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Reply to "Having a tough time"

Kushami, 

I am so sorry...sympathy first...it sucks...but there are solutions.advice next.

...advice next.

First off, what do you or don't you eat? Can you stick to a high protein low carb diet? 

I lived with a miserable k pouch (for different reasons...difficulty intubating it or severe leakage due to hernias) for a very, very long time...effectively I ate a very low residue, high protein diet...it had the advantage of not upsetting my pouch, not overfilling it and still feeding me...giving me enough energy to go to work, reduce the pain and gas (no carbs meant very little gas for me)...it also meant that I did not need to empty my pouch in public which was a real problem for me at the time.

As for alternatives...Why can they not try a K pouch or a Bcir? They are internal pouches (they may even be able to reuse your original j pouch and just build a valve for it) that have an abdominal opening (a stoma) that has a 1way valve that doesn't allow anything to come out until you want it to...you intubate (put a catheter into it)...you would not need to wear a bag, have adhesives on your abdomen or deal with the other ileo issues that may come along with one...find out if you are a candidate...And yes, it is a major surgery...must be done as open surgery and requires a long healing time.

As for the social isolation...I understand...I had a few very bad years...my solution was to constantly invite people in...I became a great cook...Which allowed me to be around food, serve food and enjoy my friends and family without actually having to eat very much...and not get criticized...they were always too busy enjoying it to notice that I wasn't eating...(hubby did but kept quite...Still does)...I had become terrified of going out due to severe leakage but did not want to suffer the social isolation...

There are always solutions...(once the PTSD eases up...it takes time and help)...but cutting yourself off socially is a descending spiral...the more alone you get the more lonely you feel and the less you want to see people...I am now back to working nearly 4 days/week...I take public transportation to and from (hubby has to drop me off and pick me up from the subway...its too far now) work and fast from 8pm the night before until nearly 5 pm the next day...I cannot eat when I work other than very small quantities of high proteins (cube of chicken or cheese and a few cherry tomatoes)...it is the price that I pay to be able to work...it is very hard some days but I have become accustomed to it...and the pride I feel about working and not being housebound is worth it...

Not saying that you can or should just that there are alternatives possible...

Don't give up...life does not end when your j pouch gives in...it just takes a little more ingenuity to outsmart the darned pouch.

Sharon

 

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