BCIR Help in Europe?

Creampuff, if you could get your usual catheter in and taped tightly to your skin, that should do the job as well as a Foley catheter.  The only problem would be connecting the outside end to a leg bag so there would be no leakage at the connection.  I am surprised that they do not have a urinary catheter similar to a Foley in Germany.  If you do use a urinary catheter, be sure to NOT inflate the balloon at the end since that might injure your valve.

There is a new BCIR surgeon in London, Dr. Ed Westcott, who was trained by Dr. Rehnke to do the BCIR surgery.  He is a very likable doctor who I had the opportunity to meet at the Quality Life Association conference in Florida last September where I was a main speaker.  It is my understanding that he will start performing this procedure shortly when he gets final approval from the hospital where he practices.  If there is reciprocity for state funded healthcare between Germany and the UK, this might be an option for you if surgery is needed.  Perhaps Sharon, who lives in Paris and has a K pouch, will provide additional suggestions since she has a much better knowledge of healthcare and insurance coverage in the EU.

Bill

Dear BillV, thanks for your reply and doctor suggestion. I will definitely look into that! It really is a wonderful, life changing surgery and it's such a shame that it's not more widely in use.  BTW, they do have foley catheters... but they are all much smaller gage, at least in the hospital I am in. 

I just looked into reciprical health care and it looks like England and Germany do offer that. I will give the doctor in the UK a call tomorrow. At least the UK isn't as far away as Florida. :-)

Try showing the doctors a picture of the foley cath via the internet. Also I think Dr. R meant to use a 28 fr cath. This is the norm. 30 fr is the size of our intubation caths.

Ray

Hi BCIRRAY, ah... that makes sense. My husband brought all the catheters I had at home to the hospital and in the mix was a 28fr foley. Though apparently it expired 2 years ago so I'm not sure I should use it.

Hi Creampuff,

First off, I am so sorry that you are having this problem.

Next, yes, Europe is ver scary when you have a K pouch or BCIR...they do not quite understand them here.

If you ask for a rectal catheter (the kind that they use for enemas and during colonoscopies) then you may find something that is closer to the size that you need. 

I have a very good radiologist here as well as a wonderful surgeon who has operated on me at least 10xs now on and around my K pouch...it is usually not a direct k pouch problem but more of either my pouch falling off of the wall (that can pop open the valve and cause leakage), hernias (or peristomal hernias that can cause the valve to twist or come loose)...he has worked directly on the K pouch with Dr Cohen from Toronto but would not be able to actually open one up and fix the valve.

I have found that about 80% of the valve/pouch problems were more related to the abdominal wall, adhesions, and hernias than anything else...he has perfected his techniques on me so that he is capable of helping other pouchers.

Let me know what you need and I will do my best...there are some reciprocal agreements in Europe that would allow you to come here if you need to.

Sharon

Hi Sharon,  thanks for your response. Yes, SCARY is the right word- down right terrifying at times. I'm glad you've found a surgeon you have confidence in. I'm not really sure what the problem is yet... It seems to be a slipped valve but that is very strange after 14 years of everything being perfect, so I don't know and I'm not really sure how to find out. I will be speaking with the doctors again tomorrow morning and am hoping to get their input but they never even heard of a BCIR so they just kind of shrug their shoulders. Not very inspiring. 

Over the past year or so I added radical amounts of ruffage to my diet which, in hind sight, may not have been the best idea. I have to admit I was also often lax about emptying the pouch when I was busy doing something, even when I felt a lot of pressure. Maybe it was the combination of to many hard to digest foods along with sustained pressure that made it slip. I'm hoping leaving the cath in for 2 weeks will fix the problem. 

Where in France are you? I did check into recipricol aggreements between countries in Europe and that seems to not really be a problem.  It would be good to know there was another option on this continent. BILLV mentioned there was a surgeon in London who trained under Rehnke. I am going to try and get in touch with him tomorrow.

At any rate, this community helps... I've found a lot of answers in other posts and I don't feel quite so stranded.

I suggest that you have the doctor treating you talk with Rhenke or Westcott to get their suggestions on diagnosing your problem. Perhaps there is something your German doctor can do, thus avoiding the need to travel elsewhere. While it may not avoid needing surgery in another country, it would help you formulate an action plan.  As far as your Foley catheter with an earlier expiration date is concerned, I believe it would still be OK for your use.  Remember that the balloon should never be inflated.  The rubber it is made of should be soft and pliable.    I have a Foley catheter that was given to me at Palms when I had surgery 4 years ago and it is definitely OK.

Bill

Update: they are going to put my old foley in and then I'm free to go... That's a little bit terrifying but one step at a time. I had a lot of time on my hands in the hospital and was able to do loads of research. I found out Dr. Westcott in London was indeed trained under Dr. Rehnke but the BCIR has not yet been approved in his hospital. His secretary, Penelope, has been absolutely wonderful. I've sent him my CT's and am supposed to get his opinion tomorrow. 

I also spoke with Dr. Ecker's office in Waren, Germany... Does anyone have experience with him? He was also very responsive which is inspiring. Though without even looking at my CT's he said I needed surgery and was almost sure he could handle the BCIR and if not he could rebuild a Koch Pouch for me. That scared me! I would rather just fix the problem not start from scratch.

For those of you that have had to wear a foley for several weeks, did you go on a liquid diet? I don't know what I would do if the tube got blocked right now.

Creapuff,

Before you embark on any surgery you need some very specific tests done to find out what is really wrong with the pouch and or valve.

The best possible test is a contrast study done with 'Opac' liquid that is slowly dripped first into the valve while pictures are being taken and then filling the pouch...once the pouch is full they need to take pictures of it with you laying on your right side, on your back, on your left side and standing up...yup, that is the only way that we have found to be able to see all of the possibilities.

In my case we diagnosed a slipped pouch (it fell off of the wall), a twisted pouch, a couple of different hernias at different times and a peristomal hernia...none of them honestly required a pouch surgeon but an excellent general surgeon and/or laparoscopic expert.

That is the best way that I have found to get a full picture of what is going on inside of you.

Sharon

Thank you Sharon! I am going to make an appointment with another surgeon from a different hospital. He is supposed to be one of Germany's absolute best for intestinal problems and he started a group for IBD sufferers so maybe he's also a bit more empathetic. 

Right now I am waiting for the nurses to take me down to have a softer catheter inserted... I think I am going to just try myself in about a half hour and hopefully save everyone the trouble. In another post you mentioned that the foley was too soft to keep the valve straight... Has that been your experience?

Another update: I went down to endoscopy to have my foley inserted but was able to do it myself without the help of the doctor or a scope. There is a part right at the end the must still be twisted or something because it I could feel the catheter sort of "stick" before it went all the way in.

Now, for those of you that have had to leave a tube in for weeks at a time what sort of foods did you eat? The foley's holes are so much smaller than my regular tube. I'm planning on eating a lot of soup and doing a lot of juicing but that seems like it can get old pretty quick. Any tips?

Once again, I want to say how relieved I am to have found this group. Thank you all so much for your kind words, support and tips.

Creampuff,

I bought myself an immersion blender (the hand-held kind) that I can basically plunge into any pot, deep bowl or jug of food...I made salads for the family and then blended them for myself, turned most of what I cooked into a slushy baby food...all of my fruits became smoothies (add ice if you are not freezing to death at the moment and make a very refreshing drink)...

It all got blended.

Avoid pasty white bread, breads with whole grains or seeds on them (they can block the cath) or any nuts, raisins, dried fruits (other than prunes), or stringy foods...with those tiny holes you are still going to need to keep things running with prune juice, grape juice and/or hot liquids like coffee or green tea.

I had to keep the tube in for about 4 months (until my surgeon could fly in and operate here) so I had lots of yogurts, ice cream, flans, creamed soups and similar stuff.

If you are too thin, add whole cream to your diet and butter, too fat? Avoid them.

Those were my rules...Also I love tomato soup which became my mainstay.

Sharon

Oh my god... 4 months. That is one very long time. But, I guess you get used to it... wow. Did you eat meats? My husband make "rouladen",, rolled braised beef, while I was in the hospital. I made it into a mush in the Cuisenart but it was still kind of stringy... I hope I didn't screw up my first night out of the hospital. 

Well, I was looking to loose a couple kilos so there's that silver lining. I love tomato soup as well, especially with grilled cheese sandwhiches. What about eggs? Or are you a vegetarian?

So, am I understanding it right that your surgeon flew over to Paris not once but twice to operate on you?? How did you swing that? Sorry, I have to ask... Are you nationally insured in France or privatly? Or did Canada foot the bill for that because you're a citizen? It makes me wonder if there's any chance my surgeon could fly over all well. 

Thanks so much for your input, Sharon. It's a great start and I'll read up on low res diets as well.

So yes, grilled cheese and tomato soup are my favorite meals...no, I am not a veggie, far from it...I love meat, I just do not eat it very often (price, availability, quality...) so when I do I enjoy it...When sick, I do a lot of ground beef...or chicken...it digests nicely and my pouch/tube/valve don't complain either.

My surgeon only flew in once on a very close call emergency basis...he saw my scans (my angel of a radiologist took the contrast study like I described above and then sent them by file to Dr C, in Toronto), called and left me a message to not move, not breath...But to find an O.R. and a surgeon to give him priveledges in a hospital here, immediately!

It was almost a joke...I must have listened to the message 10xs...Then I started calling every clinic and hospital with and left messages for all of the general surgeons asking them to call me back...explaining to their secretaries the just of the problem. 

Only one called back, he asked me to send off my files & medical info...then he called and asked me in for a rdv...Said yes on the spot...the next thing I knew I was admitted, Hubby was picking up Dr C from the airport and then I was translating from my French surgeon to Dr C (neither spoke the other's language!).

I had a friend's hubby standing by in O.R. to translate for them (he's a bilingual dental surgeon)...I was lucky...they were great, worked well together and really got along. 

I paid the whole thing out of pocket. Not covered by my insurance. 

Since then my French surgeon will operate on me whenever needed (quite often) but only never inside of my pouch or valve although he does do J pouches.

I am forever grateful.

Sharon

Dear Sharon, I am so sorry for what you went through (and that you still seem to require so much surgery) but wow, are you lucky to have such a dedicated surgeon in Canada and such wonderfully cooperative surrgeons in Paris-- but, I'm sure you know that already. :-)

It is inspiring to hear that European hospitals can grant surgery priviledges... maybe that's an option. I will definitely have to check into that. If not for my doc from the States (which I highly doubt I could afford on an out of pocket basis) then maybe for Dr. Westcott from London.

Why wouldn't your French insurance cover the cost of your surgery in a French hospital when it had been confirmed as necessary by a French surgeon?? I understand them not paying the flight and hotel but I don't get why they wouldn't cover a necessary surgery done in land. :-/

Anyway, you are truely a wealth of information and have given me some peace of mind. A few days ago, I was literally praying that I wouldn't die at the hands of my hospital's incompetence. Since then, I've done a ton of research and see a few flickers of light at the end of some very long tunnels. 

One more question... Did your pouch situation ever straighten out just by leaving the tube in for a few weeks or did you always require surgery?

Good morning Creampuff, 

(nice to finally have someone in the same time zone as me!),

Well, my surgery was covered on the French side, meaning my French surgeon's fees and the clinic (I have national health insurance + 2 complimentary health insurance plans) but the cost of flying over a surgeon (1st class) and his fees + hotel stay were not covered...it was as much if not more than the other surgeon's fees and costs...But my surgeon stayed for 5 days at my side, only leaving to take meals with my hubby...he taught my French surgeon his techniques, trained the staff, held my hubby's hand and generally made me laugh the whole time...(not great post op ) ...he has been at my side for 37years so we have developed a great relationship. I can honestly say that I consider him a friend.

I have a disease called Ehler's-Danlos. It is a healing disease...meaning that my body does not produce enough collagen (the glue that holds things together) to strengthen my cellular walls, ligaments, skin, vessels etc...so everything is more fragile. My veins pop with every I.V. needle, need to be changed daily, hourly...unless they put in a picc line (ouch). My sutures do not hold so I need 3 layers of closing and to keep them in for 6-12 weeks...that works fine on the outside (unless I collect fluids under the scar and it bursts!)  but on the inside, it means that I need staples or clips or permanent sutures and they bring along their own lot of problems when left inside for too long...

That meant that my pouch would slide off of the wall after every surgery...and have to be reattached sometimes 2 or 3 xs...until it stuck or sort of hung off of one side awkwardly...leading to other problems altogether.

The good news was that it meant that I did not build adhesions...until recently. That meant that he could constantly go back in and fix things...now I seem to have started building them (I take supplements of collagen every day along with about 10 other supplements to help reinforce my vessels and muscles)...So every fix leads to another problem.

Being a woman means menopause, meaning my tissues are getting thinner and more fragile too...so things tear easier...now, the new thing (since 2008) is hernias...never had them before, now they just don't want to stop.

It's a balancing act. I have to exercise to keep strong but not so much as to tear muscle and ligaments. I heal slower so I need to be patient and not overdo things (I do not deal with sedentarism very well and have 0 patience with myself)...I hate being sick so I hide it from the outside world...those who know me, know that I close up, hide out and cut all communications with them when I am sick...I can't talk about it to 'them' because no one can understand (except the people here)...

My pouch and I have a very strange marriage. We love each other but sometimes, we just can't stand to be in the same room with each other! 

It functions, I baby it, eat carefully, do not overdo it and mostly it works...Not planning to divorce it anytime soon....

Sharon

Oh Sharon, I am so sorry to hear about your difficulties. Have you ever considered taking estrogen to help stave off some of the problems associated with menopause? I use a topical estrogen and have ever since my hysterectomy circa 11 years ago. I'm 50 so I'd definitely being going into menopause right now if it weren't for that. Although technically, I guess I've been in menopause since they removed all my parts.

I, too, am extremely private - obviously - I don't even use my name on this site. ;-) So I understand your reluctance to not let people know. For me it's two fold. I'm an actress so definitely don't need the world finding out about my situation but I'm also reluctant to let even close friends know. 

It's an unusual situation having a pouch, especially here in Europe and people are often afraid of what they don't know. Add the "ick" factor and well... 

Anyway, I'm really glad to have someone who understands on this side of the world as well. I hope you stay well. 

My 'original' obs-gyn didn't 'believe in it'...and refused when I asked about 2yrs ago but I was discussing it with my hubby recently.

I had a 'meltdown' like I have never had in my life when she put me on a temporary hormone replacement therapy to pump up my level (when they were trying to determine if I was 'really' in full menopause or not)...hubby threw the packet in the garbage after that

Since then, nothing but I now need a new doctor (she retired).

Seems that the effects of menopause and having a pouch do not make for a happy marriage in the long run.

I don't tell friends, clients or colleagues about my pouch...they wouldn't understand and I don't want to get into it...pointless. Even my sister in laws have no idea (they think I have a colostomy and keep giving me advice about how to care for my colon! A few in-laws have informed me that no-one can live without a colon!)

I stand up on a stage every day...I'm a professor, business coach, and personal coach...you cannot show weakness, illness, pain, a limp or sweat...wearing a tube for 4 months attached to a leg bag was quite the challenge. I pulled it off but I only ate at night so that I wouldn't have any complications at work...you do what you have to do. 

I guess I could have chosen a different profession, one that doesn't require public speaking, standing up with my stoma at eye level of my students but this is what I love doing and I don't allow my pouch to stop me.

I do worry about the future, what my pouch is going to do to me in the next 10 yrs and how thing are going to age but for now, I am still hanging on. 

Sharon

Dear Sharon, 

It seems you and I have more in common than just our pouches. It's a shame we're not in the same country.  I definitely know how you feel about pouches and professions not necessarily mixing but what can we do? I love what I do as well and hope I never have to give it up. At least I don't have to hope/worry about getting cast in roles that I would have been cast in 10 or so years ago. Now I am usually the mom or the wife that's been cast aside for some hot 19 year old. :-D

I use a topical estrogen and it's been great. The upside is also that some of the effects of aging normally due to menopause haven't affected me. I would definitely look into it if I were you. I am happy to send you a picture of what I use. Apparently, being absorbed through the skin is much easier on your body as it bypasses the liver and digestive system. 

Keep hanging on! It's nice to have someone like you here. :-)

Creampuff;

Why not consider being an advocate for the BCIR/Koch pouch. I understand your reluctance attached to your profession, but this type of surgery needs notable people to project and promote the benefits related to the surgery. In any case please consider joining the QLA (Quality Life Association) and UOAA (United Ostomy Association of America), both of these organizations have web sites with forums that are dedicated in answering questions related to continent ostomies like this k-pouch site.

Any questions please feel free to ask me.

Ray

Speaking up about your pouch is a huge leap...And not a leap of faith either...when you work with the public you open yourself up to all sorts of criticism, commentary and of course, the new, fashionable 'public shaming' of people via social media. 

It is a career killer for many...if you think that it was hard for a homosexual to come out of the closet (and risk ridicule, harassment, discrimination...) imagine someone in the public eye with a pouch...

I know that in my job (and I am pretty much a small-time, nothing-special professor who deals with randy teenagers and young adults who have a very iffy sense of humor...they can destroy a teacher with ridicule for dandruff or a lisp...imagine what they could do to me with my pouch).

Life is not kind to us not just because of our disease but also the way that the public looks at our disease...

Sharon

I have at times thought about being open about it but I don't think I'd get work anymore. I'm still cast as a "desirable" woman, although that can't go on indefinitely. Time marches on (all over our faces and bodies). If I were to come out, that would evaporate... maybe in 5 or 10 years when the way my looks are perceived doesn't matter anymore.

Honestly, if I were in Sharon's shoes, I wouldn't come out either. There is no swifter and deadlier cruelty than public ridicule and kids and young adults are masters at it.

I try to help when and where I can, without effecting my livelihood...I need to work and as I have already been proven right (even bosses are sexist, racist, biased and can harass a handicapped person)...I can't take the risk.

On a fun note...the harasser who accused me of 'plugging up the toilets every time' and forbade me to use them in the office (yup, actually, formally forbade me!) not only got fired but the office was moved to another building (I have not set foot in the washroom in 10 months)....it has been plugged up and overflowed 4xs thus far...Nope, not me, never was....

Sharon

Not so lucky as it turns out. 35 years Koch Pouch with few problems, then increasinging difficulty with intubation during padt 3 years. Now in hospital with tube into leg bag to drain pouch as cannot intubate. Came in with an infection & ready to pop since I couldn't drain pouch. My Internist just tried dilating again but also couldn't get tube in - something wrong with valve - inflammation ...

i am in A Mannheim Germany hospital. They are talking about getting the surgeon involved ... I am desperate for advice. Don't want to lose my quality if life. I am otherwise very healthy and active.

PS:  I am also Canadian and had ileostomy surgery for UC at Mt Sinai in July '77. Dr. Robert Stone was the Chief of Surgery in the then new facility. I got the Koch at CHUS Sherbroke Quebec, Dr. Devroede. I was his 12th.

i am afraid this will not end well.

Pam

Dear Pam, 

I am sorry to hear about your problems. There are two doctors in Germany that have experience with the J-Pouch. Dr. Heitland at Isar Klinikum and Dr. Ecker in Werner (in North Germany). Dr. Heitland performed to failed j-pouches on me so not so sure about him. 

I find Dr. Ecker to be more empathetic. I would get to one of them asap. It sounds like you need to have your valve replaced. From what I understand, although that is a major surgury it can be done without replacing the entire pouch so at least you won't have to deal with that.

Please keep me posted. I wish you all the best!

Opps!!! I meant to say two doctors who have experience with a kock pouch! Sorry for the confusion.

Dr. Heitland does both j and k pouches. 

Thanks. I found Dr Heiland on the web - he's in Lübeck north of Hamburg. 

There is a Dr Michael Ecker in Gnarrenburg, also way north - would he be the one?

Thinking of cotacting Dr. Cohen & flying to Toronto!  Life on hold (

Pam, 

I just read your post and I am so sorry...do they have 'Intervention Radiology' where you are? They insert the tube using a fluoroscope...sort of a moving x-ray to visualize the path and get it in that way...it may be clamped shut because of the inflammation or you may have a twist...

Either way, they need to get an NG tube down your nose to suck everything that they can out (although some actually put it in through a hole in the abdomen...les uncomfortable).

Once they empty out your pouch you will feel better and be able to give your valve and pouch a rest before having to make any further decisions...

I know nothing about the system in Germany but worst case, see if there is an American hospital somewhere where you can get help.

Keep us posted...please

Sharon

Hi Pam,

No neither doctors are correct... Here is Dr. Heitlands's contact info. I would suggest you call as opposed to writing.

Prof. Dr. med.
Wolf Heitland
Direktor der Klinik für Allgemein-, Viszeral- und Minimalinvasive Chirurgie
Facharzt für Chirurgie, Viszeralchirurgie, Thoraxchirurgie und Proktologie

E-Mail: chirurgie@isarklinikum.de
Telefon: +49 (0) 89 149 903 – 8001
Fax: +49 (0) 89 149 903 – 8005

And here is Dr. Ecker's contact info:

Chefarzt der Klinik für Chirurgie

Prof. Dr. med. Karl-Wilhelm Ecker

MediClin Müritz-Klinikum
Weinbergstraße 19
17192 Waren (Müritz)

Tel. 03991/ 77-22 01
Fax 03991/ 77-22 82

Dr. Ecker is very responsive. If you are in any shape to travel I would recommend you get either to Munich (Dr. Heitland) or Waren as soon as possible. The Isar Klinikum really a nice hospital as far as hospitals go... I have not been to Dr. Ecker's hospital yet.

Please keep me posted. I've got my fingers crossed for you. 

Dear Pam, 

Dr. Ecker's secretary is Frau Ott - she is extremely nice and empathetic though I'm not sure she speaks English - or that he does either, for that matter. If you need a translater, I am more than happy to help.

I believe Dr. Heitland speaks English, though I'm not sure about him either. I've only ever spoken German to both.

Let me know if you need any help. I'm in the States at the moment but we could skype or facetime or something like that.

Hi Pam, 

I have been doing some research myself and have come across a couple for doctors who apparently can do a Koch pouch in Germany: Here is another to add to the list:

Prof. Dr. med. Georg A. Pistorius
Chirurg - Viszeralchirurg- Spezielle Viszeralchirurgie - Gefäßchirurg

Tel.: 0951 503-12101
Fax: 0951 503-12109
E-Mail: georg.pistorius@sozialstiftung-bamberg.de

Dr. med. Christiane Arnold
Oberärztin
Fachärztin für Innere Medizin, Schwerpunkt Gastroenterologie
Telefon: (0234) 418-242

Tuong Lan Nguyen
Oberarzt
Facharzt für Innere Medizin, Schwerpunkt Gastroenterologie
Telefon: (0234) 418-242

I've not spoken to any of these doctors yet directly but did see their names mentioned in Forums for Koch Pouches.

If I run across anyone else, I'll write you.

This is the one I was looking for... I've heard of a Doctor in Cologne several times and I think this must be him:

PROF. DR. MED. A. J. KROESEN

Krankenhaus Porz am Rhein gGmbH

Urbacher Weg 19
51149 Köln

Telefon: 02203/5661644
Telefax: 02203/5661642
Internet: www.khporz.de/zentren/magen-da...rum/darmkrebszentrum
E-Mail: a.kroesen@khporz.de

Wow, you guys have a lot of K pouch surgeons there...We have none here...at least not last I checked...darn we are backwards in France on this...

Thanks for the lists...I will keep them safe for future reference.

Sharon

You are an angel! I feel so much better knowing that thaere may be someone in contry that understands this mechanism. You are probably right in thinking that a valve replacement is necessary; this poor valve has taken a beating lately and I kick myself for not dealing with it sooner.

 I have a small tube (under 24 fr for sure) that was inserted during endo. This drains into a leg bag so rhe pouch is emptying & I can eat.

I will be talking to my doctor this morning. Dr Krieson is in closest, in Köln, about 3 hrs drive from my home in Heidelberg.

Dr. Heiland & the ISAR Klinik do seem to be in Lübeck (your tel etc same info as mine) Munich would be much more convenient - does he have a clinic there AS well?

thank you so much for helping. It is awful to feel totally alone and desperate!

❤️ Pam

Good morning again Creampuff,

What is your status? Can you intubate NOrmally again?  I hipe all turned out well. 

Pam

Hi Pam,

I definitely know how you feel. I was absolutely terrified when I couldn't intubate. I have a BCIR and even the doctors who are familiar with k pouches are not 100% in the know with what I have. 

It seems I have a partially slipped valve. I have been sleeping with a 28 Foley cathetar every night and that seems to be working. Honestly, I hope I can go like this indefinitely. I really don't want to have a full blown valve surgery. In spite of that I am going to start making the rounds, visiting k pouch surgeons, so I at least know who to turn to should this ever happen again.

Right now, I have the best feeling about Dr. Ecker but he is, of course, the furthest away.

Dr. HeiTland (with a T) is in Munich (where I live) and works out of the Isar Klinikum. Though, as I said he opererated on me several times circa 19 years ago. He tried to do a jpouch twice and twice it disintegrated within days of the operation. Maybe that was just a fluke, maybe he did something wrong. I really can't say. He is very highly regarded.

Hi Creampuff,

I just made an appointment to see Dr Kroesen on 18 April 17 in Köln. My gastroenterologist knows him by reputation & recommended him. I can go by train in a couple of hours.

Even if this crisis turns out ok, I need contact with a KP-knowlegeable surgeon relatively close to home. Feeling much happier!!

Pam

Great! Glad to hear that :-) Please let me know how your appointment with him goes. I would like to see him, too (as part of my rounds).