Kock pouch/BCIR

I had my BCIR surgery in April, 2013, but do not feel I could adequately address your concerns with a “shot in the dark” response. Although my surgery went well (it was complicated by adhesions from prior surgeries), I did have several bouts with pouchitis and other minor conditions that are possible during recovery. All of these have cleared up and I am leading a normal life. Please feel free to PM me with your contact information and we can talk more.
Bill

Likes:
- NO OSTOMY BAG or appliance!!!!
- empty only 4-5 times a day
- generally no feelings of urgency

Dislikes:
- Always have to have a catheter on you
- Not easy to empty in public bathrooms (because sometimes there is no where to set your stuff, sometimes toilets are too low - I like to stand to empty)
- have to put cath in to release gas
- have to be really careful about chewing fruits and veggies

for me the likes greatly outweigh the dislikes.
I have had no pouchitis, and no trouble with the valve. my pouch is 5.5 years old now.
I have however, had stones in my pouch that had to be removed, once with scope and once broken up and removed with a sonic-type device like for kidney stones.

I am really happy with my decision 95% of the time
--
katie

Thanks Bill and Kayd,

What kind of stuff do you need to bring with you to the bathroom?

I chew pretty well with an ileostomy, but what happens if one slips by larger than your catheter? Does it just sit in there until you get scoped or something?

Do you frequently have to irrigate with water?

Bathroom Supplies
• Catheter
• Patch or dressing to cover stoma
• Lube (can use small prepackaged )
• Syringe (60cc)
• Cup with water (or plastic bottle) if needed for irrigation

I’ve gotten by with just the catheter and patch in a plastic bag when using a public
restroom.

Fresh fruits and vegetables that are not thoroughly chewed (it happens!) will pass into the pouch and be caught by the catheter when emptying. These things are easily removed from the catheter with a tissue or tweezers and the catheter re-inserted to finish the job. It happens fairly often for me (I love fresh fruits and vegetables) and is a minor issue. As they say, you pay to play.

I irrigate only when needed to thin the stool so it will flow out through the catheter, which has only been occasionally.

I am very pleased with how my BCIR functions and am thankful that I can do everything I did before my first surgery.

pro's: No bag which would limit my activities like going to beach, swimming at hotels when on vacation,etc..

Con: Sometime it is difficult to enter and I have to do things that I can not do in a public restroom(Lay on left side,etc..)This keeps me from doing some fun activities.

I would chose it over a bag without a doubt, but it is definitely not a perfect answer.

The thought of being bagless is intriguing. May I ask why it is difficult to enter the pouch sometimes?

Also I am repeating myself. What happens if you accidentally swallow a veggie or some other undigestible food and not chew enough and its bigger than the catheter? Does it stay in the pouch? Does it continue to digest until its gone? Do you have to get it removed?

Thanks.

I would hope anything bigger than the catheter continues to breakdown/digest while in the pouch until it can be removed, but I am not sure.

Regarding the difficulty entering the pouch it has really only become a problem over the past 5 years or so. For the first 30+ I rarely had any issues. My valve may be a little messed up, but not enough for me to have the surgery to repair it.

Dz20,
I am a 34 yr veteran of the k pouch, number 13 done by my surgeon. I was 18 at the time and had had a horrible time with my colon, IBD and constant incontinence so anything that could give me back control and my life was a godsend.
Like: NO bag, no appliances, no fuss, muss or skin irritations...for me that meant freedom
I eat pretty much most things, chew really well but if I don't then I just pluck the stuff out of the tube (the tube can drag out pretty much anything behind it. Stuff gets stuck in the holes and just comes out. Occasionnally the stuff that is too big will take a day or two to break down in the pouch and come out later...no biggie).
I sometimes use a blender or mixer to blend stuff when I am sick or lazy. I travel, live abroad, work 12hr days across the city and take public transportation both ways. Life is in the 'normal' catagory.
I only carry my tube, mini packets of lube and a syringe and/or a squirt-top water bottle with me. I fill the water bottle, lube the tube, pop it in, empty out, squirt the water through it, wipe the stoma and cover it with a folded up kleenex. Once the tube is rinced out I put it into a plastic pencil case and I am done. If I have been 'good' (read: chew, not eat silly stuff, drank enough fluids etc...then things just flow out...takes 1-3 mins)
Don't like: Well, it has been so long that I can barely remember life pre-pouch. I don't like it when my pouch is upset or when I needed repair surgery and no one in France was capapble of fixing it. I had a heck of a time and needed a lot of fixing. (my body, not my surgeon were the problem).
Yes, I am not like everyone else but then again I wasn't pre-pouch either. It is a pain when I can't find a decent bathroom, if the pouch has a problem it is harder to find a good doctor and you need to get used to it but once you get the nack you should be fine.
Hope that this helps
Sharon

where in Florida are you?
I've had both continent (Kock) and end ileo.
Rather have the continent ostomy.

I am in S/W Florida.

What does it feel like when you insert the catheter to intubate?

There are no nerves inside the stoma leading to your pouch and none in the valve itself, so intubation is not a painful process. Sometimes there is a tightening at the opening, but it will ease up and the lubricated catheter slides in. Sometimes, when you reach the valve, it feels like a brick wall. In this case, I just relax my lower abdominal muscles and gently move the tip of the catheter around (I prefer the Marlin 30fr curved catheter with the blunt tip) until it slides in. Everyone’s pouch and valve is a bit different, so you will “learn by doing” what works best for you. The nurses at the hospital give instruction on how to intubate shortly before discharge and I had no problems once I was on my own.

Hi dz20, I’ve had my K-pouch for 34 years and love it. But the year before the K-pouch I had the standard end-type ileostomy so I can compare the two. I was happy with the standard end-type, because it because it was the first time in 10 years that I felt healthy and ‘normal’ (not having to run to the bathroom with diarrhea). However, I didn’t like how it eroded the skin around my stoma and how risky it was to change the bag because it would spew unexpectedly. I also didn’t like how it would pass gas unexpectedly, especially in a quiet room! (Looking back now, I think I probably could have controlled a lot of this with diet). Then because I had to have another surgery, they told me this time they could do a K-pouch. I loved the pouch once it was established and I learned what not to eat. My first meal of a large plate of spaghetti with tomato sauce had me in the bathroom for over an hour wondering if I’d ever get it all out of the pouch because it was so thick it wouldn’t flow through the tube. No amount of irrigating would dissolve it so that it would flow! I also hate taking antibiotics for the same reason - the first couple of days on them thickens the stool so much that it doesn’t flow through the tube. (I’ve learned to drink prune juice and other juices if I’ve got to take antibiotics - it helps somewhat). I’ve also learned to be careful about the types of roughage I eat and how much of it. 30 years ago I was on a diet that had me eating a lot of carrots. I saw carrots coming out when I emptied the pouch, but didn’t realize they weren’t ALL coming out. Eventually my pouch started cramping and the doctor had me take flagyl for pouchitis. That worked for a short while, but then the cramping recurred and the doc finally had me leave the tube in and wear a drainage bag for 10 days. Well, after about 4 days, the carrot pieces started coming out and out and out! The problem wasn’t that they didn’t fit through the catheter holes, but just that there were too many of them to flow out with the rest of the food that actually breaks down and flows. Also I would suggest not taking any tablet-style of pill if it doesn’t readily dissolve in a glass of water. I was given a prescription for generic potassium tablets years ago, and after 10 days of taking them I siphoned one of them out of my pouch still whole and realized my body wasn’t breaking them down. I stopped taking them and it took a couple of weeks to get the other 9 out of there. The tube seems to eventually pick up things that are too big or heavy (yes, things do occasionally slip by). They’ll finally get stuck in one of holes and you carefully pull the catheter out and are able to get them, but don’t really know if there could still be some things in there without a scope. Keeping a healthy gut flora is important too so that you don’t get pouchitis. So I’d say the life with the pouch is great, but you have to be a little more careful with what you eat than you do a standard, end-type ileostomy.
By the way, I don’t know what others do, but I cut a few inches off of the length of my catheter and then attach a latex drainage tube to the end of it. This makes the whole tube length long enough so that I can sit on the toilet and the catheter/latex tube can drain out lower into the toilet, just above the water. By cutting off a few inches of the catheter and attaching the latex tube, my left hand is able to squeeze the latex tube (easier to squeeze than the silicone catheter) which helps siphon out the contents if the flow is a bit thick. (Kind of like milking a goat if you’ve even done that!)
Hope this helps you with your decision.

Thanks DG. My main issue with the end ile is the noise it makes. Would you say that you try to avoid all carbs for the most part? Just wondering because I love breads and pasta. The veggie thing doesn't really concern me because I don't eat many that aren't cooked. Although I do miss eating veggies, not eating pasta would be way worse.

Hi dz20, I started seeing a naturopath about 4 years ago and she put me on a gluten-free diet (she actually put me on the Blood Type Diet, and being a blood type O, I had to give up gluten). I noticed after eating this way that I have almost no gas and the output in general is more stable. I still eat carbs like rice and sweet potatoes, etc. and they don't cause me any gas (there are some pretty good rice pastas out there!) I tried some new foods like quinoa and sorghum, and even thought they're gluten-free, they caused me to have gas, so I avoid them or eat them when the gas issue won't be a big deal. Even though the K-pouch won't make the noise of an end ile, I don't want gas because the only way to get it out is to put the tube in. Lately I've been learning more about gut health and how gas is the byproduct of food that's not being fully digested and is fermenting in there and feeding the bad bacteria. I also take probiotics and lately added enzymes to help to digest the food better. You might try reading about leaky gut and experiment with foods to see which ones are causing gas. The good thing about the K-pouch is that gas just sounds like your stomach gurgled.
Good luck!
Debbie

I eat everything at 2 years out. I had a rough 2 years but now I am golden. No issues at all with my BCIR.

DZ20,
I started eating a 'dissociated food diet' around 1990 (it was fashionable at the time) and discovered that my pouch loved it. I ate mostly animal protiens (meat, fish, chicken, sea foods etc plus some hard cheeses, soya and nuts) along with tons of raw and cooked veggies, had my fruits and fruit juices for breakfast or 4pm snack and avoided too many carbs. I gave myself 1 carb day a week where I allowed myself to really enjoy my bread, pasta etc and I maintained a happy and healthy pouch for years.
Recently due to severe stress I started really eatting carbs again on a daily basis and mixing them with protiens (chicken and rice, meat & potatoes, tuna sandwiches, sushi..) and I really put on weight plus have a sluggish pouch, thick out-put and very gassy.
I cut out the carbs 2 weeks ago (it took a lot of willpower!) and have already lost my tummy and my pouch is purring happily.
That is me and my pouch...it allows me to eat a larger variety of food if I don't mix them too much...more to do with digestion than the pouch I think but it works...for me.
You will find your balance once you have your pouch...it is live and learn...
The only hard, fast rule? If the stuff is too thick, drink grape juice or prune juice and it will thin it all out.
Sharon