So I was all set to start blogging again. Ready to share with people I don't even know how and why I decided to end my relationship with my 'J' pouch and commit to a permanent ileostomy.... and I couldn't find the words. How do you put all of those details into something short enough people would read? All of those failures? Dreams that just never came true... such a downer! Well to get to the GOOD part of the story I must tell you how bad it got. Remember I have 4 kids and a very busy life. When I had to have surgery to remove my diseased colon I thought that all of the things that went with ulcerative colitis would be gone with the colon. Well, that was the goal but things didn't work out like that for me. Chronic pouchitis, cuffitis, pouch twisting, untwisting. Drugs, eminas, procedures... all of this consumed my life. The final straw to making my decision to remove my 'J' was that after I had my twisted pouch un-twisted I became incontinent with my stool. The urgency during the day lead to many accidents during things like carpool, field trips, boating trips, vacations with the family and friends, car rides.... you get the picture. I just stopped doing things. Stopped everything. I was now a bystander to my children's lives. I couldn't even pack lunches without making everyone late for school. I was living in the bathroom. Well, it just got better, night incontinence and adult diapers. Really?!?! At 34! As a last ditch effort my GI and GYN thought I should try Pelvic Floor Rehab, sounds fun doesn't it!
( I feel this post is a huge list...it is, but I have to get through it to get you to now :) ) I had the best therapist I could have asked for through U of M PT department. After 8 weeks (a whole summer!) and many, MANY dehumanizing 'tests' she said the phrase that changed everything. "I can think of many other things WORSE then having an ileostomy... like watching your family having fun without you! You sitting on the sideline while the family make memories without you in them and just remembering you home, alone! Crapping you pants and wearing a diaper to your daughters field trip, waking up in the middle of the night in a puddle of your own poo!" You know what, she was SO right. I was missing out on LIFE! And for what!? A dream of going to the toilet like 'normal' people!? I no longer had 'normal' plumbing no matter how I try to configure it. So there it was, the TRUTH! I had fought for 2 long years to make my j-pouch work..... one last confirmation from my GI and I would know what I needed to do. A final biopsy, of my pouch and ulcer that never would heal on my anus. Guess what that ulcer was! Ulcerative Colitis in my anus!!! YUP! UC in my ulcerated anus! The poor thing! That was it, the disease was never gone! No choice, my 'J' had to go!!! I felt relieved and terrified at the same time. How would my family (husband) feel about a permanent ileosotmy? Yikes, his biggest childhood fear on his wife!!
After I decided that I would be removing my diseased anus and j-pouch everyone else felt relieved. They were all tired of me being sick all the time and in the bathroom. All of my worries were just that, my worries! The surgery went well, recovery easier then the others and my life has finally returned!
So, how did I do it? Surgery and recovery with 4 kids, 3 of which are in school with NO buses? Family and friends!!! My mom moved back in with me for the month of January. My friend came over every day and took care of me and my youngest for the month and my other family members took turns helping make dinners, cleaning, and driving the kids around. We just made it work. It took an army of helpers, the more people we got to help the better it was, this way no one felt over taxed. Because I wasn't 'sick, sick' going into this surgery I had everything ready. My new wardrobe, pre-made easy food, nicely stocked kitchen for the kids to get easy snacks. I had laundry caught up (a total miracle). I just felt like I was doing this on MY terms. I was ready to feel better, to get back to not just life but to participate in the living! I was ready!!!
On January 4, 2011, 2 years almost to the day of connecting my 'j' I had my pouch removed at U of M Hospital. The pain was controlled by an epidural (first time having one without having a baby) and a pain pump. I was in the hospital for 6 days and it took me about 2 weeks before I felt like getting up and cleaning the kitchen! One month and my mom moved back to her home.... I was back! Sore but back!!!
There were moments I felt really sad about not having removing it sooner, but NEVER about cutting that asshole out! (literally ;) )
Sorry for the long detailed post but there was no other way to catch you up to right now. I am the mom of this house again. We have traveled a lot since parting ways with 'j', I am making up for lost time. Sometimes I am a little too busy, but I love it!
I LOVE IT!!!
~I can't wait to tell you about my cow, bee's , garden, chickens and the adventures our family has blessed to go on. But I will save that one for my next post and I promise it wont be that long~ Sarah