Today is Rudolph’s 2nd Stomaversary. On the 11th November 2013 my little stoma friend was created and it is an important day to reflect and to celebrate ( as strange as that might sound).
For a person with a stoma the day of its creation can be viewed two ways. One of despair at an enforced life changing event, or one of celebration of a life giving event. For me my stoma was definitely a life changing event but more importantly it has given me freedom from the pain and distress and even infections I constantly I had before Rudolph came into my life. It has been an incredibly positive experience for me.
I was blessed to be able to have time though to make the decision to have a stoma. While I really didn’t have any choice, my Colorectal Surgeon very gently led me through a process, where I could of my own free will say to him “I’m ready, let’s do this”. Not everyone gets that opportunity and while today I’m celebrating a positive health life choice, I also am thinking of those who are still struggling to come to terms with such a radical change to their lives. My heart goes out to them.
To mark Rudolphs 2nd Stomaversary, Peter and I have just celebrated over a casual Bayside lunch, looking out to the beautiful Moreton Bay Islands. As we sat there we not only celebrated the fact that Rudolph in many ways saved my life but also that we are so blessed, as a result of that life change, to also have had overflowing blessings of a home of our own, in a beautiful part of our state and country. We also reflected that the timing of my stomas creation was more perfect that we realised, as we had no idea on this day 2 years ago that one year later, my left femur would spontaneously break and another whole complex and convoluted health issue lay ahead of us. Thank goodness the bowel issues were at least sorted as best they could be before that next great event in our lives began and continues I might add.
So it’s a Happy Stomaversary Day for me and a day I will definitely always mark with some kind of celebration and reflection. We couldn’t resist a cake with a Rudolph nose either…just seemed meant 🙂
My left femur broke spontaneously on October 6th 2014. It just snapped in two, no warning, apart from pain at the site for a few weeks, it just happened!!
From a medical perspective it is a pathological break and we now know I have a rare genetic bone disease.
It’s The Strongest Bone In Your Body….It Can’t Just Break
The break of the strongest bone in your body though, is much more than a medical episode…it is life changing. It is forever etched in your memory and for me it is still an ongoing nightmare as it remains broken over 4 years later.
The medical term is non-union. The personal story is one of ongoing pain and disability. The bone disease is spreading and I now have a stress fracture in my right femur which has needed a rod placed in it as a preventative measure. It too was about to snap and neither me nor my Orthopaedic Surgeon wanted to relive that particular nightmare. I also have constant foot fractures and other bones throughout my body are showing signs of disease.
Every now and again I allow my mind to return to that day. To remember, to ponder about the circumstances surrounding that moment. It has its own story and it’s about time I wrote it!
It Was Anything But An Ordinary Day
A story like this should start something like…
It was an ordinary day…..
The day my femur broke was anything but ordinary. It was supposed to be a day of celebration and excitement and it certainly was heading in the right direction.
My Aunty and Cousin had been planning a trip to Australia from the UK for over 2 years. We had emailed so many times discussing the details, getting excited about being re-united after 30 years and it was going to be the trip of a lifetime.
My cousin was only a new-born when I had first met him on a trip to the UK when I was 18. My Aunty and I had been enjoying getting to know each other online and were so excited about actually spending time together.
Anticipation was high. Their arrival date was all booked, October 6th 2014.
We were to pick them up from the airport at 1.30am. It was going to be a struggle for me at that time of the day with my stoma and Rheumatoid Arthritis. I also had a very sore leg which had just been diagnosed as muscular pain, as an xray taken the week before was supposedly clear.
I was determined to get there to greet them. I was using a walking stick as I had, a few weeks prior, been diagnosed with a stress fracture in my left foot but I had no idea what was to eventuate in the coming hours.
We made it to the airport and the reunion was wonderful as we greeted each other in the arrival lounge of the Brisbane International terminal. We’d had the perfect trip in at that time of the night so we were able to quickly return home as well.
I had prepared a light supper so we sat around the table eating and talking. So much to talk about, so much to share. Conversation flowed easily. They were family and both my husband and I felt like we had always known them and always been a part of their lives.
Before we knew it the clock chimed 4am and we decided it was probably best if we all tried to get a few hours sleep.
It Was As If The Birds Could Sense Something Wasn’t Right
Oh, how nice to climb into bed. My leg was really hurting even as I lay there but it was muscular pain, so I was told, so I just hoped the pain killers would kick in and some sleep would help restore some energy.
We had been up for 20 hours! Way too long for someone with a chronic disease. I was so proud of myself for managing to hold it all together and for meeting them at the airport.
I closed my eyes to see if sleep would come but the birds outside were so loud. I can still hear them now as I think back. It was quite an unnerving sound and I couldn’t put my finger on why that would be. I hear them every morning and their song is usually beautiful. It was almost as if they could sense something wasn’t quite right.
9am…..I could hear some rustling downstairs and thought it might be my Aunty. We all expected my Cousin to sleep late! My husband and I went downstairs and joined my Aunty for breakfast on the back deck.
It was a beautiful morning and we chatted away about the week ahead and what they might like to do. The excitement continued to build, despite our tiredness.
About 10am my Cousin joined us much to our surprise. Poor guy looked so jet lagged!! Coffee needed, lots of it!
The Longest Monday Ever
My Aunty and I decided that we should get out of our PJ’s and get dressed for the day. No point trying to get anymore sleep at this stage. I remember my Aunty saying;
” This is going to be the longest Monday ever”.
If only we had known how true those words were going to be.
I walked upstairs and was just about to open my bedroom door when I felt a snap! My leg was like jelly and I don’t know how I knew but I knew my leg had broken. I can’t recall pain at that point. I remained standing on my right leg with my left leg off the floor. I called out, rather loudly and definitely, for my husband. My specific words were;
” My leg has broken”
My husband came running up the stairs in a flash. My Aunty shot out of her bedroom and was right behind him. He said later he knew by the tone of my voice that I was definitely in trouble.
Would you believe my Aunty was a registered nurse in the UK and had just retired. What a blessing to have her there, just at that moment, for such a time as this! She talked my husband through what to do. They somehow managed to lay me on my side on the bedroom floor, placed a pillow between my legs and under my head.
You know I can’t remember feeling any pain at that point. The shock must have just taken over. I didn’t feel sick, I didn’t faint…I just organised!! That is so me.
I was crying but not for me, I was crying because I felt like I was ruining my Aunty and Cousins holiday. I just kept saying;
“I am so sorry, I am so sorry!”
Everyone was telling me, it’s alright, it’s not your fault but I felt so bad for them.
I could hear my husband downstairs arguing with the ambulance 000 operator. He was trying to get them to understand I had actually broken my leg and no there hadn’t been a trauma to cause it, it had just happened.
We now know it is such a rare occurrence, the operator hadn’t heard of it happening. Even the first set of paramedics who attended me couldn’t believe it was possible. They thought it might be a ruptured tendon. I was seriously hoping it was only a ruptured tendon at that stage!!
I remember the paramedics trying to work out how to get me past a piece of furniture on our landing. They were discussing dragging me past it. Aargh. I quickly yelled out to my husband and cousin, to please move the cabinet! There was no way anyone was going to try to drag me passed anything with a broken leg.
I can’t believe I was still able to organise… up until that point anyway. Soon after the pain killers started knocking me out.
A Blood Curdling Scream
They eventually got me downstairs and outside using a chair stretcher ( I can’t remember that bit). As they tried to move me, onto the ambulance stretcher, they saw the bone slide outwards….there was no doubt my femur had snapped in two.
I let out a blood curdling scream…this was pain and I remember it like it was yesterday! The first set of paramedics panicked and called a trauma ambulance. We had 2 ambulances in our driveway at this stage, all providing a wonderful show for our neighbours, now lining the street wondering who had been murdered!!
My Stoma Eruption
I must just fill in one part of the story. While my husband was sorting out getting an ambulance, my stoma decided to erupt. Probably the shock setting in but all I could think of was I needed to have a clean stoma bag before the ambulance arrived.
Here’s where my beautiful Aunty stepped in with her nursing hat on and she jumped into action. I was able to tell her where all my supplies were and she gathered everything we needed. Together, with me lying on the bedroom floor, we changed my stoma appliance.
What an amazing Aunty! What a bond we had made. A bond so special, it would become even stronger over the years to come, because of this extraordinary day.
How thankful and sure I was God had provided for me, in this extreme time of need, with someone by my side who knew exactly what to do!
Back To The Main Event
So, once the paramedics decided that I could be stabilised, with my legs bound together, we finally set off for hospital in the ambulance. My Aunty got to ride in the front seat and the ambulance driver gave her a sight-seeing tour along the way. Not quite what we had planned but it was certainly an adventure which she shared with family and friends in postcards over the coming days.
The rest of the day was spent in ER and the x-ray department. I remember being in a world of pain as I was moved in directions that my leg just couldn’t cope with to get the right x-ray image.
The young radiologist couldn’t find anything to begin with. She was so lovely and being so careful with my leg. She was focusing the images on the femoral neck as this was the usual place for a non trauma femur fracture.
I could tell she was getting concerned as xray after xray wasn’t showing anything. She eventually asked me where the pain was most intense. With so many pain killers on board my memory of the intense pain was waning already. I remember explaining it was the middle of my thigh and my knee was hurting.
That was the key!
She positioned me for the next x-ray image and ran to take the shot.
Within seconds she returned to my bedside and I’ll always remember her words;
“You are definitely in the right place. We will look after you. I’m so glad you told me about the knee pain”
I was so relieved. I quickly asked had she found the break? She replied with a mixed look of relief, horror and sadness, she had indeed found it.
Finally I got to my ward room at 7.30pm.
The worst was yet to come!
Five nurses were organised to move me from the ER bed to my room bed. Oh the pain! They shut the door of my room and gave me a pillow to put over my face to try to dull down the sound of my scream. It was not a scream you could control. It was so awful.
They finally managed to get my leg in traction, where I stayed for 24 hours before surgery the following evening. While it was horrific getting it into traction, the relief was fantastic once my leg was in it.
The nurses felt so sick. They had seen the bone move sideways and push against my skin as they were moving me. They were so lovely, so concerned.
The first thing I asked for was a cup of tea…….what else!! I’m an Aussie but I was born in the UK and we all know tea fixes everything!
Tea Makes Everything Better
It was the best cuppa ever. I was finally alone in my room. I had time to reflect. What a day. So many disappointments but so many blessings.
We don’t know how we would have coped that day had my Aunty not been with us. Such a long way to come to be there to help her niece in her hour of need, but we all felt that sense of us being in the right place at the right time.
I was so grateful my leg broke at home and not at the airport. So grateful for my loving husband. So grateful for the hospital staff, who knew me well from previous stays and made me feel like I was in good hands.
I didn’t know what the future would hold but I felt a sense of peace that God had looked after me that day and He would take care of me in the coming days, weeks, months, years as well.
I was so aware my life was changing. So aware I had an unknown journey ahead of me but at that moment, alone in my room, I closed my eyes.
I was so relieved the 6th October 2014, the day my femur broke, was about to end.
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
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A dear friend of mine has a stoma called Rosie. Rosie has been giving her a hard time of late and she has been in and out of hospital as a result. Life has been tough but she is an amazing lady who keeps bouncing back and brings much joy to others ( more than she perhaps realises!)
I was talking to this lovely friend this week on the phone and she told me a beautiful story that had happened that afternoon which I just can’t get out of my head and I need to share. She was in a clothing area of a department store and was looking at a top which was perfect for covering up Rosie on bad days. At the same time a lady in her 70’s, who was obviously feeling quite frail and had her daughter with her for support, was looking at the same top as my friend. She said to her daughter ” This top would be perfect for covering Dickens”
My friends thought was what on earth would Dickens be, other than a stoma!!Spontaneously my friend turned to the lady and said ” I need that top in that size to cover Rosie!”. They looked at each other and there was a silent understanding immediately that both were talking about their stomas. The lady was recovering from bowel cancer and had only had “Dickens” for 3 months and was finding the adjustment difficult. My friend was able to give the encouragement needed at just that moment and she in turn was encouraged by being able to help someone else in a similar predicament.
Right there in the middle of a shop, two complete strangers meeting over one top, both feeling fragile and burdened by the uncertainty of their health and in particular the management of their stomas! How special, how amazing, how beautiful! A blessed meeting…I just love it when things like that happen.
I’m being discharged this morning with more questions than answers. That is not the fault of my medical team though, just the fault of my body. We know I have developed colitis, inflammation of the bowel, but we don’t know if it is autoimmune ulcerative colitis or if it is being caused by a virus. My stoma is ulcerated & the abdominal pain & swelling is not fun but at this stage I can ride it out in the comfort of my own home with strict instructions to call my Specialists if anything gets worse. My stoma nurse visited me before I headed home. She is so lovely. She just said I’m like a doll that keeps getting pushed over but refuses to lie down & bounces back up with every hit. I’m certainly going to fight on but I am hoping & praying that the hits stop coming.
The weekend was not much fun as my stoma decided to seek attention. A phone call to my Colorectal Surgeon this morning has landed me admitted to hospital for review & treatment…..more hospital frequent flyer points to collect, except they don’t have any.!! Now there’s a business opportunity waiting for someone.
On a more serious note I could obviously do without being here. Once the drip goes in my arm, using my crutches gets a little difficult & I’ll be counting the days until I can go home. This little hiccup ( hoping that’s all it is) is disappointing ,as I’ve managed to avoid hospital since last year when my leg broke. I can feel this idiopathic auto immune disease running rampant in my body at the moment, so some medical treatment is much appreciated, along with prayers from family & friends.
I have been asked this question many times. Friends and acquaintances are always so relieved when they see me in person as I look so normal. I don’t look sick and some of that is due to my coping mechanisms! It has also been well documented about the fact that autoimmune diseases, in general, don’t cause a person to look sick. In fact Rheumatoid Arthritis joint damage can take years to show. For most of us living with RA today, thanks to the medication we are on, it is quite likely we will never show major joint damage evidence. It is a silent disease to the onlooker. To the sufferer it is a world of pain with multiple burning inflamed joints that make simple tasks difficult, accompanied by fatigue which often leads to depression.
So how do I cope when I have Rheumatoid Arthritis, a stoma, a pathological broken femur as a result of an idiopathic bone disease that makes future bone breaks a real possibility? Aside from acceptance of my circumstances, there is a mix of practical and spiritual coping mechanisms that I have: Continue reading →
Having a stoma requires a change of life and a change of mindset. Accepting that you now have to manage a normal bodily function a little differently is half the battle. For many people that can be an extremely difficult leap as they may have received their stoma in an emergency situation due to severe diverticulitis or a bowel perforation, or as part of a surgical procedure to remove a cancerous section of their bowel. In that case being given the news that you have cancer alone is difficult but add in a stoma a few weeks later and it’s a tough road for the strongest of people. In the case of emergency surgery, to wake up with a stoma, not even having any idea that was going to happen, can be a devastating situation for the new ostomate and their family.
I feel blessed that I knew 2 years before my stoma was created that I would probably need one. That gave my husband and I so much time to research exactly what having a stoma meant, plus the situation with my bowel prolapses and the failure of 2 surgeries to try and mend it all, led me to a place where I was more than happy to head into my colostomy surgery.
Friends and family support is incredibly important but finding others who are of a similar age and adapting to a new life with a stoma is paramount to moving forward. That’s where online support groups in particular are the key. Stomas are created for babies, young people, middle aged and the elderly and each generation has a different set of needs and challenges in adapting to this new way of life. The extra icing on the cake that can come from online support, is when true friendships are made through these groups. I now have an Ostomate friend who, believe it or not, had the same Surgeon as me and had her surgery 2 weeks prior to me at the same hospital and we met through a national online blog support group. We would have passed each other in the hospital corridors and had no idea only a few months later we would become such great friends. We no longer blog, we email, we text and we talk on the phone. We are there for each other and can talk about the most intimate details of our lives living as Ostomates.
One of things that new Ostomates are encouraged to do is give their stoma a name. That might sound a little odd to most people and I would have been of that thinking years ago but it makes a lot of sense. My stoma is called Rudolph ( red nose and it was created near Christmas and my husband and I have a warped sense of humour!!) My friends stoma is called Rosie for obvious reasons…obvious to us anyway 🙂
So why give it a name? For me it makes it easier when I am in public in shopping centres etc and need to let my husband know I have a problem, I can simply say “I need to attend to Rudolph”. We can then swing into action and find the nearest disabled toilet.
It also personalises things…it is a very personal thing after all and for my friend and I we have often had a good laugh over the antics of Rudolph and Rosie….we have contemplated many times creating a Rudolph and Rosie blog but for now those stories are probably best kept somewhat private!
Not so long ago a dear friend of mine found she too needed to have a stoma. She has called hers Ruby and we too have laughed and cried together as she has adjusted to this new way of life.
So the adventures of Rudolph and Rosie will continue and I’m sure some of their antics will make it to pages of this blog over time!