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MY STORY…

To do or not to do?

I have been asking myself this question for a couple of months now…

There are so many other fantastic blogsites that raise awareness for IBD and ostomies, my journey is a little different though…I have an ileostomy BUT I don’t have IBD!!!

Here is my journey how I became an ostomate….

As a child I had suffered from constipation, but I was always to embarrassed to talk to mum about it, even as I grew up, talking about my bowel habits was a subject that was taboo! I married young and spent these years raising my family; by the time I was 26, I had given birth to 3 children and had a hysterectomy. I had chosen to have my children young so that I could grow with them, and still be young enough to follow my dreams when they had left home! Needless to say, I continued having issues with my bowels but I busied myself with my family (and buried my head in the sand!!).

Following a move to Tasmania, I went to the Dr who sent me for a blood test, results showed I was anaemic, unusual given I’d had a hysterectomy! I was sent for a colonoscopy which showed that my bowel had excess length, so much so that my cecum couldn’t be viewed. I had no cancer or IBD, so I was thankful for that! The treating Gastroenterologist told me that I would probably have to have my bowel removed in ten or so years time. I was given a bucketload of aperients and request forms for blood tests, off I went on my merry way!!!

As the years flew by, although my bowels were still playing up, and I suffered periodic bouts of severe abdominal pain,  I just kept my head buried in the sand. There was so much other stuff happening in my life, both good and bad, that I didn’t stop to smell the flowers nor take time to see what was beginning to happen to my body. It was the friends and family around me who were telling me to slow down, I was losing to much weight, was I eating ok? It wasn’t until I began nursing full time that I hit a brick wall!

In the beginning, it was at the end of my shift that I noticed the abdominal pain was really quite severe, however, as time passed (a matter of weeks) I wasn’t able to get through the shift without noticing the severity of pain! In addition, although losing weight at an alarming rate, my belly would be bloated. I would also bleed from my back passage every time I tried to open my bowels. I was becoming miserable.

I visited my GP who sent me for an x-ray, it showed quite a packed bowel, nothing significant though. We thought it might be adhesions from my hysterectomy. I told him about my experience in Tasmania, and given the significant weight loss (I’d lost at least 20 kg in a couple of months), he wanted to eliminate bowel cancer. So I was booked to have a colonoscopy. I chose to have this at the hospital where I worked to cut down waiting time. It was hard to do as the mere thought of having such an invasive procedure in front of my work colleagues embarrassed me somewhat!!! Not to mention that at the time I was doing a lot of shifts in this area!

My appointment day came, and like everyone else who has had to have a colonoscopy, I managed to endure the “prep drink and tablets” required to ensure a clear vision of the bowel. I pride myself that I can honestly relate to the patients disgust when asked if they followed the required “prep”! My turn came, and when the Dr came and talked to me about results, he said that my bowel was extra long, tortuous and twisted. There was no cancer, and again, no IBD. He felt that the causative factor was adhesions. He referred me to the surgeon.

In between all these visits, I was starting to experience bowel obstructions which meant that I could be lying as a patient next to the patients that I had nursed that morning! I saw the surgeon who requested a Barium Enema. I had this done and again, because of my excess bowel, the whole of my colon could not be viewed! By the time I had left the facility and on the drive home, the barium had set in my bowel and I was obstructed! I was in hospital for 2 weeks after this test and to this day I feel sorry for people who have to undergo this test.

The surgeon came and saw me in hospital to tell me that I would have to see a Colorectal Surgeon further afield. He contacted his colleague who was no longer seeing new patients, however, he could highly recommend a surgeon whom he had mentored. An appointment was made for me to see the surgeon which was 2000km from my home-(a downside to living in the bush). In the meantime, I continued having bowel obstructions and was being monitored and tested. One of the tests I had was a Defecogram. This test entailed me being injected with barium meal into the rectum. I then had to sit on a portaloo and as I tried to expel the barium, I was being x-rayed. This showed whether my bowel was intususscepting when trying to “poop”, as well as evidence of prolapses. Mine showed I had a rectocele as well as a small cystocele.

The time came for me to see the Colorectal Surgeon. I was extremely nervous at what to expect and what the outcome would be.  Following my appointment, the plan for me was to undergo a “Resection Rectopexy”. A section of my sigmoid colon would be removed and the two pieces of colon, then rejoined, in addition my rectum, which was prolapsed, would be “hitched up” and attached to my sacrum. Before I was booked to have the operation,the surgeon wanted me to have two more tests, both which would  be done in Brisbane. I returned home, only to have to go back to Brisbane two weeks later. My first test was a more extensive examination under anaesthetic, and the second test was a 5 day nuclear transit study. These accomplished, again, I returned home. A couple of weeks later, I received a phone call from the surgeon. Test results were in and it seemed I had failed miserably! In a few short words, I was told my large bowel was “basically stuffed”! The nuclear transit study showed that my ascending colon had retained over 1/3 of the tracer and the remainder had still not reached the rectum. Hearing that, I thought the specialist was quite generous in his summation of my large bowel!! The words that followed, however, left me silenced as I tried to figure out if I really was hearing this. In light of the  poor function of my bowel, the solution was to form a temporary ileostomy. At a later date, my large bowel would be removed and I could have either a ileorectal anastomosis, or a permanent ileostomy. However, that was further down the track and it was the here and now that was to be addressed. When ileostomy was said, my instinct was that “yes, that will solve the problem”! However, the full implications would hit me as I began to think about what this would entail. I was given a choice of two dates for surgery, the first being in several days or 10 days; needless to say I opted for 10 days. I needed time to process what I was about to undergo, in hindsight, I wonder if I would have been better opting to have this done as soon as possible!

An appointment was made for me to see the Stomal Therapy nurse at the Wesley hospital, where I was booked to have surgery. When I went in to see the STN, I was feeling as though I was in a dream and that soon I would wake up and this would all be over! To make matters worse, as I was in the room with her, and looking out the window, I could see this strange red haze engulfing Brisbane. The sun was getting redder and redder, everything was getting hazier and hazier! As we talked “appliances” and “stomas” and  “sitings”, it all only added to the surrealism which I was experiencing. I also heard all these terms and realised that I was on the cusp of a whole different way of life. When given the choice of what appliance I would like, I just broke down, my sobs heaving my skinny frame, it all became real for me. I was then “sited” with a special marker, the STN, made a ‘X’ on my abdomen. It was the most appropriate site in which my ileostomy would be formed, based on several criteria, that whilst the same for everybody,  is also different for every person undergoing ostomy surgery. As I travelled back to where I was staying, I felt like a ‘marked person’, I was hiding a secret under my clothes. Could other people notice a change in me? Even though they didn’t know me, did I look different? Could anyone see the ‘X’ on my stomach? Again, to add to my thoughts, Brisbane had been covered in a dust storm that had blown in from the west. I am sure that it was all because tomorrow I was going to my undergo life changing surgery!!! 

When I awoke from my operation, the first thing I did was to feel my stomach…I don’t know what I was expecting, but, regardless of how much I was prepared, nothing could prepare me for the huge, swollen, red, and sore bit of exposed small bowel on my stomach!! The pain was ‘operational’, and my stomach otherwise felt like it had been healed! I was back in my room when I woke again, the pain was minimal, and I knew that I had just turned the corner. Excitement began to surge through me as I began to vision my new life now, one without pain! That evening, I was able to eat a substantial diet, more than I had been able to eat for a long time! I was discharged the next day, following a crash course in changing and caring for my ileostomy prior to discharge. I was to stay in Brisbane for several weeks, in which time I received my stomal supplies. I had an obstruction that came from eating food that I shouldn’t have had. I went back as an outpatient to ensure that I could change my pouch, and to ask any questions, I became a member of the Qld Stoma Association…so much was happening and it was all so exciting. My new life had just begun…September 24th was not only my husband’s birthday, it was the rebirth of my new life as well!! Double celebration!

I returned to work at the end of October 2009, a series of personal tragedies would befall me, but I had strength to endure them. January 2010  my ileostomy retracted, so much so that I had a hole the size of my small fingernail on my belly. It was excruciatingly painful, and I was totally freaked out. I went to the GP who had a look and reassured me that the ileostomy was still attached, but he couldn’t tell me if it would come out or not! It came out later that night, but this was something that would reoccur at random, with no rhyme nor reason! My peri-stomal skin was beginning to break down, times I was miserable but I determined to enjoy life.

The date was set for me to undergo colectomy with ileorectal anstomsis (IRA). I deliberated long and hard about the decision to have this operation and the reasoning behind my choice was that I wanted to be left with the ability to choose; if the IRA should fail, I would at least have the choice to have a permanent ileostomy, should I have a permanent ileostomy, I had no choice left should things go wrong!! I arrived in Brisbane a couple of  days before my surgery The day before  was a bleak and cold day and I wanted to travel the CityCat along the entirety of the Brisbane River…it was like my last day of freedom for a few weeks!

Operation day dawned, sleep was pretty crappy but I figured that I would soon have a sleep for several hours so wasn’t stressing. I felt surprisingly calm, well sort of. Deep within my core I had an inexplicable fear, one that to this day I have only ever experienced once since, thats another story. I presented to the hospital, waited, went through the pre-operation check,  then it was my turn…..woke up, sure that I had only just gone to sleep!

My body hurt and I had tubes coming out from me every which way, the most noticeable thing was NO ileostomy!  The PCA became my best friend, and the second day after my operation, I was up going for a short walk!! Time passed, and soon I experienced excreta running from my back passage. It seemed I had no control, and even though I could feel it running out of me I couldn’t stop it, no matter how hard I tried!  I was still going for walks but instead of feeling stronger, I was feeling weaker. By the third day, I was still experiencing warmth as it ran from my body, and now all I wanted to do was sleep. I was aware that nurses were becoming concerned, my blood pressure was falling, and I now realised that the warmth I was experiencing was blood. I was bleeding from somewhere inside me, and as time passed, I could feel myself fading. I was rushed back to theatre to find the source of bleeding and that night I received several units of blood.

Following this setback, I was back on the road to recovery, I began a soft diet to try and slow down the diahorrea, unfortunately, my bowel stopped working so I went back onto a fluid diet, the diahorrea started!! This was a puzzle to the surgeon, and in addition I was also experiencing severe abdominal pain! It soon became apparent that the operation had failed, much to the disappointment to everyone. A decision was made that a permanent ileostomy would be formed, so exactly 3 weeks after the original operation, I headed back to surgery to have the construction of my permanent ileostomy.

I had my follow-up with the surgeon, which would give me clearance to fly back home. At this visit, I talked about my concerns, one which was the pain I experienced every time I urinated. This pain started soon after surgery and was still bothering me, but it was put down to being operational. The surgeon sent me for a an ultrasound that tested my ability to empty my bladder, the results were all clear, so I flew back home. Abdominal pain continued to hound me as did the pain associated with urination. Following consultation between my GP and the surgeon, I was sent for a CT Scan, this showed that I had a pocket of fluid in my pelvis. I was required to go back to Brisbane so the surgeon could have a look inside my belly. When I awoke, the surgeon explained that adhesions had attached to my right ovary and twisted it around and pulled it deep into the pelvis. They had also adhered to the left side of my bladder and also pulled it deep into my pelvis. He had rid as many as he could as well as having to drain the ovary. I returned home with the assurance that my healing would now begin!

Abdominal pain continued to hound me and again, my bladder began to become my enemy. I flew back down to see the surgeon, as my quality of life was non-existent. On October 28th 2010, I was admitted to the Wesley hospital for pain management and investigation for the ongoing pain. I saw a Pain Management specialist along with a Urologist. The urologist performed a cystoscopy and when I awoke, he came and told me that my bladder was atonic. As a result, I would have to self-catheterise. I was so upset by this news, as I was a nurse who inserted catheters into my patients…I didn’t do this to myself! Over the days that followed, I experienced every possible emotion that ever existed. Every day the urologist saw me I always asked why, something that he couldn’t explain except that perhaps my bladder was beginning to suffer the same den-nervation that had affected my large bowel. The abdominal pain continued, and in addition, my stoma began to retract as well! I was a miserable mess!! I spent a total of 7 weeks in Brisbane, during this time, I had a neurostimulator inserted and mesh inserted around the ileostomy to try and prevent it from retracting. To date, I’d had 6 operations.

Not only was I suffering from chronic abdominal pain, self-catheterising, and having ongoing problems with my ileostomy, I began experiencing severe pain in my rectum as well as colitis! After much deliberation, a decision was made for me to return to Brisbane to undergo a Abdominoperineal Resection. I was scheduled for surgery exactly 12 months and 1 week since my colectomy and IRA! I was also “sited” for possible re-siting of my stoma to the left side of my belly in an attempt to try and stop the retractions, however, myself nor the surgeon were keen for this to occur. When I awoke from this surgery, the pain had gone, I was feeling operational pain so things were pretty rosy! The surgeon explained that things were a mess inside and his vision was not as clear as he would have liked, but everything seemed ok. There were a few minor hiccups in my recuperation, however, perhaps the biggest problem was the fact that I could not sit down!!! In fact, even as I type this, 12 months later, I still cant sit down!

As a result of all my operations, and the growth of adhesions, I experience chronic abdominal pain. I see a pain management specialist closer to where I live. I have undergone nerve ablations, in which nerves are injected with local anaesthetic to try and dull the random firing which causes the pain. I was due to have another neurostimulator inserted that would have two leads. Prior to this operation, I suffered a partial obstruction and hospitalised for several days. The cannula insertion point became septic and my operation had to be cancelled because I had septicaemia. I was re-scheduled for the following month. I admitted to hospital the day before. The plan was to remove the single lead neurostimulator, send me for a CT Scan, then insert the double lead neurostimulator. I awoke in recovery asking when I would be off for the scan, the nurses seemed hushed,  and as I drifted in and out of sleep, I kept asking about the scan. The surgeon then came and told me that the operation had been cancelled and I was about to be transferred to the ICU/CCU! It turns out that as the old neurostimulator was removed, the bleeding was uncontrolled. In fact, it took approx. 20 mins to stop the bleeding and the incisions couldn’t be sutured! Blood studies were being done, in addition, my heart rate slowed right down and couldn’t be reversed with the use of special drugs!!! I was devastated by this news, and I spent a week in ICU/CCU. My heart rate at rest was very slow, however, when I would stand up, it would speed up to 140bpm!  I was begun on medication for my heart, which is now stabilised, I am yet to see the haematologist but one test result shows that I am low in a clotting protein. Just recently, my ileostomy began prolapsing to lengths of 20cm.

I am due to be hospitalised in Brisbane (20/08/2012) so my surgeon can examine my ileostomy with the possibility of re-siting. He won’t however operate until I see a cardiologist and haematologist. My pain management surgeon wont operate for the same reasons. Whilst I’m in hospital I will see both specialists who I hope can provide answers to the ever growing problems that seem to be occurring to my body!

Once a journey has begun is there really ever an end to it? Maybe for some there is, for me mine is JUST beginning!

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