Hello everyone!!
I am so happy to have found this place. My husband Bud just got a K-Pouch done 27 days ago by Dr. Fazio. I know he is only 4 weeks out but he is having a real tough time recovering. He is still very nauseous, still losing weight and have also had some major issues with leaking (tube fell out and stool gushed out) Just trying to get some feedback on when he might start feeling better, I know everyone is different.... but any input would help. Thanks so much,
Angie

Hello,

I hope Bud is doing better.

Does he still have the tube draining into a leg bag? If so, does fecal matter leak out around the tube?

When you say stool gushed out, was it from the pouch and valve or just what was in the tube?

He will gain weight once he starts to eat more regular foods. See if you can get him to go out and walk and get some exercise. I suppose he can eat soft bananas, rice, applesauce, hot tea, etc.

I have had a K-pouch for 30 years. Dr. Bauer at Mt. Sinai in NYC.

Take care, and let me know if you have any more questions. If his valve is leaking all the time - call Dr. Fazio's office and keep him informed.

John

Bud is still on constant drainage. What happened was the drain has never really worked good. I have had to constantly manipulate it, out and in about an inch, etc. just to make anything come out. Because of this he is constantly getting backed up and nauseous. Well about a week ago stool came out everywhere with the tube in, so I had him get in the shower to clean up so I could see what was going on. While in the shower the tube came out and his stoma just starting spurting stool out. I got the tube back in and called Cleveland Clinic who told us to go to a local Dr. that Fazio recommended. This was a week ago and that Dr. said that what happened was o.k. since the valve wasn't healed yet. This doesn't sound right to me, but I redid the constant drain, so it actually does constantly drain now (I think it was in too far). And we go back to this new Doc again tomorrow for the tube to be taken out.
I am really scared that the valve has slipped and the pouch isn't going to stay continent. If stool comes out without the tube in I guess we will be flying back to Cleveland. My husband has multiple sclerosis i.e. the reason for me doing the irrigation and stuff. I just don't think his body could handle another surgery so I am keeping my fingers crossed that this turns out o.k.
Has anyone heard of this happening before?
Thanks so much,
Angie

You are right, you may have had the tube in too far and that can allow for some leakage. I will keep my fingers crossed that the valve does not leak when removed. Plus, your doctor is right, the valve is not totally healed yet.

Keep us posted on how things turn out.

Wishing you the best,
John

H! I have a k-pouch too, done over 4 years ago, also by Dr. Fazio.

I remember that when I was on constant drainage, the tube sort of kinked...in other words, it would sort of fold flat against my body where it first came out. A local ET nurse devised a little new system; she taped a piece of popsicle stick where the tube used to bend which allowed the flow to resume. When the flow is impeded, one naturally gets a bit nauseated.

Maybe you should check to see if the tube is bent at any point before it gets to the bag.

Best of luck to you both.

I was driving past you on my way to Gainesville two weeks ago!

You can check for kinks and how far the catheter is inserted. Is the stool too thick so that it would have trouble flowing? Is Bud drinking plenty of fluids?

When are you scheduled to return to Cleveland for him to remove the 24/7 drain and check the stoma /pouch?

Thanks so much for everyone's advice. Bud's constant drain isn't leaking anymore and it is coming out good... not too thick.. lots of juice and gatorade to keep him hydrated. Just hoping tomorrow when the constant drain is taken out that everything works right. Dr. Fazio set us up with a Dr. Larach in Orlando to go to so we don't have to go back to Cleveland unless there is a problem. But of course if something needs to be fixed we will definitely be going back to Ohio.

I've got to tell a quick story... Our youngest daughter is 1 years old she will be 2 in a couple of weeks. Well since I am not working right now, taking care of Bud, I thought this would be the perfect time to potty train her. She is doing great with peeing on the potty, but everytime she has to go poop, she runs to the kitchen to get a straw. She takes the straw and tries to stick in her belly button and says "like Daddy".. now I think this is freakin hilarious but my husband who is normally very laid back and happy go lucky, is horrified. Still think it's funny.

Please think good thoughts for him that tomorrow everything will go well and the valve didn't slip.
Thanks,
Angie

I just gotta say that is freakin' adorable. Just wait til she tells everyone that her daddy poops from his tummy. Some preschool teacher will be very confused and/or disturbed

Hi Angie and Bud,
Welcome to our group. K-pouches take a while to heal and function so hang in there.
Hope you find help and support here.
Bill (K-pouch by Fazio 1997)

Hi Angie and Bud
I am a new K poucher myself, 2months and 1 week. Welcome to the group. I know how your husband feels, I was the same way. I does get better with time. In about 3 weeks more he will feel stronger. The doctor said it was normal to feel weak and sooo tired all the time because it is a major surgery! When I had the constant drain in for 4 weeks it leaked around and I had to change the bandages 3 times a day. I used to put two guaze pads on the top and bottom to absorb the liquid and fabric tape wrapped around the tub to keep it in place. I was afaird my valve slipped too but once the tub came out everything was fine. Bud has to drink alot to keep things liquidy and he has to chew very well(most important)! My constant drain was a little clogged when the doctor pulled it out, maybe thats why you have to manipulate it, gets clogged. This site is the best place to get info from. I just went through it and am still continuing to heal. I am returning to work next week. Let me know if you have any questions. Good luck to you both. It is very frustrating but you will get to the light at the end of the dark tunnel.
Karmen

Hi Angie, Bud,
Welcome to the most wonderful, exclusive club in the world...I feel rather priveledged to belong. I've had my pouch for over 28 years and have only recently started to have problems.
Since your tube is coming out tomorrow, all should start to improve quickly...Strength, energy levels etc....Be patient and give it time to heal. Even if the outside looks like it is healed the inside is far from done.
I find that a hand held blender ( or stationary) is my best friend. To avoid major complications and constant blockages but to get all of the natural nutrition that Bud needs to heal, try putting fruits, vegetables and pretty much anything with fiber, through the blender.
I make lots of cold "soups" with leftover salad fixins or fruits. If need be I strain some to make sure that it all "comes out" smooth.
My husband was starting to get frustrated with the "your diet, my diet" dinner plan so I just started making the same thing for the both of us and blending mine...works wonders. Lettuce, tomato and cucumber makes a great summer soup and so does pretty much every combination. The salad dressing makes it liquid enough. The added bonus is that my grandkids ( 2 and 3 and a half!) like my stuff better! I do loads of pureed or mashed vegetables with really neat combinations. Squashes and potaotes or any green veggy, a bit of butter or olive oil and I have a wonderful meal. My husband is starting to steal my stuff too!
I hope that all goes well for you and that the K Pouch experience is a very long and happy one for the both of you...when it works it is really a miracle in progress
Sharon

Angie
I will send some stuff to Fran for Bud. I will mail it on Tuesday.
Also, ask for any samples they may have while there. They will hook you up.
I have medina 30 fr straight, medina 30fr curved, marlen 30 fr, straight, marlen 24 fr straight, extension tubing, nipples, face plates, foley bags, belts, leg bags w.straps all on hand as we have been through enough emergency situations to know better. Lots of different size syringes, irrigation trays, plastic cylinders, and more!
I order curity pads by the case 2 cases at a time since they are always on back order. I order catheters monthly at least 12, since Chris says they are no good after they get bent where the holes are.
austin medical will send samples also.http://www.ampatch.com/
speak to christopher there-he's great

sharon, really? you blend up veggies and it tastes good?
i'm a bit wary of doing that b/c i feel like it'd be like baby food, and i despise baby food. but it would be nice to fix dinner that both he and i can eat. OR for him to make a dinner and not to have to becca-proof it (heheheh...he's so cute)

the salad blending i may just pass on, sounds a little too gross. and i'm not too fond of lettuce. but mixed cooked veggies like squash, etc. i may be willing to try. great way to get my daily intake of veggies (i was never good at that even when i had a colon..heheheh)

Actually, I was really into shakes and smoothies for years and spent hours juicing all of my veggies...but it took forever to do it and I often got lazy. Then I Just decided to try the salty stuff using the hand blender, and wow! It was great. Salad dressing and all. I got the taste but not the cloggs and pain of trying to pull it out of the cath ever other day. Now I use it for lots of stuff, including soups and especially squashes and stuff that has been off of my list for years...It feels so good to be able to eat certain things again. No I don't feel like I am eating baby food, no baby has it this good! I feel rather sophisticated...cold french cucumber soup, spanish gaspatcho...italian tomato. All cold soups...maybe those guys had pouches too!
Make it chic, decorate it and it will become a trend in your house. I also use it as sauces on meats now, kind of like salsa without the clog!
We can start a recipe page if this keeps up!
Sharon
P.S choclate mousse digests really well
Sharon

Sharon,

How is your valve doing? Fine, I hope. Keep us posted. I know you went in for a slipped valve and you were a bit concerned if the procedure would work or not.

JW