Shazzy And Harriet
Me And My Stoma
Ok, where to begin. I was diagnosed at approx 5 years of age with Ulcerative Colitis. My parents though, think that I possibly had it since birth because my mother occasionally found blood in my nappies when I was a baby but it must have been very mild at that stage.
What first clued my parents into thinking that something might be wrong was that I began having bouts of diarrhoea.
And so it started, a trip to our family doctor, who realised immediately that I was very anaemic, resulted in a referral to a specialist at the local Children's Hospital. Unfortunately, the first guy we were referred to specialised in heart problems and once he found out that my heart was ok, he lost interest. However, another referral to another specialist and we seemed to be getting somewhere. He promptly put me in hospital and a couple of days later confirmed what my parents had been saying. I can still hear him saying to my mother about how a lot of parents tend to overdramatize these things "but in your case Mrs S, your worries seem to be justified". I was diagnosed shortly afterwards. From then on it was a seemingly neverendless stream of weekly visits back and forward to the specialist (my mother would joke that we could get into the car and say “drive” and it could drive to the hospital by itself). There were also the weekly blood tests and often stool samples to be given as well, not to mention the frequent hospital stays. I often wonder now that as a kid, I accepted all this, along with the countless number of pills I had to take daily, as part of a normal life and never really complained about all the needles, procedures, etc. At times I would actually be GLAD that I was having the occasional blood transfusion – I was sure that with all the blood that was coming out of me via the blood tests and bloody diarhoea that there couldn’t be too much left in me.
To be honest, I didn’t really mind the hospital too much, and the food (what food I could eat), wasn’t that bad either (plus the fact that you often get some great presents from friends and relatives whilst in there). The nurses and doctors were great and when I wasn’t too sick to enjoy it, the Occupational Therapist (we, kids, called her the “Play Lady”) always had stuff for us to do. In fact at one stage I was even contemplating on becoming a “Play Lady” when I grew up – I thought it would be a great job – you got to play with kids all day – until I found out the realities of an OT’s job when I got older.
There was also a time when all I seemed to be hearing from the nurses and the other kids on the ward about how so and so was going to theatre. I wanted to go to theatre too – I loved the movies! Unfortunately, I soon found out what type of theatre they were talking about hehe.
The main medication I was on was Salazopyrine (Sulphasine) and the dreaded Prednisone. There must have been some others too because at one stage I was up to 21 tablets a day (not including those that had to be broken in half because they were too large for me to swallow) but the memory is hazy now. I must have literally rattled at that stage. I was also, at times, given courses of steroid enemas and they even tried crushing the Salazopyrine tablets and giving them to me via enemas at one stage.
During my first year of being diagnosed I was also seeing a hospital psychiatrist once a week. In those days, it was commonly thought that stress caused IBD. As far as I could tell all the guy did was play games, such as snakes and ladders, etc all the time, but I now realise that during the whole time he was probably subtly questioning me and figuring me out. The outcome was that he pronounced me a normal (although ill) child with no particular hangups.
Being the typical kid, I did not like taking my medication and for a while did not take the ones I was scheduled to take whilst at school – that is until I walked into my room one day and there was my mother with my schoolbag and all my untaken pills spread across my bed. Boy! Did I get a lecture on that one! Looking back I should have been smarter and just thrown them away hehe – no, not really kids – it is BAD not to take your medication when needed! (just thought I’d qualify that one for any kids reading and contemplating doing the same thing).
I do not have many happy memories of my Primary School days – I was always the shortest (prednisone saw to that) kid in my class and the chipmunk cheeks (thanks again to pred) made it so easy for the other kids to pick on me all the time. I did not make friends easily and being away from school due to illness so much did not make life any easier. The teachers, however, were great both in Primary School and High School. I did not have to get permission to leave the classroom to go to the toilet – I was allowed to get up and run (and hope I made it on time). One teacher even offered to give up some of his spare time on the weekend to teach me if I ever needed any extra help with school work. I never did need that extra help though, somehow I managed to keep up with my school work despite feeling awful all the time. Mind you, being sick did have it’s advantages – I got out of doing physical education at school, something I hated anyway.
After approximately 5 years of trying every medication available at the time and a very restrictive diet (no roughage, no dairy products, no starch, etc) it was clear that nothing was helping much. I was not growing due to the massive amounts of prednisone I was on. I was up to 20+ bowel movements a day every day – I did not reach remission once. The constant diarrhoea did have one advantage (if you can call it that). I never had to take any of those laxative type medications I hear so many people complaining about before colonoscopies, barium enemas, etc. My body cleared me out naturally all the time! But finally, something had to be done. At one stage, my parents were considering taking me to England in the hopes that some radical treatment could be found over there until my doctor showed them a letter from some other parents who had just returned from England seeking the same thing for their child stating there was nothing different over there than what could be obtained in Australia.
My parents had known about the “cure” for UC (ie an ileostomy) for quite a while but had said nothing to me about it in the hopes that just maybe I would end up going into remission and not need it. But finally the time came. When they told me about it, my first question (in all of my childish innocence) was “will I still be able to go swimming?” When told I could, I said go for it then. Can you believe that swimming was all I was worried about? To be honest I think I was just too excited at the prospect that something could actually make me well again. So the decision was made.
My parents say to me now that their biggest worry about the surgery was that someday I would turn around and say to them “why did you let them do this to me?” I never have. One of the biggest things I have to thank my parents for was that they were very open about my operation. When my grandparents were told about it, my grandmother’s first words were “You’re not going to tell the boys (my two younger brothers), are you?” When told that of course we were, she was mortified to say the least! She was of an age where things like that were kept in the closet and not talked about. Thankfully, she is heaps better about it nowadays. My parents were determined that this operation was something that I was not going to be ashamed of. To this day my mother states that one of her fondest memories is of me cutting out my bags getting ready for a school camp, with me and my two brothers forming a “Production Line”. One would cut out the wafer, the next one the bag and the third one would stick it all together (I use a one piece system).
To prepare me for my op, we scheduled an appointment with a Stomal Therapy Nurse. She told us what the op entailed, showed us samples of the different types of bags and gave us some pamphlets about it. For a couple of weeks before my op, I actually wore a bag so I could get used to it, adding water to it to get a better feel for the whole thing. I did get upset at one stage because I had a party to go to and didn’t want to wear the bag to the party. My mother almost relented but then decided no, I had to wear it because after my op I wouldn’t be able to take it off when I wanted to. I hated her for it at the time but age brings wisdom and I can now see her point. Wearing the bag for that initial couple of weeks had another advantage to it. I was able to work out where the best placement for my stoma was during this time which is one of the biggest hurdles in ostomy operations.
So, at 10 years old, I went into hospital on January 4th to prepare for my operation. My surgeon was a sweetie and instead of going to the surgical ward, he agreed to let me go to my usual hospital ward where I would be in familiar surroundings, which meant he had to go out of his way on his hospital rounds to see me.
I kept a diary around this time so have used that for a lot of what follows (my memory is not that great!!!!!)
Three days of blood tests, etc and then finally came the big day.
January 7th - Harriet, my stoma, was born. I remember nothing of that day except waking up briefly and trying to wave to my grandparents but was too doped up to be able to wave properly. I then promptly fell back to sleep.
January 8th – My diary says I slept most of the day but did awaken to find that I had a tube down my nose, a catheter for my urine and an IV drip in.
January 9th – I managed to get out of bed twice into a chair but according to my diary it was very painful to do so (hmmm….I imagine it was lol)
January 11th – Got brave enough to look at my stoma for the first time whilst the ET changed my bag for me. It looked very big and red!
My grandparents bought me a small black and white TV (one of the benefits of being in hospital as I mentioned before – lots of presents!). If I hadn’t had felt so sore I probably would have been feeling grand that a 10 year old had her own TV!
January 12th – Now this was a big day. My cousin, Judy got married that day and I had been upset that I wouldn’t be able to go to the wedding because of being in hospital. For some reason unbeknown to me, the nurses were all fussing around me in the morning making sure I was wearing my best nightdress and doing my hair up for me. I had no idea why….. until…. to my surprise in comes the whole wedding party! They had arranged it all with the Ward Sister beforehand and kept it from me! The photographer had to come in first because they wanted to capture the look of surprise on my face when everyone walked in. Surprised? That was an understatement! I think the nursing staff and the other patients got as big a kick out of the whole thing as I did!
Today was also the day that I started eating solid food again – yippee!!!
January 14th – started walking by myself – slowly.
January 15th – had my stitches out. Today was also the day that I got to change my bag on my own for the first time.
I finally came home from hospital on January 19th – 12 days after going in. It seems a long hospital stay compared to nowadays where I’ve heard of people going in for their ileostomy op and coming home 5 days later – but this was 25 years ago.
I was in our swimming pool at home 3 days after coming home from hospital and it was then I had my one and only mishap with my bag whilst in the pool. I had dived in from the side and the force of the water lifted the wafer from my skin. Luckily, my bag was empty and I was at home. A quick change and 20 minutes later I was back in the pool. I didn’t dive in for quite a while after that one!
From the first, I have taken sole responsibility for caring for my stoma and changing my bags. My mother reminded me the other day that the only time she ever saw my stoma was when I was in hospital. I was just too independent, even at age 10, to let anyone help me – I was going to do it on my own.
Lots of people ask me why we didn’t opt for the J Pouch. We did. In my initial surgery, my rectal stump was left in place in the hopes for the J Pouch surgery but it was just too diseased to be of any use, so a year later on May 14th, out it came – and along with it my rectal sphincter muscle which is used in J Pouch surgery, so I was left with the conventional Brooke’s Ileostomy. Not that I miss my rectum – all it did was cause me grief anyway – good riddance to bad rubbish I say. At first it felt a little strange not to have an opening down there but as time went on I got used to it.
This hospital stay also lasted 12 days and get this – I wrote in my diary on the day before I went home “Might be going home tomorrow. I feel kind of sad to think I probably won’t come here again.” Hmmm…. maybe I was sicker than we all thought hehe.
Going back to school following my initial ostomy operation was a little strange. Of course, all the kids wanted to know what had happened, etc. As a kid, I was very shy (and still am to a certain extent) and didn’t relish the thought of having to explain my operation to them and so just told them it was because of stomach problems and left it at that. Once again, I did play on my operation saying I wasn’t allowed to do sport and seeing as my teachers didn’t know any better, they believed me so I was happy with that.
Who did I tell about my operation? Well, my closest friends knew about it as did all my relatives and school teachers. Others? Well, I figured they didn’t need to know.
During the first year following my operation, I did get a lot of leaks until I found the right appliance system for me. I only leaked once at school thank goodness. At home, our code word for when I was having a leakage was that I had an “accident”. So when I discovered the leak at school had soaked through to my uniform skirt, I went up to the Deputy HeadMistress and told her I had an “accident” and could she please call my mum to come and pick me up. Well, when the Deputy called my mum and told her I had had an “accident” you can imagine what my mother thought. Thank goodness, this teacher was great and laughingly told her to calm down and explained to her what had happened! I am very happy to
say that I have had no more public mishaps since that day.
After High School I spent a year at uni but then couldn’t be bothered studying anymore so off to work I went. My dilemma? Do I tell my bosses about my op? I decided that no, they had no reason to know, since it didn’t affect my work at all and I hadn’t even needed to see a Stomal Therapy Nurse since about 6 months after my second operation.
I now work as a data processor for the Diabetes Association here and everyone at work knows about my surgery. Previous to this job, I worked for a large Government department for 15 years and my branch had about 50 people in it. About half of them knew. Admittedly, because basically I am a shy person, I told none of my workmates about it in the beginning – it’s only the past 10 years or so that I’ve really felt comfortable telling them – and guess what? They couldn’t care less about it – some ask a few questions, I answer them and that’s it – they take it as a matter of course. One girl whom I’ve know for about 6 years said “but you don’t smell!” Aha, another ostomy myth squashed!
The same goes for my dating life. I do not tell my partner about my date on the first outing. I let them get to know me first as a person then hit them with it all. That way, I feel that they get to see that my ileostomy does not make the slightest bit of difference to who I am. And yes, it is very nerve wracking telling a partner about it wondering what they’ll think about it. I’ve found that most guys don’t worry about it – I’ve only had one guy reject me because of it and I figure it was his loss anyway. Once again, I let them ask what questions they want and answer them as honestly as possible. They usually then tend to accept it as being a part of me. Whilst I have not yet met my life partner, I am confident that one day he will come along and sweep my off my feet……one day!!!!!!
I have also travelled a bit - Singapore, Hong Kong and Phuket in Thailand as well as most states in Australia. Most recently in February/March 2000, I travelled on my own to the USA and UK visiting ostomate internet friends (You can read my journal of this trip on this site.). I am a bad ostomate – I didn’t even think to find out what ostomy services there were in these other countries before setting off in case I might need them. Luckily, every trip has always gone smoothly and I’ve never had any problems. In fact an ostomy was definitely an advantage as in some cases the toilet facilities left a lot to be desired. At least I don’t have to sit down to “go” if I don’t want to. After my last plane trip, my mother told me that my grandmother had been reluctant for me to go – “but what if the plane gets hijacked – what will she do for supplies?” (sigh – this is something only a grandmother would think of – but I love her for being concerned about me). I eased her mind afterwards by telling her that I always carry a spare bag in my hand luggage so unless the plane was hijacked for more than a week, I would have been ok.
In conclusion, I have to say that whilst I would, of course, prefer not to have an ileostomy, I am greatful for every day of life my stoma has given back to me and do not regret it for one minute. No way would I like to go back to me pre-op days of constant bloody diarrhoea, pain and medication. Life isn’t always fair but we have to make the most of what we’ve got. I don't think that I am a particularly strong person (like some people say once they find out about my ostomy - after all, I didn't have much choice in the matter - it was either have it or end up getting colon cancer and die) In the long run though I feel that it has made me more tolerant of people because of what I have experienced in my life.
Some More Info About Me
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