Nearly 11 years now on the bag

2007 was my year of hell with UC.    Can still recall the day,  February 5th when I first got diarrhea.   Although I didn't know it then,   I started symptoms in 2000, and went on and off for several years,   it would go away in a few days and not come back for some time.    Then in 2007 I decided to go to the doctor for an antibiotic to take care of the matter.     My my internist said he needed to refer me to a gastroenterologist as there was some unusual symptoms.       Then i began the long sliding route, getting several colonoscopies, and a battery of prescriptions.   

This was 2007, and there wasn't nearly as many drugs as there are today for UC,  which I was diagnosed as having.    I spent close to seven months basically not getting over it, and at times, I felt that the medication I was given was causing it.    And yes, I had the dreaded "CDIFF" as well..   Steroids was also a part of the treatment...   and several times during the year I was in the hospital for dehydration.      UC is the disease from hell..   I'd rather have cancer..       All this while trying to hold down a job, and thank GOD I had Blue Cross and Blue Shield.    but even then you get a blizzard of mail saying you owe this, and you owe that, and trying to deal with all that.     

By October 2007, I was at my wits end with this sh-t and I was refered to a surgeon.  "I can cure this disease"...    I can cut out your colon,  engineer a J-Pouch and in six months you can get it hooked up..  Until then,   you have to wear a bag.        After nearly a year of going through hell,   I decided to go though the operation.     Although I did spend a significant amount of time in the hospital and later in a rehab facility due to getting a Staph infection in the hospital..   I was out of the hospital, about 120 pounds lighter than I was a year before,    

In the hospital,   I wasn't given much instruction on using the bag..  And it seems where it's placed is in a bad place due to body folds..    Getting the thing to seal properly and last more than a day was the first challenge...      Also, I didn't realize how often I'd have to change it when the seal would break..     At first,  I got about a day, maybe two before it started to leak.     I was counting the calendar days till I could get the J-Pouch reversal..        All this time I'm trying one thing or another and I'm getting better at getting this bag not to leak..   going now for 3.. sometimes 4..  sometimes five days, and I'm regaining my life back.    Iw as a slow process..    as you tend to live your life around this bag on you ..        I'm also expanding my diet also,   trying one food out,  than other,   seeing how things come out.       You learn a lot about diet, as what goes in comes out, and you don't want things to come out like a river of water, or a river of mud..     It's a trial and error thing, and it varies as sometimes your body processes the food differently..        There is no "right" or "wrong" thng,   it's how you are and it's your body and Im sure everyone is different.

So now It's six months and I go back to my surgeon to be examined for the J-Pouch reversal.      Basically, though I've been reading about UC, and J-Pouches, and all this, and I'm learning that it's another "period of adjustment"..  I love that phrase..   its a euphemism for period of hell but put in a nicer way.    Also,  the J-Pouch it seems is basically a bag inside you that you have to empty as much as I do the exterior stick-on bag.     All I'm doing is basically trading in one set of issues for another..   and go through all the issues I went though since I was released six months ago.. 

OK, now that was early 2008,  a decade ago...    I chose not to get the reversal done as I really didn't want to go though all of it again.   What was there to gain besides another trip to the hospital and dealing with the J-Pouch.. 

So now it's been a decade,  it's 2018..   I've lived with the bag now this long.     I have a life again, and I've learned many, many tricks in how to keep this thing on me and not leak.     There are other supplies of things besides Hollister as well..     Ones that aren't as expensive and work fine.      

I'm alive..   Sometimes I miss how I was before,  you never really can go back to what it was before being diagnosed with UC.    You learn these lifestyle adjustments..   You learn about dieting and what you can eat, what you can't..   also what you can do, and what you can't..      

So for those of you who have just started this journey..   It's not hopeless.    I've known some people along the way during this past decade that have chosen to get off the road of life...    It's not necessary..    If I've survived a decade,  I can survive another.    than another..   ..   

Just some thoughts..     Take care..  

0 likes, 2 replies