by Sharry Budd
(from Ostomy Canada Magazine – Winter 2012: Volume 20, Number 2)
I was diagnosed with Crohn’s disease in September of 1989, after many doctors passed my pain and severe weight loss off as many things including nerves, anorexia, the flu as well as saying that my symptoms were just in my head. Finally after going to doctor after doctor I found one who actually listened to me and agreed there was definitely something wrong but what? She also had me go through all the same tests as the doctors before her had recommended. Blood tests, x-rays, barium follow throughs, enema x-rays and finally, at her wit’s end, she sent me to a gastroenterologist who ordered a scope of both ends. He was the one who discovered it wasn’t all in my head and that it was all in my intestine and bowel. When he told me I had Crohn’s Disease, I have to admit I had no clue what he was talking about. So I went to the encyclopedia to look it up. Since that day I have not stopped reading and learning about this disease.
My journey with my ostomy began when I had a routine procedure at Toronto East General Hospital to have a rectal dilatation done as I had this done twice before. Simply put, my rectum was so inflamed and narrowed that they inserted a series of flexible rods getting larger in size to basically force the rectum to open wider to allow passage of stool.
When I arrived for my appointment the nurse came rushing out and said, “Oh good you’re here, let’s go” and ushered me rather quickly into the room where I changed into a gown, and was then brought into the procedure room where I was hooked up to an IV and put to sleep. When I woke up about an hour later I was in pain. Not normal discomfort pain either, I mean I thought I had been stabbed or shot and no one noticed. That kind of pain! I mentioned this to the nurse and she got the doctor. When he came in he simply said in a rather cold manner, “You probably just have to go to the washroom.” And left the room. The nurse assisted in getting me up because having to use the washroom made sense seeing as the location where the procedure happened. Upon my feet hitting the floor, my entire body soon followed. I went down like a ton of bricks screaming in pain. THIS was not normal. After helping me back to the bed, the nurse ran to get the doctor again. He finally showed up and again in a rather cold manner said, “Hmmm maybe there is more to this, we should get an x-ray.” I was taken to the x-ray department and left sitting in the hall for a good three hours before anyone looked at me, or came to get me for the x-ray. By now the sedation had worn off and I was still in severe pain and could feel everything, I think I could even feel cells dying.
While all this was going on my then husband was wandering around the hospital asking where I was. He was informed that I had been released and had gone home. He was my escort so he wondered how was it that they would release me under sedation alone? Listed on my forms as a contact were my husband and his parents. He called his mom and she said no one had called from the hospital regarding me. Meanwhile I was literally on the verge of death because as it turned out, the doctor had perforated my bowel and ‘stuff’ was leaking into my body, the poison that is in one’s bowel, the stool and mucus and yuck.
Going into hour five then, my husband FINALLY found out there was a problem and I was being prepped for emergency surgery. Still no one had called his parents to inform them of any of this and they were listed as an emergency contact. Good to know your emergency contact doesn’t get contacted when there is an emergency. Maybe death is the only thing considered enough of an emergency to actually call the contacts listed.
I had finally been given more sedation as well as a good dose of morphine for the pain. A woman whom I’m going to guess was a nurse of some sort came in and proceeded to inform me I was going to be getting an ileostomy and she was there to ‘mark’ the spot for my stoma. All of which meant absolutely nothing to me, as I had no clue what an ileostomy was nor was I even half coherent to understand what was being said to me. She pulled out a small scalpel type instrument and put two small X’s where apparently my stoma was going to go (I was still unsure of what a stoma was). The rest was a total blur. I recall some man coming in to have me sign a release form and him rambling on about something. Now is when the thought “where is Dave?” came into play as HE should have been the one having this all explained to him, not some stoned patient ready to go for some surgery that still made no sense to me.
The next thing I remember was waking up and being attacked by birds. Yes, I was being attacked by the birds from the painting on the wall of my hospital room. I managed to get myself out of my bed and started heading down the hall to escape the birds. The nurse was in shock to see me standing at the desk and was even more shocked when I asked her to make them stop. I guess the PCA pump was really doing its job and I was seeing the birds flying around my room swooping down on me. Mental note, change to Demerol.
FINALLY I got to see my husband and ask him what happened. He found someone that knew what was going on and had everything explained to him and he in turn explained it to me. He was told about the perforation and how the poison was leaking into my body and the surgery was necessary in order to basically save my life or I would have died. An intern came in and told me about the ostomy and said it would only be for three months while my bowel healed from the perforation. Then they would do a reversal and other than a small scar I would be as good as new.
Alright, so when could I go home? I had a baby who needed his mommy at home. I was told I would be in for about three or four days then I could go home. I could do that. My son’s first birthday was coming up on March 11th and I had to do something special for him. I didn’t have time to be in a hospital.
Later that night I got the nerve up to actually LOOK at this new appendage of mine. I lifted up the blanket and my gown and looked in awe. Then I broke down and cried which caused me more pain. C’mon PCA pump kick in!! The ET nurse came to see me the next morning and wheeled in a TV and VCR and a video on ostomies, how they work, what they do, how to change, drain and care for the appliance. THAT was the extent of my ‘training’. No hands on, no one sitting with me talking about it, no one to answer my questions. After having a friend come in to help me shower and freshen up because none of the nurses would assist me, I seemed to have a new outlook on my situation. They say there is always someone worse off than you and as I lay in my bed feeling sorry for myself, I was shown someone worse off than myself. Another lady was placed in my room suffering from Sickle-cell anemia. After introducing ourselves, we got to talking and she explained what Sickle-cell anemia was and I took this as a sign from a higher power that life could be worse. From then on I started thinking positively and refused to allow this ostomy to beat me.
I was released a week after my surgery and although I was excited to be going home I just didn’t feel right. I did notice how food moved through my body now and noted that certain things didn’t break down like other foods. I had put strawberry jam on my toast that morning as I had before and was waiting for the seeds from the strawberries to come through but they didn’t. I was feeling discomfort in my stomach area but both the doctor and nurses just chalked it up to my body readjusting to digesting food again, so I left it at that, even though I did tell the nurse I didn’t feel good about going home. Regardless of how I felt I was released anyway and went back up north to my house near Lindsay, Ontario. Within 24 hours of being released from the hospital the cramps and severe pain started, as did the vomiting. With all the convulsing from throwing up my incision split open and I started to bleed all over the floor. My husband called 911 and an ambulance was at my door within minutes. I had to be taken to the nearest hospital which was Ross Memorial in Lindsay as I was post op they decided to transfer me back to Toronto East General so the doctors that took care of me there could fix me. That was my first of oh so many obstructions, as well as my second emergency operation as my bowel sutures had also come open.
I finally was released again March 8th, two days before my son’s first birthday. As much as I wanted to throw him a big celebration, I just couldn’t. This broke my heart. However, my inlaws stepped up and made reservations at Swiss Chalet and the entire family went out to a big dinner. Not exactly what I had envisioned for my son’s first birthday but it would have to do.
As time went on and I learned more about Crohn’s and ostomies, I became more and more comfortable with my addition. I even named it ‘Rose Budd’ because that is what my stoma looks like, a small rose bud. I finally met another person with an ostomy whom I met through a magazine Pen Pals ad. Her name was Janet Paquet and she was in the same boat as I was. After talking to her and even going to see her in Hamilton and her coming to my house with her family, the acceptance wasn’t questioned anymore. THIS is who I am….I am still the same person I was before I had the ostomy.
Fast forward to 1999…I found out I was expecting again. Of course I was concerned about getting all fat and the effect it would have on my ostomy. Well needless to say it had zero effect on my ostomy; however, it did have an effect on my intestines. Seems I was getting obstruction after obstruction as the baby grew bigger and bigger. At six months pregnant, I was air lifted to Kingston General Hospital (KGH) as they were the closest hospital to me with the equipment to handle a high risk delivery should anything happen to me or the baby. KGH, the doctors decided I had suffered enough and the baby was healthy enough and growing enough so they could induce me three weeks early. January 8th 2000, I delivered my second son Michael.
October 2005, I was having bad pains again and a great amount of obstructions. For the most part I could deal with them and fix them at home with warm fluids and relaxation, but it got to the point I was throwing up green bile and unable to walk or function. I needed to have another operation to get rid of the strictures. I was admitted to St. Mike’s in Toronto for the surgery. Other than tenderness I felt great; the pain of the strictures was gone! I was feeling very positive about this operation, right up to the fourth day after surgery when a nurse came in to tell me she was there to remove my staples. Now I’m by far not a surgeon but I had to ask her “Under whose orders? it’s only been four days.” She said under my doctor’s orders. She began to remove the staples only to have my wound burst wide open, exposing my insides to the air. Needless to say I started to panic and freak out; it’s not all that great to see your OWN insides looking back at you. The nurse called for some help and I needed sedation to calm down. Since my wound had been exposed to regular air opposed to the sterile air in an operating room, they could not simply just sew my wound back up. I had to have it packed so it could heal from the inside out. I was released from hospital with homecare to attend to my wound dressing changes daily. I actually made a good friend with the nurse that came to my house. She allowed my two boys to come watch what she was doing while changing my dressing and explained to them in terms they could understand what had happened and how it was going to be fixed. Eleven weeks later my wound was healed up and I had no more need for visits from Nurse Kim as my children nicknamed her. However although my wound was healed it left me with quite a large, wide scar. This didn’t help my emotional state or my already low self esteem at all. I felt I was even uglier now, but life went on.
I hadn’t had any major problems with my ostomy or Crohn’s until 2007 when I started to get pain in my stoma area, which ultimately turned out to be a hernia that needed to be repaired. I went into St. Mike’s Hospital in Toronto and discussed the operation as well as removal of my colon because of the high risk for colon cancer in my family. I decided that since I wasn’t ever going to be using it again why keep it and risk cancer? November 2007 I had the hernia repair and colon removal operations, which were done at the same time. This time when I woke up from the operation, I felt no pain at all. When the nurse came in to check my wound, I noticed the surgeon didn’t use one staple but instead used Steri Strips to close my incision. I thought for sure I was going to burst open again but I didn’t. When all the strips came off after just over a week, my scar was so small and thin. The surgeon had cut away the scar tissue from the last operation that left me with a huge scar and made me look normal again. I could not have been happier. This gave me some of my self esteem back and even got me into a two piece bathing suit the following summer.
Life was going great for me after that operation. I was enjoying getting out and doing stuff again. I even went back to work with a friend for what was supposed to be for two weeks in August of 2008. Working at a Training Centre in Toronto, I was putting together Class Manuals for the members and students to use for the upcoming intake. When those two weeks were over I was told to just keep coming in and doing work. Which I did. About three months later I was offered a full time job in the education department of the Training centre, which I took. I had purpose again and felt needed.
In February of 2011, I began feeling sick and had severe weight loss again. I was vomiting up everything I ate or drank and was very weak. Test and x-rays showed severe strictures in my small intestine as well as severe malnutrition. This needed to be addressed. My regular G.I. had referred me to Dr. Greenberg at Mt. Sinai in Toronto. Finally in May of 2011 I was admitted to Mt. Sinai for TPN. I was only to be there for a week in order to get the TPN line in and functioning, then go home for a month to build up strength and put on some weight in order to have the next operation. Change of plans. They decided it would be best if I just stayed in hospital and rode it out waiting for the operation. After a lot of phone calls to arrange care for my two boys now aged 16 and 12, I was scheduled for surgery again on June 9th. All went great and I can’t praise the pain management team enough at this hospital. I felt NOTHING. This by far was my BEST hospital vacation ever! I say vacation as it helps me to accept I’m in hospital. I try to keep a positive outlook on hospital stays by thinking I don’t have to clean, cook meals or do laundry.
I was in hospital for eight weeks. Summer was shot. However, I did get stronger and gained a bit of weight being on TPN while in there. I healed wonderfully and started to get back to caring for myself and functioning again. I was given day passes when I was unhooked from the TPN and had outings with my kids a few days a week. I was so happy on that first day being allowed out because my youngest son and my by now ex-husband came to see me on their way down to Harbourfront for a Beyblade competition. Just before they were going to leave, the nurse came in to say I was allowed day passes. My son Michael asked if I wanted to come with them. Since my ex husband was there I felt that if anything should happen to me he would know what to do being trained in First Aid and having gone through all my other complications with me before: so why not? That was one of the most wonderful days of my life. I felt great and enjoyed being out and able to spend time with my son pain free for a change.
I was able to go home July 14, 2011 and haven’t looked back or had any major issues since. I did however get not one but two more hernias that haven’t really caused me too many problems and are being looked after at the present time. I also started taking Remicade infusions in March of 2012, which have made a huge difference in the control of my Crohn’s. I started back to work in July of 2012 in a different department in a slightly easier job in order to accommodate my hernias so I do not cause any more damage. I could not be in a happier place than I am now.
I have had a great support system through my friends and family throughout this entire illness and have made some truly wonderful friends who are also in the same boat as I am, having also gone through severe illnesses and operations.
In July of 2012, I joined Ostomy Toronto after some coaxing from a few online friends and since doing that I have again met even more people with ostomies. In August, I attended my first UOAC Conference here in Toronto. There I met many of the people who I have spoken to online and who have helped me through many of my operations and ups and downs of my journey with not only Crohn’s but my ostomy as well. Over the four days of the conference, I did Visitor training so that I could go visit with and meet others that have had or about to have an ostomy operation, to help them understand that it really isn’t the end of the world getting an ostomy.
I am looking forward to working with Toronto Ostomy as well as the UOAC in future projects, assisting others with ostomies and future events. My self esteem has reached a new plateau and I once again am alive and ready to take on the world!
Yesterday, today and tomorrow: as I reflect on my life.
February 13th marked my 15-year anniversary of my relationship with ‘Rose Budd’. I always get mixed emotions over this day. I try to look at this in both lights, of course the brightest light is that I’m alive today. I remember waking up and seeing this pouch stuck to my abdomen for the first time. I was stunned. I had NEVER before seen nor heard of such a thing. Needless to say when I was told it would only be for three months I felt I was strong enough to make it through that. Then when the doctor that caused this in the first place came in and informed me it was permanent and whoever told me it was only for three months had misinformed me, I spun into a deep depression. I was so distraught I was ready to take my own life over this. I didn’t realize at that time that an ostomy was not so bad. I blocked everyone in my life out and was only thinking of ME and how was I going to live like this? I saved up all my hospital issued medications and even had my personal ones ready so I could take them all that night. I was finished. That was until my then husband brought my son to see me. Right then and there all feelings of woe left me. I NEEDED to go on because my son needed his mommy. He was about to turn one in a month’s time. After that when I wanted visitors, my friends came in to see me. They accepted my new addition with ease. They didn’t run away from me, they didn’t laugh; they embraced me and talked to me. I then began to see things in the second light…my NEW life. I am truly different and quite unique. I still eat, sleep and poop, just a little differently than others. I can still do everything I did before, even better now that I don’t have to spend 90% of my time in the bathroom clutching onto a pillow in agonizing pain. I can go out and ENJOY my life and both my kids. I don’t need to only go on short road trips now; I don’t need to know the exact location of every bathroom on the route I take.
I have hit many bumps on this road but I have also learned far more than I ever expected to learn. I have met the most wonderful people that ‘SURPRISE !’ have also been in my shoes. I’m NOT the ONLY person having to deal with this. I have a great support group and I can EAT again, without having to be on steroids. I may have some weight issues but as long as I can stay at or over 110lbs, I’m good.
There have been major downfalls but I blame myself for them. My now ex husband and I splitting up for one. I felt he deserved better as I was damaged goods and he deserved someone with ALL her parts. He and I split up in 2002 but no matter how hard I try to ditch him, he has always stayed by my side through set backs, flares and surgeries. He is the first one to cuss a doctor out for me and the first one to offer to take me to the ER. He knows when I’m in hospital and call him and say get here he gets there and is raising hell as he is walking down the hall. So no matter how hard I try, I guess I’m stuck with him.
My friends that I thought would run screaming in the other direction have stood by me and helped and supported me. They know signs and symptoms of what is going on with me before I even know. They have also made changes to schedules to accommodate me and Rose. When we go out, they make sure if need be, we are close to the bathroom, keep spare water in their cars, even keep a change kit at their houses for me, just in case. They accept and we laugh over my noises. We joke about how if we want a theatre to ourselves I could always just let out some gas and empty the place out.
So in the end of these ramblings, I just want to say to those who are new to an ostomy or those who are thinking about it: your life is not OVER, it is really just BEGINNING, for it’s a NEW LIFE you are given. I’m doing my best to embrace this change on a positive note. There will be good days and bad days, more good than bad and it is what YOU make of it.
Stop feeling Woe is me…it should be WHOA! It’s ME!!! Attack each day, don’t just live it.
Sharry is the Secretary and Fundraising coordinator for Ostomy Toronto.
“Sharry’s Journey” first appeared in the Winter 2012 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.