds as time was moving on. She said don't worry and off she went. Great someone who knew what was going on and a big smile came over my face when she returned. She opened her pocket, took out her hand cream, her bottle of coke but no meds. Up I got and spoke to another nurse again saying that I was due my meds very shortly. Don't worry I will sort it she said and off she went. A few mins later she returned. I smiled at her as if to say thank you and out of her pocket she took her can of tango, put it on the shelf and opened the hand cream to use. By now I was getting worried. I was feeling sick, no drugs in sight and clinic due to open soon. Another nurse popped her head in and I asked her. With a big smile she said I know don't worry and off she went. Back she came, again smiling at me then took her can of tango out of her pocket put it the otherside of the shelf so as not to get confused with the other can and again used the hand cream.
I'm now very worried and the lady in charge appears. She comes over and I tell her what I need. Oh she says I don't think the hospital carries those drugs. Come on you are one of the biggest NHS trusts in the country and you don't carry any anti sickness meds. After a quick chat with another member of the team she went off, came back, didn't go in to her pockets but she did bring my meds and she did use the picc line. Oh boy what a performance.
About 1.45pm I went in for my botox. I must have come round in recovery about 3pm to be told that the botox had worked and that I could go back to my own hospital. Fantastically my transport back was early and I was soon slumped on my bed.
So now hopefully I have a stomach that will let through food and drink so once this sore throat eases we will give it a go.
Last night I had the chance to chat with a gentleman who had his bowel transplant about six months earlier than me. He had come in for his stoma reversal and looked very well. We chatted about loads of things, compared stomas (as you do) and talked about everything from high waisted trousers to eating curries. He made a very good point. However much you get on with life and however good things get there is always a time in the day when you realise that you have had such a major transplant. It can be eating something, walking somewhere or just jumping over a puddle and it hurting when you land. We are both very positive people but we also realised what a tiny club we belong too. So few bowel transplants have actually taken place, however we were united about one thing. This place, Oxford Tranplant Unit, is truly outstanding. They focus on getting you back a quality of life. We both had our own medical reasons for having this procedue done but we both shared a common goal of wanting a bit of normality back.
For me, there isn't a day when I don't think of being back with my wonderful wife and amazing kids and just being a normal part of their everyday lives. That is my sole goal for doing this. Being in this time for 5 weeks was a mental challenge at times and getting shingles in the eye is certainly not something I intend to repeat. I guess now it has really dawned on me that I have been ill for 31 years of my life. I know there are people far worse off than me, but having this transplant is all about the future and making sure that I am fully part of my family's life for the next 31 years and way beyond that. I also feel strongly that by sharing my journey others can benefit. People need to realise what it is like to cope with such incurable illnesses. That is why I was so keen for my voice to be heard in Parliament and beyond. I have had this transplant for my own personal reasons but it doesn't mean that I cannot help others and also tell the world about this unit in Oxford.
I have to admit that writing this blog post first time around it seemed a lot better written, sadly I lost the post so had to rewrite it. I guess that despite all my great intentions in the social media world I am just a computer dummy at heart.
See you soon enjoy the radioactive eggs below!