- NO OSTOMY BAG or appliance!!!!
- empty only 4-5 times a day
- generally no feelings of urgency
- 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
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?
• 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
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.
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.
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?
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.
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
I've had both continent (Kock) and end ileo.
Rather have the continent ostomy.
What does it feel like when you insert the catheter to intubate?
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.
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.
Sorry folks when I find an interesting article on my Apple lap top, I cut and paste the address and e-mail it to myself. Then I can pick up the e-mail on my PC which is connected to a printer, and print a copy. But when I try to share this web site using the Ctrl V, somehow buried in that url is a link to my e-mail. Here goes again, I hope this works. This article is written by a Doctor who has thoroughly researched and tested the efficacy of use of H2O2. Here is the link