Considering K Pouch in Oxford UK

hi Alex, my impression is that there is a wide range of the frequency of revisions, and also may different problems that cause the need for surgery. Personally, I've had several valve revisions, three total pouch revisions, and several operations to lyse adhesions that were causing bowel obstructions. But now surgery free for the last 16 years. Some never seem to need a second surgery, and I hope others will chime in here too. I think you'll also find that no one would trade their KP for a standard ileostomy.

no more surgery for me yet. I thought I would need my valve done but I learned how to intubate with it a bit twisted inside, doctors prefer to teach you how to intubate if that happens vs just cutting you open. Plenty don't need more surgeries. This section is pretty quite, I think because most people are out living life.

Alex,
First thing I would do is meet with the surgeon (if you haven't already...you don't say) and get an impression on how well you communicate with him...the k pouch is a lifetime commitment with your surgeon and you have got to have a really good relationship with him so that if there eventually are complications he is open to fixing them and does not leave you hanging alone out there...Not a joke...nothing worse than being told that you are on your own with it.
Next, there is no reason why you should have to go back in for a 2nd, 3rd or more revisions but it can happen...depending on skill of the surgeon and how your body heals...the most common revisions are on the valve which can twist, slip or prolapse...pouch revisions are more rare other than the pouch falling off of the wall and needing to be reattached...but there are possible problems just like with any other pouch surgery...there is less incidence of pouchitis in k pouches than in j pouches but it can happen and is usually controlled with antibiotics and probiotics...
I have had some expericence with the surgeon you are speaking about so if you wish to PM I would be happy to talk about it...I won't do it on an open forum.
Good luck no matter what you decide and keep asking questions until you feel comfortable to make your final decision.
Sharon

Many thanks all of you for your feedback. I have not met the surgeon yet but have spoken with the stoma nurses at the hospital and am meeting him soon. It's good to know John A that despite all your troubles, you would not traded your KP for a standard ileostomy. It feels like the right move.

Hi Alex. I Live in Oxford and I am hopefully facing k pouch surgery. I am curious as to whom the consultant is who is going to perform your procedure ?? As far as I was aware only Prof Mortenson was the only one able to perform the surgery but this is old info dated 1996.I look forward to your reply. Regards Richard.

Hi Richard
It is Professor Mortensen. I am just being referred now and have not met him yet but had
some email correspondence. Have you spoken to the
stoma nurses at the Radcliffe? They are very helpful. Also there is a great pdf on the procedure at Radcliffe on the web -www.oxfordradcliffe.nhs.uk/.../101101kochpouch.pdf
Their numbers are there.
Let me know how it goes!
Alex

Hi Alex, I know most of the stoma nurses at the J R ! I had a loop ilieostomy and then the closure of that forming my current j pouch. Yes they are indeed a great team. I also have met Prof Mortenson. He was involved in the creation of my j pouch due to complications with the procedure and the surgeon performing that procedure. He was brought in to assist the surgeon as it was a huge operation . 10 hours in theatre !!!!! Anyway sadly the J pouch has not worked as it should have done. Either way let me know how you get on too! I will keep you updated. Good luck. Regards Richard.

I had my Kpouch 38 years ago on Middlesbrough. Can I offer any help

Thanks Patricia. I have found out an awful lot this week and see the Prof on Thursday so will let you all know how it goes.

Well I saw The Prof and we had a good chat. I had a CT scan which showed no sign of Crohn's in the small bowel nor any sign it has been affected in the past (which I knew) and he is happy to proceed so I am on my way. The only obstacle is work right now as there is a lot of change and I am moving to a new job in the same company. Chatting with my boss tomorrow on timing as don't want to be out for a month during a crucial period. That said, I don't want to wait too long. If you're going to be in hospital might as well be when the weather is bad, no?
We also discussed my diagnosis which was UC first then changed to Crohn's and then revised to be UC after my panproctocolectomy on the basis of the pathology reports. Prof reckons it's indeterminate colitis which has been mentioned before. Anyway what's in a label? The treatment would be no different.
So the journey begins...

Awesome Alexander, absolutely awesome.

Ad

So I go under the knife on February 8. Wish me luck everyone. And I look forward to all your advice on the other side...

Good luck Alexander and keep us all posted on your progress.
Sharon

I'm having the same op, the same day !!! It will be nice to put a face to your name ALex. It's obviously a two for one deal !! Are you travelling up the same day for the op ? Regards Richard

Wow, what a coincidence! I am travelling up on the day, yes, so maybe catch you in the departure lounge?
If not, sure we will see each other in recovery. Look forward to seeing you there. Good luck.

Just realised I put the wrong date - I am actually going in on the 4th, because I was bumped from Feb 1. Sure I will still be there when you get in Richard. All the best.

Hi Guys, I just joined the site. Ive had an ileostomy for a year and a half now. Im 24. Im living in Ireland and k pouch isnt available here at the moment. It is something i am interested in but i dont know how to get in contact with the Dr at the Oxford hospital. How do i go about doing this?
Thanks

HI,
You could try sending a PM to either Richard FH or AlexanderC who are both having it done at Oxford and ask them how they went about it, if they are happy with the Prof, treatment, hospital, surgery etc...and then proceed...if not I can find out if there is any way to train a surgeon in where you are...in which case, PM me.
Sharon

Im Dying to here from Alexander, hope there recovering well.

Well here I am, three weeks out and all working perfectly. I had a rough time in hospital as my bowel froze (ileus) for a week after surgery. That meant lots of sickness discomfort and a nasogastric tube draining all the backed up yuckiness. During this time Prof Mortensen and his team worked tirelessly to explore any other possible reasons for the hold up and were extremely attentive and hands on, being very supportive during my low points.

It's been bumpy since it started working (my bowel seems to have taken time getting back into its stride) but since I got home a few days ago it has really settled down and it's great to be able to eat and drink freely (nothing too thick though!). I had some intravenous nutrition in hospital but am still very weak after a 16 day stay, mostly without food.

I am tubing every 3 hours at the moment (at night too) which is very tiring and I can't wait to build it up over the next 2 months but loving it already as I realise the freedoms it brings. One day sleeping all night would be great!

The surgical and nursing staff at the Churchill were outstanding - proactive, compassionate, friendly and effective. I cannot praise them enough.

I also had the privilege of meeting Richard who was in next door at one point. Good to meet you sir and hope you are well.

Hi Alex, glad to know that you are doing so well and it was a pleasure to meet you too. Two and a half weeks post op and coming along steadily. I do find that my energy levels hit rock bottom all of a sudden with no warning exhausting me. Do you find this too ? I am very cautious to the food I consume worrying about a possible blockage at this early stage. Sticking to very well cooked soft foods and chicken, fish etc. I think we are both looking forward to a more normal family life especially as my little 10 month old Penelope is so full of mischief and energy.
Good luck and keep in touch. Regards Richard.

Hey congratz Alexander and Richard. Great news indeed. Thanks for the rundown on how it's going. Wishing you years of trouble free Kpouching.

Great news guys, congrats on your new k pouch

Hi Richard
I was very weak when I first got out but my energy levels have been pretty consistent this time around. After my colectomy I had exactly what you describe but so far so good. I expected to want to nap but that hasn't happened.

Foodwise I am doing the same as you. I did have a stir fry which was a bit ambitious and meant the catheter got blocked a few times.

Just trying to get it to that perfect consistency so tubing doesn't take so long. Hitting the coffee and grape juice today.

It was my eldest daughter's 10th on Sunday and I hauled myself to a freezing tobogganing party! They certainly keep us busy!

Alex

Hi Alex. GREAT NEWS !!!!! So glad that you are doing so well. I am pretty fine too. I made the same mistake being over ambitious with food ( you can understand after so long a time having to control what i ate ) won't do this again in a hurry !!!!! Happy Birthday to your daughter. Mine will be one on 20th April and i look forward to celebrating this milestone properly.Take care and may you continue to improve in leaps and bounds. Best wishes Richard.

Guys,
A word of advice, take it easy and do not overdo it in either food or activity...you need to rest and heal...no lifting, pushing, pulling, bending or stretching etc...your abdomen is delicate, you valve very fragile for now and it is not the time to overdo things...
The slower you go now, the longer your valve will last later...put any chunky food into a blender if you want to eat it, by pulling out large peices that get stuck you are 'yanking' on the valve and that is not healthy in the beging...it overstresses it.
Enjoy life and be happy guys and happy family birthdays.
Sharon

Hello there,

Yes I had my op three months ago and I am fine. I had a little problem last week intubating but the tests showed it was all fine and I no longer have the problem. Prof showed me a trick to get the catheter in when it is tricky.

I run nearly every day and do body weight exercises in the the fields (press ups etc) and my life is far easier than with an external pouch.

I'm not saying it's plain sailing - it's early days and who knows what the future brings. The surgery and recovery is tough. But when it's all working fine, it's the most normal I have felt since losing my colon.

The team at Oxford are excellent, so I would say go for it.

All the best

Alex

Hi

Stumbled across your posts whilst looking for information on removal of J pouch and rectum. The BCIR sounds like an alternative option to the illeostomy i have now which my surgeon wants to make into an end illeostomy.
I live in the North West, my surgeon is based in Preston and I will be definatly contacting him to get his opinion on this procedure.
I would be grateful for any information on the actual removal of the rectum as part of the pouch removal procedure, as have heard this can be the worst part and also the feedback you received from your surgeons involved when asked about the BCIR.

Hev,
There are a few people on this site who have had the surgery in England...I would get into contact with them and ask them for their thoughts on their surgeons, hospital and post op results...I love my k pouch but admit openly that you need a good and competent surgeon to do the surgery and really attentive follow up for it to succeed.
Good luck and welcome to the forum.
Sharon

Hello there
A couple of things:

- The BCIR is note performed in the UK - only K Pouch, which is similar but not the same
- The only surgeons who will perform this are in Edinburgh and Oxford.

This means that if you have a K Pouch each time there is an issue, and you should expect some, you will need to travel to either Edinburgh or Oxford. This costs time and money and inconvenience that you should not discount.

I had my K Pouch done in Oxford by Prof Mortensen and I have a lot of time and respect for him. He was helpful, attentive and dedicated. I was a private patient.

Nonetheless, three months after surgery I experienced valve problems. I subsequently had two further hospital admissions for this for investigations and to find a way to cope.

In the end I faced surgery to repair the valve and I opted to return to the Brooke ileostomy. This took place two weeks ago. I had the K Pouch for eight months in total.

I could not face a repair with the knowledge that I could need another one three months down the line. Do not underestimate the physical and psychological impact of surgery on you, and those around you, particularly if you have a family and a full-time job.

With the Brooke ileostomy, the chances of further surgery are slim. That is not the case with the K Pouch, where you should be prepared for the possibility of multiple surgeries.

With regards to the rectal closing, this was done for me when my colon was removed a few years back. It was the worst wound and took the longest to heal. For me it took around seven months, but I was immuno-suppressed for the surgery and very ill. It will be easier if you are well to begin with. Regardless, it will be awkward and uncomfortable.

Hope this helps

Alex

Hi
Thank you for your replies, especially AlexanderC, I think you are probably right, I have already had 4 operations and a number of EUA to get this far and the next step will hopefully be my last! I am used to the ileostomy now, had my first approximately 20 years ago for 4 years than a reversal to a J Pouch for 16 years when i had my temporary one installed 2 1/2 years ago!

I know I can eat pretty much anything I want, am able to work and play, go on holiday and lead a full and active life. My husband is wonderfull and has supported me through everything and is fully behind the decision to have my pouch removed, and as I am fit and well, apart from the fistulas!! I will hopefully have good recovery.

Once again thank you for your input and wish you well in your recovery.

Hev

Hi Alex,


i'm sorry you've had your pouch removed.
I had mine formed beginning of July and have had problems too.
Mainly not being able to get catheter in, about once a week this happens and nightly indwelling catheterizing irritates and bloats my stomach up, so only do the nightly thing when I have to.
I use the bougie to unblock - the condre(sp?)end and post medina cath down. I didn't originally like suing the bougie but after the stoma nurse ramming my inside with my catheter the bougie dosen't scare me anymore!! lols!!
My first blockage my local stoma nurse sorted for me and I much prefer to do the unblocking myself now, as and when.
i had a pouchogram days before my first blockage came about as I had positional problems, BUT never a blockage though and pouchogram showed pouch to be fine, so I wonder if the catheter was hiding something whilst I was be x-rayed? , as cath had to stay in situ during the procedure.
Hev, I'm sure I know you. your names not familiar but with you being North West like me - I'm Cheshire area, I'm quite sure I may have spoken to you. Were you asking me over a kitten and I told you about k-pouch surgery as an option?

Rach