My Stoma Story

I’ve  made mention of my Colostomy  (fondly named Rudolph) throughout my blog, but I realised that I’ve never really told the full story of why I  have a stoma.

Since 2014 my life has been overtaken by  the story of my broken femur  and subsequent genetic bone disease diagnosis. In many regards my stoma has just become a normal part of my everyday life. That’s a good thing and how it should be, as life before it was very bowel focused.

Grab a Cuppa, Get Comfy…It’s Not a Short Story

It’s not a short story so if you are interested in reading it, definitely make a cuppa or pour your favourite drink and find a comfy chair.

The story in my mind starts on the 1st November 2011. It probably started before that in some regards but this date was a significant life changing date that is etched in my mind. In Australia it was the day that stopped the nation. It was Melbourne Cup Day. It was also the day that stopped me in my tracks…literally.

I  was working full time as an Executive Manager for a large bank, heading up the National Contact Centre. It was my dream role. I had an amazing team of Leaders working with me to care for the Banks customers 24/7, 365 days a week and over 300 dedicated consultants on the phones.  It was a challenging role for many reasons but one of the biggest challenges was to create a culture where staff wanted to come to work, felt engaged, empowered and as a result wanted to provide an exceptional customer experience on every call. One of the major strategies in creating such a culture was to create a fun, community minded environment in the workplace. Melbourne Cup Day was one of those events that we made the most of. Any excuse really but this was a good one to make a big deal of. Morning teas in every team, Fashion on the Fields competition, Virtual Sales races, Team Leader races around the Contact Centre etc. It was a full day.

I woke on the day early as usual to get ready for work, well aware that this was an important day for my staff and it was going to be a good day but a busy day. Mornings were getting harder and harder as my Rheumatoid Arthritis caused incredible morning pain making the very act of showering and dressing difficult. On top of that the medication needed to keep my Rheumatoid Arthritis under control, had significant side effects including nausea and debilitating fatigue. I felt particularly bad on this morning and put it down to being extra busy at work and my RA was flaring.

Keeping with the Melbourne Cup theme, I was committed to dressing up. I had bought a new dress (any excuse!!) and a matching fascinator/hat. I hadn’t worn super high heels for ages because of my RA but I wanted to try and be the girl I used to be on this day so I decided high heels were essential. I was judging the Fashion on the Fields competition later in the day so I wanted to look the part. It was only one day, surely I’d survive. I had an office at work and I knew I  could kick my shoes off under the desk for much needed relief.

My husband drove me to work as he did every day. That luxury allowed me to work in the car on the way into the office and also helped me preserve all the strength I could for my working day, without having to navigate peak hour traffic. I really don’t think I could have continued working for as long as I did, with my health situation deteriorating as rapidly as it was,  if it hadn’t been for my husband driving for me every day. He is an amazing gift from above.

Apart from the excitement of it being a special day at work, a day that had been in the planning for many weeks, it was still business as usual and I was busily reading and sending emails and making phone calls during the 35 minute car trip into the city. I was a little more tired than usual that morning and I felt incredibly bloated. I just put that down to the Prednisone I was taking to help manage my Rheumatoid Arthritis, which had very graciously added a few extra kilos around my waist….much to my disgust!!

Something Just Didn’t Feel Right

I got out of the car in the office carpark and very carefully made my way to the lift. I was already realising that the extra couple of cms on my heels were going to be an issue for my screaming feet. Still I was determined and it was only for one day. I was very aware though that my stomach seemed to be growing and I was feeling swollen all over. The lift doors opened and I was grateful that no one was in there. I was hoping for a straight run up to my office on the 20th level. I was always happy to share a lift with any of my staff but that morning I just wanted a few extra minutes to myself before “the show” began. Thankfully that’s exactly what happened.

I got out of the lift and made my way to my office, smiling and  saying hello to whoever passed my way. I popped into my Senior Support Leaders office, which was next to mine, to say “Good Morning”. She was such an amazing support to me in so many ways and the best 2IC I had ever worked with. We were soon joined by other members of my Leadership team all eager to talk about the days plans and as quite a few of my Leaders were Ladies, we of course were very keen to chat about the Fashion on the Field outfits we had chosen to wear for the day.

My team knew about my health issues and were very much caretakers of my time and energy. Another amazing blessing!  I was beginning to feel that bloating feeling intensify and of course my feet were well and truly aching already so I excused myself and went to my own office to settle in and get on with some work. I wanted to do a tour of the Contact Centre to say hello to as many consultants as I could. That meant 3 levels and quite a bit of floor space to cover on each floor. Add in time standing and chatting and it was going to be a physical challenge for me but I knew it was important for staff morale. We had planned this activity would commence at 11am. I was going to be with a few of my Leaders and the walkabout was also going to give us the opportunity to take photos of all the Fashion on the Fields Competition participants so we could judge the winner later in the day.

At 10am while sitting at my desk, I suddenly felt the most intense abdominal pain I had ever experienced. I didn’t know if I was going to be sick or if I had a stomach upset. I rushed to the Ladies room as fast as I could and went into a cubicle before anyone could see me…or so I thought. I couldn’t vomit, I couldn’t go to the toilet, I just had so much pain and bloating. Standing straight was even difficult. I opened the toilet door to return to my office hoping that maybe sitting quietly and sipping water might make it all go away. As I opened the door I was greeted by my Support Leader. She had seen me leave my office and just knew something wasn’t right. She took one look at me and immediately said, “I’m ringing Peter, you’re going home”

I Had No Idea This Day Was The End Of My Life As I Knew It

I didn’t want to go home. This was a special day! I wanted to be a part of it. I was even wearing super high heels! I’d made such an effort but mostly I didn’t want to disappoint everyone. Once I was back in my office and my husband had been called to come and get me, we had a quick Leader meeting and decided that a few of the Leaders would run around and take pictures of all the Fashion entries, then we could quickly decide on a winner from each floor. They could then come to my office and we could have a photo taken together and I could be out of there by 11am. We did just that and when I looked back at those photos days later, I couldn’t believe how pale and swollen all over I was. I was flanked either side by my Leaders literally supporting me to stand. It wasn’t good.

My husband arrived with a very worried look on his face. I gathered up my things, still thinking about work and what needed to be done for the rest of the week. Still talking business with my Support Leader all the way to the car. I loved my job, I was passionate about the people, the customers and the company I worked for.

I had no idea as I left the building on that day that I would never return to my office again. The 1st November 2011, while not my last day of working, was actually my last day in that building. Any work from then on, until I medically retired in 2014, would be done from home. My life was changing faster than I realised.

My Medical Journey Begins

Once home, I rang the Medical Centre where my family Doctor worked. I had a great relationship with the staff at this medical practice as I visited every Friday morning for my Methotrexate injection. This low dose chemotherapy drug was, up until this point, keeping my Rheumatoid Arthritis under control enough to allow me to keep working. As soon as I called and explained my situation, I was told to come straight down and my GP would see me. What a relief. I felt terrible and the pain in my abdomen was unrelenting.

My GP examined me and felt that I needed a CT scan straight away. So off we went to get that done. He suspected appendicitis but was not 100% sure of that. He knew I certainly never complained unless something was really wrong so he was determined to find out exactly what was going on. The CT Scan revealed that my bowel was completely blocked. Severely constipated and possible appendicitis. I was referred to a Colorectal Surgeon who was to become a good friend over the next two years.

I had my appointment with the Colorectal Surgeon a few days later and then the fun began. He took one look at the CT scan and said straight up that my bowel was non-functioning. After listening to my history of a previous hysterectomy and my confession to having painful bowel movements for quite some time (although I was clearly in denial about that until now) he told me I needed to have a test called  a Defecography. I remember thinking that can’t be that bad and I really just wanted to find out what was going on so I enthusiastically booked the test appointment.

What on earth is a Defecography?

So what on earth is it?  It’s a type of medical x-ray imaging in which the mechanics of a patient’s bowel movements are visualized in real time using a fluoroscope.  The anatomy and function of the anus and rectum (called anorectum) and pelvic floor can be dynamically studied at various stages during the bowel movement. If you have to have one of these tests, you really need to leave at home any inhibitions. It’s full on! I arrived one hour before the test as requested and was asked to drink a cup of thick white glug. I was allowed a hot cup of tea at the same time and the staff at the radiology department were just beautiful. I felt so well cared for and they worked hard through the whole process to protect my dignity. The gluggy drink is what allows the x-ray to see the functionality of the bowel. Once you are called in for the defecography a barium paste is first injected into the rectum. This is actually the most uncomfortable part of the whole procedure. I was then quickly moved to a portable toilet which was attached to the x-ray machine and I had to try and pass the paste. I thought I was doing really well so I began to relax and think that maybe I just had a bad case of constipation and a whole heap of laxatives would be the answer.

After the test my husband and I went straight up to the Colorectal Surgeons office to discuss the test findings. Now this Surgeon doesn’t hold back any punches and I must admit that works for me. I’ve told him on many occasions though that his bedside manner really needs to be worked on. I’m a business woman and I wanted a plan and I wanted to know the facts and he delivered on that day in no uncertain terms.

The Diagnosis – You’re Stuffed!

His first comment was, “You’re  stuffed”. Yes, he did mean literally as my entire colon was stuffed with…well you know what. His second comment was, “You’re really stuffed” and then he began to explain why.

I had the following issues:

1. A severely abnormal anorectal angle ( congenital condition apparently…who knew!!)
2. A Rectocele – This is the most common finding with this type of imaging. Almost always, this is an anterior rectocele where the anterior rectal wall bulges forward, into the vagina. Mine was incredibly large and one of the reasons why my bowel wasn’t emptying.
3. Rectal Prolapse with internal intussusception – Basically my rectum was telescoping into itself when I was trying to have a bowel movement, making it impossible to accomplish.

Put all these three together and he was right, I was stuffed.

So started a Surgical path that commenced on the 19th December 2011. The first procedure was a Rectopexy. I had a Laparoscopic rectopexy  which is one of the surgeries used to repair a rectal prolapse. In this surgery, the rectum is restored to its normal position in the pelvis so that it no longer prolapses and this procedure also fixed the Rectocele. I was home for Christmas, hopeful that 2012 was going to be the start of some real improvement on the health front and I would be able to return to work early in the New Year.

A Not So Merry Christmas

Life is never quite that simple with me. It was Christmas Day and I felt a little off. I expected to feel that way as I had a fair bit of recovery ahead of me. We opened our presents and were having a very quiet Christmas at home, just the two of us, given I’d not long got out of hospital. I got up and was going to have a shower when I felt like I needed to quickly go to the toilet. I was bleeding and it wasn’t just a little bit of blood. It was Christmas Day and we really didn’t know what else to do other than go to the ER. Not exactly what we had planned for the most important and precious day of the year to us but thankfully it was quiet and I was seen straight away. After being subjected to a pap smear and a CT scan, we were told I had a large pelvic hematoma. The emergency DR had consulted with an on call Colorectal Surgeon and they felt that it would be ok to just let it bleed out. They gave me some oral antibiotics and told me to come back if the bleeding got any worse.

The next day, Boxing Day, I woke with a soaring temperature and the bleeding was most definitely heavier. Off we went again and this time the ER Doctor said my file had instructions to admit me straight away if I returned. The red carpet was rolled out and I was moved quickly into a lovely Private room in the new wing of the hospital where I stayed until New Years Eve on IV antibiotics. I not only had a Hematoma but I had a pelvic infection, all thanks to my immune system being lowered by my Rheumatoid Arthritis medication. The complexities of an autoimmune disease really are never ending.

Once I had recovered from the hematoma complication, I began to enjoy a more normal relationship with my bowel. This return to functionality made me realise just how bad things had been for quite some time. The surgery, the infection and my Rheumatoid Arthritis had left me feeling incredibly weak and I was unable to return to work like I had hoped. Thanks to an amazing company and supportive boss, I was allowed to work from home and I managed the Contact Centre operations remotely for many months successfully. I had a great team of Leaders on the ground who made that possible too and I am forever grateful. I wasn’t ready to let go just yet. I still held out hope of a full recovery.

Oh No! Here We Go Again

That hope started to diminish mid June 2012 when I began to experience a lot of pain whenever I tried to have a bowel movement. So much so that my husband would need to hold my hands so I could squeeze them to cope with the intensity of the pain. It was horrific . It was worse than it had ever been. I could feel that hope of returning to a normal life running away and running away at high speed.

My husband and I returned quickly to my Colorectal Surgeon. He was seeing me fairly regularly as my healing from the Rectopexy surgery had been so slow. He and his staff were incredibly supportive and we were both devastated when I told him I didn’t think my bowel was working again and something didn’t feel right. He  believed me! Unfortunately the only way to confirm that was to have another Defecography. I knew what to expect this time and that didn’t make it any easier, it actually made the prospect of a repeat test just plain awful. Still, I was a big girl and I knew I needed to suck it up and get on with it.

The repeat Defecography told us all what we really didn’t want to hear. My rectum had prolapsed again internally, my rectocele had returned, although was smaller this time and my anorectal angle was even more severely abnormal than before. Surgery had failed. We were devastated.  My first question was “So what do we do now?”

It was at this consultation that the word “stoma” was first raised. My Surgeon said this was an option I needed to seriously consider and he also said that we could try repeating the Rectopexy, this time with a perineum approach and internal mesh to have a better chance of holding everything in place.

We went away to consider our options. I had a great Gynecologist/Oncologist who was also excellent in his field and I knew that he dealt with prolapsed bowels and stomas.  In fact I remembered when he removed my ovaries in 2010, that he said to me after the surgery that my rectum was sitting at an odd angle and I may have issues with that in the future. Well he was certainly right about that! Anyway, my husband and I decided to pay him a visit to get his opinion on our current situation. I took both defecography reports and films with me and explained what had been happening. We will never forget the look on his face. He was so upset at what he was looking at. He looked at the reports and then looked up at us both and said ” you are in excellent hands with Dr xxxx. He is treating you conservatively at this stage and keeping some things up his sleeve if that doesn’t work. I am so sorry this is happening to you”

We Knew For Sure I Was in Good Hands

We left knowing a few things. We were in good hands, we did have a serious issue to deal with and we knew the “keeping things up his sleeve” comment was referring to a permanent colostomy. I felt sick. I wasn’t ready for a colostomy. I just couldn’t imagine it and I really didn’t want to think about it. Normally I would research the life out of something  but I couldn’t even bring myself to do that at this stage. I think that was because I had  the option of a repeat rectopexy and at this point I was pretty certain I wanted to go down that path. I needed to know that I had tried every single avenue and then if I did have to have a stoma, I would know I had no choice and I knew that would help me accept the outcome.

September 2012, I had my repeat Rectopexy. This was more painful than the first one due to it being the perineum approach. Sitting was horrendous and my pain levels were through the roof. Once I recovered though, early in the New Year I did begin to enjoy a healthier bowel again. I had by this stage, as a result of Rheumatoid Arthritis, bowel surgeries and prolonged recoveries, stopped working and was now on Income Protection. It was a hard decision to go down this path but I knew it was necessary. My body was failing me on so many levels and in many regards the worst of it was yet to come. I was still in touch with my Leadership team who were good friends and their support of me was fantastic. I still had a glimmer of hope that I would be able to return to work at some point, although in my heart of hearts I was starting to say goodbye to that life.

A Side Issue

February 2013 brought another mini crisis. I started having right sided abdominal pain which turned out to be an incisional hernia. It was from my hysterectomy in 2007 and thankfully my Colorectal Surgeon was also a General Surgeon so he was happy to book me in for more surgery. I was happy he could do it as he knew my complex history and that made the ordeal of yet another surgery a little easier to cope with. When my Surgeon went in to fix it, he couldn’t believe how deep and tangled within the muscles the hernia was. He said he had never seen anything like it. I on the other hand, was not surprised at anything by this stage.

Unfortunately while in hospital post surgery, I contracted clostridium difficle infection. It is an antibiotic resistant bowel infection which is debilitating and needs to be treated by a Infectious Disease Specialist. I so could have done without that. I was in isolation in hospital and then at home for many months as a result. Not fun at all!

Mid 2013, I again started having issues with my bowel functionality. The c diff infection was such an onslaught on my bowel that it probably came as no surprise, to anyone working on my case, that my second rectopexy was likely compromised. So back I went again to see my Colorectal Surgeon.  This time he spoke to me in more detail about the likelihood of needing a permanent colostomy. This was not however something he would do lightly and not something I would say yes to lightly,  so together we worked out a plan of approach for next steps. It was clear and concise and would take a few months to pull together but it was so important to helping us all arrive at an end point decision:

1. Repeat Defecography….oh dear here I go again!
2. Colonic Transit studies – this was to make sure that there was nothing else going on that would continue to give me issues even if I did have a stoma. If my large intestine was non functional, I may need an ileostomy which would by pass it. This is a stoma that is formed on the right hand side of the abdomen and the small intestine contents empty into a drainable bag attached to the stoma.  If I was functioning ok from a colon transit perspective a stoma on the left hand side called a colostomy would work for me. This would basically just bypass my rectum, which in my case was the non functioning part of my bowel.
3. Colonoscopy & Endoscopy – just to make sure all was well from a Gastrointestinal perspective.

The First Life Changing Decision

While I was going through all of these tests and procedures I was also making the biggest decision of my life. It had become evident that any prospect of returning  to work was well and truly over. My medical team had been telling me for a while that they would support a Total Permanent  Disability  Claim (TPD) through my Superannuation. My Employer was also telling me they would support a claim and my husband was supporting me no matter what I decided. I know this is going to sound really stupid but I just didn’t know if I was deserving to apply for a TPD.

I still tended to underestimate how bad my health was. I still felt so completely capable mentally,  it just seemed to me like I should just push through if I could. Given the overwhelming support from my Drs and the relief they conveyed when I told them I had decided it was time to stop work, I knew I had fought a good fight to hang in for as long as I could and it was definitely time to close the working chapter of my life. My body and brain needed to work together and that obviously wasn’t possible anymore.

Many tears flowed but once I submitted my claim a sense of relief also came. We still however didn’t know if the claim would be approved. I had completed the most comprehensive application possible so all we could do now was trust and pray. Without that payout we were going to be in severe financial trouble but our faith was real and important to us and we knew that God had never failed us in the past and we were confident He would take care of our future.

Tests completed, we sat down with my Colorectal Surgeon and reviewed all the results. All tests were normal except the Defecography. My rectum had again internally prolapsed. I now had a larger Rectocele and an Enterocele ( Small Bowel protruding into vaginal rectum space) My bowel would not function even with excessive laxatives without excruciating pain. I was also starting to have bowel incontinence as my body was trying to eliminate waste by watering it down and moving past the constipation. It was time!

The Second Life Changing Decision

There was one more step before signing the stoma surgery authorisation. I had to be assessed by a Stoma Nurse to make sure I really understood what I was about to agree to. Of course now that I was in the head space of knowing I needed the stoma, I began researching like never before. I even walked around the house with a lumpy bag of frozen peas down my pants so I could get an idea of what a full bag would look like with clothes on. I was pleasantly surprised to see that all my clothes looked fine and you couldn’t tell there was anything unusual going on at all. By the time I saw the stoma nurse she was blown away by my knowledge and was completely satisfied that I was ready.

I was ready. I was so ready. I was over all the pain and discomfort, the surgeries, the tests, the disappointments. I needed this and I was actually looking forward to it. Now that is not something I could have said 12  months prior. I felt really blessed to have had time to work through the process, to grieve, to research, to accept.

On November 11th 2013, my perfect little stoma was formed. My Surgeon was determined to give me the most perfectly formed stoma possible and he achieved it! Ostomates are encouraged to give their stoma a name as it helps to personalise it. I thought that sounded a little odd originally but being close to Christmas my husband and I decided this little red stoma could have no better name than Rudolph. It created a sense of fun to name it Rudolph. My husband didn’t bring me flowers the night after surgery, he brought me a cute little Rudolph soft toy. That gift couldn’t have been more perfect.

I adapted really well to managing Rudolph on my own in hospital and at home, with only a few minor hiccups which Peter and I just laughed about. What else can you do?

A Perfectly Timed Blessing

I was 2 weeks post surgery and recovering quietly, contemplating all that had happened over the past two years, when the phone rang. I was tired and didn’t really feel like talking to anyone but Peter was downstairs and couldn’t make it to the phone, so I picked it up and gave my name. The female  voice on the other end said, “Hi Sam, I’m just ringing to find out where you would like your claim payout funds deposited?”

I cried and cried like I have never cried before! The poor girl on the other end kept saying “are you ok, are you ok?”  I eventually pulled myself together and asked her to clarify that she was talking about my TPD  claim. She confirmed she was. I was in shock. I expected to receive a letter or an email to say my claim had been approved, not an out of the blue phone call asking where I wanted the funds deposited!! She laughed and said the letter was on the way but they just wanted me to get the funds asap and I would receive an email later that day, which I did.

What timing, what relief, what a blessing.  Our future was being taken care of. We could buy our own home, we had financial security, we had survived a difficult and tumultuous time.

We could move forward with our new life, knowing that whatever twists and turns lay ahead, of which there would be many, we could continually place our faith and hope in God, who had once again provided for us beyond our wildest dreams and with perfect timing!

“This is the blessed life – not anxious to see far down the road nor overly concerned about the next step, not eager to choose the path nor weighted down with the heavy responsibilities of the future, but quietly following the Shepherd, one step at a time.”

-Lettie B Cowman, Stream in the Desert: 366 Daily Devotional Readings

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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