Pouchitis in K pouch--any experience?

Hi Janet, 

Breath...breath....

Ok, my take on pouchitis...

Liquidy output (moreso than normal), bloating, gas, cramping, urgency and some blood or watery output...Although I never bled during my bouts of pouchitis.

Can you please try a 'fit for life' elimination diet? That is how I got control of it back in 91...

In the mornings I have coffee or tea, juice, fruit, water...nothing else til noon.

My mid-day and evening meals are dissociated...I choose to either eat a protein (meat, fish, chicken, cheese, seafood, tofu...) or a carb (bread, potatoes, rice, pasta...) and then accompany them with vegetables (cooked or steamed or raw) and any fats that I choose (olive oil, butter, vinegar, condiments etc).

I eat my fruits in the late afternoon or before bedtime.

I drink a homemade lemonade with dinner every night.

I avoid most dairy except for unprocessed cheeses and yogurt.

I start every season with a 24-48 hr fruit & tea fast to reset my digestive clock.

You can start this cycle with herb teas, mild juices like apple, soft fruits and applesauce for 2 days and then slowly integrate a protein meal.

I avoid most white flour in my diet...my pouch prefers whole grains.

If you want to try it let me know, PM me or go online to look at their site...in my case it put pay to my pouchitis for over 20yrs.

Sharon

sharon--thanks for your input.  first off some good news: that one time was an outlier and since i've not seen any blood.  nurse said she thinks the ulcer/nick near the hernia was irritated, probably due to intubating.  also, i don't have any of the other symptoms.  i've chilled out a bit.  intubating has been easier, since the hernia diagnosis and confirmation that the valve is in good shape, because i know what's happening inside.  would love a plexiglass peephole into the pouch/valve.

interesting that your suggested diet is what i eat, although not necessarily in your order.  i rarely eat carbs and like veggies for breakfast.

thanks, janet

Janet - so good to hear the bleed has subsided and it's not too serious. Pouchitis, with any pouch is not good.  Blood was my largest symptom so I would be a bit panicky too.  My GI also mentioned the pouch can be very friable after a small nick.  Sounds like you take very good care of your plumbing! Keep taking care-Kara

Just another thought regarding bleeding.

No nothing to worry you. Now they are removing sugar from drinks the horrible substitutes for sugar, I have found can cause bleeding.  As I usually know to avoid these drinks it is unusual for me to drink them. But I found this only happened following these drinks. No more problems so far, as I stick to mineral water.

Just a side note...There is bleeding and bleeding...3 or 4 kinds to note.

1. Outside or bright red bleeding comes from the stoma or the 1st centimeter or 2 of stoma...it is bring red, usually only on the sides of the tube or the paper and is caused by granulation (those white bumps that grow on the outside and edges of the stoma) or some irritation around there or in the valve itself.

2. When the blood sort of gets into the tube, coats it from the inside and outside or is very slightly mixed with the output it is usually from the base or the bottom of the valve, a 'hook' by the cath, an irritation (you may have a spot that your cath continually hits or rubs the wrong way, an ulcer or nick...

3. Blood in the output, streaks of it or very mixed but not dark, looks sort of fresh...That is pouch blood...something is going on inside of your pouch that makes it bleed...Could be pouchitis, an irritation, ulcer, nic or cut...that is when, if it goes on for more than 48hrs I call my doctor. 

4. Dark almost black blood...that is coming from someplace higher up in the digestive tract...unless you are post op...in which case it could be normal (after an anastomosis, some work done on the pouch or gut)...it usually tells me something is wrong in my stomach like an ulcer, a serious bug or something else that needs immediate investigating. Call your doctor if it happens more than twice or over a period longer than 48hrs.

Blood tells us a story. It tells us that something is hurt or broken inside of us and it needs our attention...not panic...(beware of the famous beets! or red licorice...that is why I say 24-48hrs just in case it was something that you ate)...there is also a question of quantity...a couple of drops on the paper every so often is not a disaster (although it may scare you)it could just mean irritation...but a large quantity, covering the paper, filling the bowl or worse means that there is a problem that needs attention and it is pointless to wait...

I do hope that it never happens to you and yes, certain foods or food groups can and do irritate some of our pouches...so chart things if they repeat regularly and find the guilty party.

Sharon

Yes Sharon I agree.

I have had bleeding simply from the catheter. Seems not to happen now

but I am having less problems these days with the valve catching.

One thing that has improved.