The Other Side of the Bed Rail~

Last week was a crazy week.

My Aunt had to have surgery to put stints into her bronchiole's to keep her airway open. Relapsing Ploychondritis is destroying the cartilage in her body. Her trachea is collapsing.  That was a really long day. Waiting, waiting  and then more waiting. When the surgery was finally done and we were able to see her in recovery I was shocked at what I saw. My beautiful Aunt looked like she had been in a bar fight.  Two black eyes and a busted lip on top of the black bruise that was quickly appearing on her arm from the I.V. and bp cuff.  It took a collaboration of my cousins (her 2 kids), her best friend and my other Aunt to get her settled into her room and to get her prescriptions figured out. When I got home at midnight I was drained but wide awake. I had to process what happened today to my loved one, my family.

See, when I was diagnosed she is the one that I could be straight with. Before her Lupus got the better of her she was an ER Trauma Nurse. I could be real with her and she got it. She is the one who would tell me like it was, the good and the bad. She is the one that would answer all of my 'stupid' questions. For me to be able to be her strength was an honor but also a very real visual of how hard it is on the caregiver. The go to person. The ones that never leave our sides. To sit on the other side of the bed rail is a hard seat to sit.

  I am so thankful that as of right now she is doing very well and was so excited to tell me that for the first time in years she is taking deep refreshing breathes and to make it even better, without her oxygen!

The day before my Aunts surgery my Grandma was having her emergency colostomy reversed and the huge hernia that had formed around her stoma repaired. The 4 hour surgery turned into 7 hours and 2 units of blood. When I walked into the ICU to visit with her I was shocked to see that she was intibated and in a lot of pain. I felt the pain of her disappointment and I could see in her eyes all the things she could not speak. Stop the pain! Then from across the room I saw Grandpa. Sitting, watching, waiting, hoping.

It takes unbelievable courage and determination to go through IBD, surgeries, recoveries and all the procedures. But it takes unbelievable patience, strength and love to sit and watch. To only be able to hold the hand of the ones we love is a hot seat that I have found more uncomfortable then laying in that hospital bed.

So after a week of wearing the shoe of caretaker I have had the time to think about how it must have felt for my husband to watch UC in all of its glory steal his wife away bit by bit. How horrible he must have felt, how helpless. I sapped every ounce of strength from him to get me through, but he never left my side.
  

We finally found a camping cot that fit into small hospital rooms. No more sleeping on the floor!

 

I am thankful beyond words for all the support that I received from my husband and my family and friends. Where would I be without them....

 

I am happy I don't ever have to find out!

* my Aunt and Grandma are both expected to make full recoveries :)

I'm All In!

I had a total different post planned for today, but I felt like I needed to share what I am feeling right now.....

The last few weeks have been full of 'never before's' and first times~ GREAT first times. When I think back into what the last month has taught me, what I learned about myself, about others~ I'm really excited and encouraged.

First of all I was a camp counselor for Jr. high school kids for 3 days~ my oldest 2 boys are in 6th and 7th grade and I not only wanted to be the cool mom, the fun mom, the NOT SICK mom, I wanted my boys to be proud of me. To see me in a totally different light then what they have experienced. Up until me getting sick I was the mother of young children and parenting young children is different. You have to be an example and teach them safety, responsibility, respect.... you know, be a grown-up. Well then I got sick and was to weak to 'play'. We snuggle and go on hikes, boat trips.... not much for adventure. As my boys are getting older they are starting to spread their wings and I wanted to spread my new, stronger wings too.

 Yes, that is me holding the huge hairy tarantula and my boys were very impressed!

 The more I challenged myself to try things I thought I could not do and the more I succeeded in the things that really scared me, the more I found the Sarah that I once was and thought that I had lost... or better yet~ the old Sarah who was always so full of fear and doubt was disappearing and a better Sarah was being born. Strong and excited to try new things. I have seen the dark days and made my way through them... its now time to celebrate the life I have WITH my kids!

                                    

I think on that trip to camp with a bunch of 13 and 14 year old kids I started to rebuild or to put it better, reinvent who I am. Who I am choosing to be.... would I have ever had the courage to face my fears if I had never been challenged by UC and the struggles of endless surgeries, diagnosis' and recoveries....

Another area I have struggled in since my butt has been an open book is seeing myself as a beautiful, sexy woman. You know your family is always going to say you look great and that they can't smell anything around you. But in the back of my head I always wondered .... and doubted. They would never hurt me especially since I can't help it or change it.  So this past week my absolute favorite band was in town for 2 shows. MUST GO TO BOTH!!! One show my sister-in-law and I gifted each other VIP meet and greet passes to see Matisyahu~ oh yes we did! AND it was awesome. I have never seen a show at the Blind Pig in Ann Arbor and we were not disappointed! The show was phenomenal and meeting Matis and some of his crew was the icing on the cake!

I'm on your right :)

I just LOVE~

It has been a week of concert mania with Matisyahu! LOVE his music, love his message. But it was the show at the Loft in Lansing Saturday night that I will never forget! I have seen Matis just about every time he has come to MI but Saturday, at the Loft, I had front row, went on stage with him for the last song, made friends with some great people, Kevin the best merch guy ever and Frank (or is it Bob) who got us back with Matis again for the second time.... hung out, and NO ONE KNEW I have an ileostomy!

 I wore regular non-mom jeans, a black tank top and even though I did find myself fidgeting with my shirt a few times I felt like I blended in just fine and that it was in fact true, NO ONE can tell I have a pouch! I felt young and beautiful! I had fun, I danced, I smiled until my face hurt and even though I wondered over the past few years if I am now just 'damaged goods' with my ostomy and the fact that I have had 4 kids, I feel beautiful and whole.

I know that life if just waiting for me to jump in with both feet and feel so obliged to do so~

Through The Eyes of My Son~

        To start off, this topic gives me a lot of anxiety.
        It happened five years ago, my brother was born. He started a new light into my world but were there is light a shadow casts. It was weeks later that I discovered that my mom had ulcerative colitis. After that many events went fast, my mom was at the hospital, my grandma moved in and the fact was my mom was very sick.
        Newborn brother Sawyer, Chase, Sophie and me started to adjust to the new environment or whatever you want to call it. My mom spent a lot of hours in the bathroom and me and Chase were the only ones who really understood the change that we saw in mom. Our family had to rely on grandma instead of our mom and that was hard for all of us. We started to bond together even more than before. Yes it did suck going back and forth to hospitals but it was all worth it to see my mom.
        So the questions still remain like why did my mom get sick, will I get it and have to wear a bag, would our family ever have a “happy ending.” Only now that mom is better can I say yes indeed we are happy again. I became more independent and once again my mom is home!!!!! My mom still has hospital visits, that gets the house filled with anxiety but I know it is OK. I am not alone. My dad is here and my brothers and sister. I have lots of grandmas and grandpas that love us to.

2010 sick

      You are not alone, all you kids who have your parents away due to their disease, always remember that there is a family that loves you and will care for you through your struggles. Look my mom’s sickness lasted 5 years and I’m still here. The best thing to remember is you’re not alone.
- Colin      

When I first read what Colin, 13, had put together I was speechless. Not only did I noticed how great of a writer he is turning into, I also noticed how old he had become. I know, I have been told a million times 'sneeze and they will be grown', but I am only seeing now that it really is true!
Colin is the classic first born. He bears so much responsibility on his shoulders often times we need to remind him that he is still a kid. As we read through his blog post together we reminded each other of different aspects of the past 5 years. It was hard to pick out what he wanted to say. I guess he was a little speechless too... that is at first.

He told me how 'those were the worst days and nights of his life', and that he worried I would never be better... of coarse that broke my heart. I could see my little boy laying in his bed crying. What could I have done differently? My mom moved into our home, my mother-in-law took shifts to let my mom work the night shift. My other mom (step-mom, but I call her mom too so just to clarify) would bring meals to help lighten the load of 3 busy kids and a newborn.... I thought I had it all covered. But how do you cover ones broken, worried heart?

I am sure of it. As sure as everything I know. I am sure that time, love, consistency and communication helped heal those broken hearts. Time, because as I got stronger we all noticed the kids became more confident in the 'system' of medicine. How I would go in for an appointment or have a surgery or test and soon I would be a little better.
They were showered in love from our family, church and friends.
Consistency in caregivers and routines. We tried our best to have the same people watching the kids and made sure that the kids were never separated. 4 kids are a really big deal for some people to handle so this was a challenge at times especially being the ages of the kids. Colin was 8.5, Chase 7, Sophie 4 and Sawyer was an infant. It worked out that my mom could work a really late shift making her home during the day for the little ones. My husband would leave for work a little later as to help pack lunches and get breakfast rolling. My mother-in-law would come to the house after she picked the older kids up from school arriving just in time for my mom to leave for work. Mom-in-law would then stay until the kids were in bed helping hubby with all the craziness of the end of the day stuff. Dinners came and were eaten, and that went on for over a year. * In this situation the divorce of both of my and my husbands parents worked to our advantage! :) More grandparent love! *

How many times have you heard that communication is so important in a relationship?! The trials of the past 5 years has really opened the door for open communication for all of us! Have a question, ask it. At first it was really hard for me to talk openly to my kids about my butt problems. It was gross and I hated it so why would they feel any different? Then there is always the thought of too much info for little minds. It is a balance in just answering questions to giving them more questions. This is where we are still working, but I see it overflowing into all areas of our lives not just my health.

Wow, has this little idea of my son guest blogging turned into a lot of questions that I have unanswered. How has this affected my other children who were much younger and maybe not as understanding of illness. How has it affected Sawyer, he was only 2 weeks old when I was diagnosed.

I am not sure of it all but I do believe that God works out all things, even the bad things He can make good.

2011 me and Colin

Time will tell and I am so thankful that God has given me more of it to spend with my awesome children~

The Not-So-Teeny Bathing Suit

 So as the summer has been heating up I find that I am in the pool more and more every day. And as a 36 year old mom of 4 with an ileostomy, finding swimwear is one of the most important priorities of spring. I have always been a huge fan of the 2 piece, and when I had my j-pouch and was under weight I could pick whatever suit caught my eye. One day while I was swimming with my kids the comment was made to me that my lack of swimsuit was making them uncomfortable.... really!? I had the skinny and the suit, but I also had 4 kids watching me. I started looking for cool looking one pieces or tankini's.

I found a cute tankini from Lands End. Black with little white dots. It was my first transition to the not so skimpy and I noticed right away that I hate the feel of wet bathing suit hanging on my body. (picture the green tankini on this page but back with tiny white polka dots! super cute)


Its funny how something so small as a comment for your child can get you ready for the unexpected! My j-pouch ended up failing and I decided to have a very functional permanent ileostomy. Well now I am not so free spirited that I run around with my pouch all exposed especially when friends have come over for a BBQ and a swim! So I started to search more for a younger looking one-piece that would camouflage my pouch. (The roaching, I find is the total key to the discreteness of the ostomy!)The last thing I wanted was to look like an old lady in my 30's! I have plenty of time for that! ;)                                           


 So here are a few of the suits that I have found and love! I feel totally concealed as well as young. Now I am sure you are wondering how I have come to terms with the wet suit...I haven't! I have been on this road of j-pouch to ileosotmy back to j-pouch finally to permanent ileo since 2008 so I have built up a little 'selection' for myself! :) When one suit is wet I simply run inside and change into my next favorite suit and hang the wet one to dry. I think this also extends the life of my suits! They are not cheap by any means! And yes, this works the best when you are at home swimming. If I am at the lake or another friends place I will have one change of suit that is the same color and usually no one notices ;)  Sometimes I just have to deal with it!!

I hope this gives you some fun ideas to keep yourself feeling like yourself. It is hard to watch your body change so drastically, but I have found that if you are patient with yourself and use a little imagination you can redefine how you see yourself in that mirror!

Happy swimming~ Sarah

Up and Running~

So I went and set up The Colonless Chronicles on facebook and I couldn't have picked a less busier time to do it! During the last week of July me and the kids go to the Fowlerville 4-H Fair. I don't mean just go to the fair, I mean we spend weeks getting the cows and calves ready, pack up the camper and GO to fair! We stay in the camper all week while fair is going on. This is our second year with our 4-H group and although it is tons of fun and learning, it is also tons of hot sweaty work! We teach the kids that come to fair about the dairy cows and how we take care of them. We let the kids touch the cows and if we have any girls in milk we show them how to milk a cow. It is funny how many little kids (and adults) have never seen how to milk a cow by hand.

So rewind a few years back. Me laying in bed, weak and recovering. My mom taking my place in my home busy with 4 kids. Me laying in my bed, watching, listening, dreaming. I had this feeling that not only did I loss my health but I also lost my independence. I was not the one mothering, I was being mothered to. I watched as others took care of business.... but I had a lot of business going on in my head! I was planning! Planning on how I was going to become more independent, how I was going to do everything with my kids~together! My passion for gardening and sustainable living became my goal and I started plotting. I got chickens, then honey bee's (or was it bee's then chicken :) ) It became our family thing. My dad helped me get my hives set and my husband finished the coop. Everyone seemed to help with the garden and I grew stronger as I watched my dream coming true. Then one day I decided I wanted my own dairy cow.... I knew nothing about raising cows, milking or calving, but I wanted to learn and 4-H was the perfect in! I meet Farmer Andrea and well now I have my own little Rosie, a 6 month old Jersey.

As I sit here and think of the path my life has taken I am nothing but thankful. I am happy, healthy and full of hope. I am just as excited to share my experiences of living with my ileostomy and overcoming UC as I am to share what my life is like on my little hobby farm.  It is going to be a really busy week but I am so glad I have the strength to live it!

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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