Summer with an Ostomy

In the winter I love wearing sweaters and jeans, dresses and tights with boots, long scarfs. I love my big puffy coat and warm cozy mittens. I am camouflaged. I know that no one knows what I am hiding under my layers of clothes. If I choose to eat something that gives me extra gas or wait longer then I should to empty my pouch its not a huge deal, I unbutton my button and find the bathroom. I feel secure, safe, hidden and 'normal'. I know my stoma is my secret; until summer.

I have always been a person who loves the water. Anything and everything about the water I love. The sound, the feel, the smell. I can sit and watch water for hours and feel my tension wash away with each passing ripple or wave. We boat, fish, swim and spend long weekends at the beach all summer long.  The sun washes over me with its warmth and I feel like a warm blanket wrapped around my shoulders.  Then it happens, sooner then later that enjoyable warmth turns into heat and I get hot. That blanket needs to be pulled off and I need to cool down. Sweat starts to build on my brow and under my ileostomy pouch! I feel sticky. I feel itchy. I feel like ripping my pouch off of my belly and letting my suffocating skin breathe! In the summer less is more and having a cloth cover plastic pouch glued to my stomach radiating heat back into my body drives me crazy! So I do what comes natural to me, I jump in! The pool, lake, river, even a sprinkler feels like sweet relief from the blaze under my pouch. I am, for the moment content.

Eventually one does get cold and must exit the water and dry off. How long does it take for a one piece to dry? How about a one piece with a wet cloth covered plastic pouch hiding underneath. As I fumble to get comfortable and dry I start to watch what others are doing. Swimming, playing, eating, looking at me!? Do they see the pouch? Is my bathing suit twisted? I start messing with everything trying to get comfortable again and find I am not enjoying myself as I once did. Summers have turned into a time I am very conscience of my ostomy. It is the only time having my stoma bothers me. As I am typing this out and re-reading this I feel this is reading that I am unhappy with my decision to get my permanent ileostomy and that couldn't be further then the truth! I am happy that I am able to swim again and float down the river with my family. I love the fact that I no longer have panic attacks during long car trips and the absence of bathrooms because I can now wait without fear of a huge mess. I am no longer in pain, physical pain.  I now battle my self esteem, my self image.  Do people really see what I am hiding under my bathing suit?

I guess the real question is... should it really matter?!?

Waiting

So as I am sitting here in this cold waiting room, waiting, I am trying not to get more and more anxious and I am trying to figure out why I get so upset at routine appointments. It's my spleen.  It's the not knowing!  The possibilities of what it could be! The lesions fill the whole spleen. Why!? I don't want to do another biopsy.  The first one hurt worse then the lung biopsy. And you know what?  I simply just don't want to do it again!

Deep down I know what's going on. I have four beautiful children and they have been through an awful lot since Sawyer (now 4) was born. One side of this is I am afraid of having to put the family through yet one more medical issue of mine.  But then the other reason is that I am so absolutely terrified of dying and leaving my children motherless. Both are out of my control. This lack of control, controls my every thought. So here is the strange part, I am not afraid of being dead.... Its the 'thought' of not being around and my family suffering my loss. Every time I have a doctor appointment, it reminds me that I am not as 'normal' and 'healthy' as I pretend to be. That weakness, the lack of control over my future, the unanswered 'what if's'.... is sometimes too much.

So here it is, I have a great support of faithful friends. I pray, a lot.  I also have family and friends who talk me through my fears and pray with me. I was told by a very smart woman (you know who you are ;0) ) that I could just as easily fall off my deck, get hit by a car or slip in my bathtub and never open my eyes again. So why worry about what could be and miss what is now~! I am working on this.

 Since spring has sprung, I have lost a very close friend of mine to an unexpected car accident brought on by a seizure and sweet baby Truman (my neighbor) drowned in a bucket of water in his back yard. Baby Truman was saved and is finishing his recovery at his home after a 3 week stay in the hospital and lots of medical attention. He is eating, crawling, laughing and breathing on his own with only the help of a NG tube for liquids. My friend Jim never came home. When you see how fast life is over; or how quickly your life is changed forever... I realize how sick I really was and it scares me. Could I become that sick again? Is THIS the doctor apt they lay some big news on me?

Well, in this case this was NOT the doctor apt of bad news but of awesome news! After looking over my latest biopsy reports, blood work and CT scan, Dr. G says everything is looking so positively awesome! None of my results indicate any sign of those splenic lesions being anything more than granular tissue. NO CANCER, TB, hystoplasmosis, sarcoidosis..... nothing but granulomatous tissue. Then he goes on to say that UC and Crohns are both granulomatous type diseases and these lesions could be just that, granular tissue! VERY NICE indeed! Blood work drawn today to recheck my low vit D and other routine tests, CT scan scheduled for Aug to make sure the lesions are either a.) going away, gone or the same. Or b.) not appearing anywhere else.

Lesson of the day... Don't borrow tomorrows burden's, tomorrow will worry about itself. All we have is right now. Don't waste it! ~ Sarah

Anxiety and Doctor Appointments

I have an appointment tomorrow with my infectious disease doc. Routine blood work to keep tabs on the lesions in my spleen. (still after a spleen biopsy no one seems to know what they are... they are NOT cancer! yay, hystoplasmosis or tb but do question sarcoidosis). I hate going to the Dr's anymore. I want to just say forget about all of these check-up's, but then what if I do and it turns out to be 'something'. CT scan to come in Aug.... fun!

I wonder if anyone else feels this way about routine visits? How many other post UC'ers have lesions on their spleen? I hope its normal and not just me :)

Sarah

Its been a long time!

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