Hi, I’m Marti. I am a happily married 30 year old with stubborn Ulcerative Colitis since 2005. There are no meds that work anymore except a high dose of prednisone which has made my face all puffy and I can hardly recognize myself in the mirror!
Because of this, I have a surgery scheduled for Feb. 6 to remove my colon. Trying to accept this… Luckily, I have a very loving and supportive husband who will be very important to my recovery. :)
Some more about me:
Having UC is terrible on your social and work life as you all know. I am a supervisor for a cleaning co. which means I drive a lot and when I’m not driving I am at a clients home (not the place you wanna do #2)…. So, I’m looking forward to not having to run to a bathroom at a gas station or worse, pooping my pants!!! I realize that having a bag will be life changing and I will have to schedule my work around my bag schedule but atleast I can schedule my poo! Can’t do that at this point in time :p
My struggle is that I love my job and will miss my work while away as well as worrying about my husband keeping up with the bills while I’m off work with no paycheck coming in…. but, I’m sure we’ll get by.
Since September have had BM’s anywhere from 10-20 times per day depending on what dose of prednisone I was on.
Stomach pain, colon spasms, weight loss, weight gain (from prednisone)
J-Pouch or Permanent Bag
Here is my big predicament! Before I went to see the surgeon, I did plenty of research on colon removal, j-pouch, Brooke ileostomy, internal reservoir and so on so i had tons of questions! I had decided before I saw the surgeon that I did not want to have a J pouch because it seemed as if having a J pouch is almost like having colitis! Going to the bathroom 6-8 times per day, pooping your pants at night, getting up at-least once per night to poo, having all that rectum pain, pouchitis (which to me seems like it would be like having ulcerative colitis), and then you have to learn to control your bowel movements. After telling my doc that I did not want the J pouch, he talked me into getting the first surgery and then if I never wanted the second, take down surgery, I wouldn’t have to get it. But ateast then I still have the option of getting the take down surgery or not.
I guess, my question to all of you is how is life with the J pouch BETTER than having your ileostomy bag? Is it better? From everything I’ve seen and all the stories I’ve read the ileostomy bag seems better than the J pouch. I’m just so completely nervous and am not looking forward to looking down and seeing my bowel sticking out of my tummy! But, I’m so confused about which surgery I want to get. At this point, I want to get full colon removal including removing my rectum and just sewing everything up but I don’t want to make a decision that I will regret but I also don’t want to poo mucus while I have a bag if I never decide to go get the take down surgery! Help!
written by Marti S
submitted in the colitis venting area