by Deborah Clements
from Ostomy Canada Magazine (Winter 2013 Volume 21, Number 2)
“I don’t have to tell you how I felt when I first met my ileostomy. Life was out of my control. But I gave her the name of Joyce… “
When Joy, my stoma nurse, asked if I’d consider telling my story, I thought it would be good for me to reflect on what was a very big time in my life. So I gladly said yes. Speaking of me – at various points in my past I was a happily digesting and pooping organism. Things changed in 2009.
My journey to be writing this story started because I had Ulcerative Colitis (UC). Ulcerative Colitis is an autoimmune disease where the body’s immune system attacks the large intestine. I had three episodes of UC – the first when I was 18, the other two being when I was 32, and 39 and pregnant and trying to manage three small children. Each episode would last for one to two years. It was not a pretty sight. Initially poop would jet propel out one end while I threw up out the other. I would not know which end to put over the toilet. With time the vomiting would stop, and I was left with a bloody, frequent diarrhea over which I had little control. I was hospitalized twice with the colitis. I got to know my gastroenterologist well over these years – I affectionately refer to him as my Poop Doctor. Despite the fact that my countenance would plummet when the colitis came out of remission, I would very quickly forget that I had UC when it was in remission. My only reminder would be that I was required to have a colonoscopy every two years. Even when I had no symptoms, there could be some mild irritation in the bowel. UC predisposes one to cancer. The constant irritation in the bowel is a breeding ground for cancer. I knew this in theory but never once did I think I’d get cancer. Cancer happens to other people – not me. Then I went 14 years after my last episode of UC with no pooping issues.
In the spring of 2008 I had one of my regular colonoscopies and all looked the same as usual. Four months later I started having what felt like the flu – one day each month I’d be throwing up and confined in bed. In January 2009, I started paying closer attention, and realized I had waves of pain in the upper left of my abdomen. I went to my poop doctor who sent me for an ultrasound, then a gastroscopy, then a CAT scan. These tests showed a thickening in my lower right colon, which was thought to be scar tissue from the UC, but they showed nothing where I was feeling the pain. The pains were becoming more frequent and more painful, often leaving me in tears. In July 2009 my poop doctor did another colonoscopy even though I had just had one a year ago. He noticed ‘bumps’ in my lower right colon (where the thickening was). We were camping when I phoned to get the results of the colonoscopy biopsies. I was told they were Adenoma polyps with highgrade dysplasia. They were pre-cancerous polyps, and that I’d have to have my large intestine removed. I said, “The whole large intestine? – I’ll give you 8 inches”. My poop doctor said, “no, the whole thing”. I said how about 12 inches? He explained that since I had had colitis the dysplasia could happen anywhere in my large intestine, so the whole thing had to come out. I simply could not believe it. I again asked my poop doctor if he thought it was cancerous, and he said no – as he had extensively biopsied, and they were all pre-cancerous. He also said he’d only seen 10 cases like me in 40 years. I wasn’t so sure I wanted to be so ‘special’!
The beginning of September (now one year after having my first ‘flu’), I met my surgeon, Dr Feinburg at North York General Hospital. He explained two scenarios to me: One – if there was no cancer; he would remove the large intestine and make a J-pouch (a small storage bag made out of some of the small intestine) with a temporary ileostomy while the J-pouch healed. Two – if there was cancer; he would remove the large intestine and give me an ileostomy. A J-pouch would be made two years later after I had fully recovered from chemo. Obviously I was not in the ‘cancer’ category as all the biopsies were pre-cancerous! I learned that the pain I’d been experiencing was caused by food blockages in the colon due to the polyps. The fact that I was feeling the pain in a different spot is something known as referred pain. Despite going on a pureed diet the month before surgery, I continued to get blockages. Surgery was scheduled for Oct. 1st, 2009. While waiting outside the surgery room, my surgeon came and spoke to me. I told him I was having a lot of blockages while on a pureed diet. Based on this, the surgeon said he thought I had CANCER. This was the first time I was told that. Yet I felt a strange calm – which was probably shock! I asked the surgeon to let me know as soon as he could if it was cancerous or not. When I came through in the recovery room, he told me it was cancerous. I cried and cried and cried. Up to that point in my life, I was not a cry-y type of person.
I don’t have to tell you how I felt when I first met my ileostomy. Life was out of my control. But I gave her the name of Joyce – a perfect name for a bag lady (Apologies to anyone with the name Joyce).
So here were Joyce and I – we had six weeks to get used to each other before chemo would start. And she demanded my full attention. Joyce would leak quite often during our relationship. And it was Joy, my stoma nurse, who came to my rescue! Joyce and I were on a steep learning curve that seemed never to level off. I remember sailing on my brother’s boat the following summer after chemo had finished. We were sailing close haul on a very windy, wavy day, which means the boat was really leaning over, and bouncing a lot, when I noticed that there was a hot wet feeling where there should not be a hot wet feeling. Sure enough Joyce had leaked. To change Joyce, I went into the cabin, sat on the slanted, rocking floor with my feet braced against the lower bunk, with my supplies sliding or bouncing away from me. As we were sailing for a few days, I ended up washing my poopy clothes in my brother’s buckets for washing the deck, and hanging them on his lifelines to dry – which did not impress my brother.
The leakages were caused by various factors including my needing convexity, and becoming allergic to parts of the appliance. Although the leakages continued during Joyce’s and my entire relationship, I did grow to appreciate Joyce. I became quite attached to her!!
I met my oncologist a couple of weeks after my surgery. It turns out I had stage III b cancer which meant it had traveled beyond the initial site. Three of the 39 lymph nodes tested had cancer in them. It was a fast growing cancer, which accounted for my initial pains starting four months after a colonoscopy, and accounted for it going from precancerous in July to cancerous by Oct. With the chemo treatment, I had an 81% chance of being cancer free in five years (compared to only 62% chance of being alive and cancer free in five years if I didn’t do the chemo). So I opted for the chemo! I was set up to start Folfox chemotherapy six weeks after surgery. Folfox is comprised of three different drugs. One of them is called 5FU for short and I think the FU part is appropriately named!
Day 1 – I was given two chemo drugs at NYGH, and then sent home with a pump pumping the 3rd one into me for 22 hours. Day 2 – Repeat of day 1 with two chemo drugs given to me at NYGH, then sent home with a pump pumping 3rd one into me for 22 hours. Day 3 – a home care nurse came to the house when the 22 hours were up and disconnected me from the pump. This cycle was repeated every other week for six months totaling 12 rounds of chemotherapy.
Normally these drugs are given through a PICC line that is a line inserted (for the duration of the chemo) into a vessel in one’s arm. During orientation I was told that this PICC line would become my new best friend (as the line coming out of one’s arm takes a lot of care). I felt I could not handle another new best friend, as Joyce was already my new best friend. So I requested a port-a-cath instead. It is a little vessel placed under the skin that is connected to the vena cava above the heart. Because it was under the skin, I didn’t have to look after it. It was through this port-a-cath that I was given the chemo drugs.
I mentioned how normally I was not a cry-y person. Well, I became quite good at crying after my first surgery and my first day of chemo was no different. I learned way too much during my first round of chemo. One of the main things I learned was about all the coordinating that has to go on, such as: Oncologist/nurses in the chemo unit/home care at NYGH/CCAC in Durham/Nursing agency in Durham/ Pharmacy which delivered one of my chemo drugs to my home/Uxbridge Cottage Hospital where my blood work was done.
During my first chemo, not all of this communication went well, and I ended up having to be hooked up to the chemo for four days instead of three. From then on I made phone calls to be sure all the messages/results were passed along properly! I also learned how to turn on and off my own pump so I wouldn’t have to wait for a nurse to come to the house. After my first round of chemo, I started to feel side effects. Although the side effects would get a bit better before the next treatment two weeks later, they would get worse with each chemo round as chemo is cumulative.
One of the drugs caused nerve damage resulting in pain in my hands and feet if I got at all cool. So I wore mitts and thermal socks 24/7. I also got the pain around my eyes, so I wore my skiing goggles if I went outside when it was cold. And all my food had to be warm or my throat would close up on me. Once my husband accidentally served me boiled fruit cocktail as he left it in the microwave too long. Our house temperature was put up so high that my husband sweated in a t-shirt in the middle of winter while I was in layers and layers of polar fleece.
I felt nauseous. I got to the point where I would’ve been perfectly happy (with happy being a relative term here) if I never ate again.
My energy was low. Eventually I did not have the energy to have a shower. I would walk bent over as it took too much energy to be upright. And I spent most of the day lying on the couch.
Despite being exhausted, I didn’t sleep well at night. Turns out they gave me a steroid on day one of chemo (I assume this was to give me some energy so I was willing to come back to the hospital the second day). But this steroid would keep me up all night. So I learned to take a sleeping pill.
Joyce was affected by the chemo as well. Her output became very liquidy which resulted in Joyce leaking more often. It also depleted my much-needed electrolytes. I took more Imodium but I am not sure it did much good.
My third chemo treatment was a few days before Christmas. I decorated Joyce with a cute little red bow so she could be part of the Christmas spirit. And I’d show off Joyce’s Christmas attire to anyone brave enough to look. I even had a gift for her under the tree (a bottle of deodorizer). Joyce felt a bit ripped off during Christmas dinner, as I was only able to give her a bit of mashed potatoes, two spoons of squash and a small bite of turkey. On New Year’s Day I woke up with a gift from Joyce (poop) all over me!!! I wondered if that was Joyce’s only way of saying Happy New Year?
One thing that started at round #3 of chemo was that my vision would black out for a minute or so if I moved my head. I was sent to an ophthalmologist. They could not find a reason for the blacking out vision. But the further I got from my chemo treatment days, the less it happened.
I was supposed to drink 12 glasses of liquid a day but I had a hard time doing this. It turned out my throat muscles were not working well, and it takes more muscles to swallow water than to swallow solid food.
I started to dry out everywhere. I had to put moisturizer in my nose, on my face, body, and lips. My husband said I had more lubes than his car does.
I was told that I would lose my hair. Initially my hair stopped growing then it started thinning out drastically, even filling the drain when I washed it. I lost my eyebrows and eyelashes, but I never totally lost the hair on my head. It became very thin with bald spots.
After each round of chemo, I would email my family and friends with an update. It was as therapeutic for me to put into words what I was going through, as it was informative for them. In my email after the third round of chemo I said: “Sometimes I feel that I have two full plates, one being Joyce (learning what I can eat etc.), and the other being the chemo and cancer. The advantage is that sometimes one of the full plates takes your mind off the other full plate. It is when they both demand attention at once that it can be difficult.”
What brought me joy during this time was reading. In my ‘other life’, I would seldom have had time, nor given myself permission, to sit down and read a book during the day. During chemo, reading helped greatly to pass the time, and take my mind off of how yucky I felt. Initially I read big books such as “The Girl with the Dragon Tattoo” series. Eventually my mind found the “Twilight series” –a teenager vampire romance, more at my foggy brain level.
Part way through chemo, my son said that anyone who has cancer and goes through chemo should get an epiphany (a revelation). I told him that I was mostly in coping mode. But that I’d be open to an epiphany! I was readying a book by Richard Rohr (a Franciscan Monk). He said that it is usually through our times of suffering that we grow the most as a person. When life is out of control health wise, relationship wise, material wise, grief, etc. that this is the time that we grow and when we become more fully human. On the other hand, author Carol Shields says, “Deep down we are all shallow”. There is truth there too (and it is easier to understand!)
As chemo went on, I ended up with severe intestinal pains. The chemo drugs caused the intestines to go into spasms. I took Percocet to deal with the pain. During these times the output was pure liquid, and Joyce made exceptionally loud noises. Sometimes the pains would be accompanied by vomiting. One time my husband tucked me in on our new couch with three warm quilts. I suddenly had the pain, and then knew I was going to throw up. The only thing I could think of was “not on my new couch” but I was so well tucked in that I had to struggle to get the quilts off of me so I could run to the kitchen sink to be sick!! I then had buckets strategically placed around the house.
At the end of round eight, I had a new experience. I had a small rectum left attached to my anus, and small bits of poop started to come out of it! At first I wondered if I was healed! It even smelled like normal poop (not the stuff that comes out of Joyce). It would happen several times during the day and night, and was accompanied by a very intense bearing down feeling. One time when I was changing my ileostomy (Joyce didn’t have the bag on her) I had to the urge to go so I sat on the toilet, and poop came out of the anus as well as Joyce – two openings at once! Now if that doesn’t take talent, what does?
As you can imagine, I would have many depressing, tear filled moments. But in my chemo email at the end of round #9 I wrote: “I find chemo to be a life changing event. I went from being an active person to a person of my nest of quilts on my couch! I know this will change. I only have three more chemo treatments to go. But I have also learned more of God’s grace, goodness and hope. Grace because how else does one cope with pooping out of two places at once? Goodness because of how friends bring joy to my day in many different ways. And hope because that is what keeps one going. I have had some pretty sad moments and that is ok and necessary but ‘hope’ eventually brings me through.”
My world got pretty small and after round 10 of chemo, I was a basket case. I had no energy. I would crawl up the stairs on all fours, resting half way up. I had to ask homecare to change Joyce. I was too exhausted to get dressed so I stayed in my p.j’s all day, even when I had to go out to do blood work. Some nights I wouldn’t even brush my teeth. I was dehydrated because of the effects of chemo on the small intestine. I couldn’t eat, and anything I drank would reappear in Joyce after only a few minutes in the same condition as it went in. I phoned the chemo clinic and explained how I was feeling. I was informed that they do not decrease chemo for fatigue. The night before round #11 of chemo, I actually wanted to die. I did not see how I could carry on like this for another month.
The next day I needed a wheel chair to get to the chemo clinic. When I got there I asked for a bed because I couldn’t sit up. The receptionist said I’d have to wait, so I sat in a chair and slumped over the metal arm into the chair beside me. Suddenly a bed was made ready for me! I was weighed, extra blood tests were done, and finally the oncologist came in and said, “This is the end of your chemo, we stop here”. I couldn’t believe it! The oncologist cancelled my last two treatments. He said I had hit a brick wall. The benefits of more chemo were outweighed by the risk of complications. It took awhile for the fact that chemo had stopped to sink in. Waking up that night with no chemo pump beside me in bed was amazing. It also took a while to recover. I was on intravenous hydration for two weeks. I also had to give myself a daily needle that would slow down the movement through my intestines. But each day I felt better. I was so excited. Six weeks later I had a ‘Chemo is over Celebration’ with happy face balloons all over the place. Life was good once again. I was and am so grateful to be alive and happy and healthy.
In my last chemo email I reflected on what I felt I’d learned at that point through the chemo experience. I learned: although chemo is a life giving drug, it is nasty to experience/the art of being useless/the art of learning to receive/just because I am horizontal on a couch, the world still goes on.
In September (five months after chemo finished) I saw my surgeon, and he surprised me by saying that I had recovered so well that he could do the surgery to form the J-pouch that fall (a year earlier than expected). During the previous year, my thoughts fluctuated about whether to live with Joyce for the rest of my life, or try for an internal J-pouch. But with Joyce falling off me so often and developing allergic reactions to the appliance adhesives, I decided to go for an internal pouch. So the date was set for Nov 19, 2010. Apparently this surgery is more major than the first one where they take out the large intestine but that is from the surgeon’s point of view. From my point of view, I wasn’t waking up to a stoma that I’d never seen before, or the news that I had cancer, so it was a piece of cake, relatively speaking. To give my new J-pouch time to heal, I had a loop ileostomy. I called this ileostomy ‘Joyce’ as well.
Once again I was pooping out of two places at once, as some food would make it into the J-pouch (due to the loop ileostomy). I became a bit dehydrated after the surgery, but the intestine soon got down to business, and I was back to normal. As an aside, I did end up picking up a hospital bug during this last surgery. It is called MRSA, a type of bug resistant to antibiotics. The advantage
of having this is that it guarantees you a private room in the hospital! Recently I have been tested, and the MRSA is now gone.
Three months after the J-pouch surgery, tests were done to prepare for what they call the ileostomy takedown where they took away my ileostomy, and connected me to the J-pouch. I had a CT scan where they injected dye in the anus, and which went through the J-pouch, up the small intestine, and filled my ileostomy bag! All was good and ready for the next surgery. So March 1st 2011, I had the ileostomy takedown, which is a relatively small surgery. The area around the stoma was opened up; the two ends of the loop ileostomy were attached to each other, and then stuffed back inside me.
I was now pooping out the anus! And ONLY out the anus. I love pooping out the anus. Those strange creatures with large intestines take it for granted that they poop out the anus. They don’t realize what a marvel pooping can be!
To celebrate, I had a retirement party for Joyce. I decorated with toilet paper, toilet bowl brushes (new ones), and a potty with balloons attached to it. I asked that the guests bring a “Dear Joyce” letter to be read from the throne during this poignant, auspicious occasion. I’d like to read you my letter to Joyce. I actually did feel a profound gratitude to Joyce for her part in saving my life.
Wow! What a journey we have been on together. I remember when I first met you. I must confess I did not exactly like you initially. As a matter of fact, you sometimes made me cry. Here you were suddenly thrust upon me. I preferred things the way they were before I met you. You demanded a lot of attention, and took a lot of my time. You were rather messy and smelly at times too. I did not know how to look after you properly. But as time passed, I got used to you. You kind of grew on me. Maybe I could say I felt attached to you. I got to know your little noises, when you needed attention, when you needed a new outfit. I learned how to address your and my needs so that we had a truce. Eventually I realized how much I depended on you. You were a constant companion – always by my side (well – mostly by my side!). You came everywhere with me. You faithfully did your business. I realized I could not have coped without you. You were instrumental in giving me a new lease on life. I wouldn’t be here, today, without you. As in all good relationships, we did have our moments of grief. I remember when you would lose your grip on me – sort of go your own way for a short while. You’d act up and demand attention in a very unseemly, ungraceful, inconsiderate, impertinent, undignified, poopy way. I learned to calm you down, calm myself down, address the ‘issues’ at hand, and regain the normal ‘flow’ of things. We learned to cope together.
I learned a lot from you Joyce. You taught me the importance of humour in coping with life’s difficulties. You taught me that having decorum wasn’t all it was cracked up to be. You took me off my throne of dignity, and bodily control, and put me on a more practical down to earth ‘throne’. Often you’d have my best interests in mind. You would manage to take my mind off of unpleasant events, such as chemo, by not so gently, nor subtly, reminding me that you were there. I had the opportunity to know you, Joyce, for one and a half years. Then you announced you were going to retire. I was of mixed emotions when I learned this. As the tune from My Fair lady goes: “I’d grown accustomed to your—face, accustomed to your looks, accustomed to your voice…Your joys, your woes, your highs, your lows, are second nature to me now”. How would I cope with out you? We were each to move on in our own fashion. I eventually drew comfort from knowing that although you were going to retire from being my constant companion, always by my side (well, mostly always), you were not truly leaving me, as you were merely going onto a less visible job in ‘internal affairs’. You’d still be with me, doing what you do best!
Thank you Joyce for being my ileostomy.
Your loving friend, Deborah
My new internal pouch has also been a journey for me. Initially going to the bathroom was a bit painful, and there was blood in the stool but with time the pain and blood went away. When I first came home from the hospital, I’d run to the bathroom as soon as I felt anything at all happening down there. Gradually I had to train my pouch that I was the boss. When the urge came to madly dash to the bathroom, I’d make myself sit in a chair, keep calm, and try to hold on for a few minutes before madly dashing to the bathroom. Now I can hold it for long periods of time. When I came home from the hospital I went about 20 times a day, perhaps seven of them at night. Over the months that slowed down to 6/7 a day, with one or two of those being at night. Some J-pouchers go only four to six times in a day. Unfortunately I was told I did not have the best functioning pouch. When I am not doing well, it could be 10 times a day. But last May it was discovered that I was struggling with pouchitis, an infection in the J-pouch, which accounts for my higher frequencies. When I have pouchitis, there can be blood in the stool, continual urges to go which I am continually resisting, my frequency is over eight times a day and I have leakages at night. A pad in my undies catches the nighttime leakages, but I’d use a diaper if I needed extra security. I would get a very poor night’s sleep because of continually waking up to clamp down on the urges to go. Pouchitis is treated with two strong antibiotics. As soon as I take the antibiotics, my frequency is down to 4/5 times a day, with no urges, no blood and no leakages (it was like I’d died and gone to heaven). When I finished the antibiotics, I took probiotics (specifically VSL#3) to try and keep the pouchitis at bay, and average 6/7 poops a day. I usually only go four weeks until the infection is back however, and then I cycle back onto the antibiotics. Lately I have tried a gluten free diet (as gluten is inflammatory), and I have not been infected since November. Diet affects J-pouch output in the same way as it affects the ileostomy. Spicy, gaseous or fibrous foods increase the output, while rice, bananas and pasta decrease the frequency. I can also take Imodium to decrease pouch functioning but lately I’m wondering if Imodium has any effect. One can also take Metamucil to thicken up a watery stool. When I came home from the hospital, I had a very sore, itchy bum from going so often. I used to soak my bum in Epsom salts but I don’t need to now. I use Zincofax (or Penaten cream; stuff one uses on babies) on my bum to protect the area from irritation. And I wear a pad that serves the dual purpose of keeping the Zincofax off my undies, and of collecting anything else that could squeak out. Passing gas is an interesting issue. When I came home from the hospital, I experimented to see if I could pass gas (It is best to experiment in the shower as I was met with some quite explosive messy results). Turns out I cannot pass gas while standing without pooping at the same time. I think the poop falls to the bottom of the pouch blocking the exit for the gas. If I am sitting down I can pass gas sometimes but if I am lying down I can pass gas even if there is poop in my pouch. I think this is because the poop is not blocking the exit, so gas can get out. So in the wee hours of the morning, when an empty intestine is more prone to make gas, I can lie in bed and let it rip. One other thing, I do have one cm of my rectum left to which the J-pouch is attached. This bit of rectum has to be monitored for the next 30 years, as it is part of the colon so it could develop cancer.
So I am still on a journey. For another two years I continue to be monitored every six months for cancer. In the future I hope to keep the pouchitis more in control but if it comes back, I have antibiotics. How is my life affected by my new system? Well, I do most of what I used to do. I may not go winter camping (who wants to be out squatting at night beside the tent in the bleak mid winter)? And I may wear extra protection while I play my bagpipes in a long parade. It can be rather difficult to blow one’s guts out one end while not blowing one’s guts out the other. What hope would one have if there were a leakage while wearing a kilt! However, if I am hiking for hours and hours, I merely leave my little deposits in bushes along the way.
I have learned a lot during all of this, starting from that summer when I was told my intestine had to come out. I learned to be nicer to myself. Maybe I’ll sit down and read during the day! I learned to say NO when asked to do things I did not want to do. The world turned just fine without me when I was in chemo, so it will continue to spin if I say NO to doing something. It is easier now to not sweat the small stuff but only because I have a better understanding now of what the small stuff is!
My journey continues….. Thank you for reading my story.
Deborah is a member of the Oshawa and District Ostomy Association.
“My Best Friend Joyce” first appeared in the Winter 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada magazing by joining Ostomy Canada Society. Find out more here.