It has now been a week since returning from my last stint in hospital and for me so much has happened but that may not seem the same to you reading this. I guess for me it has always been about taking small steps forward, always knowing that I have a goal to aim for and coming home was a massive step forward.
With my stomach firmly open and ready to play I have started on the trail towards eating normally. It is funny but one of my lovely friends said to me what are you looking forward to eating most. Bizarrely I couldn't actually answer her as it has been so long since I have eaten anything much I haven't really thought about food. Anyhow as the week has worn on so food has slowly started to come back in to my life. It is still not natural, I mean I don't get up in the morning and even think about breakfast. I do think about taking our dog Waffle for a walk but not really about breakfast. Having been told to start with cakes I have sampled cherry cake, lemon drizzle cake, apple cake and other varieties. Even my friends that come by to say hello give me their cake orders before they arrive. One was so put out that there was no more apple cake left that he almost didn't come, that was until I told him my daughter makes a mean lemon drizzle cake and five slices later he did leave a happy man.
Progress has been made though beyond cake and I am now eating different things throughout the day. I think raspberry ripple ice cream has been my favourite thing so far although I am a little upset that my favourite mint chocolate flavour hasn't made an appearance. The one thing that hasn't yet happened though is the retraining of my brain to start thinking about food. Thankfully my wife does appear with a plate and some food on it at different times of the day so the great bowel transplant foodathon has begun. It has though also coincided with the great stoma outputathon. I am averaging over 2 litres a day and although I do put about a litre of water back in to my bowel most evenings this constant emptying has become a nuisance. I know that I shouldn't moan so apologies for that.
One moan that I think I am entitled too is the state of toilets. I met with someone I hadn't met before to go over some future (seems distant at the moment) work ideas, together with a friend, in a Starbucks. The weather was beautiful and so sitting outside made perfect sense. Anyhow whilst they made small talk I went off to the loo for an "empty". So you walk in to the loo and then what, well I have to place my enteral feed bag down, squat down and empty my stoma bag. Pretty easy, done it hundreds of times; but what do you do when the loo is filthy. Didn't want to put my feed bag down on the floor as it was soaking so I found a dry spot in the corner. Then I realised that my lead from my bag to my stomach wouldn't stretch far enough for me to lean over the toilet. So I hook it over my shoulder carefully twisting my body so as not to let it drop in to the toilet. Now I have to squat down, except at home I would kneel. Can't kneel here as the floor is dirty and wet. The light bulb moment! I know I will empty in the sink and then wash it all away. I carefully open the end of the bag and empty a little in to the sink, then turn on the tap to flush it away. Crikey the tap doesn't work and the water only trickles out, now what am I going to do? Ok I know I will carefully go over to the loo and trust my leg muscles to stay strong whilst I squat. Over I lean, oh no a little leaks out of the end of the stoma as I haven't closed it fully. So there I was, crap on my trouser leg, crap in a sink that doesn't work, my back pack by this time had swung off my shoulder and in to my tummy and all this when I know two people are waiting for me......
Suffice to say I sorted things out eventually but why do shops keep their toilets so filthy? Our conversation carries on, I am in full flow, things are doing well and then disaster. My bag has filled again very quickly and I need to do something. So I do what I think many stoma patients have done in the past and ignore things for a bit. Stupid eh, I mean where is it going to go. It is not going to think I know I will dribble back in to my bowel. Eventually when I think everyone is relaxed, I go and do the whole toilet routine again. This time though my back pack decides to swing round off my shoulder and in to my stomach just at the moment that I am emptying my stoma bag.
Anyhow - it was a positive get together and hopefully it wont be long before I can actually start to think about work.
Food was going very well until last night when I decided to do a bit of recycling. I wouldn't mind but it was only an omelette. Immediately my mind thinks oh great that's the botox over and done with. Then I reckoned it was worth having another go today and see what happens and I have to say that at the time of writing this things have stayed down.
Coming out of hospital this last time I definitely felt a great sense of optimism and decided that as well as eating a bit I would get off my backside and do some exercise. I have been out with the dog 3 or 4 times a day. In fact yesterday evening when I went to go out, the dog stayed in his basket with his eyes shut, I think I shattered him! Total wimp I mean who has had the bowel transplant. I do have another reason for getting fit though. There is an event called the British Transplant Games happening at the end of August and I would really love to try and be well enough to enter the golf tournament. My place has been secured I just need to ensure that my health is ok. If my transplant surgeon or coordinator is reading this then don't laugh. I know I haven't mentioned it before but for me it is something to aim for; a goal to try and reach. I know that I may not get there but it is something to focus on.
My other pet focus of late has been the state of hospital food. Some of you may have seen a report in the UK press that MacDonald's and KFC have been shown to be more nutritious than NHS food. How can that be right? Eating healthy food is essential in hospital especially to our family of bowel diseases yet currently it works out that roughly 80p is all that is spent per meal per person. It's a scandal.
Talking of scandals I am currently in a fight with the government department that deals with benefit payments. So far mine seem to have been stopped without any explanation. Thank you to everyone who has shown support and also offered advice. Believe me this is one fight I intend to win.
I guess I had better sign off now, stoma bag to empty and I can hear the clattering of plates in the kitchen. I suspect that means food. Am back to Oxford next Wednesday for my full MOT am just keeping everything crossed that I am not sick again.
Till next time
xx
Friday, 25 May 2012
Sunday, 20 May 2012
8.34pm
Well I have been home from hospital now for 2 days. It is very weird when you come back after such a long absence. You think that life stays still and waits for you but in reality things just carry on. In my bubble of bowel transplant world these last few weeks have been some of the hardest to get through. Initially I thought that I would be in for a few days and as you all know one thing led to another and five weeks later I came home.
Physically you deal with things, pain, infections etc they get sorted. It just felt on one large mental roller coaster and actually this time I think it hit Justine pretty hard too. The ups and downs never stop, it really is like supporting QPR. Oh and by the way we did stay up this season!! The saving grace has really been our kids. They are three incredible children. One of the proudest things I heard was that the school had spoken to Justine and said that unfortunately they were used to tough family situations and having to watch out for different kids and their reactions. They did though single out our three for being incredibly level headed, lovely kids to teach and very unaffected by what they have had to go through. Yes I had the bowel transplant because I was fast running out of options but time and time again I have clung to the belief that I am doing this for Justine and the kids just to get back to an ordinary boring normal life. Believe me it is worth every moment of pain to come back to your family and just see them smile when you walk in. Mind you, I lost control of the TV remote inside one hour and once the hugs were over life just drifted back to normal; which is exactly as I would have wanted it too.
Coming home this time, has though, been stranger than before. Why? Well this time my stomach is open for business and this new transplanted bowel is expecting some serious action. What you somehow forget is that if you haven't eaten properly for 3 years then you don't just open the tap again. Apart from taking it slowly the thought of actually eating food doesn't enter my mind. It feels a bit like I need to reboot the part of my brain that says eat. Luckily I have a wife who will appear in front of me at regular intervals with a plate and a bit of food on it. My nutritionist said cake is a very good start and so far I have had two cakes baked for me in two days, how many slices can a man eat? Actually as i am typing this I can hear shouting in the kitchen, sounds like one cake has gone badly wrong. Guess you can't get the staff these days.
The strangest part is just not being sick after eating. It just doesn't happen at the moment. What a fantastic feeling that is, bizarre but fantastic. I am also though still on my enteral feed and over night fluids so with a bit of luck I should be starting to gain a bit of weight. I'm guessing that the team at Oxford knew that it was going to feel strange. I had a text from the surgeon and email from dietitian inside 24 hrs of being home just checking up on me.
The other thing about being home is that there are no typical NHS stories to tell you. I don't sit in our hallway waiting for transport to arrive three hours late and so far (to my knowledge) no one has tried to mix radioactive liquid with my food. And, I don't walk in to a room and watch my kids line their soft drinks up on the window sill and then put on hand cream. Actually I have no good gossip to share. Unless of course you would count my daughter having a tantrum over the dress she was wearing for a party. She chose it, she put it on and then she decided she looked terrible. See- definitely not as good as radioactive eggs!!
As most of you know, I do seem to spend a bit of time on social media but over the last few days with extra good reason. May 19th was World IBD Day and as you can imagine that has huge meaning in my life. Living with an inflammatory bowel disease for 31/43 years is a long long time. For me it really is a chance to try and raise awareness of these incurable debilitating disease, say thank you to those who have helped me and most importantly encourage others who are going through similar problems to me. I really want people to know that you can live a great life despite the hiccups.
My usual tweeting to every celebrity under the sun got a few responses and re tweet but perhaps not as many as I would have liked. We then decided that it was the perfect moment to try and bring together as many people as we could from around the world with a connection to bowel disease. We set up a facebook group called Bowel Disease One Global Family.Currently we have 500+ family members so if you want to join please do so. You are all welcome.
It is so inspiring reading what other people have been up to and very humbling to hear all the stories. Believe me this global family is going places, each and every one of them are heroes and heroines. I feel very lucky to be in some small way part of all of your lives.
My personal inspirations remain my wife Justine and kids Aaron, Nathan and Lauren. Oh and all together please wish Aaron good luck with his GCSE exams. He did 4 last week and has 6 more exams this week.
I can't let this post finish without though mentioning Oxford. I have been told that I can tell you who the transplant coordinator is so please say hello to Lydia Smith (who, if a bowel transplant is a serious option you should contact at The Churchill Hospital,Oxford); but how cannot I not talk about Marion, undoubtedly the world's expert in nutrition pre and post bowel transplant and the kindest genius surgeon you could wish for in Anil. These guys already have and continue to change my life for the better. For me there would be no better tribute to them on World IBD day then to recover quickly and get back to normality. As one of my twitter friends said "what actually is normality?"
Right, it is almost time for dinner. Maybe a bit of ice cream tonight. Not sure if we have Ben and Jerrys but I have been informed by my kids that there is a screwball waiting for me in the freezer. Not sure if they were referring to me or if it really is the name of an ice cream.
Till next time
x
Physically you deal with things, pain, infections etc they get sorted. It just felt on one large mental roller coaster and actually this time I think it hit Justine pretty hard too. The ups and downs never stop, it really is like supporting QPR. Oh and by the way we did stay up this season!! The saving grace has really been our kids. They are three incredible children. One of the proudest things I heard was that the school had spoken to Justine and said that unfortunately they were used to tough family situations and having to watch out for different kids and their reactions. They did though single out our three for being incredibly level headed, lovely kids to teach and very unaffected by what they have had to go through. Yes I had the bowel transplant because I was fast running out of options but time and time again I have clung to the belief that I am doing this for Justine and the kids just to get back to an ordinary boring normal life. Believe me it is worth every moment of pain to come back to your family and just see them smile when you walk in. Mind you, I lost control of the TV remote inside one hour and once the hugs were over life just drifted back to normal; which is exactly as I would have wanted it too.
Coming home this time, has though, been stranger than before. Why? Well this time my stomach is open for business and this new transplanted bowel is expecting some serious action. What you somehow forget is that if you haven't eaten properly for 3 years then you don't just open the tap again. Apart from taking it slowly the thought of actually eating food doesn't enter my mind. It feels a bit like I need to reboot the part of my brain that says eat. Luckily I have a wife who will appear in front of me at regular intervals with a plate and a bit of food on it. My nutritionist said cake is a very good start and so far I have had two cakes baked for me in two days, how many slices can a man eat? Actually as i am typing this I can hear shouting in the kitchen, sounds like one cake has gone badly wrong. Guess you can't get the staff these days.
The strangest part is just not being sick after eating. It just doesn't happen at the moment. What a fantastic feeling that is, bizarre but fantastic. I am also though still on my enteral feed and over night fluids so with a bit of luck I should be starting to gain a bit of weight. I'm guessing that the team at Oxford knew that it was going to feel strange. I had a text from the surgeon and email from dietitian inside 24 hrs of being home just checking up on me.
The other thing about being home is that there are no typical NHS stories to tell you. I don't sit in our hallway waiting for transport to arrive three hours late and so far (to my knowledge) no one has tried to mix radioactive liquid with my food. And, I don't walk in to a room and watch my kids line their soft drinks up on the window sill and then put on hand cream. Actually I have no good gossip to share. Unless of course you would count my daughter having a tantrum over the dress she was wearing for a party. She chose it, she put it on and then she decided she looked terrible. See- definitely not as good as radioactive eggs!!
As most of you know, I do seem to spend a bit of time on social media but over the last few days with extra good reason. May 19th was World IBD Day and as you can imagine that has huge meaning in my life. Living with an inflammatory bowel disease for 31/43 years is a long long time. For me it really is a chance to try and raise awareness of these incurable debilitating disease, say thank you to those who have helped me and most importantly encourage others who are going through similar problems to me. I really want people to know that you can live a great life despite the hiccups.
My usual tweeting to every celebrity under the sun got a few responses and re tweet but perhaps not as many as I would have liked. We then decided that it was the perfect moment to try and bring together as many people as we could from around the world with a connection to bowel disease. We set up a facebook group called Bowel Disease One Global Family.Currently we have 500+ family members so if you want to join please do so. You are all welcome.
It is so inspiring reading what other people have been up to and very humbling to hear all the stories. Believe me this global family is going places, each and every one of them are heroes and heroines. I feel very lucky to be in some small way part of all of your lives.
My personal inspirations remain my wife Justine and kids Aaron, Nathan and Lauren. Oh and all together please wish Aaron good luck with his GCSE exams. He did 4 last week and has 6 more exams this week.
I can't let this post finish without though mentioning Oxford. I have been told that I can tell you who the transplant coordinator is so please say hello to Lydia Smith (who, if a bowel transplant is a serious option you should contact at The Churchill Hospital,Oxford); but how cannot I not talk about Marion, undoubtedly the world's expert in nutrition pre and post bowel transplant and the kindest genius surgeon you could wish for in Anil. These guys already have and continue to change my life for the better. For me there would be no better tribute to them on World IBD day then to recover quickly and get back to normality. As one of my twitter friends said "what actually is normality?"
Right, it is almost time for dinner. Maybe a bit of ice cream tonight. Not sure if we have Ben and Jerrys but I have been informed by my kids that there is a screwball waiting for me in the freezer. Not sure if they were referring to me or if it really is the name of an ice cream.
Till next time
x
Wednesday, 16 May 2012
8pm
Of all the things that I have wanted to do in my life eating radioactive eggs and having botox injections in the base of my stomach were surprisingly not on that list. Seeing a test match in Australia on Boxing Day is on the list, wanting to go to watch the US Masters Golf in Augusta is on the list but the first two I mentioned were never on the radar.
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!
xx
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!
xx
Monday, 14 May 2012
3.42pm
I thought that I would up date you as tomorrow's breakfast has just been delivered. It will be the first time that I have had breakfast in ages. I always thought that one of my first breakfasts would be poached eggs on toast or maybe eggie bread (not sure that is quite the right terminology but it's what we call it in my house). Anyhow I did get eggs just not how I imagined in.
Two fresh raw eggs have been delivered with a bit of bread and a little piece of butter, all stored in a sealed cardboard box and sitting in the fridge. No one is allowed to open the box until I hand it over the chef. The chef is no Jamie Oliver or Michel Roux no it is a nuclear medicine nurse who will scramble these two eggs and then for extra special flavour add in a radioactive substance. I'm sure you are really jealous at the moment. Come to think of it, I hope there was some milk in that box otherwise it is going to be even more yuk. There must be mustn't there.
So the idea is to eat these two eggs and they will then take images at various points as it gets in to my stomach. That is of course if it even gets that far. I was advised that if I am going to be sick it needs to be done very neatly. Straight in to a round bowel please they have said and certainly don't get it down you or over anyone else, it's radio active after all. Apparently I will not be allowed to hug or kiss anyone for a period of time and may need my own special toilet for a day or two. It is not really painting a great picture in my head at the moment. Feeling a bit queasy already but hey we have to give it a go and you never know I could easily surprise myself and it stays down for 30 seconds not 10 seconds. Here's hoping, and for all my joking I will be doing my hardest to keep my mouth shut for as long as possible.
So all of this is to ensure we get funding for the botox and also just to rule out any other issues. The good bit is that once this is over I am expecting to go home. Not sure if I will need to stay for a little while, I suspect so but at least home beckons. Having gone through three lots of infections I think that I am due out for a while.
This morning has been taken up with nerves for my eldest son. He started his GSCEs or 'O' levels as we used to call them. Either way I think Justine and I were more nervous for him. I'm sure he will be fine though. It is actually incredible how well all three kids seem to cope with me being in and out of hospital. They are really amazing kids and that is down to how my wife has looked after them. On occasions I think I'm just the lodger who chats to them over skype. In reality that is the reason why I had this bowel transplant. It was all about not being an even longer long term patient and every day that goes by is a day closer to normality. Whatever normality actually is.
Tomorrow was also when I was due to speak in the European Parliament. It would have been an amazing experience but if I get back from my luxury breakfast on time then they have agreed to set up a skype link and let me speak from my hospital room. I am a bit worried about that though. I haven't been able to have a haircut, shaving I can sort out but I've got no shirt and tie. Will a tracksuit and t-shirt be ok? Who will do my make up before I go live and shall I have Jeremy Kyle (for those of you not in the UK he is our version of Jerry Springer) or shall we go for the tranquil background of my window and the beautiful view of the other side of my hospital ward. So maybe it will be a good thing if they just read out my speech, I mean with no stylist here how am I expect to speak.
Although I am looking forward to being at home I also know that there are plenty more trips back here planned. Eventually once all my infections completely clear and all the toxins have left my body I will be back to have more toxins injected back in to me via the botox. Then there is the dream of a reversal, so lots to look forward too. Despite all these ups and downs I do feel that there is light at the end of the tunnel and I realise everyday how truly lucky I am to have amazing family and friends to help as well as this world class medical set up. Being part of this exclusive bowel transplant family definitely opens your eyes to so many parts of other people's lives. I have now met with several transplantees and prospective transplant patients and whilst you just assume that we all go in to this for the same reasons; to get our lives back and enjoy being part of family life again, it is not the same for everyone. You see people who know rationally that they need the operation yet are too scared to go for it. You make judgements about people based on first impressions yet when you get to know them you realise that underneath it all you are much more similar than you think. When Justine and I started on this journey we knew that a bowel transplant was the only option to full recovery. That decision was simple for us to make. For some though the easiest decision is actually the hardest decision of their lives. I had just assumed that everyone would be thinking the same way but that isn't the case.
Ok enough now you have probably switched off. From my last post you will have seen that we have found our Josh in the West Wing, are there any President Bartletts out there?
xx
Two fresh raw eggs have been delivered with a bit of bread and a little piece of butter, all stored in a sealed cardboard box and sitting in the fridge. No one is allowed to open the box until I hand it over the chef. The chef is no Jamie Oliver or Michel Roux no it is a nuclear medicine nurse who will scramble these two eggs and then for extra special flavour add in a radioactive substance. I'm sure you are really jealous at the moment. Come to think of it, I hope there was some milk in that box otherwise it is going to be even more yuk. There must be mustn't there.
So the idea is to eat these two eggs and they will then take images at various points as it gets in to my stomach. That is of course if it even gets that far. I was advised that if I am going to be sick it needs to be done very neatly. Straight in to a round bowel please they have said and certainly don't get it down you or over anyone else, it's radio active after all. Apparently I will not be allowed to hug or kiss anyone for a period of time and may need my own special toilet for a day or two. It is not really painting a great picture in my head at the moment. Feeling a bit queasy already but hey we have to give it a go and you never know I could easily surprise myself and it stays down for 30 seconds not 10 seconds. Here's hoping, and for all my joking I will be doing my hardest to keep my mouth shut for as long as possible.
So all of this is to ensure we get funding for the botox and also just to rule out any other issues. The good bit is that once this is over I am expecting to go home. Not sure if I will need to stay for a little while, I suspect so but at least home beckons. Having gone through three lots of infections I think that I am due out for a while.
This morning has been taken up with nerves for my eldest son. He started his GSCEs or 'O' levels as we used to call them. Either way I think Justine and I were more nervous for him. I'm sure he will be fine though. It is actually incredible how well all three kids seem to cope with me being in and out of hospital. They are really amazing kids and that is down to how my wife has looked after them. On occasions I think I'm just the lodger who chats to them over skype. In reality that is the reason why I had this bowel transplant. It was all about not being an even longer long term patient and every day that goes by is a day closer to normality. Whatever normality actually is.
Tomorrow was also when I was due to speak in the European Parliament. It would have been an amazing experience but if I get back from my luxury breakfast on time then they have agreed to set up a skype link and let me speak from my hospital room. I am a bit worried about that though. I haven't been able to have a haircut, shaving I can sort out but I've got no shirt and tie. Will a tracksuit and t-shirt be ok? Who will do my make up before I go live and shall I have Jeremy Kyle (for those of you not in the UK he is our version of Jerry Springer) or shall we go for the tranquil background of my window and the beautiful view of the other side of my hospital ward. So maybe it will be a good thing if they just read out my speech, I mean with no stylist here how am I expect to speak.
Although I am looking forward to being at home I also know that there are plenty more trips back here planned. Eventually once all my infections completely clear and all the toxins have left my body I will be back to have more toxins injected back in to me via the botox. Then there is the dream of a reversal, so lots to look forward too. Despite all these ups and downs I do feel that there is light at the end of the tunnel and I realise everyday how truly lucky I am to have amazing family and friends to help as well as this world class medical set up. Being part of this exclusive bowel transplant family definitely opens your eyes to so many parts of other people's lives. I have now met with several transplantees and prospective transplant patients and whilst you just assume that we all go in to this for the same reasons; to get our lives back and enjoy being part of family life again, it is not the same for everyone. You see people who know rationally that they need the operation yet are too scared to go for it. You make judgements about people based on first impressions yet when you get to know them you realise that underneath it all you are much more similar than you think. When Justine and I started on this journey we knew that a bowel transplant was the only option to full recovery. That decision was simple for us to make. For some though the easiest decision is actually the hardest decision of their lives. I had just assumed that everyone would be thinking the same way but that isn't the case.
Ok enough now you have probably switched off. From my last post you will have seen that we have found our Josh in the West Wing, are there any President Bartletts out there?
xx
Thursday, 10 May 2012
I always wanted to be in The West Wing. It was my favourite ever TV series and I fancied myself as Sam Seabourbe script writer to the President.
So today my dream came true, I did go to the West Wing. The only problem was that it was the west wing of another hospital in the trust and it was to have my eyes checked following my shingles.
Throughout my time as an NHS patient I have tried to separate the medical side with the administrative side. I do this because the two don't always work in tandem. Whilst you know that I think the quality of my medical care has always been excellent the same cannot be said of the admin. What happened today summed it up perfectly.
I had been booked to have my eye exam a couple of days ago and was always told it was just after 3pm and that transport was booked to collect me at 2.30pm and bring me back at 4.30pm. Simple and very efficient. Oh no. Transport arrived at 3.30pm got me to the clinic at 3.40pm and as I was wheeled in there was a transport crew in front of us who had arrived to take me home. They had got there to collect me before I was even due to arrive.
We sort that out, the nurse says I will be about 30mins and asks for transplant to come back then. It then transpires that this nurse had talked to my ward yesterday, told them that the car was booked for 2.30pm and the eye clinic had asked if I could come a bit earlier. The two of them agreed 1.30pm and transport was supposed to be brought forward to 1pm ish. No one told me. My notes still had the original time so I was totally oblivious to this change. No one had obviously told the doctors because when they came in this morning they too had it down for after 3pm.
After I was dropped at the clinic the nurse asks why wasn't I here at 1.30pm, I shrug and say I don't know. Wind the clock forward to 4.30pm and I ask the receptionist to chase up my transport. He held on for exactly 31 min and 10sec (I know because he told me exactly) before an operator told him that I was in a queue and would be collected soon. At 5.15pm I was asked to leave the clinic and wait downstairs as the clinic was closing. The kind nurse phoned again to say where I would now be waiting. As I write this its 5.50pm and still no sign of anyone.
The icing on the cake was that the nurse at the eye clinic said I was collected because they went to the wrong transplant ward. Stop press news there is only one at my hospital. Yes the drivers said they were late because they were given 3 jobs in the sane time slot and I was last on the list.
So there you have in one why the NHS is such an administrative nightmare.
From my own health I seem to be finally coming out of my shingles slump. The he's continues to bang beautifully but the red blotches are fading. I finally escaped from my room with my sister this morning. I figured that if I was allowed out this afternoon then I can do for a walk this morning.
My kidney function level remains a constant up and down work in progress. If I don't have the drip over night then I feel myself getting dehydrated in the otherhand I want to be able to cope without it. At the moment the water is combined with 8 dyralite sachets and output has remained at just under 2 litres which is positive. The awful odour has returned in emptying the stoma. In fact so much so that even I won't go back in my own bathroom for a while.
Finally I am hoping to have a few trouble free days without infections. The radiation eggs and toast is now planned for Tuesday morning. Ironically that was the date I had been given originally for my stoma reversal. I wonder when it will be now. Not too long I hope. I have to say though it will be nice to have a few trouble free days. I only came on this time for what I thought was a few days and today it is 4 weeks exactly.
On a lighter note some of you may have seen me tweeting about the fact that this month is Crohns and Colitis month. Next week is World IBD Day. Quite how I don't know but I got asked to go to Brussels with Justine on monday to address the European Parliament on IBD day. Sadly I am here although I would have loved to be there but they are currently trying to set up a skype link so that I can make my speech from hospital. Feel very chuffed to have even been asked.
So that is all for today. Hope you like the view from the other side of the NHS. Having said all of this I wouldn't swap my transplant team for anyone.
Oh and as for the eye well there is a little scarring at the back of the eye but that will settle and hopefully these permanent headaches will go in a few days.
Crikey its 6.15pm and still no transport. I had better go and thumb a lift.
X
Michael Seres
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