November is 44 years with a Kock Pouch :-)

I saw Dr. Bauer this past July because I thought I was having an issue with my KP. Had to fly to NYC (Mt Sinai) because there are NO colorectal surgeons in Colorado who are familiar with the KP. My KP turned out to be perfect...problem was a kidney stone...flew back to Denver and had lithotrypsy. Congrats on your 42 years!

Congratulations!

My K Pouch was 36 years old on Nov. 9th. It was done by Dr. Fishbein at Johns Hopkins in 1982. I was only 21 years old. It worked perfectly until the last year and half, but I’m hoping to get back on track with it. I’m not giving up on it yet. 

Hi All!

I am so happy to have found this group! I had a k pouch done by Dr. Gelernt at Mt. Sinai 39 years ago because of UC.  My pouch worked great for so long! I had 3 children. It was fine. I had a case of pouchitis once years ago. Then, over the past couple of years, my pouch was more irritable. And now I’ve been fighting pouchitis and the pouch will leak gas at times. I feel like I have 2 things going on. 1. I’m fighting pouchitis. Which actually can get you very sick and give you Crohn’s type symptoms which included terrible joint pain. 2. Even though I’ve been scoped, Dr. Rubin in NYC cannot see a problem with the nipple valve. However... I’m thinking I will need a revision at some point because I’m used to a functioning k pouch and I really cannot function if gas is going to leak at any point. Even with the pouchitis quieted down the pouch leaks gas.  I went to see Dr. Bauer at the beginning of all of this, before I even go scoped, but he said if he had to do a k pouch revision he would change the location of my pouch to the other side of my abdomen, etc, etc. It scared the blank out of me. It seemed like a big surgery rather than a small revision. Over 30 years ago, when Dr. Gelernt did a couple of revisions he never changed the location of the k pouch opening. So... there you have it and thanks for listening. I’ve felt pretty alone with this for a very long time. I’m just not sure what to do. Also- when I saw Dr. Bauer he said “oh, we never guarantee that gas won’t escape from the pouch.” So...Do I go back to Bauer? Do I go try to get a BCIR? I like Dr Bauer and wish Dr. Gelernt was still around. I’d go to him in a second. Thanks for any advice! 

Hi. Yes. Dr. Bauer is extremely knowledgeable and responsive! He’s top notch for sure. But I wasn’t sure about the idea that it is acceptable at all for gas to leak out from a k pouch sometimes and that the site would have to be moved to the other side if I had a revision. Those aren’t really acceptable conditions for me at this time. So... I’m wondering about the BCIR surgery and others who have had recent k pouch revisions and how they are working? Thanks. 

I definitely hear that. To go back into surgery after everything we have been through with surgeries in my life, is a huge deal for me. I also know there is recovery time and pain and risk. It’s hard because, I like just wearing a patch on my side. It has given me freedom over the past 35 years. But now, I need to put a bag on my side if I’m going to class, on a long car ride or even out for a whole day because...gas can and will escape at any time. You can’t live just having gas leak out at any time like that anywhere.  That’s not ok. So- I either deal with what I have (wear a bag in many public situations) or try to take the surgical risk and restore my k pouch nipple valve to the way it was. 

Bodoni posted:

Congrats! I have had my K-pouch for 42 years. Bauer did mine at Mt. Sinai in NYC.

Wish I had mine by the late Gelernt. He was the best. He studied with Dr. Nils Koch in Sweden - 1969. My pouch leaks a bit - I've had 1 or 2 revisions.

That interesting. I had my K Pouch 44 years ago in UK.

learned a lot over these years but my health is good.

 

Bodoni posted:

Congrats! I have had my K-pouch for 42 years. Bauer did mine at Mt. Sinai in NYC.

Wish I had mine by the late Gelernt. He was the best. He studied with Dr. Nils Koch in Sweden - 1969. My pouch leaks a bit - I've had 1 or 2 revisions.

That interesting. I had my K Pouch 44 years ago in UK.

learned a lot over these years but my health is good.

 

I had my k pouch done by Dr. Gelernt in 1979 and a revision with Dr. Bauer in 1999-2000.  I see Dr. Rubin due to pouchitis which is troublesome to say the least.  I was told in 2017 by Dr. Rubin that there was ulcers in my pouch and that they are seeing crohns like symptoms in older pouches.  Anyone have success with any medications with recurring pouchitis?  Dr. Rubin is now putting me on xifaxan vs cipro.  I heard about VSL probiotics?  Anyone use biologics?  I live in upstate NY and the docs up here aren't sure what to do with K pouches so I make the drive back to NYC. 

Arlene – – so sorry to hear you have developed pouchitis. There is quite a bit of information on the site about treatment. I don’t think it makes a difference as to whether you have a J or a k pouch as to the treatment.  That said, a couple comments.

the stoma nurse at Cleveland clinic said frequent irrigation could help minimize the chance of getting  pouchitis.  I think this makes sense because the  less that stool hangs around in the pouch, then the less bacterial buildup.    my pouchitis necessitated removal of my J pouch three years ago and so far no reoccurrence.   I irrigate almost every time I evacuate.  

You will find lots of opinions on what works and doesn’t and I think that’s reflective of how individuals respond differently to various  treatments.   what was very effective for me is to go off all refined sugar and I have stuck to that routine, well 99% — have some dark chocolate every day.  No doubt rifaximin works for some, but for most of us it didn’t. Very very expensive. One antibiotic that is not often mentioned, but was very  effective for me, is Augmentin.  From what I have been told, by my G.I. doctors, vsl is effective only if the pouchitis is in remission. Other people swear by it.

In solidarity with the frustration of my doctors not knowing what to make of the k pouch.  And I live in Boston! Good luck with the treatment. Janet

Hi Arlene, I am in a similar situation. Have had the k pouch for over 35 years but now am fighting pouchitis for a little over a year and also have Crohn’s like symptoms to include mouth sores and joint pain when a flair up is bad. Never had this before. Dr. Rubin put me on a few things at different times. I tried xifaxin. It was good for a little while but did not really last as far as controlling the pouchitis. But it’s worth a try. I had no bad side effects with it. I tried budesonide pills for many months. It helped a little for a while but didn’t get rid of the pouchitis fully. Recently he put me on prednisone 60 mg which I tapered down and flagyl. I think this helped with my pouchitis symptoms but taking those 2 meds was extremely tough on my body in other ways. I don’t know if I could do it again. So far though, it has slowed down my pouchitis symptoms. I am hoping it lasts for a while. I have not tried biologics yet. I am cutting all dairy and gluten and have as little sugar as possible. Hoping it helps. Augmentin has helped me in the past and that is a good one to try as mentioned above. 

I hope you find something. Please let us know how it is going. Thanks. 

Thank you both, pouchitis sucks.  I hope to see Rubin soon to see what else we can try, honestly for a long time I took cipro 500 mg every other day (I know crazy) and it helped for a few years.  But April 2017 Rubin scoped and found raging ulcers in pouch but days later I ended up in ICU with PE causing heart failure.    I left hospital on prednisone and Xarleto, prednisone 40 mg a day.  Somehow after days in ICU no pouchitis?  Cause of IV? Anyhow a few months ago after predisone dose lowered to 5 mg a day things flared up again.  GI docs up here at a loss.  I am so thankful to be able to reach out to all of you!  

Arlene,

How did your revision go with Dr. Bauer in 1999? Is your k pouch still continent?   Why did you need it and did his revision solve the problem you were having?  Did he change the side of your k pouch opening or did you retain the same one? Thanks for any advice you can give me. Because I am considering having him do a revision at some point! Marce 

Dr. Bauer was the surgical resident in on my KP (Drs. Gelernt and Kreel) in 1974. As I noted I flew in to NY recently because I thought I had an issue and there is no colorectal surgeon in Colorado who is truly familiar with the KP.He was caring and reassuring. I highly recommend Dr. Bauer. 

Was not a KP issue;-)

Thank you All, for all your comments! Much appreciated!! 

To address your post up above Arlene...    I’m sorry it’s been so hard. I’ve suffered this year too. It’s a bit scary. I don’t know how you did Cipro for so long. I would if I could. I know it helps but i Can’t tolerate it very well. As for the prednisone, after I stopped - I got my symptoms back just a little. So although prednisone helps for a short time, it’s not a cure. I wonder if they took out the old pouch and built a new one if that would get rid of our disease and give us 20-30 more years with a k pouch with no symptoms. I know that may not be realistic if we don’t have enough intestine left. It is also a big surgery and I’m not sure if I could do that. Or... if the pouch needs to come out will we  get the disease under control? If we take it out will those painful Crohn’s -like symptoms then go away? The pouchitis would, but would the mouth sores and joint pain too? Of course, I don’t want to lose my k pouch! Just trying to figure it all out. I hope you and everyone else with pouchitis finds the things that will help put it into remission. Marce 

Just reading posts.  My story is back to front than those I have read

For many years I must have had pouchitis. Could not get any help. 

I was allowed ciprofloxine some years ago for a short while. I am now not allowed any meds here. Antibiotics are not allowed.

I could seriously write a book about this pantomime.   I am now so good with my diet. Yes dairy is a horror followed by wheat and coffee. I have never been able to tolerate fats. All herbs and spices are fine. Turmeric is excellent as this is anti inflammatory.

If only doctors tried to grasp the subject.

I have been told by a Nutritionisthere that I still have the ulcerative colitis condition and that is what doctors fail to acknowledge. I honestly believe this to be true.

Bubba, 

My surgeon, Dr Z Cohen, who did and redid and re-redid mine since 1979 says differently. According to him you can redo them as long as you have enough intestine. He also flips them over to create new valves so that he does not need more than 30cms of small bowel to do it...saves a lot of bowel that way. He always told me that I had enough to redo my pouch 3xs if needed. 

Sharon

First off, Congratulations. 44 years is worth celebrating!!!!

Next, mine was done in 1979 by Zane Cohen (retire recently...don't know what I am going to do without him!!!) at TGH in Toronto but he then moved to Mt Sinai and opened the IBD centre there...Wonderful staff, wonderful people. 

I have Ehler's-Danlos disease so I do not heal. Every surgery leads to 3 more. It was a nightmare for both him and me. But we got through it...took 3 surgeries (pouch fell off of the wall, twisted, unfinished 2nd surgery...I woke up in the middle!) to finish and get a working pouch. 20 yrs later had a very botched redo (moved the site up to under my belly button!!! Idiot) here in France and then Dr C did emergency surgery on me when the valve sunk and twisted because of the new site. He went back to the original site. 

2 yrs later he had to move it due to a peristomal hernia that required numerous redos and ended up moving it again later...Always on the right side. 

Since then (and menopause) I ended up with about 8 surgeries (I look like a patchwork quilt inside...All mesh!) including 4 laparoscopic ones to fix hernias etc. Still the original pouch. Just new valves. He flips the pouch over each time. 

As for diet? I use a dissociated diet to avoid pouchitis. I had it continuously for about 11 yrs in the beginning until I figured out that the dissociated diet helped me to control it. It gave me something that no one at the time could...reasons, explanations and methods to control my digestion, output, pouchitis. 

I read a book, it explained digestive processes, I followed the logic and it worked (for me)...doesn't mean that it will work for anyone else but it is so easy, free and uncomplicated that after nearly 27yrs doing it I could not imagine eating any other way. 

I have coffee or tea, water + vitamins, freshly squeezed juice and some fruit in the morning when I wake until noon. Usually, a banana break or other fruit around 10ish to fight the empty feeling and hunger. This successfully clears out my pouch every morning. 

At noon, if working I eat cheese chunks/Greek Yoghurt with cherry tomatoes and olives (easy, quick, no brainer). At home chicken/fish/meat whichever I am in the mood for with green veggies (raw, steamed, cooked...) or pasta/bread with butter and herbs. Sometimes I do veggies soups and toast...love it.

Whichever I ate a lunch (Protein or carbs) I eat the other one for dinner...So I eat 1 protein and 1 carb meal for balance. 

If I need to lose weight I go to 2 protein meals/day. If I need my winter comfort food, I do 2 carb meals/day (puts weight on me)...

I am in control. 

I went from Chronic pouchitis back then with the associated exhaustion, pain, cramping, bloating etc to almost no pouchitis in 27yrs. 

I get about 1 bout every 2-4yrs. 

I am off of antibiotics. And that makes a huge difference. I absorb mostly well, eat most foods that k pouchers avoid like nuts, popcorn and fresh veggies. During the week I am mostly vegetarian out of laziness. Just easier for work. Weekends I eat my meat and fish. 

Dr says that my numbers are good, my pouch is happy (except that it just farted in front of my hubby and scared me to death last night!) and that I should keep doing what I am doing.

Sharon

 

Sharon,

i have always considered myself ”special”..because I got  rid of my 12 year battle with UC and all of the meds I had to take. I have lived the last 44 years not thinking of..or exposed to the issues that some of my “compadres” have had. I thank G-d for my life every day. Learning about the issues that have avoided me and hearing stories like yours has had an impact on me. You and the other folks on this thread are the truly special people who have endured.... You folks are “special”..... I am just a lucky bystander. G-d bless you all!!!

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