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

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.

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

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.

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.

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.

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

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

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.

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:

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 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

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:

Hi Michael, welcome

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

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

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:

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.

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

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

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.

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

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?

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, 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

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

Click to expand...

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

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

Click to expand...

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

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?

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

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

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?

Click to expand...

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

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

Click to expand...

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

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

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

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

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

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.

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

Click to expand...

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

Hugs back xx

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.

Click to expand...

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

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.

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

Click to expand...

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

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

Click to expand...

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

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

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.

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.

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 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.

Click to expand...

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

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

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

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

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.

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

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.

Click to expand...

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!!

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

Click to expand...

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

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

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.

Angrybird said:

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

Click to expand...

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

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.

Click to expand...

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

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

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

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

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

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!

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!

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

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

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

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

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!!!

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.

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*

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!

Click to expand...

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

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

Click to expand...

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!!

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

Click to expand...

How have you been keeping?

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!

Click to expand...

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

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!!

Click to expand...

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

you take care and try and stay healthy

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

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.

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

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!

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.

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

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

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

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

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:

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.

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:

Click to expand...

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

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.

Click to expand...

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

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

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.

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!!

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

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.

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!

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

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

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

xx

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

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.

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