# From Crohn's Disease to a bowel transplant how did I get there?



## michaelseres

I have had Crohn's for thirty years having been diagnosed at the age of 12. Back then it took 18 months to diagnose and to start with they thought that I was making things up as a way to avoid going to school. After over 20 different operations I found myself, two years ago, with intestinal failure. As is the norm I was put on TPN and told to go home and try and get on with things. With a wife and three kids you can't just get on with things when you are on TPN. Life became more and more difficult and I became more and more frustrated with things.

Eventually I went for a second opinion and met a fantastic doctor and team in New York. After a day of consultations he said to me that normally he would give me a menu of options but in this case there was only one - a bowel transplant. Coming from London, England my family and I started to think of how we would cope having to move to USA to have such surgery. We came home with our heads spinning.

After a bit of research we were directed to a team in Oxford, England who again concurred that I needed a transplant and after months of tests, meeting and consultations I became the 11th person to have a bowel transplant at Churchill Hospital, Oxford, United Kingdom.

I am currently nearly 4 months post op having gone through the hardest battle of my life. We decided to blog about our experience detailing the lead up to surgery, the surgery and time in hospital and what life is like now. Our blog became a kind of therapy but it was also a real time update as to what life is like going through a bowel transplant and the effect on the family. if you fancy a read please go to:

*http://beingapatient.blogspot.com*

my wife's posts are linked as she goes in to details of the 3 months I spent in hospital.

Although I still have a long way to go there is light at the end of the tunnel. I hope that my experiences can help others who are either going through this operation or contemplating this type of surgery. I very much look forward to hearing from anyone who may be interested in hooking up.


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## chrisnsteph1022

Wow, a transplant? Are you on meds to keep the Crohn's from coming back in the new bowel?


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## Lisa

Welcome to the forum and thank you for sharing your experiences!!!...I honestly had no idea that there were any bowel transplants being done!.....I remember my mother saying she would donate part of hers if/when it ever became available.


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## michaelseres

At the moment i am on high dosages of immunosuppresents and anti rejection drugs so they have said that the chances of crohns coming back while on these levels is extremely remote. When my levels reduce which will be in about a year then I may have to go back on Azathioprine. They have said that because I will be on the immunos and anti rejection for life the chances of crohns reappearing are greatly reduced. Obviously though they don't have data that is years old yet to completely prove that theory. So its still a bit of fingers crossed.


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## michaelseres

Hi there, thanks for responding. I first got to hear about it via the Mount Sinai Hospital in New York so if you need more details please just shout. In the UK you can only receive an organ from a deceased person as opposed to a living donor. I'm not sure if that is the same in the USA. I was on Remicade for a while but unfortunately it didn't help. Hope you are doing ok at the moment.


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## Kelly2

My child was also diagnosed with Crohns at the age of 12 (severe).  I just read your blog and found it very interesting.  I wanted to let you know how much you are helping people learn from you, by putting your story out there, and it is truly an inspiration to us.

When you have your PICC line taken out, is there any way they could insert some sort of port so that you can have painless injections?  Was just wondering.

Take care,

Kelly


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## michaelseres

Thanks so much for your very kind words. All I want to do is be able to help others. I clearly remember what it was like going in to your teenage years when suddenly diagnosed with a disease that no one wants to talk about. Please wish your son better and if he ever wants to get in touch to chat or ask anything he is so welcome.

Great idea re picc line, I will mention it next week when I go back.

You take care and tell your son never to give up - he's lucky to have you there as support.x


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## Angrybird

Hello and welcome to the forum :bigwave: I had no idea either that you could have a bowel transplant, I thought is was so clever on how they did my resection, shows what I know!  I am soo going to book some time this weekend to read the whole blog, I think it is just amazing. I used to work in a hospital liver transplant unit and some of the drugs they were using for the patients were the same they were giving me for treatment! I really hope therefore that after all you have been through and with the meds you are still going to be on that you will be able to get back to a really good place and for a long time too!  Please keep us updated here on how you are doing.


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## Terriernut

A big warm welcome to you!  I've read your blog, but I will read your wifes in a minute.

I would like you to post this in the stoma subforum as well here:
http://www.crohnsforum.com/forumdisplay.php?f=46

And dont forget, there we can talk about stomas and help you with that all the live long day.  (and if you're in hospital, that day can be pretty damn long)

Please feel free to give us the whole story, no judgements from us lot.  I am very happy you are here, and I'm very happy you are sharing your story!
:heart:


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## David

Wow!

I a so glad you joined!  PLEASE keep us updated here as I have no doubt that others will be interested.  I am going to link to this thread from a couple of our bowel transplant information threads.

Thank you for joining and I sincerely wish you nothing but the best


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## DustyKat

Hi Michael and :welcome: 

Wow, what a journey! I have just finished reading your blog and I would like to thank you for putting it all down, kudos to you and if you ever do write that book then put me down for a copy! 

I can tell by your writings that you certainly made the right decision to have the transplant on home soil. I can't imagine what it would done to you psychologically to have been away from your support system for so long. 

So I had been writing some questions down as I went along and some have already been answered, like the drugs and Crohn's and what research your fundraising money goes to.
If you don't mind I would like to ask a few other things...

1. At some point could you go into further detail as to how you reached this point of needing the transplant? So when you were first diagnosed and your journey from there. 

2. Was Stem Cell Transplant ever considered or were you past that point when it was a viable treatment option for Crohn's.

3. Diet:
- Do you think in time you will modify your diet at all or once the transplant settles will you eat whatever you want? 
- Do you think going to a low residue diet now will help? 
- Does the food coming out whole bother you (blockage aside)? If not, then in some ways I can't see the difference, nutritionally wise, to the food coming out undigested and the feed going through at warp speed. 
- Is something like psyllium or Questran a consideration given your circumstances? Perhaps they are contraindicated with an ileostomy. 
- On the days you are home all day why can't you do the feed during the day instead of at night? 

Dusty. xxx


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## DustyKat

Hi again Michael,

Just finished reading your wife's blog and whilst doing so was watching the news and saw that QPR lost to Wolves...sincere condolences BUT wow! congrats on getting to carry the olympic torch! anda:anda:anda: 

Although I have never experienced anything like what you both been through I felt I could relate to many of the feelings your wife was and is experiencing. I had a torrid few months last year with my son and I felt many of the same things. 

I so hope things settle for you soon. Good luck! 

Dusty. :hug:


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## Artificial

Hi Michael, welcome 

That's really interesting! I'm going to have a good read of the blog now x


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## DanHerefordshire

very impressive blog well detailed.. id also be intrested to know estimated recovery times and more about what the diet involves..


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## indianhart

Good idea writing a blog!  :thumleft: I read it and thought those pictures were awesome!!  You are going through a horrible time and you can use us on this forum to vent to because maybe we all haven't had a transplant although we certainly can relate to being in the hospital for lengths of time and feeling so alone and vunerable.  :shifty-t:  Positive thoughts are sent your way and please keep blogging and posting on your progress! :rosette2:


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## Cavatina

*Good News*

Great reading about this and good luck with your progress. I'm unable to have steroids for my Crohn's as I only have 6ft (around 2 metre) of bowel left and have been told I can't absorb medication. Therefore,I continue to have pain all over my body and they are giving me patches to try to control it. The patches have gradually become higher in strength and it's very scary for the future. I've arranged an appointment with my Consultant (March 12th) and will ask about my vitamin levels (as suggested by David) and also whether I would be a candidate for transplant. I've been told that next time they have to take any bowel away (after a blockage) I'll be on TPN permanently, so hopefully it won't happen and I'll carry on, but I must have help with the pain which is chronic and hard to cope with. I'll keep you posted folks. Any ideas or tips would be good. Thanks a lot.

Currently taking: Risedronate (for osteoporosis), Mebeverine, Lansorazole,Transtec 35mcg patches, Domperidone, Glucosamine, Cod Liver Oil, Multivitamin.


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## michaelseres

*From Crohns Disease to a bowel transplant how did I get there? - update*

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


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## Angrybird

Hello Michael and thanks for letting us know on how you are getting on.  I will keep my fingers crossed and will stay positive with you that the balloon does it's job.  I am really pleased that you have a great team on your side, it certainly helps when going through something like you are.

My best wishes to you and your family.

AB
xxxx


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## michaelseres

*From crohn's to a bowel transplant*

Thanks AB. So good to hear from you. How are you feeling at the moment? I assume that you had your surgery at Addenbrookes or am I wrong? How does the future look for you at the moment, I hope very positively? Will keep in touch a bit more now, sorry for my tardiness.


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## Spooky1

can i ask please, are you crohns or colitis there?  and good luck for a great recovery


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## michaelseres

started with crohns 30 years ago. After 20 ops had intestinal failure and expecting lifetime of tpn. eventually after tpn probs I had the transplant at Chuchill Hospital in Oxford. How are you doing? what is your background?


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## DustyKat

Hey Michael,

Thanks for the update here. I have been following you via email. Thank you so much for taking the time to write down all that happened to you, it certainly makes for interesting reading and is very much appreciated.  

Dusty. xxx


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## Spooky1

hi, yes, i was surprised that someone in britain had a transplant.   my god, i so hope it goes well for you.  would this be both small and large intestine?  i'm so nosey, aren't i?  well, i've had crohns since 12 years and am 50 this year, so i can identify.  i have a gastrostomy which i've had for 9 years and naso-gastric for a couple of years before that.  yesterday i read a link via this website that stated that enteral feeding wasn't beneficial for maintenance!!!  so now i'm really feeling silly.  i wonder if my gastro bloke ever reads that kind of article.  anyway, i'm on the old picolax today, its citrafleet actually.  so i'm really suffering.  

Guess what?  its an hour and a half to hospital and petrol stations have run out.   ahhhrrrr   i'm looking for someone to take me, stay with me for the duration of colonoscopy and bring me home again.  otherwise i'm a little stuffed there lol.
best wishes
Diane


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## michaelseres

DustyKat said:


> Hey Michael,
> 
> Thanks for the update here. I have been following you via email. Thank you so much for taking the time to write down all that happened to you, it certainly makes for interesting reading and is very much appreciated.
> 
> Dusty. xxx


Hi Dusty, thanks for the lovely words. How are you keeping these days? Please keep in touch would love to know how everything is going with you. Take care


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## michaelseres

Spooky1 said:


> hi, yes, i was surprised that someone in britain had a transplant.   my god, i so hope it goes well for you.  would this be both small and large intestine?  i'm so nosey, aren't i?  well, i've had crohns since 12 years and am 50 this year, so i can identify.  i have a gastrostomy which i've had for 9 years and naso-gastric for a couple of years before that.  yesterday i read a link via this website that stated that enteral feeding wasn't beneficial for maintenance!!!  so now i'm really feeling silly.  i wonder if my gastro bloke ever reads that kind of article.  anyway, i'm on the old picolax today, its citrafleet actually.  so i'm really suffering.
> 
> Guess what?  its an hour and a half to hospital and petrol stations have run out.   ahhhrrrr   i'm looking for someone to take me, stay with me for the duration of colonoscopy and bring me home again.  otherwise i'm a little stuffed there lol.
> best wishes
> Diane


Hi Diane, very happy for you to be as nosey as you want, ask away!!

I was the 11th person to have this transplant at Churchill Hospital in Oxford. The team there are amazing. It was incredibly daunting but I wanted a shot at a new lease of life.

I have also been on different types of feeds for a while. I had naso gastro for a while, then tpn but that started to cause me real liver problems. I had a peg fitted and then extended to a pej and at the moment I have an enteral feed every day. My team say that you can be on enteral feeding for a very long time without any major complications. I wouldn't believe every article, I think that the facts generally show that it is safe. It certainly keeps the bowel functioning and stops you losing too much weight so stop panicking!!

I'm sorry that you are really suffering. Has your doc ever looked at bacterial problems in you? I have had quite a few and sometimes that can come with enteral feeds but they are definitely controllable they just take a while.

You def shouldn't be going on your own for a colonoscopy. Do they give you any sedation with it? I always ask for it and that rules out driving for a while. Try and beg a friend to help!! let me know how you get on. Am anxious to hear. Lol xx


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## Spooky1

hi, michael,

11 so far.  thats great.  i so hope it resolves a few issues for you, but was it small intestine or large, or both?

i'm on and off loo at the mo.  i've kept the liquid feed off and am desperate for something to eat.  i'm sucking a boiled sweet at the moment.

i often have bacterial infections and get metronidazole for that, though i tolerate it less and less over the years.  i hope to have sedation tomorrow.

will you get to a phase when you can eat normally do you think, or do you, like me have stomach and duodenal ulcers?


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## Angrybird

Hi Michael, yes my op was at Addenbrooke's, felt really well for a few weeks after and then leading up to xmas I had a really bad flare up (one of my worst actually) went on the usual course of steroids and now I am back on the Azathioprine for a second try of this - seems to be doing well so far as I have been able to taper off the steroids :dance: As long as the the Aza doesn't give me neutropenia again then I should be good hopefully for a long time 

xx


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## michaelseres

*From crohn's to a bowel transplant*

AB, sorry about the flare up but when I was at my worst they also put me on Aza and I found that it really helped. I was on it probably for about 10 years and although I did have flare ups at times, I didn't have any side effects and by and large it worked well.

Hope that you have a good night's sleep!
M


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## michaelseres

Spooky1 said:


> hi, michael,
> 
> 11 so far.  thats great.  i so hope it resolves a few issues for you, but was it small intestine or large, or both?
> 
> i'm on and off loo at the mo.  i've kept the liquid feed off and am desperate for something to eat.  i'm sucking a boiled sweet at the moment.
> 
> i often have bacterial infections and get metronidazole for that, though i tolerate it less and less over the years.  i hope to have sedation tomorrow.
> 
> will you get to a phase when you can eat normally do you think, or do you, like me have stomach and duodenal ulcers?


Yes it was the small intestine. I have about 1/2 of my large intestine left and about 40% of my colon intact. I have a ileostomy so spend an awful lot of time emptying bags, it becomes a real pain!! My enteral feed is on for about 12/14 hrs a day at the moment and I am eating very little. However the end goal is to be able to eat fairly normally. I did have several ulcers but right now I have a stomach motility issue. It was 50/50 as to whether it was going to have to be transplanted as well but they didn't. I am due to have a balloon put through the end of the stomach to try and stretch the muscles and thin them out. If that doesn't work then there is talk of a gastric pacemaker.

Good luck for tomorrow, pls let me know how you get on.

Night night xx


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## DustyKat

michaelseres said:


> Hi Dusty, thanks for the lovely words. How are you keeping these days? Please keep in touch would love to know how everything is going with you. Take care


Hey Michael,

I don't have Crohn's, both of my children do.  BUT they are doing fab at present! They have both had ileocaecal resections, my daughter in 2006 and my son last year, and they have both been in remission since the ops. anda: 

Dusty. xxx


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## michaelseres

That is great to hear and long may they continue with good health.
xx


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## michaelseres

*From Crohns Disease to a bowel transplant how did I get there? 310312*

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


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## Angrybird

Hi Michael, with all that you have been through and continue to experience it is no wonder that things will eventually catch up with you. Do have a chat with your team as they do sound a great bunch, I would assume they would say that what you have been feeling these last few days is normal but it is nice to have this confirmed by a doc.

Sending lots of hugs :hug:

AB
xx


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## Spooky1

Well, i'm home now.  colonoscopy done!  it went like this:

Fentanyl 50mcg
Fentanyl 50mcg
midazolam 3mg
midazolam 2mg
midazolam 2mg

Paediatric scope used.  was bloody agonies i can tell you.
meds described as ineffective.  was awake the whole time and screaming out, omg, how embarrassing, but it hurt

result of scope:
Severe stricture in anamastosis with ulcerations and bleeding.  
they still pushed the scope right through and took a series of biopsies.
recommend general anaesthetics for future scopes as the meds do not put me to sleep.

the pics they print out along with the procedure look disgusting, but the narrowing with the blood and ulcerations reveal the extent of the issue.  the rest of the bowel looks normal, yay, something to be pleased with.  my crohns seems to run from mouth to terminal ileum (well that area) the joined bit from previous surgeries.

so, i'm utterly dehydrated from the citrafleet and feeling too poorly afterwards to focus on replenishing fluids.  today i'm gonna treat myself to fluids and a complete rest cos i'm just so exhausted.

nice to be home though.  i had stayed with sis and her family cos they're nearer the hospital and did the driving.

tis sunny out which is, of course, especially for us Brits, a great tonic.

hope all is going well with you, Michael.  perhaps one day i shall opt for the transplant!  i'm a little squeamish.

best wishes
Diane


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## handle

Hey,
It's so healthy and important to release emotions over big issues - and the best time is after it's over. Even if you don't really remember much, it seems the body has it's own memory of things....
Pretty awesome that you have a transplant! You're a legend.
take care.


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## michaelseres

Angrybird said:


> Hi Michael, with all that you have been through and continue to experience it is no wonder that things will eventually catch up with you. Do have a chat with your team as they do sound a great bunch, I would assume they would say that what you have been feeling these last few days is normal but it is nice to have this confirmed by a doc.
> 
> Sending lots of hugs :hug:
> 
> AB
> xx


Really appreciate your support. It is just lovely to know people who understand. Am definitely going to chat to the team.

Hugs back xx


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## michaelseres

handle said:


> Hey,
> It's so healthy and important to release emotions over big issues - and the best time is after it's over. Even if you don't really remember much, it seems the body has it's own memory of things....
> Pretty awesome that you have a transplant! You're a legend.
> take care.


you are incredibly kind and your support means a lot. You keep well please!!


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## David

Hi Michael,

I hope you don't mind but I merged all your bowel transplant threads into this original one.  I think it's important that everyone is able to see the linear progression here.  I know a lot of people will be VERY interested in this thread so please keep us updated.  And if there's anything we can do for you, just holler.


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## michaelseres

David said:


> Wow!
> 
> I a so glad you joined!  PLEASE keep us updated here as I have no doubt that others will be interested.  I am going to link to this thread from a couple of our bowel transplant information threads.
> 
> Thank you for joining and I sincerely wish you nothing but the best


Hi David, for some reason I think that I have just seen this post so please forgive my rudeness in not responding. I hope that my updates have continued to be of use to others out there. Sincere apologies again


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## michaelseres

Spooky1 said:


> Well, i'm home now.  colonoscopy done!  it went like this:
> 
> Fentanyl 50mcg
> Fentanyl 50mcg
> midazolam 3mg
> midazolam 2mg
> midazolam 2mg
> 
> Paediatric scope used.  was bloody agonies i can tell you.
> meds described as ineffective.  was awake the whole time and screaming out, omg, how embarrassing, but it hurt
> 
> result of scope:
> Severe stricture in anamastosis with ulcerations and bleeding.
> they still pushed the scope right through and took a series of biopsies.
> recommend general anaesthetics for future scopes as the meds do not put me to sleep.
> 
> the pics they print out along with the procedure look disgusting, but the narrowing with the blood and ulcerations reveal the extent of the issue.  the rest of the bowel looks normal, yay, something to be pleased with.  my crohns seems to run from mouth to terminal ileum (well that area) the joined bit from previous surgeries.
> 
> so, i'm utterly dehydrated from the citrafleet and feeling too poorly afterwards to focus on replenishing fluids.  today i'm gonna treat myself to fluids and a complete rest cos i'm just so exhausted.
> 
> nice to be home though.  i had stayed with sis and her family cos they're nearer the hospital and did the driving.
> 
> tis sunny out which is, of course, especially for us Brits, a great tonic.
> 
> hope all is going well with you, Michael.  perhaps one day i shall opt for the transplant!  i'm a little squeamish.
> 
> best wishes
> Diane


So not embarrasing I know how you feel completely. As many as you have it is still agony and I just wish they would completely knock me out!! I am delighted that they managedto get the scope right through, did they manage to put a balloon through the stricture? very painful I know but wondered if it could help you.

My crohns was in pretty similar to you except I ended up with about 50cm of small bowel left which caused me to go in to intestinal failure, hey what can you do.

i totally agree with you about the sunshine. My doctors have always said to be a warm climate would help enormously, Shame the sunshine is over today!!

Take care and I send my love
x


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## michaelseres

I was back at Oxford today for a fairly routine update. I say routine because as usual in my bowel transplant world I needed to have my regular bloods done. Thirteen test tubes waiting to be filled with my "blue" blood. Thankfully the wonderful phlebotomist was back from her Sri Lankan holidays and although it took about 30 mins she was successful. Then it was up to the ward to have my usual scope. This time though a potential kidney transplant patient was in the treatment room so after a bit of back and forth my surgeon decided that I could do without a scope today.

We spent a bit of time discussing the options open to me over the coming few weeks. I am very lucky that I have a surgeon who is happy to just chat and outline the plan of action before we move forward. My stomach emptying is still the big problem. In truth I am probably eating less than ever at the moment. My weight has dropped a little but thankfully not too much. So the plan of action is still to have this balloon dilatation to try and stretch the stomach muscles at the bottom of the stomach. We will give that a couple of goes if needs be and keep fingers crossed. if it doesn't work On the other hand if it doesn't work then I'm in line for a bit of cosmetic surgery. Yes you heard it right!! Botox injections in to the stomach. Apparently they can also stretch the muscles and may help. Now I have heard of botox on the forehead on lips but the stomach, well it is a new one for me. There is also a final final solution which is this gastric pacemaker but lets get there first before we go in to too many details.

With options on the stomach front in place I can now start to think more seriously about my stoma reversal. It will still be in May and I suspect that I will be in hospital for about a week. Apparently day 4 will be the key day. They will watch me like a hawk as leakages are possible and it is still earlier than planned for a reversal. As I know more I will tell you but for now that is the plan.

Aside from all of that I am still trying to deal with the emotional side of having the transplant. Generally I am fine but I cannot still help but have what I can only describe as flashbacks over the whole stay in hospital. The team have been great about it with the transplant coordinator offering to sit and chat and now the offer of seeing a counsellor. I am going to take up the offer as I think it will help. It is funny, talking about my emotions has actually caused the biggest reaction of most of my blog posts. It is the first time that I would would say that I have had any sort of emotional response to my surgeries and that can be hard to square off in your head. As a very good friend said to me the pain goes away and the physical heals but sometimes it takes the mind a lot longer to reconcile itself with the body. I think for me it is sometimes hard to explain that although I am out of hospital and actually looking pretty good there is an assumption that all is perfect. It almost is but not quite, not yet at any rate.......

Till the next time
Mx


----------



## David

Thanks for the update Michael.  Fingers crossed that the balloon dilation goes well!

I think it's perfectly understandable that emotions are coming into play.  What you've been through must be very traumatizing in a myriad of ways.


----------



## Josephine

I have not readed your blog, but good luck with transplant and emotional side is common maybe some form counselling with help to sort your feeling out.


----------



## Angrybird

Thanks for the update Michael, I am glad you are going to have some councelling, you have been through so much so it will be good to be able to talk it all out. Do you have a date for the balloon dilation? I do hope this does the trick.

Wishing you the best always.

AB
xx


----------



## Josephine

Josephine said:


> I have not readed your blog, but good luck with transplant and emotional side is common maybe some form counselling with help to sort your feeling out.


Opps sorry. I did readed all but sometime lines blurred it to each.


----------



## DustyKat

It's so good to know you have such a fab team around you Micheal, including your family!

I don't know about anyone else but for myself I have found in many ways the hardest days to be when my children have been well and truly out of the woods and I have time to reflect on what has happened. 

When you are living the moment I think you concentrate on the here and now and just getting through from day to day. I don't think it is just that you don't wish to look to the future but that you don't have time, you are focused on survival and it's your body's way of coping. 

Then once that period passes you start to think of what has been, what may have been, what the future holds and how fleeting things can be. Now that is just my experience but throw into all that the fact that you have had a transplant then a whole raft of other emotions come into play as well. Loss of your own bowel and the gaining of someone else's, that is a helluva a lot to get your head around! 

I'm glad you have decided to see a counsellor.  In my mind it will only do you no end of good. 

Dusty. xxx


----------



## Spooky1

Very well said Dusty, and obviously truly understanding of what people go through.


----------



## michaelseres

*From Crohns Disease to a bowel transplant how did I get there 100412*

Well it has been almost a week since I blogged last and I thought that it was time for a further bowel transplant update. In truth there hasn't been a huge physical difference over the past few days. The reality is that I can't eat very much at all and when I do it pretty much re emerges inside about 30 minutes. I guess at least that has confirmed that the stomach really isn't working properly. It is the same thing with drink, about 1/3 of a glass is fine it is the other two thirds well they don't go down that well.

Aside from the stomach the bowel is pretty good. Last sets of bloods were ok, just can't quite get rid of the bacterial overload issues. The foul smelling burps are still there together with bloating but I am pretty content to know that it will be a few months before things settle. I am on a combination of 4 different things daily so eventually it will kick in and work. In the meantime the combination of all things above means that I am still stuck on my enteral feed for up to 14 hrs a day. I was asked to try and put some extra feed through my tube in the hope of boosting my calorie in take and also increasing my protein levels and other nutrients. Unfortunately it started to block my Pej so after finally managing to flush it free I have given that a bit of a wide berth. Am back at Oxford on Thursday when they are tying to coodinate the balloon dilatation with my scope and biospy so let's see.

As I said not a huge change in my physical well being but mentally I have been trying hard to refocus and start to put a plan of action going forward. I know that plenty of people say that you shouldn't plan or have goals because what happens if you can't reach them or what happens if you do reach them, what's next? For me though having goals and knowing that there is a plan in place allows me to cope especially when I have weeks like this last one when there is no obvious physical improvement. With my stomach, my surgeon has a plan in place, I know what he intends to do and actually even if it doesn't work I think that I can cope but not having a plan makes it harder as you feel that time drifts by.

Trying to put plans and ultimately targets to reach seem to be playing an increasingly important role in my life and by default in my recovery. I am actually not sure why or even how it started but I just feel I need to constantly have things I can try to do or plan to do. I have tried to put a plan in place with this blog, to grow it and reach more people in the hope that my experiences really can help others. In a way it helps me feel useful and worth something whilst helping others. There are so many fantastic people who create communities, web sites, forums etc all with the goal of helping share experiences and ultimately provide comfort for patients and their families. I didn't have any plan when I first started but now it has become a very important part of my life and is also a kind of therapy. Being part of a community like the ones I am part of all around the world and the charity work that I am incredibly privileged to be part of is another important part of my life and just enables me to move forward.

I am incredibly lucky to have an exceptional wife and kids; a loving family and wonderful friends and each one of those elements helps me in different ways to cope with things. In truth I am not sure if I am joining together all these elements and trying to fit them in to a box when they don't actually belong there. On the other hand I have never been through this roller coaster called a bowel transplant before. Should it all be this complex? I mean I had bowel transplant surgery, am recovering from the surgery and it will hopefully change my life and that of my family. Shouldn't that be it?

Catch up soon
Mx


----------



## David

Thanks for the update Michael.  

It's not surprising to me that it is so complex for you.  You're having to deal with physical, emotional, mental, and maybe even spiritual complexities.  That must be overwhelming at times.  I can't imagine what you're going through but I think this is all part of the recovery process.

*hugs* to you buddy.


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## Angrybird

Hey Michael, I really hope the dilation can bring some positive changes for you. I think you have been doing incredibly well considering all you have been through and it says a lot about the type of person you are that you are doing what you can to help and educate others - you're a star.

AB
xx


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## michaelseres

David said:


> Thanks for the update Michael.
> 
> It's not surprising to me that it is so complex for you.  You're having to deal with physical, emotional, mental, and maybe even spiritual complexities.  That must be overwhelming at times.  I can't imagine what you're going through but I think this is all part of the recovery process.
> 
> *hugs* to you buddy.


I really appreciate your thoughts and comments, it is a huge help having friends around the world to help you through the ups and downs. You take care and a big hug back!!


----------



## michaelseres

Angrybird said:


> Hey Michael, I really hope the dilation can bring some positive changes for you. I think you have been doing incredibly well considering all you have been through and it says a lot about the type of person you are that you are doing what you can to help and educate others - you're a star.
> 
> AB
> xx


You are too kind. We all do our best, after all we are this pretty small family and if you can't help family then who can you help! Hope you are doing ok and take care xx


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## Angrybird

Hiya, I am not doing too bad at the moment thank you, just a sore throat and cold - my easter present!


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## Spooky1

Hi, Michael,

I also suffer emotional stress with this crohns, and arthritis, not to mention the extreme fatigue.  Can't believe that you cope with family life with your health that bad.  I think its normal to suffer stress and emotional turmoil after a transplant.  you should be taking it very easy.  Do you PEJ up overnight, or does it keep you awake?  mines on 20 hours a day cos it keeps me awake at night if too much goes in in one go.  I trust you don't have the added stress of work at the moment.


----------



## michaelseres

Angrybird said:


> Hiya, I am not doing too bad at the moment thank you, just a sore throat and cold - my easter present!


Know how you feel. Can't get rid of my own cold - had it for about 3 weeks. Wish you better very quickly
xx


----------



## michaelseres

Spooky1 said:


> Hi, Michael,
> 
> I also suffer emotional stress with this crohns, and arthritis, not to mention the extreme fatigue.  Can't believe that you cope with family life with your health that bad.  I think its normal to suffer stress and emotional turmoil after a transplant.  you should be taking it very easy.  Do you PEJ up overnight, or does it keep you awake?  mines on 20 hours a day cos it keeps me awake at night if too much goes in in one go.  I trust you don't have the added stress of work at the moment.


Feed is on mostly during the day. Like you it used to keep me up all night and often caused problems so I lug around the feed and ruck sack during the day. I haven't been able to work properly for the last couple of years but I am conscious that I do need to get going as we need to get some income in. Always a balancing act, don't want to add stress but need to try and get going. Hey it could be worse.

You take care and keep in touch
x


----------



## Angrybird

You too hun, you have more than enough to deal with! 
AB
xx


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## Kelly2

Hi Michael,

Thank you for sharing your story with us.  You are truly an inspiration to everyone out there.  The fact that you are so willing to share your journey with us all, benefits each and every one of us who reads it.  

It sounds perfectly normal and very understanding, if now after all is said and done, you find yourself reflecting on your journey and what brought you to this place in your life. It is only after the storm, that you sit back, and realize just how brave and resilient you are.

Thank you so much for sharing.  I continue to learn from you and look forward to all that you have to say.

HUGS

Kelly


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## michaelseres

*from Crohns to a bowel transplant latest update 230412*

am honest I didn't expect this blog post to still be coming to you from room 2 on the transplant ward. I guess that I had hoped I would be home by now.
It is really a case of good news and frustrating news since we last spoke. The antibiotics do seem to be working at last and the infections are definitely improving. Finally I have managed to drag my sorry body out of bed and get going again. Although the temperature here hasn't helped and at one stage I had gone from high temperature spikes to readings so cold it felt like ice in my veins. A room heater later and finally warmth returned. How can it be so cold here its nearly May for goodness sake?

The frustration is primarily centred around my stomach. As you know the real problem has been at the end of my stomach called the piloris (excuse my dodgy spelling). Well after the balloon dilatation I thought things might have improved. They haven't, I'm still being sick and now the concern is that if they do it again will it tear the muscle. So I guess botox is on the agenda again.

My surgeon, who has been away for a few days, is back today so a full review will take place. Hopefully a few of my questions can be answered. Why did my Stoma output go from zero to 1.7litres in one day? Why do my oxygen levels continue to drop, is it a hang over from the infections? And so it goes on.

You would think by now I would be totally used to being back in hospital. Perhaps it is because it came out of the blue but this particular stay seems to have knocked a bit of the stuffing from me. I do feel that it has put me back a bit further than I had estimated. In truth it probably hasn't but in my head it feels that way. In the same way that you can get institutionalised being in hospital well I had started to be comfortable back home in family life. I know for certain that I will be home soon but it certainly feels very frustrating as to how quickly home feels a distant memory.

Right now there are quite a few things up in the air. Some of my levels are borderline as to whether I may need another bout of tpn intravenous feeding. I am waiting for confirmation of the return of "Perry"the picc line. Stoma reversal is still on the cards but if my nutrition levels drop it could be delayed. Will the stomach start working again? So may loose ends I just feel I need a bit more certainty right now. Not that anything in a bowel transplant is ever completely certain.

Finally a quick apology. I have received some lovely blog comments back but being in hospital, internet connections are pretty bad so I can't always log in and respond. Its not personal I promise.

More updates soon.
M XX


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## michaelseres

*25 May 2012*

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


----------



## David

Wow Michael, it sounds like you've made some amazing progress!  I am so happy for you!

That's crazy that NHS food is less nutritious than fast food though!  What the heck is up with that?  Good grief.  And I'm sorry that they're giving you trouble with benefits 

I hope your progress continues to be steady!


----------



## Terriernut

I couldnt agree more with you about the state of toilets!!  If you want a good laugh, read in the stoma subforum about a member having a good ol go at emptying in a moving train after a marathon of a bike ride!

It sounds like you are doing amazingly well, and I'm very happy to hear the news!  As for the benefits stopping without explanation, it's not the first I've heard of this happening lately.  Dont stop fighting!


----------



## Angrybird

So glad you are able to have some food, and to start with cake.....yum. Will keep fingers crossed that the benifits can be sorted soon for you.

AB
Xx

NB Totally agree about filthy loos, it brings to mind a fond (hah!) memory of visiting banana island in Egypt when a trip to the loo consisited of wooden crates for walls, no door and a hole in the ground


----------



## michaelseres

Glad you feel that my story is of use and helpful to others. Thanks for reading it as always x


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## ellie

Hi Michael
I've been following your blog for some time aside from the forum. You're a great inspiration!! Hang in there, we're on you side


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## Spooky1

good luck with DWP and i've got my own issues with them lol.  can't believe what you're eating.  enjoy it, Michael


----------



## Kelly2

So glad to hear you are back home, and eating food again!!  As always, I hang on every word you say.  I really hope you get to play golf in the upcoming tournament!  I look forward to your future updates, and pray that all goes well for you - hang in there!!!


----------



## michaelseres

*From Crohns Disease to Bowel Transplant*

After a week of eating and new found optimism in my bowel transplant world things started to go a little wrong again. Late last week the sickness returned and with it the usual concerns. Surely the botox couldn't have worn off that quickly? I mean it had only been a week since my injections and I don't recall seeing people's faces suddenly become all wrinkled again one week after their injections. I know that mine were in to my stomach muscles but surely the same principals apply? No it can't be the botox I kept saying. On the other hand when you really do not know why sickness starts up again that is the natural assumption.

I decided to do nothing for a few days and just reduce my oral intake but still I was being sick. Why is it that you are always sick at the most inconvenient time. I mean with me it was around 2am. I'd had my meds, caught up on another 20 mins of Homeland (my wife kindly recorded all the episodes that I missed during my last stay in hospital) and was dozing beautifully then you wake up with a jolt and it is that quick dash to the bathroom. In my case our bedroom door creaks when you open it and the floor boards in the hallway also seem to make odd noises so there I am trying to get to the bathroom quicker than Usain Bolt runs his 100 meter finals whilst at the same time making sure I am not sick on the way and don't wake up Justine by opening the door too quickly or the kids by standing on the wrong floor board. Come to think of it my trip out of bed is really like a scene from Mission Impossible. Oh and come to think of it I probably do look a bit like Tom Cruise, perhaps not an exact match but at 2am who is looking.

So the sickness continued and I was called in for my usual MOT at Oxford a few days ago. Every time I go it is always the routine of umpteen bloods before you start and every time I walk in to the room to have them taken the lovely phlebotomist doesn't even look at me, he sees my name and just calls for a doctor to have a go instead. He is always muttering something about not having any veins to take blood from. I think it is just too many test tubes to fill and it would take too long. Next time I might dare him to have a go and then watch him go bright red and get all flustered. It amuses me anyhow.

From bloods it was off to see the dietitian for a review. I still have to record everything I do, stoma output volumes, timings of feed etc on a spreadsheet and usually I email that across every few days. Oh that reminds me I had better do one before the bank holiday. By sending things in advance it means that she has time to look at the whole picture and put a plan in place rather than me go though everything and then wait a bit longer for a plan of action. Her feeling was that the sickness couldn't have been caused by the botox stopping working, it sounded more of a bacterial problem. This was then confirmed by the surgeon who was waiting on the ward to scope me. There was no way that the botox could have warn off already. What was happening though was that my new bowel wasn't coping with the food hitting it. Although some food was being absorbed a lot wasn't and in fact it was sitting in the bowel fermenting and then causing bacterial problems that in turn meant my output was high, the bloatedness had returned and I was being sick. On top of that my muscles at the end of my stomach were paralysed open so there was nothing to stop the food coming back up. I guess it is a bit like electronic gates always stuck open. Everything can go in but everything can also come straight back out. Actually that was a pretty crap analogy but to be honest I couldn't think of another one, my mind went blank. Any suggestions feel free to email me.

This is a perfect example of the roller coaster journey that you go on post transplant. As an IBD patient we are all used to ups and downs but after you have gone through transplant you some how forget that the bowel is so complicated and so many different things can cause so many different reactions. Logically your mind says well, I have now had my new hose fitted and all the plumbing work has been done so what can go wrong. Then you realise that just by introducing one thing or restarting a different regime can have a massive impact on how the bowel reacts. I promise that i am not moaning it is just that some days you just want everything to be absolutely perfect. Just 24 hours with nothing wrong to recharge the brain and get the mental strength back to go again.

The scope itself was totally fine. There was almost a look of pride on my surgeons face when he looked on the screen and said beautiful. No one has called my bowel beautiful before, maybe next scope it will be stunning. What that did mean though is that the surgeon would very much like to do my reversal sooner rather than later. I am still having big problems staying hydrated. Despite putting in fluids every day it is very easy to tell when I am becoming dehydrated. Urine output falls, I constantly feel dry and my creatinine levels from my bloods showed that staying hydrated was still a problem. With the stoma reversal I can bring the part of the colon that is left in to play and that will help with absorption.

In the green corner though on the other side of the ring is my dietitian who feels very strongly that nutritionally I am not in the right place for the reversal. My weight is still dropping (not massively) and she would like me to be able to reduce my enteral feed and increase the amount I take orally before any operation. She would also like to see a bit more weight gain. I understand both sides of the argument but so far the Irish nutritional team are out negotiating the English/American surgical team. I tell you what I would love my dietitian to be negotiating my next salary review, she would definitely win any argument.

I left Oxford with more antibiotics and a strategy to sort out the bacterial issues. That in turn should help the sickness to settle and while I am waiting for that to happen I guess Tom Cruise will reappear in pyjamas again tonight around 2am.

Aside from bowel distractions our facebook group  Bowel Disease One Global family is growing nicely. Pls click this link if you or any of your friends or family would like to join.
http://www.facebook.com/groups/bdoneglobalfamily/.We are also hoping to tell our story through pictures so if you want to upload anything that connects you to bowel disease, be it scars, wounds, funny pics, family photos you can either go to our board on Pinterest http://pinterest.com/michaelseres/bowel-disease-one-global-family/ or send the pics to me and I will upload them.


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## David

Hi Michael!

I'm sorry to hear of the sickness   I hope that resolves really quickly.  That's great that the surgeon was pleased with the state of your bowel though.

Thank you so much for the update 

*hugs*


----------



## michaelseres

David said:


> Wow Michael, it sounds like you've made some amazing progress!  I am so happy for you!
> 
> That's crazy that NHS food is less nutritious than fast food though!  What the heck is up with that?  Good grief.  And I'm sorry that they're giving you trouble with benefits
> 
> I hope your progress continues to be steady!


Thanks David, it is bizarre what is going on with the food here, They spend roughly 0.80p per person per meal which is outrageous. It is also a false economy as good nutrtious food would enable patients to recover quicker, get out of hospital quicker and therefore save the NHS money. Hope you are keeping well. Michael


----------



## michaelseres

Angrybird said:


> So glad you are able to have some food, and to start with cake.....yum. Will keep fingers crossed that the benifits can be sorted soon for you.
> 
> AB
> Xx
> 
> NB Totally agree about filthy loos, it brings to mind a fond (hah!) memory of visiting banana island in Egypt when a trip to the loo consisited of wooden crates for walls, no door and a hole in the ground


Oh my gosh - wooden walls!!! Thought a hole in the ground and no door was bad enough, I had that when I was in China. You have to laugh!!


----------



## michaelseres

ellie said:


> Hi Michael
> I've been following your blog for some time aside from the forum. You're a great inspiration!! Hang in there, we're on you side


How have you been keeping?


----------



## michaelseres

Terriernut said:


> I couldnt agree more with you about the state of toilets!!  If you want a good laugh, read in the stoma subforum about a member having a good ol go at emptying in a moving train after a marathon of a bike ride!
> 
> It sounds like you are doing amazingly well, and I'm very happy to hear the news!  As for the benefits stopping without explanation, it's not the first I've heard of this happening lately.  Dont stop fighting!


Am definitely going to read that post. A moving train that has to be an all time classic story! Thanks for the continued support xx


----------



## Angrybird

michaelseres said:


> Oh my gosh - wooden walls!!! Thought a hole in the ground and no door was bad enough, I had that when I was in China. You have to laugh!!


Totally, me and my mum did have a good giggle about it.

Really sorry to hear you are having some sickness, will be keeping fingers crossed that this gets resolved quickly and that you can get some weight back on so you can have your reversal. I think it is very encouraging that the doc likes the look of things 

AB
xx


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## michaelseres

you take care and try and stay healthy


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## DougUte

Wow, just found this thread. I'll have to go back and read all this.Thanks for letting us know that story.


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## michaelseres

Thursday, 7 June 20127.21pm 
I can hear my eldest son making home made pizza so I thought that it would be a good time to get out of the kitchen and let you know what has been happening. On the cooking front I have had the thinnest victoria sandwich cake ever baked for me by my 13 year old son Nathan and I can smell cupcakes in the oven that my daughter has been making. So as you can see the cake update is going very well, the washing up is still a bit dodgy but it must simply be something to do with my kids eyesight as they seem to ignore kitchen surfaces full of cake mixture, cream, icing sugar or anything that resembles a mess. Just as a final cookery round up my wife is now in to baking bread so there is no shortage of food being put in front of me on an hourly basis.

On the bowel transplant front there isn't a massive amount to report. Since my last scope the antibiotics have started to work a little. I was sick for a number of days afterwards but over the last few days the sickness has settled a bit and is now not every night which is a relief. Stoma out put continues to mirror the weather here. Pouring for large parts of the day with the occasional break for sunshine and a dog walk. You never really get used to having a stoma, or at least I haven't. I must have some very warped mind because most days I wait till the very last minute before making a dash for it. Logic would say empty as it fills up but me, no, I can't be bothered to always get off my backside so it ends up being that mad dash. At night it is very different though, always when you are in the cosiest of sleeps the gurgles start and you wake up needing to run. Now I play the Mission impossible tune in my head every time I get out of bed!!

Perhaps one of the biggest changes over the last few weeks has actually been other people's view of me as opposed to my own view as to how I am doing. I mean I look in the mirror and see Tom Cruise, maybe a shorter Brad Pitt or perhaps on occasions Daniel Craig, others probably see Shrek or Dumbo or Woody from Toy Story. See, the same face but very different thoughts and it is a bit like that right now. Someone recently very accurately described bowel disease as an invisible illness. In other words how you look on the outside does not always reflect what is going on inside. There is a real tendency for people to assume that because you are out of hospital then you must be fine. Sometimes that really isn't the case but after a while it becomes easier to say that I am fine rather than explain my problems on a daily basis. In other words how you look and feel to yourself is often very different to how other people see you, especially those who thankfully haven't experienced what you have been through. In someways I think I find it easier to talk about other people's problems and try and be a support to them than spend time talking about my own trials and tribulations.

I am definitely starting though to do more on a daily basis. I can tell that by the fact that I get shouted at more. Mind you that is a pre requisite for having a wife and kids. Oddly though for my kids it means that a bit of normality has filtered back in to their lives and dad can just be treated as dad. As far as my wife is concerned though it just means that I am more annoying than I used to be. I get that.

Thankfully I have an extra week off from bowel transplant HQ so hopefully I am home for a little while longer. The battle of reversal vs nutrition continues. It is a bit like England V Germany at football. We go in to it full of hope but really know who will win in the end. In my case Marion, the dietitian definitely plays for Germany although she has opened a chink of light so I am hopeful that one day England will win the penalty shoot out and reversal won't be that far off.

Ok my indoor putting green is up and I have actually been to the driving range to try and swing a club. Tiger Woods I am not but then again I haven't had as many birdies as he has! Hopefully though it means my goal to play in the transplant games can still happen. I am exercising daily which is hopefully helping to improve my overall well being, just not so sure that our dog is that pleased to be dragged out in such bad weather. I have found that sometimes getting out is a good distraction for stomach pain. The bloating and bad taste in the mouth still remains although having a small bite of garlic bread a few minutes ago won't have helped. If I could get rid of the discomfort then I would really feel I am off and running. So many things to constantly be aware of, I think I need a pa just to manage myself. Then again my wife does an amazing job of knowing when to ignore things and when to step in and help. Yes I am a very lucky man.

Catch up soon and don't forget to click in to our Bowel Disease One Global Family. Link is on the right.


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## Angrybird

Thanks for the update Michael, as always I really enjoyed reading it. I hope you can continue to take those gradual steps in the right direction and that the stoma out put soon calms down for you (what's the betting that by the time this is where you want it to be the reversal get's booked?).

Sending you and you family lots of best wishes.

AB
xx


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## michaelseres

Just always so lovely to hear from you. I am always grateful to you for following my story and if I can ever repay you but helping with anything then please just shout!


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## David

Thank you for the update Michael!  You were really able to go to the driving range and swing a club?  That's amazing.    I think I would have been scared to.


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## michaelseres

I was probably mad for doing it but I did go!! Tucked my enteral feed bag at a safe distance away and then enjoyed myself. Not sure that the golf was much good though! Take care


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## MSFogleman

Michael all we can say is WOW!  We are blown away with your story and didn't know a transplant was this close to being a possibility.  Hopefully the long term outcomes from the Trailblazers like you will be good enough to make this a viable alternative for us.  
Thanks for sharing.

Mark and May Ann


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## michaelseres

Hi there Mark and May Ann, so lovely to hear from you. Yes it has been a journey but what can you do. You have to deal with the hand you are dealt and get on with things I guess. I have been very lucky to have had wonderful doctors around me but above all an incredible wife and three amazing kids. Without them it would have been so much harder. If there is ever anything I can do to help or just be a sounding board in some way then please just shout. Take care Michael xx


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## michaelseres

*My continuing journey from Crohns to a new bowel*

Friday, 15 June 201210.45am 
I never knew that walking around with a feeding tube and ruck sack would attract so much attention from passers by. The odd glance or curious look maybe but to have adults staring at your "personal possessions" while you queue at the post office or are out walking the dog is a new occurrence for me. It's a feeding tube I scream, except I don't. In my mind I do but in reality I give a pathetic smile and carry on.

It does raise though the question of what people's perceptions are of normality. I suspect that every single person could tell you a very different story but when you are out in public it is only actual visible differences that mark you out from the crowd. In reality that is both a positive and negative when coping with ibd and bowel transplant recovery. I walk the dog like any other owner would and I drive around like anyone else yet at the moment my feeding tube makes me stand out when in reality that is an accessory, its my new transplanted bowel that is the real difference. Maybe as 3d glasses and x ray vision catches on people will be able to look beneath the surface. Yuck what an awful thought but you get my drift.

The last week has really seen a continuation of stoma output issues and always at the worst possible time. Today could prove to be my very own suicide mission as I am on a train for 2 x 1hr journeys with no loos in sight. Perhaps I should have cemented up my stoma beforehand but I guess this is my own version of Russian roulette. Quite exciting in a bizarre way. 

With output pretty much around 2litres a day and sickness intermittent I have been juggling feed and hydration issues. It becomes a daily challenge but actually the real challenge lies in continually having a feeding tube attached. There are plenty of days when I wake up and think I really can't be bothered to put it on. Then I get downstairs, feel guilty and on it goes. Pathetic really, even at 43 I still have agreements with myself all the time.

Then of course there is the food argument. The sure fire way to read my dependence on feed is to eat a bit more. I know that and my wife knows that yet why does it still take her to remind me to eat. I have set daily reminders in my phone, I leave notes to myself next to my computer (as my wife says I spend more time with Lola the laptop than anyone else) but the truth is the brain isn't yet shouting at me to eat

I have managed to remember to have some breakfast so that's a start. Everything else gets eaten because others tell me it's time too not because I feel hungry. Guess I had better stop moaning and start eating. Perhaps someone can describe to me what it is like to love your food so much you can't wait to eat it. Where to those thoughts come from?

My dietician did dangle the carrot (not food again!) Of a stoma reversal as a possibility over the next couple of months. Excited yes but there is going to be a trade off somewhere. Just don't let it be having to eat broccoli every day. It really is great though to think that the reversal is back on the agenda again. I talked about the reasons for it happening on so many occasions now I can almost touch it. 

Before I go I just feel I need to have one quick rant. NHS medical care vs NHS administration. One is like having an Aston Martin (yes if the chief exec is reading this I'm happy to have one as sponsorship) and the other is like having a bicycle without the wheels, saddle and chain. I know that admin in healthcare is generally a problem but my question is why? How difficult can it be to coordinate supplies, get new meds,  blood tests, pick up and collections. I just don't get it so please if you understand why the medical side can be so amazing but the admin so shocking please explain. Otherwise I think I will have to get my favourite show back The West Wing and ask President Bartlett to sort it.

I have just arrived at my destination for today. Headquarters of the London 2012 Olympic Committee. I am very privileged to being given a look behind the scenes. I came though without my feed on. Perhaps sub consciously it was the first time that I didn't want to wear it in public or perhaps I just listened to my wife who said the travel would be easier without it. Who knows but either way no one looked where they shouldn't have unless of course they had x ray vision.

Till the next time


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## Terriernut

I certainly cannot blame you for being uncomfortable wearing your feeding tube in public.  Sadly, peoples curiosity overcomes their manners (some never had manners taught in the first place, which is evidenced daily)

And as for the travel with output like that...I cant blame you for finding that an adventure.  However, I must commend you for your fortitude in going forward regardless.  That is what we must do, or we lose the will to carry on. In fact, crohnies must have bravery in spades, and carry on, as you do, or we lose ourselves.  Never lose that bravery!

Now, how to get you to get hungry after going so long without regularly eating???  I would think (if you went to my GI) that they would like to have you eating before a reversal.  Eating regularly that is.  And having less output.  I would guess, if that were put to you, you would most likely not forget to eat???
:ghug:


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## littlemissh

I agree with the wearing the tube in public bit. I have had mine since 22.11.2011 and initially I just looked away. Now my children and I just outstare the adults! They quickly look away then and it has become a bit of a game. I don't mind little children staring as they are curious but adults should know better.


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## michaelseres

Terriernut said:


> I certainly cannot blame you for being uncomfortable wearing your feeding tube in public.  Sadly, peoples curiosity overcomes their manners (some never had manners taught in the first place, which is evidenced daily)
> 
> And as for the travel with output like that...I cant blame you for finding that an adventure.  However, I must commend you for your fortitude in going forward regardless.  That is what we must do, or we lose the will to carry on. In fact, crohnies must have bravery in spades, and carry on, as you do, or we lose ourselves.  Never lose that bravery!
> 
> Now, how to get you to get hungry after going so long without regularly eating???  I would think (if you went to my GI) that they would like to have you eating before a reversal.  Eating regularly that is.  And having less output.  I would guess, if that were put to you, you would most likely not forget to eat???
> :ghug:


Yes, feeling and looking like a patient can often be a hard thing to cope with. Luckily I am not the shy retiring type and actually feel why should I let my illness get in the way of anything.

Travelling though is a tough one and I am not so sure how to solve it. Think you just have to take the plunge and be brave enough to go out otherwise you would never do anything at all. However I can totally understand why people wouldn't want too.

My dietician is definitely pushing me to eat a little more pre reversal. Hoping things will improve but need to retrain the brain a bit to get used to thinking about food. 

Thanks for rresponding to my post, I really appeciate it.
Michael


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## michaelseres

littlemissh said:


> I agree with the wearing the tube in public bit. I have had mine since 22.11.2011 and initially I just looked away. Now my children and I just outstare the adults! They quickly look away then and it has become a bit of a game. I don't mind little children staring as they are curious but adults should know better.


So true, adults should know better but they don't. Like you it becomes a game and one I am not going to lose!! Good luck with it all. Lol


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## michaelseres

*My continuing journey from Crohns to a new bowel*

Friday, 22 June 20124pm 
It has been a bit of a funny week in my bowel transplant world. I went back to Oxford on Wednesday for an MOT but really came away with more of an oil change a few spark plugs replaced as opposed to the full service. What I mean by that is I didn't have a scope and biopsy but did have long discussions with the dietitian and transplant coordinator over changing my enteral feeding regime and trying to tinker with my medication routines. Does that make a bit more sense now? Probably not but humour me anyway.

For me the biggest breakthrough will come when I can reduce my reliance on enteral feeding and not have to walk around with a rucksack and feeding tube for 15 hrs. However the transplant team have slightly different thoughts as to what breakthroughs they would like to see. Ideally for them it would be the removal of my picc line and therefore a reduction in my dependence on anti sickness medication 3 times a day. So there lies the dilemma that I guess many patients have. What becomes so important to a patient is not necessarily the same priority for a surgeon or your medical team. Given that we are all in this together I suppose it is a bit like a football team. The defence's priority is not to concede goals but the attackers priority is to score loads. Both parties want to win just in slightly different ways. Have I confused you even more now?

The plan of action agreed is to try out a new feed that will give me the same level of nutritional input and calories yet be able to go on for half the time. This is then supplemented by shot drinks to give me a calorie boost. Yes I did say shot, not vodka or tequila but a thick drink that tastes like very strong peanuts.All of this will then free up more time for me. Amazing, fantastic, jumping round the room in delight..........No. The free time is now taken up with up to 2 litres of water a day going down my tube and with each litre 8 sachets of dyralite are added to ensure better absorption. So when you add it all up, compute it on to an excel spreadsheet it works out that I am still on some form of tube feed for 14 hrs a day. So that service that I went in for has saved me the grand total of an hour a day. An hour I hear you shout, yes a whole 60 mins, wow I am a lucky man. I do write this with a degree of sarcasm as the team at Oxford are brilliant and they really are trying to find ways of getting me back to normal life as quickly as possible. I guess we all have days or periods when we get hacked off with things and I think today was just my off day - apologies!!

On a positive note dates are now being looked at for my stoma reversal. Soon Stanley the stoma will be sent to stoma heaven and Ian the intestine will be put back inside where he belongs. Will keep you posted on dates once I know them.

I have been spending a bit of time talking with a lovely lady about the relationship between your mind and your gut or more specifically your connection between your sub conscious and your intestine. A few people that I highly respect have talked about needing to solve emotional and phsycological issues together with the physical medical problems. Only when both are mended can you be fully sorted. For me this whole area has been a real step in to the unknown. It feels like I am jumping out of an aeroplane with no parachute and no idea if I will land in a beautiful green field or a field full of horse poo. It does make sense but it is taking me places that I have never been before and they are not Hawaii or  Mauritius or the Caribbean for a new year break. Let's see how this unfolds.

As you all know I have blabbed on about the state of food in hospitals and patient involvement and I had my very first step in to the world of NHS administration this week. I was asked to join our health care trust's patient group. This group is the over arching body that ensures there is patient involvement in all key decisions of health care here in UK.The government have now made it a priority to ensure that patients views are taking in to account in every aspect of health care. The meeting was definitely an OMG moment! I never ever knew that there were so many committees involved in every single aspect of care. There are even committees that make recommendations to other committees. There are committees that are formed but are not allowed to make any decisions at all. Crikey it is a wonder that anything actually happens, yet in the NHS region where I live we have a fantastic C.O.O and some really amazing people doing amazing work. At the moment I have the enthusiasm of an England fan who has just reached the quarter finals of a major tournament and I feel that I can make a difference. Hey the NHS medically has been very good to me so it is about time I got off my arse and put something back. The thought though of having to wade through a thick treacle of committees doesn't exactly light my fire though. So let's see what happens!

Right time to go. Please do not forget to join our facebook group if you haven't already. We have just crashed through the 800 family member mark. http://www.facebook.com/groups/bdoneglobalfamily/ and if you fancy a look at what Tom Cruise will look like in a few years please check out my You Tube channel http://www.youtube.com/user/michaelseres?feature=mhee.

Catch up soon


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## Manzyb

Thank you for sharing your story!  I love to read your updates on how you are doing.   I hope you are having a better day today.


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## michaelseres

Wow, Sadie is gorgeous and really cute!! Thanks so much for the lovely words and message. I'm doing ok at the moment, usual hiccups but getting there. Would love regular Sadie updates though!!


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## michaelseres

*My continuing journey from Crohns to a new bowel*

Wednesday, 11 July 20125.15pm 
So much has happened over the last week in my bowel transplant world I am not sure where to start. The beginning is usually a good point I guess.

These last 10 ten days has been a real whirlwind. It started with a few stomach pains and to be honest I took no notice. Those pains got worse very quickly and my wife always knows when things aren't good as I ask her to do my injections. Energy levels dropped dramatically as the pain got worse and very soon it was up there with my all time top three most painful episodes ever. I know that it is a bit odd to be ranking your pains but believe me I think I have developed a pretty good tolerance to pain but this one was right up there with my kidney stone episode and significantly higher than the pain I felt when QPR lost the cup final replay to Tottenham.

My stoma output which whilst plateauing at around 2 litres had changed from its usual pattern of filling up quickly to become the Usain Bolt of stoma outputs. 300/400 even 500ml could pour out over maybe 20 seconds. This had been going on for a while and then suddenly it slowed to something more in keeping with a British sprinter who just scrapped through a qualifying heat. Then the pain in my backside reached fever pitch. I couldn't stand, couldn't sit the only think I could do to alleviate some of the pain was lie on my left side. It did still mean I could send out the odd tweet or facebook post but the tell tale signs that Michael is unwell is when the phone is out of my hand for over a minute.

Somehow my wife drove me back to Oxford while I was wedged at a 40 degree angle on the front seat. Yet again the team there were amazing. My surgeon who had been operating since 5am that morning saw me immediately and it was scope time. He was pretty sure that food had bypassed my stoma opening and got blocked. I still have part of my colon in tact so should have been able to pass it as normal, the only problem was that the colon hadn't been used for so long it was hibernating. I couldn't go to the toilet and I couldn't be sick and I knew that in a few days I was supposed to be holding the Olympic Torch. After bloods my usual discussions on trying to stay hydrated and an interesting chat about my pej feeding my surgeon sent me home reassuring me things would improve. By the way that "interesting" discussion was a male vs female debate and somehow on my transplant team the lady always wins the argument. Come to think of it that is exactly what happens in virtually all parts of my life at the moment.

Deadline day was Friday. I was due to carry the torch on Sunday and if things hadn't improved by Friday I was back to Oxford for more action. All I can say is that when your surgeon tells you that he has never before been so happy to hear a patients bowels open you know how close we got to the deadline. The change of medications, absolute faith in my medical team and a very long heart to heart chat with our dog paid off and finally by Friday afternoon I could at least walk. I had managed to keep myself hydrated for the week but hadn't been able to eat anything or even put on my enteral feed so I was shattered and to be honest probably felt as low as I have been for a very long time but thankfully the episode passed.

And so Sunday 8th July arrived at it was time to become an Olympic Torch Bearer. They call it "your moment to shine" but frustratingly the sun decided to go against that instruction. Sunday was also a very momentous day as a Brit for the first time in 74yrs was playing in the Wimbledon final. However what Andy Murray didn't know was that it was also the first time a Brit with a bowel transplant was carrying the torch. Trump that one Andy!!! With that thought I put the high performance, uniquely designed, beautifully folded pyjama set on.



We set off for the drop off point around 2 hours before I was due to complete my leg and in true British style the weather was appalling. This whole day for me was about saying thank you to so many people. In truth my wife and kids deserved to hold the torch but hey I got the gig and wasn't going to let go. On arrival I was lucky enough to be filmed by the BBC.


The day was poignant for so many reasons and one of the emotional experiences of my life. I was desperate to be a good front man for a IBD patients around the world especially those that have become my on line family. I hoped that I could show that despite however tough things get good times can also happen. I also wanted it to be a way of saying thank to my incredible medical team who literally changed my life and have given me a second chance and I also wanted my amazing friends and family to see that with their support and love I will get my life back on track.

Eventually my emotions got the better of me when about 30 mins before I was due to step off the bus my son Nathan called from Israel. Both he and our eldest son Aaron were away with school and youth tours and couldn't share my moment in person. I was totally fine with it as people had been so kind in making their trips possible and they were having once in a lifetime experiences but when Nathan called and said "daddy I am so proud of you" I just started to cry. I remember him asking what was wrong and I said that I had something stuck in my throat but I could tell in his voice that he was crying as well. Suddenly everything that had been happening to us as a family over this last year hit home. I was only the patient but what my wife Justine and kids had been through was perhaps an even tougher journey than my own.

Then it was off on to the bus to be dropped off at my start point as see my wife and daughter.


From the time I stepped off the bus until it was all over seemed like a total blur, something so surreal. I am just this bloke that lives in Radlett and sits on his computer all day yet the amount of people who braved the rain and gave up their time to see me was incredible. My writing skills are not good enough to explain everything. The crowd were incredible and for those 350 meters I wasn't a bowel transplant patient any more I was just me. I know how lucky I was to have been selected, there are plenty who didn't get chosen and deserved to. Perhaps I was even a little blase about it all in the build up but the memory will live with me for ever.



My moment to shine is now over and life has returned to normal. My on going bowel transplant road still has some speed bumps in it. Mr Stoma has picked up his pace again and output is rising but hopefully that will be back under control soon. I have started a new feeding regime trying to reduce the time I spend connected to a feed. This means that I down shots 3 times a day. Sadly not vodka shots but high nutritional content shots and I am on an extra strength enteral feed. So let's see what the next few days brings.

I doubt I will ever write a blog post like this again in my life but hey this one has been a blast.

If you'd like to see some photos of my amazing day, http://www.beingapatient.blogspot.com

Till the next time


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## Manzyb

I love reading about how you are doing and your experiences!!

How cool that you got to carry the torch!!   

I hope you continue to do well and those speed bumps you are hitting start to lessen and lessen   Big hugs to you and your family.


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## michaelseres

How gorgeous is Sadie, so totally adorable!! I really appreciate you continuing to read my journey and I just hope that my story can help others out there with similar issues.

Thanks for the lovely response and give Sadie a hug from me!


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## Angrybird

Hi Michael, OMG you also got to carry the torch!!!! Am so glad you were well enough in time to do it  I can only agree that as always I have enjoyed reading up on how you are doing, I will be keeping fingers crossed that things will calm down again for you.

AB
xx


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## michaelseres

Yes, such a lucky boy!! Thanks for your on going support. How have you been of late?


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## Angrybird

Doing well at the moment thank you, had to change to 6-mp from the Aza but otherwise things have been fine.

xx


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## Terriernut

Late to the thread, but I just want to say, what an inspiration!!!  Keep overcoming those speed bumps Michael.


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## michaelseres

*My continuing journey from Crohns to a new bowel*

Wednesday, 25 July 20125.41pm 
The time between blog posts seems to be getting longer. Some will say thank goodness and for those who don't I apologise for my tardiness. In truth I have been all over the place this last week or so both healthwise and also trying to get back to a normal life and develop some new avenues.

Bowel Transplant wise it has mirrored our British summer and been a mixed bag. Come to think of it aside from the last few days I would have settled for a mixed bag weather wise the truth is it's been like the inside of my stoma bag........

As far as eating goes things are definitely improving, I am trying more foods and am slightly more adventurous than I have been. Mind you I still can't stand cooked broccoli much to the annoyance of my wife who told me that my reaction to her putting a piece on my plate was worse than a baby's. It's not as if I'm giving you poisen she exclaimed! Might as well have been in my mind though.

My frustration with food is that it seems to recycle in to my stoma bag within 30 minutes. Some might say that is a good way of keeping the food bill down but my concerns have been about how much is being absorbed and therefore how much nutrition I am actually keeping inside me. Although my weight hasn't had a dramatic falls it hasn't had any dramatic or even tiny increases. I am still on an enteral feed and also on these pro biotic shots so my calorie in take is pretty good per day therefore in my little (and I emphasise the word little) brain I should be gaining weight. Yes I know it doesn't always work like that but hey you can't blame a man for trying. My dietician isn't worried so maybe I shouldn't be. I think that is the trouble that sometimes with bowel disease so much comes in to play on a daily basis that can affect your nutrtional levels, rates of absorbtion and other factors. So even though I have been a patient for so long and think I know my body in truth there are still many unanswered questions.

I have been on a different antibiotics for the last couple of weeks again addressing the bacterial issues. I haven't noticed any real changes though and I am constantly being told and reassured that these things can take months. I am a man on a mission to try and get back to normal life as quickly as possible so knowing things can take months is really just another mental battle to overcome rather than a physical one. Bizzaely as things improve so on occassions the mental challenge becomes harder. You know what it's like once you taste a bit of something you haven't had in a long time when it then gets taken away, or in my case when a few bad days creep in, it isn't always easy to keep going. Mind you I should be used to it being a QPR fan. So much to look forward to when we win again and I dream of back to back victories only to lose the next three.

So finally the sun arrives in England. We all feel better! Men and women walk the streets at 8am in anticipation that the temperature will rise further wearing clothing that would usually be associated with lying on the beach. What do I do? Start to dehydrate. Flipping typical. There I could be walking down the high street in my David Beckham sarong, flip flops on and baseball cap titled at 45 degrees with the label still on the peak, instead I am putting in around 4 litres of fluid a day through my pej with a rucksack hanging off my shoulder. I know how important staying hydrated is for the normal person so when you are a Crohnie and bowel transplant patient the emphasis is even greater. Yes, I know it is so typically British to moan but it does get frustrating that when the sun is out and I should be chilling or as my daughter says "chillaxing" I'm chucking fluids in to keep my shiny new bowel hydrated. Actually as I write this I can still hear my wife's voice in my head going "why aren't you drinking, why is that glass not empty?" In truth she is right but there is only so much a man can drink...

My hydration issues and absorbtion problems should help when I have my ileostomy reversed. I'd love to tell you when that will be but I still don't know. My transplant surgeon wants the colorectal surgeon in with him so coordinating diaries is proving tricky.Why?.....hey it's the NHS.

Away from my body issues life has been pretty good. I have just been awarded an E-Patient scholarship to attend a conference at Stanford University in late September, something that I am incredibly excited about. It will be a chance to meet other exceptional people and talk about the future of patient to patient interaction and the use of social media in healthcare whilst at the same time shaing my own experiences.

Finally before you nod off; oh you have already, well wake up as I want to mention something incredible important to me. Last Sunday was the finish of our 3rd Paris to London charity bike ride raising money for research in to Crohn's and Colitis. It is called Guts In Motion and there is a link to the right of this page. Click on it, I dare you!




This year the ride has so far raised over £90,000 and in three years has raised approximately £250,000. It is generally supported by sponsors which ensures that every single penny goes directly in to research and patient programmes. We spend nothing on admin. Whilst I am incredibly luck to be the chair of the charity, 4 inspirational and truly incredible friends help make this happen. You know what, no matter how tough you may think things get to be blessed with such incredible friends as my family and I is the most wonderful feeling. Paul, Andy, Bern and Perry - thank you for helping turn my dream in to a reality.


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## Tenacity

Hi Michael,

Thanks for the update - I always enjoy reading your posts and you always make me laugh with your sense of humor!  It certainly seems like quite the journey you have been on!! 

Do they have you on any medications to slow the transit time down - over here in the States there is a med called lomotil available by prescription only:

http://www.webmd.com/drugs/drug-6876-Lomotil.aspx?drugid=6876&drugname=Lomotil

Also, are you taking any psyllum husks like Metamucil?

Congrats on the E Patient Scholarship!  You are such a great representative of us all!  I will google the Guts in Motion drive - a very worthwhile cause!!

Don't stay away so long next time


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## Spooky1

Hi Michael, 

great to hear about the ongoing issues as i'm similar to you.  things just dash straight through and cause me all sorts of issues.  i too have small intestine bacterial overgrowth and broccoli, i suspect, is as bad for you as it is for me!  its incredibly acidic i find.  lay off it if you want, lol, despite what wifey says!  I think things might get better once the ilieostomy is gone and that new to you (or second hand bowel, if you like) can do a proper job (no pun intended).

that cycle ride looks good, and great funds raised.

well done,  and i hope loads go your way in the near future.  its hard hanging on to any wight and energy with this sort of health.  you're amazing.


----------



## Angrybird

Hi Michael, as always it has been a pleasure reading your post 

Well done on the E-Patient scholarship!! Also a big congrats to you all on the charity bike ride, what an wonderful achievement :dance:

The temp is supposed to go down again over the next few days so hopefully you will catch a break soon with your hydration probs.

AB
xx


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## michaelseres

Tenacity said:


> Hi Michael,
> 
> Thanks for the update - I always enjoy reading your posts and you always make me laugh with your sense of humor!  It certainly seems like quite the journey you have been on!!
> 
> Do they have you on any medications to slow the transit time down - over here in the States there is a med called lomotil available by prescription only:
> 
> http://www.webmd.com/drugs/drug-6876-Lomotil.aspx?drugid=6876&drugname=Lomotil
> 
> Also, are you taking any psyllum husks like Metamucil?
> 
> Congrats on the E Patient Scholarship!  You are such a great representative of us all!  I will google the Guts in Motion drive - a very worthwhile cause!!
> 
> Don't stay away so long next time


Promise I won't, incompetance isn't a good excuse!!I had lomotil when I was very young which frustratingly didn't help. However I haven't tried Metamucil so will definitely explore that a little more. Thanks for staying in touch, I feel very lucky that forum's such as this provide me with the opportunity to create such great friendships. Take care x


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## michaelseres

Angrybird said:


> Hi Michael, as always it has been a pleasure reading your post
> 
> Well done on the E-Patient scholarship!! Also a big congrats to you all on the charity bike ride, what an wonderful achievement :dance:
> 
> The temp is supposed to go down again over the next few days so hopefully you will catch a break soon with your hydration probs.
> 
> AB
> xx


You know, I love the heat that's the irony!! as always your replies make me smile. Hope you are well at the moment xx


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## Angrybird

Still doing well at the moment thanks hun.


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## michaelseres

*My continuing journey from Crohns to a new bowel*

Monday, 20 August 2012

Bowel transplant phase two 
I knew from the age of 12 that anything to do with the bowel or rather my bowel wasn't going to be easy. Then 30 years later my bowel transplant comes along and bang I realised that everything else in the last 30 years WAS actually easy, well easy ish.

My wife, who writes so much better than me (gutted about that!) has filled you in on all the details and any street cred or dignity I may have had has definitely gone out of the window. My stoma and my backside have probably been talked about more in the last week than the start of the new X Factor series which began over here on Saturday. I guess though that is really what this blog is all about. Getting across exactly what my patient journey has been. Whether it is writing about crohns disease or my stoma reversal I just hope my experiences make others feel not so alone with what they go through. 

Without doubt these last 10 days have been some of the toughest I have faced going through my bowel transplant journey. Why? I mean it was only a stoma reversal. True and yes they were hard physically for me but the real reason they were the toughest was seeing first hand the impact it had on my wonderful wife. You have all heard me waffle on about how lucky I am to have amazing family support and quite often I guess, not deliberately, I have taken it for granted well never again.(or at least not too often)  And if I do and you hear or read about it then you have my permission to book a colonoscopy for me without sedation!!

Twice in the last ten days I thought I was gone. I'm not exaggerating and when one of the doctors tells you that it was lucky your wife was around then you realise things weren't great. My wife who, aside from being amazing, has coped brilliantly throughout all my illnesses but the expression on her face and the ashen look she had after I came round is something I cannot get out of my head. I could see how scared she was and that is something you never want your loved one to have to go through. It made me really understand how hard being a long term patient is on the ones we rely on the most. I know how lucky I am. I have you guys who support me constantly. I have an incredible family network as well as wonderful friends. In that split second everything hit me about how fragile life is and how much pain you put the ones that you care about most through. People have been wonderful and saying how inspirational I am but the truth is it everyone I have just mentioned (yes including you) who are the real stars and my wife and kids who are the most inspirational people I know.

The stoma reversal went well and I think my heamatoma is improving although it flipping well hurts and the next procedure to be done relates to my peg tube. Frustratingly I still need a feeding tube but the part of my peg tube that comes out of my belly is constantly blocking. I often have to bolus in my feed and that doesn't help so my surgeon will replace the front part of the tube with what is called a Mickey tube. This new tube will sit almost flat against my stomach, will still allow me to use it for feeding but won't dangle down the whole time. Hopefully that will be done this week and I should only have to go back to my second home for a day.

I guess I am now at the point where phase two comes in. The major part of my transplant has been done and those 5 words ( in case you forgot them "I can change your life") uttered by my surgeon nearly 18 months ago can actually happen. I'm not sure where this is all going to take me but it is going to be one heck of a ride. I didn't go through all of this to muck up my second chance. My hopes and ambitions may one day come true. Except probably the one where I see QPR lifting a trophy, but you never know. The term e-patient is one used far more commonly in other countries than here and means a number of different things. For me it is all about using my experiences to help others. To stimulate patient to patient interaction and to use social media in healthcare to give patients more of a voice and more of a say in their own journey but who knows where my own journey will take me.

What I do know is that I don't want my loved ones to have to experience again what they have just been through. Now back to the mundane stuff and my lunch time meds.

Catch up again soon, I promise!



Sunday, 12 August 2012Stoma Reversal 
Post surgery, I'm presently out of action but my wife's blog gives an update. www.the-transplant-wife.blogspot.com




Tuesday, 7 August 20123.45pm 
I would regard myself as a "seasoned patient". I mean I've had Crohn's for 30 years and in relation to its treatment and surgeries I think I know the manual and getting from A-Z. Bowel transplantation well that is a whole new ball game. There are so many things to be conscious of on a daily basis and just when you think things are ticking along fine and you can start to relax something smacks you in the face. 

I'm writing this in between ridiculously lengthy trips to the toilet. Sometimes it feels like I should put a bed, shower and kitchen in that room considering the time spent in there. You will recall that just before my torch bearing I had a bad week well those symptoms have returned. I have though learnt a bit more about my transplanted bowel since then. What I didn't realise that when you have a transplanted bowel the nerve endings that the bowel contains do not work straight after the transplant. In fact it takes a while for the nerves in the bowel to say hello to the nerve endings in the stomach and also to say hi to the nerve endings closer to your backside. You would think that in this day and age with mobile apps and blue tooth technology that a nerve to nerve connection would be simple.

I am reliably informed that nerve signals do connect at some stage relatively soon. For now though it means I am in quite a bit of pain. It feels like you need to go to the loo but there is nothing there. These symptoms seem to ramp up over a number of days whilst at the same time stoma output thickens significantly. I put in 3 or 4 litres of fluid at the same time to try and keep everything as hydrated as possible but you do start to feel a bit crap as the day progresses. At the moment I am trying to time my toilet runs against the Olympics schedule on telly. With GB doing pretty well (at least by our standards) I really don't want to be emptying stoma bags when there is the potential of a medal. What would be really good was if I could get in and out within the same time frame as a British Cyclist takes to win another gold. Yes I know that was a little patriotic but hey we don't often celebrate successes here. Oh and by the way Sir Chris Hoy has just won his 6th gold medal!

Tomorrow I am going back in to hospital at Oxford for some minor surgery and a stoma reversal. Of course I am delighted that the reversal is happening, it is absolutely a step forward. It is though being done for specific reasons. Firstly the dehydration issues that I continually drone on about haven't sorted themselves out and neither has the absorption problems. I am eating more now which is great but it is coming straight out in to my bag. For both problems to improve I need to use the length of my new transplanted bowel to help out. It does mean that checking on the bowel gets a bit harder. I guess it will go back to the old camera up the bum but hey us IBDers are used to that.

Ok, I started writing this at 3.35pm and it is now 6.35pm. About half that time has been spent in my "little cupboard" and it is time for me to disappear again so I am going to sign off. Will of course keep you posted over the next few days from life inside the Wytham Ward.

Oh one last think, our charity ride has now raised over £97,000. If you fancy joining us next year then watch this space. I'm going be there, come and join me...

Catch up soon


----------



## CorvusCorax

I wish you all the best with your re-connection....I had my entire colon removed and then had an eliostomy for one year and had my bowel resectioned (j-loop / ileo-anal loop) taken from my small intestine and made into a new bowel.  I had it done in one surgery and that was a major mistake - so bloated I thought I was going to lift off my hospital bed - lasted for about 2 weeks and finally I had some plain old yoghourt and that let out the most nastiest smelling fart - but the gas was gone!  I have had the j-loop now for 3 years and have had numerous bouts of 'pouchitis' and too many trips to the lou - but through diet ( I am not on any meds - only ferrous gluconate and acetiminaphen for pain ) I help ileviate my trips to the lou - sometimes I go about 30x a day.  Dehydration is an ongoing event - so soups, gatorade, juices, water and straight cranberry juice (for the kidneys) (I know it's nasty tasting but it acts like a teflon and does wonders).  
Again good luck with your surgery.


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## michaelseres

Thanks for getting in touch. Wow you have been through so much but it sounds like you have come out the other end. Thanks for the dehydration tips as that is still an on going battle for me. To say it has been an interesting journey is an understatement but like you we are here to tell our tails.

Hope that you keep well and please stay in touch. Cheers


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## David

Thanks for your continuing updates Michael!  I'm sorry the last 10 days were so tough.

*hugs*


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## Angrybird

As always thank you for the update Michael, sending lots of hugs and best wishes to you and your family :hug:


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## Terriernut

Michael, thank you for the updates!  May I say, I am sooo grateful you made it through!  May each day bring you more health.


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## michaelseres

I really appreciate the support from all of you. It definitely helps keep the spirits high. We all endure tough times in one way or another and I just hope that I can be there for you guys when you need it. Take care x


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## highlandsrock

Just read your story I'm amazed how positive you keep. How do you do it? 0 - 5 would make anyone weep!

Congratulations on your e-patient scholarship and the fantastic charity ride. This might be a slightly OT question but are you aware of anything like e-patients in the UK? I've looked on the internet and can only find the US scheme.


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## michaelseres

Hi there, thanks for the post. As you know I am based in Herts, UK and I have scoured the UK for e-patients and e-patient groups etc but like you have found nothing. I wasn't sure that I was going to adopt this name as it seems to only resonate in the US and Canada but I guess that I am hoping it comes here.

For me I am about patient to patient interaction and the benefits that it brings. I really believed the opportunity of better informed patients is key and will grow in the near future. maybe we will be the 1st e-patients. 

Am delighted to chat more as and when you want too.

Take care


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## michaelseres

*My journey from Crohn's Disease, via bowel transplant, to a normal life*

Sunday 2 September 2012

How do you define normal life? I'm pretty sure that my idea of normal life will be different from yours. When you are recovering from long term illness and major surgery the phrase that keeps popping up is "don't worry you will soon be back to a normal life."

After having a major setback a couple of weeks ago I have now been able to have some unbroken time at home and return to that phrase "normal life." Now that I've had my stoma reversed going to the toilet has taken on a whole new meaning. Somewhat frustratingly though I still can't always control when I am going to go and stepping in to the shower at 3am is still a relatively regular occurrence. I know that things will settle down sometime soon but it isn't always as quickly as I would like and I can feel the frustration brewing inside me at times. Like everyone I have my good days and my not such good days at the moment, though I think some of my not such good days are as much trying to cope mentally as my frustrations with the physical problems.

Whether it is as a result of my crohn's, my intestinal failure even my bowel transplant if I'm perfectly honest I have days now when I wake up feeling worn out by it all. I just want a normal life but as I said earlier what is normal? I mean the football season has started and my team qpr have lost 2/3 games which I guess is normal for them. I'd like seeing them winning a trophy to be normal but that would be more like a miracle.

I can always rely on my kids to inspire me and shake me out of a strop. Thankfully our eldest Aaron did very well in his GCSE exams. Yes some of you will still remember the old "O" levels and these exams are the equivalent. We all went out on the weekend to celebrate and it was so lovely to be a family again celebrating something for a change. Watching my daughter consume a pizza in record time sounds silly but actually it was fab.



A few days later we had our first proper day out in ages. We decided to go up to a museum to see a tour that never happened. (usual incompetencies) From there we went to Westminster and walked along the river. I was more knackered that you could imagine but it was so important for all of us to have this day out and be a "normal" family again. By mid afternoon I was flagging but loving it. So many things that we just take for granted in life become very important again after you haven't had them for a while. We sat and shared a plate of nachos whilst sitting on a boat anchored near the Houses of Parliament. For me it was an ideal place to drop my anchor and just take stock of how lucky I really am. A few jokes about the new bicycles that are now part of London life and we headed for home.



Throughout all of this dehydration has still continued to bother me. I am putting litres in on most days. Yes I still have the odd spoilt child, I can't be bothered strop. Something isn't quite right and my mouth is constantly very dry. The issue of the haematoma at the site of the stoma has not yet cleared and is flipping painful and then there is the saga of having this Mickey tube fitted. I know that I talked about having it done in the last post but the ability of the NHS to coordinate two doctor's diaries continues to amaze and frustrate me. In fact don't get me started as I can feel a rant coming on. Suffice to say, it hasn't happened yet.

So there you have it, my attempt to get back to normal but I am still not sure what that normal is actually meant to be. I have never wanted to be a person defined by my illness yet I know I am bowel transplant patient and that has to have an impact on my life. Right now I am trying to work out how all the pieces in the jigsaw that is my life fit together. The one thing that I am passionate about is using my experience to help others. For me that will always be part of my normal life.

Till the next time


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## michaelseres

*2012Bowel Transplant + QPR + NewsRoom+ Emotional turmoil = ME!*

Thursday, 20 September 



I spent ten days writing and then re writing this blog post as there has been so much going through this tiny mind of mine and I never knew how to start. Then about half an hour ago I was back in my own den of tranquillity, the toilet, contemplating the meaning of life (actually I was contemplating where the hell the toilet roll was) when finally it happened. No, not that thing. Oh crikey believe me no waiting there. I think I fell asleep on the loo I had been in there so long. What did happen is that the haze that had really engulfed me mentally for the last ten days lifted. From spending days debating the meaning of life with myself, questioning what the future was going to be like and if I really can make a go of it, worrying about how much Justine and the kids had been put through and finally whether QPR could gain enough points to avoid relegation I realised that actually I needed to stop feeling sorry for myself and just get on with it. 


Why was I worrying about a bowel transplant when you have Newsroom to watch? Please tell me that you have seen this one? For those of you who read my blogs regularly you will know that my all time favourite tv show was The West Wing and secretly I still want to be Sam Seabourne! Newsroom is by the same creator just based on a nightly news broadcast. I've attached the opening scene link below if you fancy a watch! 


And on top of this Aaron, our eldest has just started studying politics for A levels. He may not share my love of the mighty QPR but like him I studied politics and couldn’t wait for the debates to start. Having him come home and tell me his views on first past the post voting system well; it was like that same warm glow all inflammatory bowel disease patients must feel the first time home from hospital when you go in to your own bathroom and see andrex toilet tissue and not the thin hospital tracing paper on the wall.  It is amazing how this diverse range of random thoughts can go through my head. Some psychologist will probably tell me how strange I am; mind you I don’t need a professional for that.


There is always a lot going on when you are a patient especially a long term one. With Crohn’s Disease I was part of a relatively large community and got to know the drill. Intestinal failure saw me part of a smaller one and actually the range of potential options were not so wide so it was containable emotionally. A bowel transplant puts you in a very tiny community and for the first time that has found me wrestling with all sorts of confusing thoughts that usually I would have batted away. The overriding question has been whether my life really is going to work out ok? I mean this in three ways. Firstly medically am I one bad episode away from problems or am I doing exactly the right thing and it will all be ok? Secondly Justine and the kids are utterly amazing but what impact is all of this having on them? And finally I talk and talk and talk about the positive impact patient to patient interaction can have on your health and your life but am I spouting rubbish? Can I actually make a difference or am I a delusional patient who’s had too much morphine?


As my time on the toilet reminded me actually you just have to deal with the cards you are dealt and the only person who can influence the answers to any of those questions is me. In the bowel transplant team at The Churchill in Oxford I have world leaders so as long as I fulfil my side of the “contract” then I’m in safe hounds. I can’t answer the second question and that still troubles me daily. I just have to believe that as long as I listen to them and do my best by them it will work out ok. As for the final question; I really hope that in some tiny way I can help others. Maybe I will never be able to answer that one. I don’t do it because I want anything back I do it because I believe I have experienced a very long journey that can help others who are at different stages on their own. In some tiny way it can be of benefit to share experiences. After all isn’t the patient supposed to be at the centre of health care globally? 


I’m writing this from my hospital bed having been admitted after another relatively minor blip. What felt and still does feel like flu became temperature spikes and blood results indicate a viral problem. That combined with a small hernia at the site of my stoma reversal has put me back in for hopefully just a short stay. Yes physically I do feel rough but I know it will pass. 


This post has had more changes to it than any previous one. Not because my beloved QPR are yet to win a game in the Premier League, although that has caused a high degree of turmoil in my life but because this last period has just been a very hard emotional journey on my bowel transplant recovery. I try and be as open as I can about how I am feeling but I just couldn’t seem to adequately articulate what’s being going on in that pea size brain of mine. I guess that if you are still reading at this point it is either because you really have nothing else to do or maybe because you can understand a little of what I have talked about.


Worry, guilt, frustration and discomfort are words I often use when talking about my bowel transplant and now I will add confusion and guest contributor to the globally acclaimed QPR match day programme.



Till next time


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## Terriernut

Michael, you are indeed in the small minority...what 18 people I believe is all that have had bowel transplants in England?  You are ground breaking.  I bet you dont feel like it with all the ups and downs you've had though.

You are an insiration!  And when all this is done and you have your life back, I know you are the kind of person who will give back to so many.  Including your loving family.  You are so close to being back in the saddle, keep fighting.

Always....look forward, never back.  :heart:


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## michaelseres

Words of support and encouragement like yours are what help to keep it all going forward. Can't thank you enough. I know that my struggles pale in to insignificance compared to some so I should be grateful. You keep well too xx


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## David

Thank you for the continuing update Michael   I like how... what's the word for it... contemplative you're being.  I don't think it's the morphine talking.  Well, maybe just a TINY bit 

I hope your stay in the hospital is a short one!


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## steve55

Hi Michael,I read through your posts and it seems that the bacterial issues are a constant that wont go away. Given all the antibiotics you have been on, I imagine that your bacterial flora will continue to be out of whack or in an unnatural state. Perhaps a fecal "transplant" can restore the correct flora. I may be totally off base, but I think its worth suggesting and hearing what the doctors have to say to that.


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## Angrybird

Hi Michael, as always thank you for the update. I do hope you can be home again really soon.

AB
xx


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## michaelseres

Hi Steve many thanks for your kind comments and looking in to some suggestions. I'm in very detailed discussions with the dietician here about the various options so who knows which direction it will take. I know it is going to take a while for things to settle but we just keep going. How are you keeping? i see you are a new member so welcome x


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## Tenacity

Hi Michael,

Thank you for the update - it is always so nice to read your posts!

I'm so glad the mood lifted, and your spirits have improved.  I think its just amazing how much you have been through, and how you have remained so brave and strong, and at the same time, so inspirational to so many people.  

I think if you didn't have days when it hits you hard, there would have to be something wrong with you don't you think.  You are an incredibly strong person and so concerned for those around you and for your family.

There were times when I used to make myself sick with worry about the future, until I decided one day to just do the best I could, leave no stone unturned, and the rest was out of my hands.  At least I could look back one day and know that I could not have done more or tried any harder.  There is a certain peace that comes from realizing this.

Someone once told me that I should try not to worry because 90% of it doesn't happen, and the 5% that does, no amount of worrying could change  Much easier said than done, but so true.

Please let us know what happens and when you get to go home.


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## michaelseres

Hi Tenacity, you write so eloquently and make so much sense. I'm sending you a massive hug. Of course I will keep you posted. How are you keeping? I hope well or at least as well as you can be.
M x


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## Tenacity

Was thinking about you today, and wondered how you are doing?  You still in the hospital?


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## michaelseres

*From hospital bed to San Fransisco in 72 hours!*

5 Oct 2012 


The thing about recovering from a bowel transplant is the unpredictability; you are fine and then before you know it you are back in a hospital bed. I woke up feeling like I had the flu; you know that achy feeling, joints hurting and a bad headache. I never get headaches or at least I only get them when QPR lose (all the time at the moment), when I forget to sky plus The Newsroom and when the dog doesn’t stop barking at a squirrel climbing a tree that he has absolutely zero chance of ever catching. With a temperature that would spike I was admitted back to my “other” home the Transplant Ward.

It turned out not to be anything particularly troublesome just a viral infection that wiped me out and required another set of antibiotics. With my blood markers off kilter and my creatinine climbing it meant a stay of over a week. 

As you could read from my last post I had been going through a bit of a psychological dip and with this hospitalization on top I found it harder to snap out of this particular blip. On top of it all my picc line burst in two places. It became blocked (which really annoyed me) and then in trying to flush the line clear it burst. I knew deep down the moment it happened that they would not be putting another one in. It is a very real potential source for infection. Boy was I gutted though. It meant that I had to take my anti sickness meds in a different way. This time it was by crushing them and injecting them through my peg/j (feeding tube in my belly). To say they do not have the same effect is an understatement of epic proportions. I knew that I would have to be weaned off them at some stage but this felt like I was going cold turkey and I really don’t like cold turkey (it’s too tough and hard to chew). As I write this I am still taking my anti sickness that way although I am being sick now at random times so if you are reading this Lydia (yes another reveal – Lydia is the intestinal transplant coordinator at The Churchill), can I have the line back please!! 

I also knew that 28th September was looming and I was due to have a date with San Francisco. Should I stay or should I go? (Great lyrics for a song by the way if you ever want to use them) 
Ultimately the decision lay with my transplant team and primarily with my surgeon Anil Vaidya. There I said it!! Yes he is the incredible man I have been talking about without revealing an identity. I’m taking the view that if you know me by know then you know the hospital where I had the transplant so figuring out his name does not really require an IQ of Mensa proportions. On the Tuesday before he told me that I should make the trip. He said that he was entirely confident that if I ran in to trouble he could sort it and after all I was going to one of the finest medical institutions in America. To say I was delighted would be an understatement. Perhaps only the news that The Newsroom has been commissioned for another series or that The West Wing is returning would have brought a bigger smile to my face. 

So, just over 48hrs later and with the kids safely deposited with family and friends we flew to San Francisco to attend a conference at Stanford University School of Medicine called Medicine X. I was privileged to have been selected as an e-patient scholar and this was my first ever conference I have attended in my capacity as a patient. 


walking in to Stanford

The flight was fine although I loved watching people’s faces as I did my meds and connected up my tube to stay hydrated during the flight. It is the look of intrigue mixed with the “should I be worried about him?” that is so fascinating.

Justine and I arrived as Stanford mid afternoon, which was 10pm UK. Usually that would be anti sickness and meds time but I knew I had to adjust my routine whilst there so I held off as long as I could. Time difference doesn’t just play havoc with your body but you also have to work out very carefully what time you take your pills especially the anti rejection ones. I know I can’t miss a dose yet taking them at the wrong times is also not great. Oh the joys of being a patient.


part of the campus
Walking in to the conference was for me a real defining moment in recovery. In less than a year I had gone from bowel transplant to being at Stanford, mind blowing really. The conference itself was attended by a combination of patients, medical professionals, healthcare providers and pioneers of cutting edge technology that was being used or about to be used in healthcare. It was full on leaving my hotel at 6.30am and often not finishing at the conference until 6.30pm but I loved every minute. I knew it would be knackering and I knew I would feel rough at times but I desperately wanted to be there so I also knew I needed to just get on with it.

It was one of the most inspiring, informative, educational and fun experiences I have been lucky enough to have. My brain is still aching from consuming all the information; mind you it hasn’t been properly used for so long I am surprised it remembered what to do. (a bit like the QPR defence, it hasn’t known what to do all season) I listened to other e- patients tell their stories, share their experiences and explain how they have used social media to build communities, gain greater knowledge and really be an integral part of their own healthcare plan. They explained how by using their own experiences they have become a vital ingredient in the overall healthcare policies of hospitals, medical professionals and healthcare providers. Patients are right slap bang in the centre. On top of this I learned about the impact that social media and the digital developments in healthcare. From mobile apps to new websites to new technologies speakers explained how this was all focused around the patient playing a key part in health.

I met some incredible people who will undoubtedly become friends as well and hopefully by sharing my story I was able to provide a small insight in to what I am trying to do and what it has been like going through a bowel transplant.

After the conference we had a couple of days before catching the flight home so rested up and did a typical tourist tour around downtown San Francisco. The best bit was waking up to sunshine each day. It’s amazing how much better you feel with the sun on your back; yes I was careful, loads of sun block, cap at all times although much to the astonishment of my wife I did actually venture downstairs in shorts. I hate showing my legs, not I might add because I hadn’t waxed!!

So with presents bought for the kids it was back to London and yes rain. I’m looking out the window right now and it is pelting. Even the dog is depressed.

If there is one thing that I wanted to convey to it is this. No matter how tough things are as a patient try and live your life as well. None of us know what is around the corner. I would never have gone had my surgeon said no but he didn’t he said yes and I went. Believe me if I can then you can, may be not today and maybe not tomorrow but one day. 
Till next time


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## Tenacity

You back home yet Michael?


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## michaelseres

yup, home thank goodness. How's you?


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## michaelseres

*My bowel transplant journey continues....*

Sunday, 25 November 2012Patient/doctor relationship, is it the ultimate trust you can have in someone? 
I talk a great deal about what it is like for me being a patient and specifically a bowel transplant and inflammatory bowel disease patient. Actually being a patient though isn't just about me the patient it is about finding a doctor then building a relationship like the one that I have with my transplant team and specially with the guy who is at the top of the tree my transplant surgeon Anil Vaidya. You see when you go through chronic long term illness you build up a relationship with your doctor that is quite different to most people who go to hospital. Then when you go through transplant and require long term care that relationship goes up on to an even higher level that you can imagine. It is not like a routine bit of surgery where you can often feel like just a number on a list here you really build a one to one connection and that is as scary as it is fantastic.

The last week has been a pretty uncomfortable one pain wise and it has only been in the last 48hrs that I have actually been able to stand up relatively straight. Being challenged in the height department (no, before you ask I don't suffer with short man syndrome) means that my wife is forever reminding me to stand up straight, I mean it doesn't exactly do my credibility much good when my 12 year old daughter is almost taller than her dad. Managing to stand up bizarrely also coincided with actually going through a couple of days without having an accident. Quite how the two are connected I doubt any medical genius could work it out, mean what has walking around like the hunch back of notre damn got to go with random stool action I have no idea but the timing was the same so that will do for me. It also coincided with a visit to my surgeon for a further check up.

I stood there with my top pulled up under my chin and my surgeon telling how great the scar was looking and how symmetrical my belly now looked. These conversations weren't quite what I had in mind as my life has gone on but now, hey a symmetrical stomach and a wound one of the world's leading surgeons is happy with is nothing to be sneezed at. On the car journey up I also heard that my football team had sacked our manager so all in all it was a good morning. We then got on to the topic of the future and what next. Anil has always been very good and basically telling me that I should go and do anything I want to do, to go and achieve my dreams and live my life and when things go wrong he will sort them out. In reality he has sorted things out and with that comes a confidence like nothing else you can experience. But as I said early it is also really scary. You see the question that entered my head then is what happens when he isn't around? What happens if one day he leaves, he pursues a career elsewhere and he is not there to take my call or give me the pep talk I need? He has been my surgeon, yes my personal surgeon, but he isn't is he and the transplant team are not my personal team. Marion isn't my personal dietician. No they belong to the NHS and the Oxford Transplant Unit and that is very scary.

I hadn't ever thought that they wouldn't be there for me, how dare they want to have a career elsewhere, how dare they potentially go on to greater things. Of course I don't mean that but you catch my drift. You see this whole journey is like no other and it is only when you go through a medical journey that takes you right to the edge that you really appreciate and understand how close and attached you become to those that care for you. They become your second family, the one you literally have trusted with your life, they know you like no one else, even your mum and dad can do. Going right back to that walk to theatre, holding hands with my wife Anil would have been the only other person who could truly have known how scared we were and how that walk could have been the last time we held hands.

So is it is a good thing to have such a trust and confidence in someone who may not be there one day? How do you deal with the whole doctor/patient relationship especially given what you go through together?

For me I guess my whole reason for turning to social media and for building on line relationships is where I find my answer. The world is actually so small and connecting with people is so much easier today than ever before. With technology in healthcare growing daily actually my team can be anywhere in the world and I can still connect with them. I recently watched a video of a brain operation that was tweeted live http://youtu.be/dxJvbi6tW88 and if this is the future then should I be worried?

Connecting is one thing but could I ever imagine actually being treated by another surgeon. Right now the answer is of course no way. I don't have to even worry about that right now so I guess what I should do is exactly what he would want me to do and try and live my life to the fullest it can possibly be. Now that bit is a challenge I will take on no matter what. Do I still feel fragile most days, absolutely I do. Do I still have pains, worries and concerns, absolutely I do. Will they stop me, of course not; I just now have to tell my brain that it is ok to give things ago and if and when it goes wrong then I have the best team in the world to look out for me - wherever they may be.

Till next time
xx 


Monday, 19 November 2012When Mr Armani was joined by Mr Gucci in Bowel Transplant Land 



There is an old adage that a week is a long time in politics; well there should be an adage that a day is a long time healthcare especially when you are a patient. I started the week by going back in to hospital for what was supposed to be a minor and routine hernia operation. The only slight complication was that it was at the site of the stoma reversal and that made closing the site potentially more difficult.  


Everything had started as a niggle; I constantly felt in discomfort and it sounded like a blocked drain every time I ate. Food would go down and as it hit the hernia site huge gurgling would start and then it was as if the drain would unblock and the contents would flood out. Gurgling became louder and louder and pain got worse and no amount of self plunging seemed to clear things. (I’m not sure that the medical term “self plunging” actually exists in the British Medical Journal but you get my drift). Sitting in the waiting room before going to theatre my surgeon and I chatted about if things went well then maybe I would go home that day. I must remind him not to choose my lottery numbers in future.


I woke up several hours later back on Wytham Ward in real agony, connected to a pain relief pump and with a drain attached to the wound. My initial pride at having the hernia described as “a corker” was soon replaced with the realisation that I couldn’t actually move properly and that the surgery had taken much longer than planned. In addition I had always prided myself on my Armani style zip that went vertically down my stomach. In truth it was just a series of scars all in the same place that have been repeatedly cut out and replaced by the next season’s style of scar. This time though Mr Armani was joined by Mr Gucci a 6 inch horizontal scar across my stomach. The wound had also required a double mesh to be used to try and keep things in place and then the skin was actually glued back in place in the hope that it will stay fixed. So not only do I have Armani and Gucci fashion accessories but I now have an arts and craft store permanently on tap to place with. If anyone is connected to Hobbeycraft then for a small fee I will advertise their wares on my body. Think of it as the new telemedicine advertising.



At home I feel that I have been walking around like quasi modo as it is proving a real challenge to stand up straight. I also picked up an infection at the site of the wound and am on antibiotics. I’m not sure whether it is the new meds, the effects of another anaesthetic or simply my bowel going “for goodness sake when will you leave me alone” but the time spent on the toilet has been huge. It can also be at any time of the day or night and I have found myself either asleep on the loo a 2am, in the shower at 3am and contemplating the meaning of life on many different occasions over a 24hr period. I am thing of putting an office in there and a camp bed then I probably won’t need to leave. Also it has crossed my mind at times to actually throw my food straight down the toilet bowl as it would save a whole lot of aggravation waiting for it to go through my own plumbing works and back out again. Surely cutting out the middle man makes sense. And following my new innovative sponsorship strategy I am a one man focus group for any toilet paper company looking to launch a new luxury brand. Andrex 3 ply are my favourites by the way J


I don’t want to paint a total picture of frustration over the last week especially as has been one monumental breakthrough. Yes folks a fridge that is now in the waiting area on the ward and can be used and accessed by patients 24/7. Up until now the only fridge I have been allowed access to as an inpatient is the one in the kitchen (let’s be clear it is not a kitchen in the sense that you and I know – it is a place where a microwave, fridge and dishwasher exists) which is constantly locked and relies on the complete kindness of nurses to get you access to it on an ad hoc basis. If the nurses are busy which invariably they are then it means getting your own food can be really challenging. This fridge is ground breaking.


This week has seen my usual blood test challenges and attempts at re-siting cannulars. Putting one in a tiny vein in my index finger was interesting to say the least and I have been working on the basis that they last around 24hrs before tissuing. I tend though to take all these things in quite a blasé fashion. In a way taking bloods or sticking in needles to difficult patients is just as hard for the doctor as it is the patient. Some run a mile and some see it as a real personal challenge, I just want to know if one of them would be brave enough to let me have a go at jabbing them. Come on, man up!!



So there you have my week in a nutshell. I made a serious of very short videos whilst in hospital. Here is the first one if you fancy a viewing and the rest will be up on my You Tube Channel. http://youtu.be/IZG9u0EBCSo  Yes I know that I am not President Bartlett or even the legendary news anchor from The NewsRoom but you can’t blame a man for trying. I mean this is reality tv on a shoestring budget. I have to write the script, act the part, be director, producer and editor all rolled in to one. What more do you want from a humble bowel transplant patient.
Till next time


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## moogie

Wow this is quite a journey you are having.

I just want you to know that you have our support.

Good luck HUGS


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## KayleighMeek

Wow you have been through a lot but is nice to read that you still keep your sense of humour, I especially liked "Also it has crossed my mind at times to actually throw my food straight down the toilet bowl as it would save a whole lot of aggravation waiting for it to go through my own plumbing works and back out again" I have thought this a few times and have said to my family when I have had flares.
I will have to look at your other posts you had a very interesting story do thank you for posting


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## michaelseres

Thanks Kayleigh. It has been a journey but hey you have to keep smiling don't you. Think we have all had those "plumbing moments" when it seems just easier not to bother but then when it works it is such a good feeling. 
Hope you enjoy the read and if you ever have anything more to say or ask then I would love to hear from you.
Take care
Michael


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## Terriernut

Michael, as usual I enjoy your updates.  But I was hoping you were planning a ski trip this time, instead of enjoying the luxurious accomadation in hospital!

Having the parastomal hernia from hell myself (operated on once already, FAIL) I can relate to that OP at least.  I too can do the shuffle at an alarming forward pitch after OP, and the others.  Yes indeed.

I do think it is the antibiotics that are causing you the inglorious pleasure of the loo.  Soon it will pass.  Or at least I certainly hope so for your sake!
:kiss:


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## michaelseres

so lovely to hear from you Misty and thanks for the advice - really do appreciate it. Hope that you are keeping well at the moment. xx
Just hoping your advice proves to be right, there is a limit to how long a man can spend in the loo!!!!

Take care
M


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## Terriernut

Erm, I've managed to spend up to 24 hours there at one point in my life.  I just got a pillow and blanket and slept in between.  Thankfully it passed.  After the stoma anyway!  

You must be tired...as hard as it is, keep looking forward tomorrow has got to be better!


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## Trysha

Thank you Michael for your interesting story.
It is amazing what the human body can take and it sounds as if you have had more than your fair share of the slings and arrows of outrageous fortune.
Sure puts my own situation into a minimalist position.
Think I will never complain again.
Hope your situation improves greatly for you.
Humbly
Trysha


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## michaelseres

*Retraining your brain to flip out of patient mode is so hard*

I have only really heard of the term “flip flopping” in connection with UK politics; in other words when a political party keeps changing its mind on policy. However at the moment I think it best describes the challenge that lies ahead in getting to grips with my bowel transplant.
It is not like my new bowel is flip flopping but it is what my brain and my mind set has to do. You see the trouble with long term illness is that you can forever be a patient and forget what it’s like to just be you. I have really only not been a patient for 11 years of my life and now, here I am having gone through one of the rarest transplants, being told to get on with my life and try and adjust to not just being a patient but being Michael. And that is flipping hard. 
For most people the moment you are out of hospital you are fine and there is nothing wrong with you. They don’t see the accidents at 3am and they are not there when from literally nothing I start being sick and it doesn’t stop which is exactly what happened last night whilst watching I’m A Celebrity Get Me Out of Here. So for me there are parts of every day when I feel a patient yet I need to train myself to get out there, do all the things I want to do, put being a patient in a box and get on with life. How do you do this? How do you flip flop from patient to non patient and back again? For me when I have the good spells and feel great it gets much harder to revert back to patient mode when I get sick. I find myself getting frustrated, even angry yet that is totally irrational as I am transplant patient and that doesn’t leave you.
Often the easiest things to say are the hardest things to do and lead to silly reactions from me. I fight very hard not to be treated as someone who is ill; yet quite naturally the first thing people want to know is are you ok. I would probably be very upset if they didn’t so why get angry. So as you can see training the brain to flick a switch one way or another constantly is not so easy. I mean take one of my favourite programmes right now Homeland. 

How does Brody cope with playing both the terrorist and potential Vice President? Is Carey in love with him or has she trained her brain to be able to simply tease him in to doing all she wants? Hey I know it is only tv but it would be so cool if I could have a script writer come in and just write my week out for me. I could go from one scene to the next, ill patient one minute, recovering patient the next then on to normal dad and hubby before ending the episode back in hospital. We could then all sit down and have a cup of tea in between takes. That would be so much easier that having to do this in real life.
So as farfetched as it may sound I am on a mission to change the world that I live in. To try and make an impact on the lives of patients undergoing similar experiences to me but at the heart of that my brain then flip flops in to patient mode, I get unwell and think what the hell is going on. Hey I would love to emigrate and live in a warmer climate and have a better quality of life. One side of my brain is like, for goodness sake get on with it you lazy lump; the other side is like – yeah right who do you think you are?
And there you have a typical patient dilemma in 600 words. Can a long term patient ever truly stop being a patient in some shape or form? All I know is that if you keep going on about how ill you are then you will probably stay ill and that is a mindset you can do something about. I mean take my 95 year old Grandma. She is one truly amazing lady but every day she will moan about an ache or pain somewhere yet we know that if you talk to her about something else she will forget about it. Then she gets diagnosed out of the blue with breast cancer and brushes it off with the bravery so many wish they could have. What is it inside your head that says ok I am going to moan about a bit of trapped wind (mind you that can be painful) yet when I get a really bad illness I am going to be a strong as anything about it?
Whoever said that being a patient isn’t easy was a genius (yes it was me ) but being a patient then flipping to being well and then flopping back again, well that is a whole new ball game.
Till next time


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## SarahBear

Hi, Michael!

I'm sorry you're having such a rough time.   I'm wondering, how long have you been diagnosed?

I don't have as much of an issue with the "patient mindset" as you do - but I can absolutely see where it would be a problem.  In normal life, you're in control of everything you do.  However, so much of our lives are dictated by our health and what our doctors say.  It can be very difficult trying to maintain control of your own life while still keeping up with your health.

As far as your Grandma goes, I think a lot of us have adapted to act the same way.  My stomach hurts, and I'll complain nonstop about that.  But I don't complain about having Crohn's.  When I was diagnosed, I wasn't upset - I thought, "Okay, well, where's the treatment?"  For me, I'd been having stomach problems for so long that it was normal.  It was just part of my life.  The diagnosis only meant that we could finally do something about it.

I hope your transplant goes well and you can get to feeling better soon!


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## 2thFairy

The flip flopping can be very very difficult indeed.  I've been in and out of patient mode so many times that it's gotten very boring.  Like many here, I found a mindset more on the positive side that made getting through the ins and outs of health much easier to deal with.  The unfortunate part of that is when I am feeling at my lowest with pain, diarrhea, stomach issues and just bummed out, many peope around me (including doctors) don't realize just how miserable I am and fail to recognize that I need help.


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## michaelseres

A transplant patient or just a patient?  What defines you?

Well this is the first time since August that I have been able to write a blog post with my football team QPR finally having won a match and secured 3pts. Fulham fans, this one is for you  http://youtu.be/YE2XSm5-xRk
Yes the QPR revolution is off and running and into phase 2 of the season. My own bowel transplant journey is also probably now about to go to the next phase and whilst that is hugely exciting it has thrown up more questions than answers. In essence it mirrors the lives of many patients so just because I have had a transplant why should that make any difference?
Last week saw me have a full review of all my blood results and a detailed discussion with my dietician Marion about next steps.  (as it is Christmas please say hello to her on Linked In she needs more connections so I’m on a recruitment drive) http://www.linkedin.com/profile/view?id=82754883&locale=en_US&trk=tyah whilst the transplanted bowel is generally doing ok the principle remains that if it goes wrong it will somehow get fixed as long as I remain totally focused on keeping everyone updated on any new symptoms. With other levels it isn’t so easy. My lack of absorption has meant that I am deficient in a few areas such as iron, magnesium and vitamin D but infusions should sort them out. What do most people do before Christmas, they shop – me, I get my infusion. Mind you it is holiday season so I am expecting a buy one get one free offer from the NHS.  The other issue remains hydration and ensuring that there is no damage to the kidneys. The issue there becomes a lot harder to sort out as it is the anti rejection meds that can, in some patients, really cause havoc with the kidneys. I pretty much know the levels I need to be at and to stay in the safety zone I will need to stay on fluids about 5/7 days of the week with them going through my Mic Key button in my stomach. It isn’t a disaster I know. I mean real disaster would be QPR relegated but what it does do is bring home the fact that a bowel transplant is not your ticket to easy street. You replace one set of problems with another and it is how you cope with these new issues that I think determines what the future holds.
So why is this guy mentioning all of this I can hear you say. Well it is simple. It means that you have to either continue or become and engaged patient, an empowered patient, an educated patient. All of that seems to fall under the term E-patient and when you mention the word e-patient most people thing; what is he droning on about? 

Actually I would argue we are all e-patients as let’s be honest when we are a patient we are usually engaged in what is happening to us and we become educated either ourselves but finding things out or simply but listening to what our doctors tell us. So as I enter my own personal phase 2 I would like to think that I have become an i-patient. What the hell is he on about now? 
I-patients are in my view, interactive patients. Patients who interact with all aspects of their healthcare. From the doctors and medics to the hospitals, the pharma companies and above all directly with other patients using and sharing their experiences for the greater good of everyone. These days the world is as small as ever and social media makes it even smaller. There is nothing a patient cannot find out if they choose too and to use the well spoken phrase “no decisions about a patient without a patient” put patients right at the centre of healthcare for perhaps the first time ever. So to take advantage of that position a patient has to be interactive. To use their data, to get another opinion, to share a thought or a story patients, in my opinion, have to be proactive and not reactive so from now on perhaps i-patient is the new e-patient.
With that interactivity in mind I want to end by mentioning one thing. I have the huge privilege of being the patient advisor and speaker at the up and coming Doctors 2.0 & You in Paris, France. http://www.doctors20.com/ . You can join me too. Calling all i-patients, if you want to come to this conference check out our video on the crowdfunding site http://www.medstartr.com/projects/113-doctors-2-0-you-funding-epatient-travel-scholarships and if you fancy having a coffee with me in the beautiful Parisian sun then apply or contact me for more info.
Till the next time


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## Angrybird

Thanks for the update Michael, as always it has been great reading.  I hope you are able to have a nice Christmas and I will be keeping fingers crossed for QPR for you


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## Tenacity

So nice to hear from you Michael. Thank yoh for sharing your journey with us. We are all learning so much from you. I wish you and your family a special merry Xmas. Good luck with your trip to France!!


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## michaelseres

*Was 2012 the year of the patient?*

This is now my second Christmas since my bowel transplant. Last year I had been out of hospital for a day post my transplant surgery and this year I am thankfully in a much better place. The odd cracks are starting to appear but I’m banking on them not being anywhere as bad as the transplant itself. One of my current challenges is where to inject my anti sickness meds. I take them intra muscularly and a the moment I don’t have that much feeling left in my left leg and better still when I sometimes inject in that leg I can see the liquid spurting out of another hole in the leg that hasn’t yet healed. It is probably something that Darren Brown or David Blane would be proud of but actually it blooming hurts and what a waste of good, beautifully matured neat cyclazine.
Perhaps the bigger challenge is staying hydrated and that is proving a little more difficult with each passing week. It is a difficulty perhaps only matched by my football team who after one victory have reverted to type and lost again. Actually our defence is a bit like my legs right now, full of holes and always leaking. It is a complicated process combining anti rejection meds with preventing kidney issues but hey life is all about challenges so I have no doubt we will sort this one out. I think, I hope, actually I really hope.
So I am guessing that if I was to give myself an end of term report as a patient it would probably be a decent grade for effort and completing my homework and the usual teacher phrase of “could do better but still pretty good” when referring to the body itself. I have never been a straight A student so hey it isn’t bad.
That is me as a patient looking after my own health but what if there was an overall grade for patients in 2012. I think the teacher would have to state that there has been a dramatic improvement since last year; the level of classroom engagement has increased enormously and now the challenge is to keep that up and move on to the next level where patients really do ensure changes happen. I am absolutely convinced that 2012 has seen patients really put their heads above the parapet and really increase their voice in the world of health care but I guess to take it to the next level it has to be all about change and impact. I think that it is inevitable that those, like me, with long term conditions tend to engage more than those who may be unwell for a short period of time but return to good health in a matter of days. However the key thing in my opinion is that it is the sum of all of us that makes patients such a potent and powerful voice. In all walks of life there are those that are happy to be a little more vocal or push a little bit further but with those patients may be considered i-patients and more interactive we are actually nothing unless we all work together.
I guess in my own little world I see things in healthcare as no different to government or any national or international organisation. You can have Presidents or Prime Ministers or Ambassadors but they are really figureheads for us all. Patient leaders are the same and quite often it can be all too easy to get caught up in lovely conversations with people that you think of as your peers talking in wonderful circles about how patients will change everything and what this one or that one has done wrong. Talking at that level is fantastic, it is intellectually stimulating, it is thought provoking but it is often not the real world. I have been to a few health conferences now and even spoken at a few and the buzz word(s) is always “patients” or “patient engagement” but often that is marketing speak. 
How many really know what it is like to be in a waiting room when there is not enough room for patients to even sit. How many have talked to patients who have to stay in a treatment room because there are no beds on the ward or have to get admitted as an inpatient for a few hours in order to get an urgent test done? Better still how many have experienced what it is actually liked coping as a patient, being served food that is inedible for the 10th day in a row? These are real patients who need to be embraced and taken with on the journey for real change to happen within healthcare.
So to answer my own question I think that 2012 has seen massive advances by patients. The self management via social media has been huge, patient communities are growing, how we now engage with our doctors is changing so rapidly it is amazing. As engaged or interactive patients we now have a duty to share our experiences with the wider patient communities and then 2013 can be the year that patients affected change. I am going to try next year and use the hashtag #patientpower as I truly believe that it is what can change the way healthcare is delivered forever.
As for right now, well I have a few Christmas wishes I want to pass on. To my transplant team at Oxford, who I am sure will read this, thank you from the bottom of my heart for continuing to change my life. To all patients but especially my bowel disease friends I hope that 2013 bringing you happiness and the health you deserve. And finally to Harry Redknapp and the team at QPR – we have a manager we could never have dreamed of having a few seasons ago so get your act together and sort yourselves out otherwise I will be sending you all for a colonoscopy without sedation!!!
So the kids are nearly finished catching up on an episode of Merlin and then it is off to make another batch of chocolate brownies for my daughter’s party on Thursday. My son kindly misread the instructions on my first batch and let’s just says that 1 teaspoon of salt ended up being a few tablespoons – enough said!!
Thanks for reading my blog, following me on social media and engaging with me, your support and friendship makes it all worthwhile.
Till next time


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## Tenacity

Michael thank you so much for the update. So good to hear from you, and so grateful to you for sharing your story with so many people all over the world. 
I am following your thread with great interest, and am learning a lot from you. 

You have been through so much over the past year, sometimes we have to remind ourselves of how far you have come compared to a year ago!

Those intra muscular shots are not pleasant.   Can you alternate between both arms and legs, thereby only inject the same limb every 4 days?  I wish there was another way for you to take these meds. 

Hopefully 2013 will be a year when our voices as patients are heard, and changes are made to the healthcare system.


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## Terriernut

Michael, well said, yes we patients are starting to find our voices now and it is past time!

As always, I wish you continuing improvement and may 2013 be YOUR year!


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## michaelseres

*The end of the year doesn't mean the end to being a patient!*

As the clock chimes midnight it is out with the old and in with the new except as a patient that one chime doesn’t actually make a difference does it? Or am I wrong? The turn of the year gives you a chance to set new goals, make new plans and start up new things but the one thing that doesn’t change is being a patient. Does that mean your mindset has to stay the same though – I think not!
My Christmas was a bit like santa’s relationship with chimneys – lots of ups and downs. I picked up what I assume was a virus and ended up back in hospital for a few days. With me a virus seems to always lead to dehydration and with my kidney function going off quicker than a turkey left out of the fridge I soon found myself on antibiotics, a drip and with an abscess on my leg from all my injecting that has now turned in to a lovely great big hole. All of this and I just wanted to be out ahead of celebrations that had been planned. 
Frustratingly I missed two major deadlines, my daughter’s 13th birthday and my 21st anniversary but I did get out in time to share New Years Eve with my wife.  I also managed to be around for my daughter’s bat mitzvah & disco – although not eating for 2 days to ensure I could make it through the disco was an interesting challenge. I then managed to appropriately embarrass her with my speech, which I thought sounded cool, it contained a twitter hashtag, references to facebook and everything else teenagers use these days. Perhaps it was the fact that I have more twitter followers that upset my little lady.
I hadn’t really appreciated the effect that my back and forth to hospital was having on the kids until this holiday. I stupidly assumed that they took it all in their stride and that it was almost part of life yet this time it really hit them hard. I saw the odd posts that they put up, heard the reactions on the phone and then saw the look in their eyes and it really made me realise the massive affect this all has on them.  I think that some of this was due to the fact that I hadn’t been an inpatient for a few weeks so they got used to having me at home and some of it was the fact that I went for routine bloods and ended up staying in so it was unprepared. Finally there was the time of the year so it was no wonder the kids and my wife got very down over the whole thing.
So you see the journey of being a patient or the trials and tribulations of being the loved one of a patient doesn’t alter based on the change of a number. In essence those elements are out of your control, what can change though is what you wish for and what you are going to do to try and make those wishes come true.
For 2013 what will I be doing to make my wishes come true? My biggest wish is for stability in our lives and for my wife and kids to have a year free of the upheaval that has been there for so long. What can I do to make these things happen? In simple terms I can make sure that I do everything possible to give them the normality they deserve when the times are good and just hope that when we have a few blips they remember many more good things than bad. To deliver on my wish though involves so many things some in my control and some not. I guess that herein lies so many lessons for so many of us. These are my thoughts for what they are worth. I can’t guarantee that I can follow everyone though so I would welcome your thoughts.



1.	Focus on what you can control and don’t stress about what you can’t.
2.	Live every day to the maximum. In other words control what is right in front of you and don’t worry as much about the future because no one knows what the future brings.
3.	Listen to your gut instinct (if you excuse the pun). I think that I have learnt the hard way that often by following what you really think as opposed to over analysing things you can actually make better decisions.
4.	Remember who really counts in your life. Focus on those that really mean something to you. My biggest issue is always saying yes and I’m not sure how to change that so by remembering who really count in my life I am hoping that I can prioritise the “yes’” a lot better.
5.	This is my personal mission. Use your experiences to help others. I cannot start 2013 without ever forgetting what the team at The Churchill in Oxford have done for me. I rely on them for so much and therefore want to ensure that what I have been through can be harnessed and in some small way help other patients. And with that comes my mission to be proper I-Patient – and interactive patient.
Wishing every one of you a very happy and healthy 2013 and a peaceful one. May all your dreams come true.
M


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## Terriernut

Oh Michael.  You and your family have been through so much.

Sometimes we do indeed forget the most important things, the moment we are in, 'the present' and the core things, our loved ones.  But I dont think you do.

I think you are feeling guilty for being ill.  And it's understandable that you feel guilty when you see the looks in their eyes.  But I think they must have a deep fear of losing you at the heart of it.  To be living 100% in the 'present' in the moment with your loved ones is the best 'New Years' resolution one can have.

The fact that you are alive, is a most wonderous gift to your family, and I believe they know it very well.  I'm grateful that you are here among us on the forum too.  Thank you!

If our paths ever cross, it would be an honour to meet you.  I'll make a caserole, we can have a nosh!


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## michaelseres

I always really appreciate your kind and thoughtful words. It would be a huge honour to meet you in person one day. We have to make it happen. How are you keeping at the moment? Hugs for a happy and healthier 2013.


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## Terriernut

I am keeping well for now, and grateful for it!  I am not far from you, just up the M1.  New job now in Hemel Hempstead and so far so good this year!


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## michaelseres

wow, literally up the road. Good luck with your job. Am definitely happy to meet up. Just say the word. Hugs


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## michaelseres

*Interactive bowel transplant patient bags a truly interactive medical team*

Sunday, 27 January 2013


I feel a very lucky patient. Yes I underwent a rare bowel transplant but I don’t believe that any patient including me can cope with chronic illness or major life threatening surgery without having a team around you. I have written a great deal about the importance of my family and friends but one vital part of what could be affectionately called “Team Bowel Transplant” is the medical team. All my desire to be a good patient, a compliant patient and a patient who thinks positively about the future is underpinned by the health care professionals that I surround myself with. In an age where information is literally at our finger tips and where patients are such an integral part of health care you still cannot do this alone and the relationship that you build with the team looking after you is critical.


My own bowel transplant team is, as I have mentioned before headed up by the lead surgeon Anil Vaidya. It is his relationship with me and the way he treats me and his other patients that actually defines the type of patient I have become. I bang on that all patients are e-patients because fundamentally we are. Like all of you I am empowered, engaged and equipped it is just whether we choose to act on these things. An i-patient though (interactive patient) has to have someone to interact with for it to be completely true. We can all interact with other patients, with new digital health technology, medical apps etc but to be a truly interactive patient you have to have an interactive medical team. In Anil and his team I am incredibly lucky to have that person.


Let me give you an example of what I mean. I am still trying to sort out the abscesses on my legs and one is being re dressed every few days and actually currently hurts more that I thought it would. At the last re dressing the nurse thought that it wasn’t looking great and I needed to go back and see Anil. So I took a photo on my mobile and texted it over to him. He responded with a question, I then emailed with back with a further picture attached and a few minutes later he asked me to come in to see him the next day. I came in and he already had treatment options worked out. All of this took about 10 minutes of interactive communication and he knew exactly what to do. 


How often does that happen in healthcare at the moment? Certainly more than it did 5 years ago but I suspect an awful lot less than it should. As far as the abscess goes it was a 50/50 call whether to cut it open, incise it  and take out what is called a shelf under the skin to help it drain better. He decided to leave it a little longer and use a form of seaweed to clear it out. Meanwhile I have to say that it flipping hurts.
So what makes Anil stand out as such a forward thinker and an interactive surgeon? For a start you have to have a person that truly cares and always thinks about things from the perspective of the patient. I recently asked him about his views on treating a patient who he felt had perhaps contributed to their own ill health and therefore some might ask why they should have the treatment. His answer summed up his approach. “Most physicians and the general public do not view it from the person’s perspective. One needs to walk in their shoes for a whole day before passing judgement…”


His single minded determination to breakdown new medical barriers is a second reason his interactivity. Anil trained at the world renowned transplant centre in Miami, USA. After finishing off in Miami, he wanted to be closer to his parents and thus looked for jobs in the UK. The Oxford Transplant Centre was just about starting the pancreas program in 2004 and he was able to help right from the beginning. His ultimate goal was always intestinal and multivisceral transplantation and with the help of Prof Friend, Oxford got designated as a centre in 2008. He recently did the first abdominal wall transplant in the UK, and his programme is the only centre active in the world offering this service.


Finally there is his desire to embrace technologies that allow patients, medical professionals and students to truly engage. I am currently discussing with him potentially tweeting from the OR. His response “About live tweeting a kidney transplant. I’m sure it is possible and exciting!”


The reason for focusing on all of this today is that whilst I am incredibly passionate about patient engagement no patient can do this alone. Total patient interactivity and engagement relies on partnership. I am not convinced that many HCPs are ready for this. In Anil Vaidya you have one of the best examples of true patient/medical partnership.


The current bowel update is one that is generally positive. I feel that I am in tinkering mode at the moment. I am having my vitamin D and various other levels checked in detail to see if there are any other deficiencies. I have been put on a digestive enzyme to see whether my absorption will improve. This will be checked again in a week and then we will go from there. I am also having a follow up with the doctor who deals with the botox in my stomach. The sickness hasn’t gone and although it has improved I am still sick up to 4 times a week for no real reason. Perhaps I needed to ask for a tummy tuck at the same time as another injection. 
In the background to all of this is the fact that I still have my picc line but need to wean myself off the anti sickness meds. Anil has set me specific dates and targets that I have to work to as the picc is a high infection risk but whilst the sickness is there it isn’t easy. Oh well just another challenge to sort out.


Sadly I have end my blog post with some bad news. My beloved QPR have been dumped out of the cup by a team two divisions lower than us.  

QPR 2 MK DONS 4 

An all time low. Or maybe tactical master plan by our genius manager to rest all our key players for one final push for survival in the Premier League. 


Till next time


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## brooke206

brilliant post- great to hear of a consultant who actually consults, although I suspect NHS 
chiefs won't be too pleased to hear they have an approachable and interactive member of staff. very very good luck with everything go blaze  a trail lol


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## michaelseres

Thank you Brooke. Yes he definitely goes completely against the grain and ruffles plenty of feathers. It won't stop him or me though - it is what all patients should expect, right?


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## Jam300

Sounds like you have a great team behind you, congratulations and thank you for sharing. Perhaps your story will encourage others to seek equally proficient doctors if they're unhappy but don't believe theres much better out there (i've seen a lot of this attitude).

In short i'm glad your doctor has more of a clue what he's doing than 'Arry, you've many more puzzling decisions to look forward to!


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## brooke206

michaelseres said:


> Thank you Brooke. Yes he definitely goes completely against the grain and ruffles plenty of feathers. It won't stop him or me though - it is what all patients should expect, right?



Absolutely make sure yo write him up in the doctor directory and start supporting a decent footie team gig lol:soledance:


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## Niks

What an amaing story and fabulous team you have!! 

It is a shame that more consultants aren't like him.

Thanks for sharing, sorry about QPR!! :applause:


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## Terriernut

Michael, you are absolutely right that patients and thier medical teams SHOULD be interactive.  Sadly not the case so much of the time!


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## Judith

A fabulous doctor is worth their weight in gold.... let alone an entire team. I am very happy for you and wish you all the best with your transplant.


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## michaelseres

Judith, you just need to know that your team are completely on your side. It is as much about a psychological boost and a physical one.


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## michaelseres

Niks said:


> What an amaing story and fabulous team you have!!
> 
> It is a shame that more consultants aren't like him.
> 
> Thanks for sharing, sorry about QPR!! :applause:


Hey I am so used to QPR losing its become the norm :ybiggrin:

Am very luck with my consultant they have to be truly open minded to this interactivity and sadly not many are


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## michaelseres

Jam300 said:


> Sounds like you have a great team behind you, congratulations and thank you for sharing. Perhaps your story will encourage others to seek equally proficient doctors if they're unhappy but don't believe theres much better out there (i've seen a lot of this attitude).
> 
> In short i'm glad your doctor has more of a clue what he's doing than 'Arry, you've many more puzzling decisions to look forward to!


Put it this way, I'm glad that Arry was operating on me :ybiggrin:


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## Jam300

michaelseres said:


> Put it this way, I'm glad that Arry was operating on me :ybiggrin:


I wouldn't trust 'Arry to play a game of Operation without half inching the pieces, let alone let the fellow anywhere near my body. Nice to see some fellow footy enthusiasts (and London based at that) on here!


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## michaelseres

Massive footie fan, if QPR counts!! Still hoping Arry can work some magic on us !


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## michaelseres

*What have Space Mountain and bowel transplant got in common?*

This last week seems to have typified my journey through bowel transplant. When I was told that having a bowel transplant was swapping one set of problems for another I knew what I was being told but never really appreciated what that actually meant. I went in to the surgery knowing the risks and complications but at that time I hadn’t eaten for 3 years and had intestinal failureso for me there was no choice.

Then I started to recover, get over infections and a few blips and things settle in to a more positive pattern but the stark reality is that there is something that happens every single day that means your mind is on a continual rollercoaster. I guess that is why so many IBD patients call it an invisible illness. My last blood markers were good and my surgeon is happy with me. That should be enough shouldn’t it? You have your bowel transplant and your transplant surgeon gives you a thumbs up but that “high” doesn’t last that long. Nausea has been a big problem that I haven’t been able to rectify. To me only being sick 3 or 4 times a week is good but actually when it happens at 2am/3am/4am then your brain gets scrambled and your mood changes from the “high” to a “low.” If you then thrown in occasional accidents then the “low” can emotionally be very “low” and that can be hard to explain.

I went back to see a great gastro doctor, who I call Dr Botox this week, to see what the next thinks the next steps should be. Another botox injectionis on the cards for March and in the meantime I am going to have another gastric emptying study. Dr Botox believes that there is an underlying dysmotilityproblem and that actually may not ever be solved and therefore it may be about managing the symptoms better. And boom the rollercoaster in my brain starts up again. It would be cool if it was Disney’s Space Mountain sadly it’s more like Michael’s Mumbo Jumbo.

Away from my bowel transplant life is definitely been gathering pace at a good rate. I have been incredibly lucky to have struck up friendships with the founders of the Centre For Patient Leadershipand I am now a co facilitator. I will be involved with 5 programmes over the coming few weeks so all of a sudden my brain has had to go out of 1stgear and straight in to 5th gear but that’s a fun ride to go on. I’m going to be doing an interview with David and Mark, the founders’ soon so watch this space.

Next week I have the privilege of being the opening speaker at the Scottish Health Council on its E-participation in the NHS conference. I have re written my presentation 3 times so far. I’m not sure why as usually I can write a presentation relatively easily. This one though has definitely challenged the old grey matter as it is purely to NHS managers and I want to get the tone write. Then there is the debate on what to wear. I’m going for the smart casual look or as my daughter would say “at least you made an effort” look. I figured suited and booted just isn’t me – unless of course anyone from Hugo Boss is reading this and is looking for a middle aged bloke with no six pack and hair going grey then I’m definitely your man.

I appreciate that this bowel transplant post has been a little disjointed and a bit all over the place. My friend and writer & Crohnie Wendy Lee – you should read her blog will definitely laugh at some of my English but I write as I feel and my head feels a little all over the place.  This think that has helped me snap back in to place a little is this video. Please have a watch. The video has been done by my son Nathan without me knowing that he was doing it. What it made me realise yet again, that coping with a bowel transplant and everything that goes with it doesn’t just affect me but it affects those closest to you as well. All they crave is a bit of normality and I owe them that. Oh and if you fancy seeing more of his videos then check out his YouTube channel or follow him @nathansgotfish

Till next time.


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## Angrybird

It's always good to hear from you Michael and whilst the tum still can't be have for you it is good to hear about all the other projects you are involved with  Please do continue to keep us updated on how things are doing.


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## StaceyQ

hi 

i am so very fancinated by your story.

Do you knwo what the criteria is for having the transplant?


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## Spooky1

having his medical team i suspect, Stacey from Petersfiel.... is there a D on the end? or are you somewhere i not heard of?


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## StaceyQ

its petersfield lol 

i want his medical team! they sound amasing x


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## AckMac

Continued health to you!  This is such an amazing story.  It's people like you who will make this MUCH easier for others in the future.  I'd like to shake your hand one day.  You are a brave man and I respect that so much.


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## Spooky1

AckMac, luv the avitar!!  if i ever get to this stage with crohns i'm opting for remote controlled bionic bum, universal remotes or not!!!


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## Jim (POPS)

I've never heard of a bowel transplant, didn't know they could do it.


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## Angrybird

Hi Michael, I have just seen you on the BBC news!!! I cannot believe they were passing that pile of sludge off as food :ywow: I now have a phobia of eating mash in hospital as the last time I had it it tasted like it had been cooked in an ash tray.


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## Terriernut

Heya Michael, I just saw you on the beeb too!  :ybiggrin: Lookin good!!

Glad you are campaigning for better quality food.  The rubbish they give most of us to eat in there is atrocious!


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## CeeCeeGo

Ditto to the beeb.
Well done you especially as you got Arry from us - although I now live 'Up North', I am a Spurs fan and originate from Enfield.
It was my local hospital that the BBC were at this morning although I don't remember the food being that great.


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## David

Can I have your autograph?  

Didn't see you but I'm glad you got that kind of coverage.  Good for you!


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## Spooky1

Also saw you on the bbc news michael.  not surprised you needed bowel transplant, arrhhh, hospital food!!!

gl and keep well.


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## r.w.gardner

My Daughter from the age of 12 now 37 has had 17 operations for Crohns had a bag fitted at one time had two. 

However now is very disabled as a result of brain damage when in Hospital.

I would like to know more of about bowl transplants no one has mentioned this to us.

Regards

Rob


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## michaelseres

David said:


> Can I have your autograph?
> 
> Didn't see you but I'm glad you got that kind of coverage.  Good for you!


Thanks David - hey did you apply to Doctors 2.0? I haven't heard from them but have a call this week. Hope you are keeping well:dance:


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## michaelseres

Angrybird said:


> Hi Michael, I have just seen you on the BBC news!!! I cannot believe they were passing that pile of sludge off as food :ywow: I now have a phobia of eating mash in hospital as the last time I had it it tasted like it had been cooked in an ash tray.


The food is so appalling it is time they listened to us patients for a change. Finally hospital caterers agree that we need standards so lets see. Not giving up the fight yet :lol:


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## michaelseres

r.w.gardner said:


> My Daughter from the age of 12 now 37 has had 17 operations for Crohns had a bag fitted at one time had two.
> 
> However now is very disabled as a result of brain damage when in Hospital.
> 
> I would like to know more of about bowl transplants no one has mentioned this to us.
> 
> Regards
> 
> Rob


wow Rob it really sounds like she has been through it all. I would be delighted to help you in any way. Where about are you living? The key componant for a transplant is intestinal failure and on intavenous feeding. is she at that stage now? Take care :ylol2:


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## Terriernut

Rob, I'm so sorry to hear what your daughter has been through, and you along with her.  

Michael of course is the expert.  Bowel transplants are very, very rare.  I think Michael is one of 5 only here in the UK.  (Michael, there may be more now, but I'm not sure?)


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