It has been a bit of a strange few days in my bowel transplant world. Physically not much has changed, I am still managing to be sick after eating and frustratingly my stoma output hasn't yet settled back down to the levels before my meds were changed but all of that is not why things have felt a bit out of kilter.
For some reason my whole transplant experience seems to have hit me emotionally over the last few days. Up until this point I guess that I haven't really sat back and thought about things in to much detail. Yes it dominates much of my life still but I guess I have just been rolling along with the ups and downs. Any how I am not ashamed to say that this week my emotions seem to have been all over the place. I found myself thinking about how huge this whole experience has been; about being in theatre for 10 hours and really about how I ended up as a bowel transplant patient.
Little things would trigger off the emotions. A tv progamme, a song on the radio (am very in to Adele and Bruno Mars at the moment), a comment from the kids and I felt myself welling up and constantly thinking back to hospital. The thing is I actually don't remember much of the first week post op anyway so I am trying to work out what it is that I am getting so emotional over. I think that I can't quite get my head around the fact that I actually am a transplant patient now. I am not even sure how to articulate properly what it is that triggered these thoughts off. In truth I am fine and progressing pretty well but for a few days I was re-living in my head everything that I could remember whilst I was in hospital. Am not sure why or even where this all came from.
So there you have it, my strange few days. I presume this is just something that I will get through and then continue on as normal, it has never happened before so it has been very weird trying figure out why this time. I guess that I will speak to my team about this, they seem to figure most things out. In the meantime my football team QPR won today so things can't be that bad...
Take care
Mx
Saturday, 31 March 2012
Wednesday, 28 March 2012
8.37pm
I ended up back in bowel transplant hq on Monday night. After a brief text exchange with my surgeon he took the decision that I should come back in as I was at risk of dehydration. We get a few days sun and instead of catching the rays outside I spend it with my second family on a ward. As it transpired after pushing through fluids at a very quick rate my creatinine levels (kidney function levels)were actually pretty good.
The next day I had another scope and biopsy but this time they put the camera further down in order to take a biopsy from a different part of the new transplanted bowel. My previous biopsy had come back showing signs of inflammation in the new bowel. The most likely cause of it would probably be my bacterial issues but it can also be due to very mild rejection issues. This time with the new biopsy my surgeon was going to try and evaluate the results by looking at the bigger picture. I'm probably not articulating that very well but basically he doesn't by the rejection comments but does accept the bacterial problems as I still seem to have the classic symptoms. The view is that sometimes the labs look at these things in a totally one dimensional way. They have to and that is their job but occasionally it has to be done in conjunction with everything else. By that I mean, the transplant surgeon knows what the new bowel looked like after transplant; he also does my scopes so he can see the condition of the new bowel and those two markers do not always tally with the lab results. Unfortunately with this form of transplant it is not always clear cut. You can have a case of rejection without having any other symptoms. It is really why they have to watch you like a hawk and that is where I am so very lucky to have the team that I have.
I managed to escape the clutches of my ward by Tuesday afternoon on the proviso that depending on what this biopsy shows then I may need to be back on Friday.
We also decided that we will now go ahead with the balloon procedure in the stomach. Forgive me for being a little vague on it at the moment but I am not exactly sure what will happen. Apparently it is a pretty new thing to do and will be done by the upper GI consultant obviously under the careful watch of my transplant surgeon. I am feeling pretty optimistic that it will work. I have been warned that it may not work first time but they can do it again. What happens if it doesn't well there is the potential for having a gastric pacemaker inserted but let's not get ahead of ourselves. I am staying positive about the balloon dilatation.
That really wraps up what has been happening to me at the moment. Although I am back on my loperimide and other meds the stoma output has not yet settled. At its max I had about 2 litres of output and at the moment it has settled at around 1800ml but it needs to go down further still.
One final thing I did want to mention. I feel incredibly lucky that I am able to communicate with my surgeon and the transplant team via text and email. It makes like so much easier and saves them time and means that when I see them they already have all the information and have formulated a plan of action. If I am not sure of something then I can email a photo mobile to mobile or via email and I update my dietitian via email every few days. Obviously this cannot happen in some instances but I just wondered if anyone else does the same? In this age of technology, what a saving this could be for the NHS and health care in general. Political speech over.
Will be in touch again soon.
x
The next day I had another scope and biopsy but this time they put the camera further down in order to take a biopsy from a different part of the new transplanted bowel. My previous biopsy had come back showing signs of inflammation in the new bowel. The most likely cause of it would probably be my bacterial issues but it can also be due to very mild rejection issues. This time with the new biopsy my surgeon was going to try and evaluate the results by looking at the bigger picture. I'm probably not articulating that very well but basically he doesn't by the rejection comments but does accept the bacterial problems as I still seem to have the classic symptoms. The view is that sometimes the labs look at these things in a totally one dimensional way. They have to and that is their job but occasionally it has to be done in conjunction with everything else. By that I mean, the transplant surgeon knows what the new bowel looked like after transplant; he also does my scopes so he can see the condition of the new bowel and those two markers do not always tally with the lab results. Unfortunately with this form of transplant it is not always clear cut. You can have a case of rejection without having any other symptoms. It is really why they have to watch you like a hawk and that is where I am so very lucky to have the team that I have.
I managed to escape the clutches of my ward by Tuesday afternoon on the proviso that depending on what this biopsy shows then I may need to be back on Friday.
We also decided that we will now go ahead with the balloon procedure in the stomach. Forgive me for being a little vague on it at the moment but I am not exactly sure what will happen. Apparently it is a pretty new thing to do and will be done by the upper GI consultant obviously under the careful watch of my transplant surgeon. I am feeling pretty optimistic that it will work. I have been warned that it may not work first time but they can do it again. What happens if it doesn't well there is the potential for having a gastric pacemaker inserted but let's not get ahead of ourselves. I am staying positive about the balloon dilatation.
That really wraps up what has been happening to me at the moment. Although I am back on my loperimide and other meds the stoma output has not yet settled. At its max I had about 2 litres of output and at the moment it has settled at around 1800ml but it needs to go down further still.
One final thing I did want to mention. I feel incredibly lucky that I am able to communicate with my surgeon and the transplant team via text and email. It makes like so much easier and saves them time and means that when I see them they already have all the information and have formulated a plan of action. If I am not sure of something then I can email a photo mobile to mobile or via email and I update my dietitian via email every few days. Obviously this cannot happen in some instances but I just wondered if anyone else does the same? In this age of technology, what a saving this could be for the NHS and health care in general. Political speech over.
Will be in touch again soon.
x
Saturday, 24 March 2012
5.04pm
It has been a few days since I last updated you from bowel transplant HQ. I was back at Oxford yesterday for a further scope and biopsy. I have realised that I often says these words and some of you may not realise what that actually involves. Well a scope is basically a camera that goes in through the opening in my stoma and down about 10cm in to the new bowel. They look at the villae in the bowel and in layman terms, in other words my language, if the villae look all separated and almost individual then it means they are healthy. As far as the biopsy is concerned a further lead it pushed through down the side of the camera and you can see it in the bowel. They then grab and pull a tiny bit of the bowel out which is then put on a little glass slide and sent off for testing. It is actually amazing that the most minute piece of bowel can so far been able to say that I had mild rejection, that I have a bacterial problem and most important that it is healthy. Apologies if this already known to so many of you but some people have asked me not to assume everyone knows exactly what I am talking about.
Prior to the scope a series of bloods are always taken and from those they can check that all the appropriate levels are ok and whether my anti rejection dug levels are ok.
That was a brief summary of the two main things that get done pretty much every time I go. However in the build up to this visit our main concern had been my stomach and the fact that it wasn't working so well. I had the barium swallow which had shown a problem and had been texting my surgeon back and forth about our worries. I felt that for both Justine and my sake we needed a plan of action. There I was with this new transplanted bowel but I couldn't get enough food or drink down to it. I guess it was kind of like having this amazing new Aston Martin in the garage but you can't work out how to open to put the petrol in. Actually maybe that was a bit of a random analogy but you get my meaning.
Throughout my whole transplant journey I tried to be very honest and open about each step of the way. Before this visit it felt that I was entering perhaps the hardest mental challenge of the whole process and I know that Justine felt the same way. Although generally everything has kept going in the right direction when you live through it you don't notice any dramatic changes on a daily basis. It becomes very challenging mentally, very tough to keep positive, keep the spirits up and just focus on the big picture. I found that I was beginning to fall in to a rut. I ended up getting up at the same time most days, taking the dog out at similar times, sitting in the same chair and basically becoming a bit stale. That may sound odd when you are recovering from something so major but truthfully these mental battles are the hardest to overcome. It also gets harder for the family. In a way watching you recover from ten hours of surgery and go through everything you do in hospital is almost something you expect to happen. However when you start to get better but are not yet well enough to resume normal life it is very tough. Inevitable arguments occur, frustrations come out and some of the time you lose a bit of your perspective on life.
For me, as Justine reminded me, I have had Crohn's since the age of 12. Yesterday I reached the very young age of 43 and of course it was only right and proper to celebrate with my nearest and dearest, the transplant team at Oxford. Since the age of 12 I had been used to stays in hospital, recovering and getting back to normal, then hospital again and so it went on but this latest episode has effectively been 2 years and 1 month of constant medical stuff with no "normal" time in the middle. That is a long period for any family family to cope with. Believe me I know there are plenty of people who have it far worse than me so I am not complaining, I guess what I am simply trying to articulate is that is becomes tough mentally as well a physically.
So bringing all of that back to my stomach, the fact that it was causing us such concern was simply a real pressure cooker of emotions building up. I have to say that it felt like my surgeon and the transplant team knew this and when we eventually arrived on the ward we actually didn't have to say a word he had a plan for everything. His feeling was that my stomach issues had actually probably been around for a very long time. Basically the muscles at the bottom of the stomach where it empties in to the intestine had become increasingly thick. So if I put anything of any volume down it can't really go down anywhere so I just bring it up. At the time of my transplant my intestine was so matted down and blocked that it had failed and was never going to work again so that even if occasionally the stomach did work and let things through they couldn't go anywhere so I was just sick continually.
The plan to correct this now makes complete sense. We are reducing quickly all the things that slow down the gut such as loperimide so see if that has any effect at all. Assuming it doesn't then there is a relatively new procedure whereby a balloon can be put down in to the end part of the stomach and the muscles thinned out so far that effectively they can fall back on themselves. This should make an immediate difference. It is a procedure that may need to be done a few more times in the future but we went away very happy to have a plan in place. I think that is all you need. Being a patient isn't easy and you constantly need to feel that there is a goal to aim for or a plan of action in place. For me that is what keeps me going and I think for my family to know that there are solutions makes life a great deal easier.
So that was plan one. The next plan is an earlier stoma reversal than I had thought. This is simply because I cannot absorb enough of my fluid and I need the colon to help me. I only have half my colon left so it won't be a completely perfect solution but it will at least help. In the meantime it is all about stopping me getting dehydrated but injecting more fluids through my tube in to the bowel and hoping I can avoid going back on the drip.
Apologies if today has been a bit of a long one but there was loads to catch up on. Hope I didn't bore you too much.
Catch up again very soon
x
Prior to the scope a series of bloods are always taken and from those they can check that all the appropriate levels are ok and whether my anti rejection dug levels are ok.
That was a brief summary of the two main things that get done pretty much every time I go. However in the build up to this visit our main concern had been my stomach and the fact that it wasn't working so well. I had the barium swallow which had shown a problem and had been texting my surgeon back and forth about our worries. I felt that for both Justine and my sake we needed a plan of action. There I was with this new transplanted bowel but I couldn't get enough food or drink down to it. I guess it was kind of like having this amazing new Aston Martin in the garage but you can't work out how to open to put the petrol in. Actually maybe that was a bit of a random analogy but you get my meaning.
Throughout my whole transplant journey I tried to be very honest and open about each step of the way. Before this visit it felt that I was entering perhaps the hardest mental challenge of the whole process and I know that Justine felt the same way. Although generally everything has kept going in the right direction when you live through it you don't notice any dramatic changes on a daily basis. It becomes very challenging mentally, very tough to keep positive, keep the spirits up and just focus on the big picture. I found that I was beginning to fall in to a rut. I ended up getting up at the same time most days, taking the dog out at similar times, sitting in the same chair and basically becoming a bit stale. That may sound odd when you are recovering from something so major but truthfully these mental battles are the hardest to overcome. It also gets harder for the family. In a way watching you recover from ten hours of surgery and go through everything you do in hospital is almost something you expect to happen. However when you start to get better but are not yet well enough to resume normal life it is very tough. Inevitable arguments occur, frustrations come out and some of the time you lose a bit of your perspective on life.
For me, as Justine reminded me, I have had Crohn's since the age of 12. Yesterday I reached the very young age of 43 and of course it was only right and proper to celebrate with my nearest and dearest, the transplant team at Oxford. Since the age of 12 I had been used to stays in hospital, recovering and getting back to normal, then hospital again and so it went on but this latest episode has effectively been 2 years and 1 month of constant medical stuff with no "normal" time in the middle. That is a long period for any family family to cope with. Believe me I know there are plenty of people who have it far worse than me so I am not complaining, I guess what I am simply trying to articulate is that is becomes tough mentally as well a physically.
So bringing all of that back to my stomach, the fact that it was causing us such concern was simply a real pressure cooker of emotions building up. I have to say that it felt like my surgeon and the transplant team knew this and when we eventually arrived on the ward we actually didn't have to say a word he had a plan for everything. His feeling was that my stomach issues had actually probably been around for a very long time. Basically the muscles at the bottom of the stomach where it empties in to the intestine had become increasingly thick. So if I put anything of any volume down it can't really go down anywhere so I just bring it up. At the time of my transplant my intestine was so matted down and blocked that it had failed and was never going to work again so that even if occasionally the stomach did work and let things through they couldn't go anywhere so I was just sick continually.
The plan to correct this now makes complete sense. We are reducing quickly all the things that slow down the gut such as loperimide so see if that has any effect at all. Assuming it doesn't then there is a relatively new procedure whereby a balloon can be put down in to the end part of the stomach and the muscles thinned out so far that effectively they can fall back on themselves. This should make an immediate difference. It is a procedure that may need to be done a few more times in the future but we went away very happy to have a plan in place. I think that is all you need. Being a patient isn't easy and you constantly need to feel that there is a goal to aim for or a plan of action in place. For me that is what keeps me going and I think for my family to know that there are solutions makes life a great deal easier.
So that was plan one. The next plan is an earlier stoma reversal than I had thought. This is simply because I cannot absorb enough of my fluid and I need the colon to help me. I only have half my colon left so it won't be a completely perfect solution but it will at least help. In the meantime it is all about stopping me getting dehydrated but injecting more fluids through my tube in to the bowel and hoping I can avoid going back on the drip.
Apologies if today has been a bit of a long one but there was loads to catch up on. Hope I didn't bore you too much.
Catch up again very soon
x
Tuesday, 20 March 2012
8.20pm
In all honesty I am somewhat frustrated at the moment. Let's not forget that in the grand scheme my bowel transplant is going well and the new transplanted bowel is making good progress. That still hasn't prevented my frustration from rearing its ugly head. Why you may ask well it is the constant grind of being sick daily and the yuk feeling that comes with it. I guess that I can now say I know what continual morning sickness is like. Ok maybe I don't but you get the picture.
I am taking all the meds at the right time and doing all that is being asked of me but I keep wanting a little more progress. Then reality sets in and I talk to the team at Oxford and they keep reminding me that it is early days. Yes I know and I am probably repeating myself endlessly but when you are at home most of the time or not yet able to do everything that you would like frustration rears its head all too often.
I read that when recovering from any surgery and particularly my kind of transplant that exercise continues to be very important. I don't think that my dog has been for so many walks in all his life. When it comes to his third walk in the day he does sometimes look at me from his basket and it seems he is saying oh for goodness sake its flipping cold out there and I'm comfy in my bed. Actually he is more like me than you might think as once he gets off his backside he can't wait to get going. It may take a bit to get me moving but once I do hey there is no stopping me!! When I look back on all of this though I do realise how things have changed. For my first ten or so ops you were told to stay in bed and not to move until the bowel starts on its own accord. I could be in bed for two or three weeks before I started walking around. Now they get you up the next day and I am out exercising every day.
This bacterial problem also seems to be taking a while to go away. I have been told though that it might now take a few months to sort out so I really need a bit more patience. Probably need more than I actually have at the moment. Am learning to try and chill out a bit more about it all just some days it does annoy me.
Hopefully I have managed to build up enough distractions in the day to keep me going. Between trying to grow this blog, learn more about social media and build the makings of a business. Doing all of this is in itself huge progress. It stimulates the mind and ensures that bowel transplant is not the only language I speak during a day. It is amazing how much you can learn even with a small brain like mine. I do think in fact I know that my family believe I am a little obsessed but everything I read seems to be based around learning and doing things on line so why not give it a go. Remember I am starting from a very low base.
Ok finally before I go I must share a little bit of good news. I have now received my official confirmation that on 8th July I will be an Olympic Torch Bearer. I am an incredibly lucky man to have been nominated and selected and don't deserve it. However I am not going to turn it down. I am simply the front man for all you guys. Family, friends, the team at Oxford and of course fellow patients. This one is for all of you!
Till the next time
x
I am taking all the meds at the right time and doing all that is being asked of me but I keep wanting a little more progress. Then reality sets in and I talk to the team at Oxford and they keep reminding me that it is early days. Yes I know and I am probably repeating myself endlessly but when you are at home most of the time or not yet able to do everything that you would like frustration rears its head all too often.
I read that when recovering from any surgery and particularly my kind of transplant that exercise continues to be very important. I don't think that my dog has been for so many walks in all his life. When it comes to his third walk in the day he does sometimes look at me from his basket and it seems he is saying oh for goodness sake its flipping cold out there and I'm comfy in my bed. Actually he is more like me than you might think as once he gets off his backside he can't wait to get going. It may take a bit to get me moving but once I do hey there is no stopping me!! When I look back on all of this though I do realise how things have changed. For my first ten or so ops you were told to stay in bed and not to move until the bowel starts on its own accord. I could be in bed for two or three weeks before I started walking around. Now they get you up the next day and I am out exercising every day.
This bacterial problem also seems to be taking a while to go away. I have been told though that it might now take a few months to sort out so I really need a bit more patience. Probably need more than I actually have at the moment. Am learning to try and chill out a bit more about it all just some days it does annoy me.
Hopefully I have managed to build up enough distractions in the day to keep me going. Between trying to grow this blog, learn more about social media and build the makings of a business. Doing all of this is in itself huge progress. It stimulates the mind and ensures that bowel transplant is not the only language I speak during a day. It is amazing how much you can learn even with a small brain like mine. I do think in fact I know that my family believe I am a little obsessed but everything I read seems to be based around learning and doing things on line so why not give it a go. Remember I am starting from a very low base.
Ok finally before I go I must share a little bit of good news. I have now received my official confirmation that on 8th July I will be an Olympic Torch Bearer. I am an incredibly lucky man to have been nominated and selected and don't deserve it. However I am not going to turn it down. I am simply the front man for all you guys. Family, friends, the team at Oxford and of course fellow patients. This one is for all of you!
Till the next time
x
Saturday, 17 March 2012
8.02pm
I thought that by leaving the blog alone for a day or two I might have more of an update for you from my bowel transplant world. Unfortunately the truth is that things haven't really moved on. Since the barium I would say that my stoma output has increased a little. Certainly the timings have changed and now rather than having to wait a few hours before any sort of output. Things seem to progress a little quicker and stoma output now starts around midday and continues at various intervals throughout the day. Not particularly interesting I know but hey it is still a change.
The sickness which really started about 3 months post transplant still remains and my daily look at the bottom of the toilet bowl has become the norm. I have to say it will be lovely when this sickness finally stops. It just gets very tiresome. Oh and why every time I am sick does my nose run and the eyes stream. Never really understood that one.
The stomach motility issue has occupied my thoughts quite a bit over the last few days. Prior to my bowel transplant there was a lot of talk as to whether my stomach needed transplanting as well. In the end an opinion was sort from one of the leading professors who felt that the stomach would sort itself out when there was a working bowel. Now I have to admit to plenty of thoughts as to whether this was the right decision. I know that hindsight is a wonderful thing and I have to believe that this problem will be sorted. It doesn't stop me thinking about it though.
Ok that is the round up for now. I am taking my probiotics as instructed and I am very grateful for various suggestions from friends around the world. I have no doubt that the bacterial problems will eventually be sorted, but I have been told that it could be a long wait. I'm in this for the long haul. I mean you don't have a bowel transplant and assume everything will be fixed in 5 minutes.
Got to go, I think there is a fish finger in the oven for me to try.
Speak soon
xx
The sickness which really started about 3 months post transplant still remains and my daily look at the bottom of the toilet bowl has become the norm. I have to say it will be lovely when this sickness finally stops. It just gets very tiresome. Oh and why every time I am sick does my nose run and the eyes stream. Never really understood that one.
The stomach motility issue has occupied my thoughts quite a bit over the last few days. Prior to my bowel transplant there was a lot of talk as to whether my stomach needed transplanting as well. In the end an opinion was sort from one of the leading professors who felt that the stomach would sort itself out when there was a working bowel. Now I have to admit to plenty of thoughts as to whether this was the right decision. I know that hindsight is a wonderful thing and I have to believe that this problem will be sorted. It doesn't stop me thinking about it though.
Ok that is the round up for now. I am taking my probiotics as instructed and I am very grateful for various suggestions from friends around the world. I have no doubt that the bacterial problems will eventually be sorted, but I have been told that it could be a long wait. I'm in this for the long haul. I mean you don't have a bowel transplant and assume everything will be fixed in 5 minutes.
Got to go, I think there is a fish finger in the oven for me to try.
Speak soon
xx
Wednesday, 14 March 2012
8.26pm
Time for a quick update so apologies in advance for this being a bit short today.
So it was back off to Oxford again this morning. I get the easy part of this deal as I can sit back in the car while Justine drives. I always offer to drive but she always tells me that I am not up to it and then she drives. Well today I guess I understood why. You see I dozed off several times on the way up and for most of the journey on the way back. I don't know what it is but I just feel constantly knackered, my wife obviously knew that on a longish journey I tend to snooze.
Today was barium swallow day. I have had loads of these but I always hate them. The thought of swallowing a few cans of barium makes my stomach churn. Even writing about it now gives me the shivers. It was the first time I actually felt glad that I had a peg and pej tube down me. It took a few goes but eventually about 150ml of barium went down the peg and in to my stomach. I felt crap pretty quickly and wanted to be sick there and then but managed to keep it down for a while. Anyway I have seem my insides on a computer screen so many times that it is easy to work things out. The barium stayed in my stomach for absolutely ages and although there was no blockage it was clear that there was a motility issue. The doctor doing the tests was brilliant and extremely patient and I had to wait over half an hour before some barium eventually trickled past the stomach.
Once it got in to the duodenum and then in to the new bowel all was fine. The new bowel was working really well which is extremely positive. In a normal gut the barium would go down the stomach and through the bowel and out of the stoma inside an hour. For me it took 2 1/2 hours before some barium came out and about another hour before a bit more. To make matters a little worse I also managed to sick up some of the barium so it ended up all over the place.
Anyhow taking the real positives, the new bowel does not have any mechanical problems. What we are going to do about the stomach well who knows. I had this motility problem before my transplant when there was talk of transplanting the stomach as well. The team got a 2nd opinion from a leading professor and it was felt that it should right itself post transplant. I guess that might still be the case but who knows.
So that is my news for today. Totally zonked so I am going to doze in front of the telly whilst watching Masterchef.
Night all
x
So it was back off to Oxford again this morning. I get the easy part of this deal as I can sit back in the car while Justine drives. I always offer to drive but she always tells me that I am not up to it and then she drives. Well today I guess I understood why. You see I dozed off several times on the way up and for most of the journey on the way back. I don't know what it is but I just feel constantly knackered, my wife obviously knew that on a longish journey I tend to snooze.
Today was barium swallow day. I have had loads of these but I always hate them. The thought of swallowing a few cans of barium makes my stomach churn. Even writing about it now gives me the shivers. It was the first time I actually felt glad that I had a peg and pej tube down me. It took a few goes but eventually about 150ml of barium went down the peg and in to my stomach. I felt crap pretty quickly and wanted to be sick there and then but managed to keep it down for a while. Anyway I have seem my insides on a computer screen so many times that it is easy to work things out. The barium stayed in my stomach for absolutely ages and although there was no blockage it was clear that there was a motility issue. The doctor doing the tests was brilliant and extremely patient and I had to wait over half an hour before some barium eventually trickled past the stomach.
Once it got in to the duodenum and then in to the new bowel all was fine. The new bowel was working really well which is extremely positive. In a normal gut the barium would go down the stomach and through the bowel and out of the stoma inside an hour. For me it took 2 1/2 hours before some barium came out and about another hour before a bit more. To make matters a little worse I also managed to sick up some of the barium so it ended up all over the place.
Anyhow taking the real positives, the new bowel does not have any mechanical problems. What we are going to do about the stomach well who knows. I had this motility problem before my transplant when there was talk of transplanting the stomach as well. The team got a 2nd opinion from a leading professor and it was felt that it should right itself post transplant. I guess that might still be the case but who knows.
So that is my news for today. Totally zonked so I am going to doze in front of the telly whilst watching Masterchef.
Night all
x
Tuesday, 13 March 2012
8.10pm
What did today bring in my bowel transplant world? Yes you guessed it another trip back to the hospital and in to the care of my surgeon. My kidney function levels had shot up and I was told to come in, have another set of bloods and bring my overnight bag with me as there was a strong possibility of me staying in. They had been looking at my kidney levels to see if there was any pattern. Basically every two weeks I would get dehydrated and my cratinine levels would shoot up. Anything over a certain mark and it means that I need intravenous fluids and this seemed to happen a few times. I would then take in fluids my levels would drop and then a couple of weeks later they would climb again.
So after one phlebotomist had kindly declined to take my bloods as my veins looked dodgy. The doctor at clinic was called in to do the deed. Four attempts later and blood was drawn it was then another wait to see what the kidney function was doing today.
After bloods we had a good chat with my surgeon. As usual he had been reviewing things very carefully. It seems that I am not absorbing my fluids very well and that this has now been going on for a while. With the ileostomy it appears that the fluid has basically got used to coming straight out of the stoma, however without the stoma the fluids would get absorbed in the colon and the rest would come out in the usual way. One potential solution to my problem is to reverse the stoma and reconnect to the colon. Whilst this is potentially great news it was explained that this would still be much earlier than it should be. Nothing could be done without several clear scopes. So I will now undergo a scope every two weeks until May and if I manage to have six clear scopes then a reversal could be a possible option.
In the meantime I have to carry on with my treatment for the bacterial overgrowth and candida problems. The team still believe that this will settle over the next couple of months in the meantime it is a question of just keep on going. It does get very tiresome constantly being sick, having sudden output rushes but hopefully this will sort itself out sooner rather than later.
So that is just about all the news from today. Tomorrow I am back to Oxford for a barium swallow. They just want to rule out any mechanical blockage. General feeling is that it should be ok but it needs to be checked. The only saving grace with this is that they can put the barium down my pej. The thought of actually having to drink it gives me the shakes. I think I would chuck it up before it even got to hit my stomach. I can almost taste it now even as I write this. Yuk!!
Right it is time to go as I need to watch telly, make sure that the boys actually have a bath and then take my meds. See I'm a busy fella, can't sit here talking all day.
Bye
x
So after one phlebotomist had kindly declined to take my bloods as my veins looked dodgy. The doctor at clinic was called in to do the deed. Four attempts later and blood was drawn it was then another wait to see what the kidney function was doing today.
After bloods we had a good chat with my surgeon. As usual he had been reviewing things very carefully. It seems that I am not absorbing my fluids very well and that this has now been going on for a while. With the ileostomy it appears that the fluid has basically got used to coming straight out of the stoma, however without the stoma the fluids would get absorbed in the colon and the rest would come out in the usual way. One potential solution to my problem is to reverse the stoma and reconnect to the colon. Whilst this is potentially great news it was explained that this would still be much earlier than it should be. Nothing could be done without several clear scopes. So I will now undergo a scope every two weeks until May and if I manage to have six clear scopes then a reversal could be a possible option.
In the meantime I have to carry on with my treatment for the bacterial overgrowth and candida problems. The team still believe that this will settle over the next couple of months in the meantime it is a question of just keep on going. It does get very tiresome constantly being sick, having sudden output rushes but hopefully this will sort itself out sooner rather than later.
So that is just about all the news from today. Tomorrow I am back to Oxford for a barium swallow. They just want to rule out any mechanical blockage. General feeling is that it should be ok but it needs to be checked. The only saving grace with this is that they can put the barium down my pej. The thought of actually having to drink it gives me the shakes. I think I would chuck it up before it even got to hit my stomach. I can almost taste it now even as I write this. Yuk!!
Right it is time to go as I need to watch telly, make sure that the boys actually have a bath and then take my meds. See I'm a busy fella, can't sit here talking all day.
Bye
x
Sunday, 11 March 2012
7.24pm
What can I say - no changes over the last couple of days which I guess shows things aren't getting worse. Got to stay positive.
Rather than repeat the same old bowel transplant recovery stories I thought that I would use my blog today to ask for some answers to situations that I have found myself in with either my stoma or as part of my transplant recovery. I know that quite a few people who read my blog have had their own experiences and therefore might have a few solutions. Even if you haven't then some times fresh eyes can also help with something that is so obvious to others but when it stares you in the face on a daily basis you can easily overlook it. So here goes.
1. I am sick of constantly wearing trackie bottoms. However given the position of my stoma if I wore jeans or trousers especially with a belt then it would cut right across the stoma and hurt. Any suggestions? I guess braces maybe but any other thoughts?
2. I always have my stoma bag hanging outside my trousers and don't tuck it inside. If I did then the waist band would probably sit just below the site of the stoma and prevent the output from dropping in to the stoma bag. Is this the same for everyone or am I missing a trick.
3. Although I am definitely trying to do more exercise I feel constantly shattered. Any ideas other than iron tablets to increase my energy.
4. Has anyone with a stoma ever successfully drunk soup? It always seems to come out again very quickly and my dietitian said that she had heard of quite a few cases like this so I stay off of soup.
5. Most days I crave salty things, whether it be salty crackers or even a few crisps. I do use dyralite in my fluids so I wondered if there were any other suggestions?
6. At the moment I seem to constantly have that awful sicky taste in my mouth and therefore always suck mints. Any other suggestions?
7. Has anyone experienced their hair colour changing. Mine now seems to have brown flecks in it? Is this due to some form of deficiency?
8. When it is cold out my joints continually ache like crazy. I know that is quite a common complaint but does anyone take anything for this?
I think those are my main questions for now. Feel free to suggest any possible solutions.
Hopefully there will be a bit of progress to report on tomorrow but for now it's a wrap.
Bye
x
Rather than repeat the same old bowel transplant recovery stories I thought that I would use my blog today to ask for some answers to situations that I have found myself in with either my stoma or as part of my transplant recovery. I know that quite a few people who read my blog have had their own experiences and therefore might have a few solutions. Even if you haven't then some times fresh eyes can also help with something that is so obvious to others but when it stares you in the face on a daily basis you can easily overlook it. So here goes.
1. I am sick of constantly wearing trackie bottoms. However given the position of my stoma if I wore jeans or trousers especially with a belt then it would cut right across the stoma and hurt. Any suggestions? I guess braces maybe but any other thoughts?
2. I always have my stoma bag hanging outside my trousers and don't tuck it inside. If I did then the waist band would probably sit just below the site of the stoma and prevent the output from dropping in to the stoma bag. Is this the same for everyone or am I missing a trick.
3. Although I am definitely trying to do more exercise I feel constantly shattered. Any ideas other than iron tablets to increase my energy.
4. Has anyone with a stoma ever successfully drunk soup? It always seems to come out again very quickly and my dietitian said that she had heard of quite a few cases like this so I stay off of soup.
5. Most days I crave salty things, whether it be salty crackers or even a few crisps. I do use dyralite in my fluids so I wondered if there were any other suggestions?
6. At the moment I seem to constantly have that awful sicky taste in my mouth and therefore always suck mints. Any other suggestions?
7. Has anyone experienced their hair colour changing. Mine now seems to have brown flecks in it? Is this due to some form of deficiency?
8. When it is cold out my joints continually ache like crazy. I know that is quite a common complaint but does anyone take anything for this?
I think those are my main questions for now. Feel free to suggest any possible solutions.
Hopefully there will be a bit of progress to report on tomorrow but for now it's a wrap.
Bye
x
Friday, 9 March 2012
5.29pm
My bowel transplant recovery somehow seems to have lost a bit of momentum this week. I know that you probably think that I am absolutely mad even saying this. It just feels a little like I am in a phase of my transplant recovery when everything is ticking along but not necessarily marching along at great pace. My new probiotic medicine will take time to make a big difference so it is time for patience. Trouble is that I have never been that good at being patient.
I have tried to get out of transplant mode the last couple of days and focus a bit more of some work. I am actually getting quite excited about a few of the ideas that I am working through. Sorry that I cannot say much more than that but at the moment it is all development work, assessing the markets and seeing if my ideas do have legs to stand on. Of course you will hear about things first hear but until then it is at last making my brain clamber out of 1st gear and even dare to get towards 3rd gear. Can't imagine what it would be like if it ever hits 5th gear. Come to think of it I am not actually sure that it has ever hit 5th gear.
My eldest son Aaron has been designing a great new logo for my work, my wife has been helping to make up some samples and the youngest two, well they have helped by watching telly in the other room. In addition to work I have to say a massive thank you to all the people that I have managed to connect up with through this blog. You all continue to cajole me along and help pick me up when I'm a little down. I never dreamt that this blog would ever grow to the extent that it has and every day I am coming across new friends who have either suffered with Crohns, are contemplating bowel transplantation, have family members who are patients or who simply want to engage in dialogue and learn a little more or give me the benefit of their advice. One of the best things to have come out of my transplant has been the ability to come in to contact with so many people. I just hope that my experiences really can help others.
At the moment one of the biggest pains comes with the terrible bloating that seems to get worse towards the end of the day. A few days ago Justine thought it was twins, now it could be quads and it is always so uncomfortable. I wonder if a pin would do the trick and pop it?
Talking of uncomfortable I do have one more moan. why is it that all the seat belts in cars seem to cut right across my tummy and press against my stoma. I seem to spend most of the time in the car holding the waist strap so that it doesn't squash me. If there is anyone out there reading this who has similar problems, any tips welcome please.
Right it is time for me to disappear. My sister and kids are coming over for dinner and I need to get off my backside and actually do something.
Will catch up soon.
x
I have tried to get out of transplant mode the last couple of days and focus a bit more of some work. I am actually getting quite excited about a few of the ideas that I am working through. Sorry that I cannot say much more than that but at the moment it is all development work, assessing the markets and seeing if my ideas do have legs to stand on. Of course you will hear about things first hear but until then it is at last making my brain clamber out of 1st gear and even dare to get towards 3rd gear. Can't imagine what it would be like if it ever hits 5th gear. Come to think of it I am not actually sure that it has ever hit 5th gear.
My eldest son Aaron has been designing a great new logo for my work, my wife has been helping to make up some samples and the youngest two, well they have helped by watching telly in the other room. In addition to work I have to say a massive thank you to all the people that I have managed to connect up with through this blog. You all continue to cajole me along and help pick me up when I'm a little down. I never dreamt that this blog would ever grow to the extent that it has and every day I am coming across new friends who have either suffered with Crohns, are contemplating bowel transplantation, have family members who are patients or who simply want to engage in dialogue and learn a little more or give me the benefit of their advice. One of the best things to have come out of my transplant has been the ability to come in to contact with so many people. I just hope that my experiences really can help others.
At the moment one of the biggest pains comes with the terrible bloating that seems to get worse towards the end of the day. A few days ago Justine thought it was twins, now it could be quads and it is always so uncomfortable. I wonder if a pin would do the trick and pop it?
Talking of uncomfortable I do have one more moan. why is it that all the seat belts in cars seem to cut right across my tummy and press against my stoma. I seem to spend most of the time in the car holding the waist strap so that it doesn't squash me. If there is anyone out there reading this who has similar problems, any tips welcome please.
Right it is time for me to disappear. My sister and kids are coming over for dinner and I need to get off my backside and actually do something.
Will catch up soon.
x
Wednesday, 7 March 2012
7.19pm
Not much to report over the last day or so. I was back at Oxford today for a follow up after having been on various new meds for the last 10 days. As you will remember my post transplant complications have been put down to bacterial overgrowth and now candida (think that's how you spell it) spores in the gut which cause fungal problems. So ten days on and I am no better and Justine and I have definitely been a bit fed up with it all.
Back at clinic today I had the usual bloods taken, saw the transplant coordinator and met up with the dietitian. They were at pains to tell me that it really is early days and that things will settle just give it more time. It is hard to keep going in such situations when you are at home and don't feel that progress is being made. However I keep being reminded to look at the bigger picture and yes the bigger picture is bright and healthy. So back to today. I have been taken off the meds, or rather I have completed the course and they do not want me to carry on. Having gone through every symptom, gone through every detail of my daily routine and explained how I am feeling the dietitian feels even more certain that they are on the right path. We did discuss our worries about the motility of the stomach and the possibility of a narrowing or stricture was discussed. For the time being at any rate we will carry on and see if things settle. Having eliminated rejection issues with the new bowel I guess I should be pleased that it is nothing too serious.
With all of the output I am experiencing it has been very important to keep myself hydrated. I know that sounds ridiculously obvious but it is not always as easy as it sounds. Hydrating myself is via a combination of oral intake and injecting water directly in to the bowel via my pej. This water is now mixed with dyralite so that my salt intake can stay at the right levels. It is actually amazing how quickly you can feel yourself getting dry. For someone who does find it very hard to take anything orally it is very difficult to keep the levels up. At home I walk around with a water bottle by my side and if I leave a room without it then I am reminded to get back to the bottle quickly! I need to squirt between 1 litre and 1.5L down my tube each day but by the end of the day when I feel particularly sick and very bloated it gets hard to shove in the last few mils.
So the some total of this latest post is really keep going. Of course I will and of course things will eventually improve. It just isn't always so easy.
Right it is soon time to go and watch Masterchef. Yes something very odd about a person who doesn't really like food but enjoys watching the cookery programmes. Mind you I watch the weekly hospital dramas and you would think that I had enough of hospitals.
Bye bye
xx
Back at clinic today I had the usual bloods taken, saw the transplant coordinator and met up with the dietitian. They were at pains to tell me that it really is early days and that things will settle just give it more time. It is hard to keep going in such situations when you are at home and don't feel that progress is being made. However I keep being reminded to look at the bigger picture and yes the bigger picture is bright and healthy. So back to today. I have been taken off the meds, or rather I have completed the course and they do not want me to carry on. Having gone through every symptom, gone through every detail of my daily routine and explained how I am feeling the dietitian feels even more certain that they are on the right path. We did discuss our worries about the motility of the stomach and the possibility of a narrowing or stricture was discussed. For the time being at any rate we will carry on and see if things settle. Having eliminated rejection issues with the new bowel I guess I should be pleased that it is nothing too serious.
With all of the output I am experiencing it has been very important to keep myself hydrated. I know that sounds ridiculously obvious but it is not always as easy as it sounds. Hydrating myself is via a combination of oral intake and injecting water directly in to the bowel via my pej. This water is now mixed with dyralite so that my salt intake can stay at the right levels. It is actually amazing how quickly you can feel yourself getting dry. For someone who does find it very hard to take anything orally it is very difficult to keep the levels up. At home I walk around with a water bottle by my side and if I leave a room without it then I am reminded to get back to the bottle quickly! I need to squirt between 1 litre and 1.5L down my tube each day but by the end of the day when I feel particularly sick and very bloated it gets hard to shove in the last few mils.
So the some total of this latest post is really keep going. Of course I will and of course things will eventually improve. It just isn't always so easy.
Right it is soon time to go and watch Masterchef. Yes something very odd about a person who doesn't really like food but enjoys watching the cookery programmes. Mind you I watch the weekly hospital dramas and you would think that I had enough of hospitals.
Bye bye
xx
Monday, 5 March 2012
12.25pm
I know that it has been quite a while since I last posted a blog so apologies. I guess some might have switched off by now, hope not though. Last week I was back in hospital as part of my bowel transplant ups and downs. The bacteria overgrowth hadn't improved in fact it got a bit worse and I couldn't stop being sick. Wind forward about a week and the good news is that I am home. The bad news is that the new drugs haven't kicked in yet so there isn't much improvement. Still I am due back on Wednesday so either they will have kicked in by then or I guess a new plan of action will be started.
The main reason for not blogging though was that for the first time in a while I just had a fed up week. I was disappointed to be back in hospital although I totally understood that I needed to be. Yet as the week went on and I hadn't yet started to get better I just felt sorry for myself. I usually pride myself of being fairly upbeat but last week was more downbeat. You know when you get in to a strop it's not so easy to shake yourself out of it and everything seemed to go wrong. Actually it wasn't everything, I just blew things out of proportion it was things like trying to wash my hair with a picc line in one arm and a cannula attached to fluids in the other arm. I did manage to wash my hair then spent about 15 mins drying the bathroom floor. It looked like I had shampooed that as well. I went to the shops on my own to get a paper. It was only downstairs but when I got there I realised that I had left my wallet upstairs. Again no big deal it just annoyed me. So these little things went on and I would get increasingly frustrated with myself. Pathetic I know but that was the reason why I didn't blog for a few days.
You will be pleased to know that the dark clouds have lifted and I'm back to my usual self (actually that might be more annoying for Justine) and a new week so going to be positive.Yesterday I had a rest from the feed and today it is back on again. Actually my stoma output pattern has changed quite a bit. It used to be that within an hour of starting the feed output would start. Now it seems to not happen until 5 or 6 hours had passed. Even without the feed there was very little output in the morning but between say 6pm and 8pm there was about 700-800ml coming out. Hey who knows why. Sickness is also still a problem. I seem to wake up feeling a bit rough, have my "morning sickness" and then it usually takes a build up until towards the end of the day before bringing up most of what I have eaten that day. Oh and while we are on the subject of morning sickness if you saw my belly you would definitely think that I was pregnant, in fact it could be twins.........
So that sums up what has been happening of late. I won't leave it so long this time, unless you all tell me too. Will keep you posted with what happens during the week.
Till then...
x
The main reason for not blogging though was that for the first time in a while I just had a fed up week. I was disappointed to be back in hospital although I totally understood that I needed to be. Yet as the week went on and I hadn't yet started to get better I just felt sorry for myself. I usually pride myself of being fairly upbeat but last week was more downbeat. You know when you get in to a strop it's not so easy to shake yourself out of it and everything seemed to go wrong. Actually it wasn't everything, I just blew things out of proportion it was things like trying to wash my hair with a picc line in one arm and a cannula attached to fluids in the other arm. I did manage to wash my hair then spent about 15 mins drying the bathroom floor. It looked like I had shampooed that as well. I went to the shops on my own to get a paper. It was only downstairs but when I got there I realised that I had left my wallet upstairs. Again no big deal it just annoyed me. So these little things went on and I would get increasingly frustrated with myself. Pathetic I know but that was the reason why I didn't blog for a few days.
You will be pleased to know that the dark clouds have lifted and I'm back to my usual self (actually that might be more annoying for Justine) and a new week so going to be positive.Yesterday I had a rest from the feed and today it is back on again. Actually my stoma output pattern has changed quite a bit. It used to be that within an hour of starting the feed output would start. Now it seems to not happen until 5 or 6 hours had passed. Even without the feed there was very little output in the morning but between say 6pm and 8pm there was about 700-800ml coming out. Hey who knows why. Sickness is also still a problem. I seem to wake up feeling a bit rough, have my "morning sickness" and then it usually takes a build up until towards the end of the day before bringing up most of what I have eaten that day. Oh and while we are on the subject of morning sickness if you saw my belly you would definitely think that I was pregnant, in fact it could be twins.........
So that sums up what has been happening of late. I won't leave it so long this time, unless you all tell me too. Will keep you posted with what happens during the week.
Till then...
x
Friday, 2 March 2012
10.20am
Yes I am still in hospital. Having come in last Sunday afternoon I had hoped that things would settle a bit quicker than they have. On the positive side there are no rejection problems so once I do get sorted hopefully recovery will be quick.
Although there is evidence of bacterial and fungal issues we discussed again the motility issues of the stomach and intestine. As usual here there is a multi disciplinary meeting on Fridays so these issues get discussed and then a plan of action put in place. From my side it is good to know that there are continual discussions across the various teams as hopefully nothing then gets missed.
Away from the hospital bed I have visited most corners of hospital as I go on my regular walks. It was so lovely out yesterday that I listened to my wife (yes you heard it right I actually listened) and went out on to the roof terrace for a seat in the sun. I didn't quite put on my swim shorts and I didn't have to fight to put my towel down before others but it was lovely sitting outside in the sunshine and its only just March.
So I guess it is a bit more wait and see. I will hear back from the surgeon later today and will find out whether further tests are needed. My eldest son is 16 on Monday (yes I know, I really am that old) so we planned to celebrate over the weekend. I have asked for weekend leave to join in the fun and that should be granted. At least I will be back with the family for a couple of days anyway.
That's my update for now. When I hear back with more news I will keep you posted.
Meantime have a lovely weekend.
X
Michael Seres
Although there is evidence of bacterial and fungal issues we discussed again the motility issues of the stomach and intestine. As usual here there is a multi disciplinary meeting on Fridays so these issues get discussed and then a plan of action put in place. From my side it is good to know that there are continual discussions across the various teams as hopefully nothing then gets missed.
Away from the hospital bed I have visited most corners of hospital as I go on my regular walks. It was so lovely out yesterday that I listened to my wife (yes you heard it right I actually listened) and went out on to the roof terrace for a seat in the sun. I didn't quite put on my swim shorts and I didn't have to fight to put my towel down before others but it was lovely sitting outside in the sunshine and its only just March.
So I guess it is a bit more wait and see. I will hear back from the surgeon later today and will find out whether further tests are needed. My eldest son is 16 on Monday (yes I know, I really am that old) so we planned to celebrate over the weekend. I have asked for weekend leave to join in the fun and that should be granted. At least I will be back with the family for a couple of days anyway.
That's my update for now. When I hear back with more news I will keep you posted.
Meantime have a lovely weekend.
X
Michael Seres
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