Kock Pouch around the corner

Good luck, Donna. I am sure all will go well.

I have had a Koch pouch since 1976.

Dr. Nils Koch devised the Koch pouch ( pronounced coke )
in Sweden, 1969. So, it's been around a while.

Keep us posted.

Donna,
My heart goes out to you and you have my prayers for a successful surgery and an even more successful outcome...
When I look back on it, I can say that the hardest part of the surgery...Was the part where I was sleeping.
For the rest, there is the morphine pump, a good team of nurses and a little bit of patience...listen to your team, sleep as much as possible (I know, in a hospital?) and get up and walking around as soon as possible and as much as you can tolerate.
Once you get past the 1st week it gets much easier. You have had a pouch and an ileo too so this one will be a breeze...
Good luck girl, and let us know how you are doing as soon as you can.
Sharon

Thanks ladies, for the encouragement. I feel confident that I will be much happier with a major detour. This dang J-pouch has caused me trouble since day one.

Can you recommend me taking anything to the hospital other than the normal stuff? When can you start eating real food - I am assuming your diet is very limited and bland at first. How long will it be before I can actually go out - say to the store? I am so active but how limited are you at first? I am being a chicken regarding the excision of the anus, as the doctor put it. But hey, no pain, no gain, right?

Sharon, what did you mean about the worst part was the sleeping? Did you mean that you can't sleep in a hospital?

I wish you good luck and hope for an easy recovery. I just wanted to ask why you are going from a J-Pouch to a J-Pouch? I always thought they don't usually do K-pouches anymore especially going from a J-Pouch. I was just interested in how you got to this point and how creating a pouch is supposed to help your situation. Thank you for the info and once again good luck any surgery is risky even if you've had plenty of them before.

Phonix2g,

If you look at my post in General Discussion on Oct 20 by Donna H, I give a lengthy explanation of what's been going on with my pouch for 18 years.

Only trained surgeons perform Kock Pouches which are few compared to surgeons that do J-Pouches. It is a real specialty and Dr. Worsey, my surgeon in San Diego area, has been doing them for quite awhile. And yes, Kock Pouches are done on failed J-pouches quite often. They have fine tuned this surgery for years so I feel confident I am going in the right direction.

Donna

So sorry that I scared you Donna,
That was supposed to be a joke, meaning that the hardest part is done by the surgeon while you are under anesthesia in O.R. I guess that it just missed its mark...sorry.
We are all really different in recovery and convalecence so I will not give you exact times/days/weeks but as a general rule they keep you in the hospital around a week or so (here it is 2). You will be on I.V. until they start you on fluids or soft food...when you come out you still have your tube indwelling and a bag attached. (they either tape it in or use a flang/belt thingy) If your doctor uses the same protocol as mine then the tube stays in for 1 month for the valve to heal around it...some of us don't like leaving the house that way, others don't care. I did out of necessity; had to go grocery shopping (on foot) but I had the stuff delivered. I took regular walks in my neighbourhood and switched to a smaller leg-bag for outings)
While the tube is indwelling you need to stay on a low residue diet so that the tube does not get clogged up with fiberous pieces of 'stuff'... you need to drink grape or prune juice to keep things liquidy too...the diet is pretty much the opposite of a j pouch diet...you want everything to melt down to liquid so that it runs out easily...drink lots of fluids, avoid fruit/veggies and too much carb at first...stick to proteins like chicken, fish, eggs and soups etc for the 1st while. Don't sweat it too much...there is a stoma nurse and us for any questions/fears/panic.
The only really important rule is to keep the tube in (and if you need to pull it out once or twice to clear the holes, it is not dangerous...just a touch scary the 1st time).
There will be some smelly mucus accumulating around the stoma/tube while it is in there...just keep the area clean and dry, change the gauze around it often and you will be fine.
The closing of the bottom is another story. You will be uncomfortable at first, there might be a drain in there and sitting will not be a pleasure...but it is totally survivable. I got an inflatable doughnut to sit on (like post episiotomy) and was ok.
You will not be comfortable, a bit weak and in mild pain but by the time I was out of the hospital I only needed tylenol 3 for a few days then switched to tylenol reg for another week.
Like all abdominal surgeries (and you have already been there) the first week is the hardest but you will be in a safe environment...so don't stress.
As for what to take with you? Big t-shirts or nightgowns but not pyjammas. No pants or unddies. Keep it loose and comfortable. Here they make you wear support hose for the whole time to avoid embolisms. (standard procedure for all surgeries)...Perfumes, music, phone and computer to keep us posted on how you are doing.
And stop worrying...it will be over before you know it.
Hugs
Sharon

Thanks Sharon. It is nice to know what to expect and doctors don't really go over the small details which are important. I am 7 hours away from the doctor which does concern me if there is a time when I need to see him sooner than later. My GI here is really not helpful - haven't seen him in years. I am not really worried but want to be prepared.

I am really looking forward to this surgery and I agree with you that before I know it, it will be over and I will be healing nicely. That is the plan and I'm sticking to it!!

Thanks again for your encouragement and your great knowledge. I am sure I will come knocking with more questions.

Donna

Anytime at all Donna,
I wouldn't really worry too much about distances...my surgeon is in Toronto and I am in Paris, France...not the hospital around the corner, is it?
Most of the time all you really need is a good GP with an open mind, a kind heart and a little bit of intelligence...plus some basic medical knowledge. Basic bloodwork and other simple tests to let you know if you are not anemic, infected or low on something or to prescribe antibiotics if and when needed.
A good radiologist with a bit of imagination and very little ego goes a long way to avoiding long trips to see the surgeon too..I have all of my tests, scans and x-rays done here...then I send them off to him in a digital format for reading...after years of mis-treatment I have found a system that works...he then tells me what he sees, what I need and I have a guy here who can do most anything other than opening up my pouch (minor surgery and upkeep!).
So, don't let the distance scare you...
Hope that all goes well and if you need me I am only a PM away.
Sharon

Oh good, you put me at ease, Sharon. I do trust my GP who is also smart and compassionate. I suppose with the technology that we have at our fingertips, things are a lot easier now then say even ten years ago.

I am going in with a very open mind and do have faith in my doctor. I have a lot of support from my family which is very comforting so all is good.

I will update you when I am able to - don't have a laptop but will be in touch.

Donna,
Your Surgery is tomorrow so I shall wish you good luck, a long sleep and to wake up on your way to better health...my prayers are with you.
Sharon

How are you doing Donna?
Sharon

Donna, I have not looked on this site in a while since I had a death in my family. I hope you are recouping from the surgery. If you need anything you can have someone call me. If you lost my phone number send me a private post and I send it to you. You will stay in my thoughts. Jude

I never, ever expected to go in for a Kock Pouch surgery and two hours later come out with an ileostomy. I was/am totally devastated and did not even consider this happening in the scheme of things. I wake up at night and wonder if I am dreaming and touch my abdomen and unfortunately I am not. Evidentally there were so many adhesions that the doctor could not remove and then create the Kock Pouch from my J. He said there were some arteries in there that made it too risky to do much more so he made an executive decision to give me the ostomy instead of keeping me hooked up to my pouch. He said in 6 months to a year he wants me to go to the Cleveland Clinic and have the doctors there create a Kock Pouch - they are more set up there for complicated surgeries such as this. I am doing better emotionally than the first couple of days but still feel like a lost soul. I have such a supportive family that have been with me all the way and am so thankful for that.

So now I am taking one day at a time and trying to adjust to a different kind of outcome. I think I am still in a shock kind of mode so need to deal with my mental and physical state. I know it will get easier with time so am trying to be patient.

Donna, I was in a similar position when my GI doctor found dysplasia during a periodic scoping and recommended that my J pouch be removed. I had a follow-up examination at Mayo that showed no cancer to be present, but the surgeon said that I had significant adhesions (mentioned in earlier operative reports) and they would not do a K pouch because of my age. I was determined to not end up "on the bag" and explored my options for a K pouch or BCIR elsewhere. I was turned down by the Cleveland Clinic and a surgeon in California. Fortunately, I learned that Dr. Ernest Rehnke in Florida does BCIR surgery and has had good results with older patients. He accepted me for surgery and it was done this past April with excellent results. The surgery took longer than normal due to the adhesions. He removed my 30 year old J pouch and constructed the BCIR from a small amount of my small intestine. Dr. Rehnke has a great website that explains the BCIR procedure and they can mail you more information and a list of BCIR patients who you can contact regarding their experiences.

There are numerous posts on this forum from folks who have had good results with an ileo. It is my understanding that the Cleveland Clinic is a top rate place for K pouches. My wife has been very supportive of me during all of this and said emphatically that she would keep me even if I had the bag. She accompanied me to Florida and stayed in my room with me for the 21 days I was hospitalized. Please feel free to PM me if you wish, and best wishes on your recovery.

Bill

I am so sorry Donna,
That was a very unexpected outcome and I know how shocked you must feel. I can only hope that the doctors at CC will be able to help you get the K pouch in a few months once you are healed.
And that is the most important thing to worry about right now...healing.
Get some rest, get your strength back and some energy and then you can prepare for the next fight.
Hugs and hopes that this interim period goes by quickly and that you can finally get the k pouch soon.
Sharon

Thank you, Sharon. Yes, I am still not feeling well - very tired and still have pain but am trying to focus on getting better. You have such a big heart and I appreciate all of your wonderful feedback. I know you have your share of problems but are always there to comfort others.

I am going to step up to the plate and do my best to get on that uphill road. Hopefully in a year I will have my Kock Pouch.

Billy,
Interesting that Cleveland Clinic couldn't go through with the surgery. Was this just this past year? Dr. Worsey, who was with Dr. Launer in La Jolla, did my surgery and also trained for a year at the CC. He felt that Dr. Remzi from the CC was my best option so we shall see. I hate to hear that they couldn't do anything for you but am so happy that your BCIR has been a good experience.

Remzi no longer does Kpouches only trouble jpouches so Dietz and Ashburn are it at CC. They will be the same way usually. Walk the line of caution. I went to Rhenke in Florida as well. I have an issue with a nurse at the BCIR program, but he is one top notch surgeon.

I just saw him yesterday and having some stuff done to check my valve that CC did not offer to do. I have a handful of doctors for this reason. Everyone might do something the other won't or can't.

Perhaps that is part of my doctor's picture - Remzi removing the J-pouch and Dietz or Ashburn creating the KP. All of this stuff makes my head spin since you never know if you are really going to the right person. That simply scares me to death!

most likely Dietz and Ashburn would remove the jpouch since they are capable and Remzi is really on focusing on fixing jpouch issues. The wait time to see him is long, I was denied since I have a continent ileo and sent to Dietz.

I am a firm believer to consult with a few surgeons. I know a guy on 'Meet an Ostomat'e who went to get a kpouch from a surgeon I used for follow ups in Dallas, and he woke up with a bag too. He went in with an ostomy though not a jpouch. Towards the end of the surgery the surgeon at Baylor (Jacobson) said he formed a fistula and he took the pouch out an slapped a bag back on him. He is going to Rhenke next in Florida and wishes he did from the beginning since he thinks it would have been a different outcome.

Now.. I have a friend who had a BCIR then formed fistulas due to Chron's and went to Dietz at Cleveland clinic a few months ago. She formed the same thing the previous guy I mentioned did, but they gave her a bag for the temp ileo she had and a bag for the fistula. She was septic and still is I believe. Her wounds opened up and is on a lot of meds. BUT they fixed her pouch and are waiting or her to heal in 6 more months to reconnect her.

Another friend of mine got a jpouch in Cali. She had a previous gastric bypass that they had to reverse before taking the colon out and creating the jpouch. Her adhesions were SO BAD it took them 6 hours just to remove them then start the actual colectomy surgery.

Story is, every surgeon has strenghs, weaknesses and willingness. you have to see what they say based on your situation but never give up Stupid MD Anderson wanted to give me an Ileostomy and told me I would have short gut syndrome, live on TPN, etc. with FAP and a BCIR. I left that place so fast and never returned. I met with other surgeons and got so exhausted and wanted it my way, it is my body, they needed to work with me. I flew to Florida and had surgery that week. I told Rhenke if he couldn't do the surgery for some reason to leave my colon in tact and sew me up and I would continue my quest, in the short time frame I had with cancer. In the end it worked. I have some issues now, but don't we all!

Donna, you have a lot on your plate now and it is important to concentrate on your recovery and getting your strength back. I am glad to know that you have a very supportive family, as my family was very important in my recovery from several operations. There are numerous "war stories" on this site that can be upsetting to you at this stage of recovery since some people have had less than desired outcomes. Most of these surgeries produce good results.

I urge you to obtain more information concerning your condition and about other surgeons who perform continent ileostomy procedures. Prospective surgeons will want to review certain parts of your medical records and possibly discuss your case with your latest surgeon. You will want a surgeon who has done many of these procedures and is comfortable with operating in areas that have numerous adhesions from past surgeries. I made contact with Cleveland Clinic last January and was not given a definitive answer on their rejection. I received a very positive response from Dr. Rehnke and his staff and this was followed thru when I had the surgery and their follow-up after I returned home. But for now, concentrate on your recovery.

Bill

I am not sure what the odds are about a successful Kock Pouch with the issues I have but I feel like the Cleveland Clinic would be the first place for me to check out. I am sure they have dealt with circumstances like mine- adhesions aren't that rare. It does scare me that the CC rejected both of you, Vanessa and Billy. It seems like that is a GO TO place for so many and then you hear about cases like you. I do know that there are many successful stories too.

My current surgeon thinks the sun rises and sets there so I guess I will try them out first. Hopefully it will be good news because I don't know if I could go through what you, Vanessa have gone through these past few years.

I just need to get stronger from this surgery and stabalize a bit. This ostomy is no friend of mine. I am constantly emptying and there is a smell that is driving me crazy. I don't think it is poo but maybe the plastic bag interacting with the poo so it is like a strong chemical smell. I smell it constantly today and it is driving me nuts. I use Adapt and it has not helped. I will try some other recommendations and will talk to my home nurse tomorrow. All in all, it has been a miserable two weeks. I am really trying but when you are constantly smelling this odor and constantly emptying, where else can my mind drift to?

Are they testing you for C.diff or small bowel bacteria overgrowth? Those have a potent smell for sure.But I understand completely. I wore a leg bag for a few weeks and swore I smelled like a moving dumpster. It was just in my nose all the time.

I was turned down based on not having jpouch issues actually by Remzi's dept. But I will say if you want to see Remzi book it now. The wait is about 6 months to see him.

Oh Donna, I'm very sorry to hear Dr Worsey couldn't perform the KP. I do like the fact that he didn't attempt something he didn't feel he could do successfully.

I am seeing Dr Kaiser at USC in Dec as a 2nd opinion after I see Dr Worsey. I'll let you know what I think about him and his exp. It looks good on paper. Although I beleive the T pouch is struggling, but he does KPs.

There is a great deal of support for the ileostomy.....I wish you the best. Janice