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Reply to "Surgery in February"

Hi Reenie, 

I am one of the ancestors here on the site, I got my k pouch in 1979 at the age of 18. It has been a hell of a ride all of these years. From being practically housebound pre-pouch to total freedom post-pouch.

I have had a number of revisions over the years for various problems but mostly due to another disease (Ehler's-Danlos...genetic collagen deficiency that means that my connective tissue does not heal well = no glue in my body)...it took its toll on my pouch and valve buy I still would not change it for all of the tea in China.

Things have progressed somewhat since the original but the idea is still the same...open surgery, pouch creation, valve out to the stoma and an indwelling cath hooked up to a bag for aprox. 4 weeks which gets clamped starting at 1 out of 4 hrs and works it way up to 4/4hrs and only intubating when needed. 

Some of the myths and realities are:

Yes, you can lift weights post-pouch if you were doing it pre-pouch...Do not suddenly start a strenuous sport 6months -1yr post op...it takes a full year for your body to heal on the inside even if you don't think so. 

Intubation is not painful and never should be. If it is then there is a problem (need more lube)

Always use lube...and then use more lube. You might not realize it but if you don't you are creating micro-tears in your valve that could cause problems later on.

Air freshener may be your friend for the 1st while. Keep some with you at the hospital or a favorite essential oil or perfume. 

An immersion blender may become your best friend. No matter what you cook for others, you can always blend it into a purée or soup (veggies, salads, fruits).

Chew. Chew...Chew more. Then chew again.

Avoid chunky, fibrous foods for the 1st while (pineapple, peas, corn, mushrooms, beans, leeks, asparagus...) once you get the hang of it you can become more adventurous...until then, take it slow.

I am an adventurous eater and have tried much but have learned that 'Whites' are not my pouch's best friend, they turn to wall paper paste in the pouch and cause unnecessary stress....white flour, sugar and fat can be replaced by wholegrain breads and pastas, real butter (full of vitamin A) etc. 

I no longer 'jump'...I walk; climb or swim but do not jog, run or bounce (my pouch has slipped off of the wall a couple of times...)

The most important thing is to not get frustrated, angry or upset. It is a learning curve and you will be learning all of your life. I still am after 40yrs.

I take extra vitamins and minerals to keep up my strength, Organic Silicium to build up my connective tissue for better healing, collagen to keep my abdominal wall reinforced.

I do yoga, pilates, walk miles when I can, swim for hours and am very active. 

Things that I love to take to the hospital?  Eat plugs (yup!), fuzzy socks and flip flops to take a shower in (nasty fungus in some of them), favorite pillow, music and movies, big tshirts with wide sleeves for the i.v. to pass through, body oil to get the tape off my arms, (prewax your arms and bikini pre-op ), slippers that do not slip, lozenges or choloseptic throat spray for post op (my throat always burns which leads to coughing...ouch!!! 

Gummy bears to suck on and a best friend who will do emergency runs for whatever I need (yes, she is priceless!)

There are about 1000 other things but the others here have covered most of it all.

Other hints...if you live alone...put all food and food supplies where you do not need to bend or stretch to reach them, buy supplies of soups and juices (prune or grape will be your best friend for a while), make sure that you do not need to go down on your hands and knees for anything, stock up on kleenex, toilet paper and paper towels (they work well in a pinch to cover your stoma post-op or 1/2 minipads to stick on the inside of your clothing to protect from mild muscous leakage), put your drugstore on speeddial.

I have traveled 1000's of miles pre and post op (Paris to Toronto) and if you need travel tips just ask.

Good luck.

Sharon

 

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