My name is Chantal Bellehumeur. I was diagnosed with a digestive illness called Ulcerative Colitis back in October of 2009, when I was 28 years old. At the time, I had never even heard of the illness, let a lone that it was chronic. I realized over the years that not many people were aware of its existence or how it affects a person living with it either.
After many trips to the ER as well as a couple of hospitalizations and several medication trials, I finally found a drug that kept my symptoms under control for more than just a few months. Thanks to my regular Remicade infusions, I have been in remission for about three years. However, I have recently run into some complications and wanted to share my story.
I spent a whole week coughing like crazy at the office, which was as annoying for my co-workers as it was for me. One of them went to the store on his lunch break to buy me some cough drops. Unfortunately, that's not what I needed.
I was coughing up mucus and eventually blood. At first I wasn't worried about the blood because of the violent way I was coughing; I figured I must have just irritated my throat. After the third day of seeing blood, my worried husband insisted I go to the ER.
Jeff went with me to the new super hospital in Montreal on the morning of Friday, June 17, and there weren't that many people waiting in the emergency waiting room when we arrived. After putting on the required paper mask over my mouth and nose, I took a number and barely had time to sit down before it was called. I talked to the triage nurse about my problem and confirmed that I did not have a fever or extreme pain; just that I was exhausted from the lack of sleep and that I wanted to make sure the blood was not a sign of anything serious. She took my vital signs and sent me back to the waiting room.
A few minutes later, I registered and was told to go wait in an isolation room. My husband and I were the only ones in there and we got comfortable on one of the navy blue padded seats so that I could get some well needed rest.
Unfortunately, every time the intercom turned on to announce a patient's name and room number it would startle me because it was incredibly loud. I swear if I had been much older — I just turned 35 at the end of June — one of the announcements might have given me a heart attack.
Five hours went by and the only person who had come to see me during that long wait was a nurse. She only came to ask me if my condition had gotten worst. I told her I was still coughing up mucus and blood. Luckily, there was a private bathroom in the isolation room I could make use of.
A few more hours went by...
I was starting to go crazy, staring at the lime green wall in front of me. The rest of the room was empty of any decorations, reading material, or artwork. It only had rows of navy blue benches as well as a small black table in the corner with a phone plus a tall garbage can in the other corner. I joked that I was in the VIP room simply to keep myself entertained.
There was a plug high up on the wall and I wondered if it was meant for a television. There was a flat screen in the main waiting room. My husband and I started analyzing all the other little technical gadgets in the room out of boredom. Although we had each other, we had still become a bit impatient.
At one point, I turned around to peek through the glass window behind my seat and saw that everyone who had been waiting when my husband and I arrived were gone.
My husband eventually went to inquire about the wait. He found out that that there was only one doctor working in the ER that day and that another had been called in to help out.
After our eighth hour of waiting, Jeff and I began to wonder if I had been forgotten. The maintenance man who had come to clean the insulation room earlier in the morning was finishing his shift and looked very surprised to see us still in there.
It was approaching dinner time and I was hungry. Although I had brought a lunch and some snacks with me, I never considered the possibility that I might be waiting so long in the ER to need a second meal. My husband had been able to leave the isolation room to get himself some food throughout the day and come back. He was willing to get me something for supper, but because I have a serious digestive illness I preferred to select my own food to avoid being sick.
It's not that my husband doesn't know the food intolerance I have. He would never serve me anything with garlic, onions, or spices, nor something that is high in fibre. But, I sometimes can't handle dairy, fried foods, anything in the cabbage family, raw fruits and veggies... It all depends on how I feel in that moment and what else I ate that day. It's quite complicated.
The many times I have been to the ER or been hospitalized because of my digestive illness, the food given to me always made me sicker. I didn't want to take any chances.
I made my way back to triage and politely asked the new nurse on duty (another shift had started) if I had time to go get myself something to eat. He said I had plenty of time and informed me that it was an unusually busy day. Although I was happy to hear that I could leave to get food without risking loosing my place, I was discouraged about having to continue waiting longer.
My husband and I headed to the hospital cafeteria together to get some food, the highlight of our day, and ate in the isolation room. We then resumed our wait.
When I faintly heard one of the triage nurses calling out number 90, I began to wonder if I would be seen before the end of the day. I had been number 18 and everyone was bypassing me. I understood that people were seen by a doctor in oder of priority but...
After the 11th hour of waiting, my name finally got called.
Once I was in the examining room number 13, I was given a blue hospital robe to change into and a doctor came to see me. I explained my problem and he did a few basic tests, such as check my heartbeat. He then told me I needed to get X-rays done. I was worried that I might have to wait around for hours again, or worse, have to come back the following day, but I was seen right away in the ER's radiology department.
The X-ray results were given to me a few minutes later in my exam room; everything was fine. The doctor said I should consult a pulmonologist and gave me a referral paper with information about the lung specialist who would be in contact with me. The ER doctor also told me I probably just had an infection and gave me a prescription for antibiotics, just in case, which I would have to take for ten days.
For any normal person, this would have been a simple treatment. However, I was diagnosed with ulcerative colitis back in 2009 and after many years of suffering and trying out different medications I managed to be clinically in remission for almost three years because of an expensive drug called Remicade. Antibiotic used to treat infections interfere with this infusion treatment though, which I do every six weeks rather than the usual eight because my symptoms always manifested themselves after the sixth week of treatments.
Of course, the ER doctor was aware of my digestive illness as well as the effect this type of antibiotics have on Remicade patients, so he told me to postpone my upcoming treatment which was supposed to happen on June 22. Since I was due to leave for vacation on the 24th, I started worrying about flaring up during my planned trip to New Brunswick. The doctor said I should be fine but I couldn't help worrying anyways.
I knew that Remicade made my immune system weak (I was often sick) and that there was a possibility that I got my infection because of the medication in the first place. I had read that coughing up blood was one of the many possible side effects for some people taking Remicade, and the ER doctor did not deny the faint possibility of it being the case for me.
I had mentioned that I always coughed up mucus for a couple days between Remicade treatments, but it was the first time I had seen blood along with it. I didn't want to take the antibiotics for nothing, and decided to trust the doctor. I became a bit paranoid about the outcome though.
Being on Remicade in general made me paranoid about developing all sorts of other medical problems. You would be too if you had read the list of serious side effects. I only continued doing the treatments because my quality of life changed significantly for the best because of it. There were still times where I wondered if I should have just gotten the operation involving the removal of my lower intestines — even though my illness could have come back in another area. I hated that I had to depend on the drug and revolve my vacations around it. I hated that complications such as the one I was about to experience occurred.
Trying to be helpful and calm my nerves, my husband suggested that perhaps I could get my Remicade treatment early and start the antibiotics later, but I figured that the ER doctor would have mentioned this scenario if that were the case.
By the time we got home from the hospital that evening, it was too late to reach anyone at the infusion clinic to ask questions. I simply left a voice message, and managed to talk to one of the nurses the following morning.
I was told that I could not do my Remicade treatment early because it would be pointless. I needed to take care of my infection and wait until I was no longer on antibiotics to get my infusion. That kept me worried about the possibility of getting sick while I was away, but I didn't want to cancel my trip since it was mainly to visit my sister whom I don't see often.
I went to the pharmacy to get my antibiotics and read that the possible side effects included diarrhea, nausea, and vomiting; all symptoms of colitis so I became slightly afraid of having to experience such unpleasant reactions. Unlike most people, I knew that I would not be able to take any medication, such as Gravol, to help with the discomforts if they occurred just like I could not take any Ibuprofen (Advil, for example) for my headaches.
The coughing had become painful overnight; it felt like I was being stabbed on the right side of my ribs and lung every time. I was eager to get rid of the problem.
Having no choice but to take the large white pill, I nervously did just that. To reassure me, my husband reminded me that all medications had possible side effects but that it didn't mean I would get them. I told myself he was right and changed my attitude.
By the end of the afternoon, I started running to the bathroom because of diarrhea. On top of that, I developed a massive headache and started feeling both nauseated and dizzy. I really wanted to go lie down in my bed, but felt like I was going to throw up so I headed for the bathroom instead. I sat on the tile floor trying to brace myself on the ceramic sink and keep the small room from spinning. When I closed my eyes the headache was worst for some reason.
I eventually lied down on the hard floor and the memories of me being sick because of my digestive illness came back to me. I spent a lot of time in that same bathroom being hot and cold, shaking, feeling nauseated and weak, having terrible abdominal cramps, urgently having to use the toilet... It wasn't pleasant and I didn't want to go through it again. I knew that if I flared up once again it would take months for me to fully heal.
As I was thinking about my past swollen intestines and internal bleeding, I became more nauseated and ended up vomiting five times in a row. After the nasty wave stopped, I managed to run a warm bath and soak in it for a few minutes while my caring husband kept me company in the room. He kept asking me if there was something he could do to help me, but nothing could be done aside from giving me water to stay hydrated.
I was able to take a two hour nap in my bed after my bath and woke up with a big appetite. I managed to keep down the dinner my husband had prepared and felt okay for the rest of the night was even able to go for a short walk with Jeff without experiencing any problems.
Unfortunately, the next day my trips to the bathroom resumed; no vomiting this time, but being violently sick from the other end of your body is not exactly pleasant either. It didn't last, but I had a feeling it would eventually start up again the next day and I was right. At least the coughing was dying down and there was less mucus or blood.
I took the week off work to rest, and was determined to go on my vacation. I hopped the diarrhea would die down by then.
Still worried about becoming sick during my upcoming trip, I contacted the office of my GI (Gastroenterologist) to make an appointment I had already written him an email over the weekend about my situation, desperately asking him if there was something he could prescribe me just in case, but had not gotten a response yet.
I have travelled while recovering from a colitis flareup before, but the only reason I was able to do so was because I was taking Prednisone; a mix of cortisone and steroids. I didn't like being on the drug because it made me very weak, irritable, and gave me insomnia, among other things, but I could eat without running to the bathroom several times afterwards.
The receptionist didn't seem to think my doctor would be able to see me within the timeframe I requested, but said she would write to him and have him contact me. When I informed her that I had already written him, she told me to wait for his response or if things got worst to call his aiding nurse. I called the nurse right away and left her a voice message explaining why I needed to see my doctor A.S.A.P. I figured that if I could not get an appointment with him I might need to go back to the ER, something I dreaded.
When the phone rang as I was eating my lunch, plain white rice to help with the diarrhea, I was hoping it was somebody from my doctor's office calling but it was one of my co-workers. Because of my absence at the office along with the person who should have been able to replace me, she had no choice but to do my usual work and had many questions. I felt bad and almost volunteered to do what I could from home, but quickly bit my tongue. I needed to focus on taking care of myself. I knew from experience that stress would only make matters worsts.
I realized that worrying didn't help either, so I stopped checking my emails often to see if my GI had written back, and allowed myself to do relaxing things to distract me. I told myself that since my doctor and his staff did not seem too worried I should not be either.
I spent time with my fictional friends as I told my husband, reading books and watching TV episodes. The less I thought about my medical issues, the better I felt both mentally and physically.
At around 5:30 that day, the nurse called back to see how I was doing but I didn't get to the phone on time and ended up listening to her message as she was leaving it. I called her right back but there was no answer. I presumed that I would not hear back from her until she spoke to the doctor about possibly seeing me on the Thursday since she had also mentioned having just gotten back from vacation and that she was still responding to her numerous phone messages and emails.
I did my best not to stress. After all, I was doing much better at this point and really just needed my doctor's medical advice about travelling. He was usually pretty good at responding and helped me from a distance in the past so I patiently waited for him to get back to me.
My GI ended up telling me the same thing as the nurse at the infusion clinic, and reassured me that delaying my Remicade treatment by about a week should not cause any problems. I was delaying it by close to two weeks, but decided to stop worrying. I realized that I was probably creating problems in my head, and although it was good to be prepared for the worst it was also good to keep a positive attitude. That's what originally helped me get better in the first place.
The nurse called me back as well, and talking to her helped me greatly. In addition to what my GI had already told me in his e-mail, she said that the antibiotic I was taking, amoxi-clav, was one of the worst for people with Colitis but that I should recover from the side effects of this drug in the penicillin family quickly. Talking to her was like talking to an old friend, and when she suggested wearing adult diapers during my trip we both laughed. I had secretly already though about that, and even called the airline company about my issue.
I was sure I had read or heard somewhere that people with digestive illnesses could get a bathroom pass for inside the airplane, but I think I might have dreamt it. The customer service agent I talked to about it over the phone had no idea what I was talking about, and neither did the man in the medical department. They both told me that if the seatbelt sign was on I had to respect it for my own safety, and that yes if necessary I had to release my bowels in my seat. I really hopped it would never come to that as it would be quite embarrassing.
I won't lie, I've had accidents because of my illness in the past. Because of that, I got into the habit of wearing thick sanitary pads when I am having colitis issues plus having extra clothes with me. But, that was a thing of the past for me and I wished to keep it that way.
Luckily, I was feeling well enough to fly on the 24th; the coughing as well as the diarrhea had completely ceased. My husband as well as my teenage son came with me as planned, and we met my sister at the Moncton airport.
Although there was still a chance of me getting sick during my trip even if I was super careful about what I ate, I tried not to think about it. After all, there are hospitals in New Brunswick.
I let go of my paranoia but was still really careful about my diet during my stay in Aldouane, New Brunswick. We almost cancelled our planned road trip to Cape Breton as a precaution, but we ended up going and everyone had a great time.
While we were in Nova Scotia I had a few issues, but nothing major until the night we returned to my sister's from Cape Breton. I had a really ruff night and was afraid of not being able to fly back home but I did. I barely ate though, out of fear, so had hunger pains. The rest of my weekend consisted of me running to the bathroom a lot and there was blood in my liquid stools a few times.
As planned, I received my needed Remicade treatment on the morning of July 4 and headed straight to the office afterwards, a little groggy as always after an infusion.
I had hoped that the infusion would stabilize me, but unfortunately my original fear came true and my trips to the bathroom became more frequent. After a hard day at the office and a sleepless night, I ended up going to the ER again and was called into an exam room within only a couple hours.
After changing into a robe (I had to ask for a second one because the one they had left out for me had a completely ripped sleeve), I was able to lie down on a stretcher under a thin blanket and was kept there for several hours as different nurses and doctors came to see me wearing disposable yellow scrubs over their regular ones plus examining gloves. My husband was told he had to wear the same things when he visited me right after work.
I knew form experience that I would either not get fed at all or given the standard meals which I could not eat, so I had brought some easy to digest snacks with me. I could not even eat my plain, saltless crackers without urgently needing to evacuate my bowels. It hurt every time, but this was nothing compared to other times I had come to the ER because of my ulcerative colitis symptoms so I was hopeful that I would recover quickly after being given the proper medication.
It was determined that I had a minor colitis flareup du to the delay of my Remicade treatment, and I was soon given Prednisone through an IV as well as hydration. At first I was told that I would stay in the ER overnight under observation, but I ended up being admitted that night. It made me fearful because of the food, but I was able to place meal orders that suited my diet from a menu this time. All I had to do was phone a few hours ahead of time. This was a great improvements from my last hospitalizations.
Having a private room with a view of the city as well as my own bathroom with a lock after being in a windowless exam room and having to awkwardly go to the bathroom in a commode chair while staff members could just walk into the room was nice. I enjoyed being in a comfortable adjustable bed with a pillow and warm blankets too, but I hoped I would not have to stay in the hospital for too long.
That night, after being rolled into my large room in a wheel chair and visited by a new nurse and doctor, I actually got some uninterrupted sleep and started being able to keep my food in the very next day which was amazing.
I continued receiving Prednisone and hydration through IV, got a painful shot of blood thinner in my stomach to avoid clotting since I was staying in bed, and did more blood tests.
To my surprise, I was eventually told that I was positive for the Clostridium Difficile Infection (CDI), also known as C. difficile. It's another form of colitis. I learnt that people with digestive illnesses as well as those taking antibiotics for infections such as the one I was prescribed are more prone to getting infected by this highly contagious bacteria, especially while travelling. People with digestive illnesses also get sicker from CDI than those who's digestive systems were originally healthy.
I was taken off the prednisone without a plan to taper off which I thought was unusual. I've actually gone into withdrawal by tapering off this drug too fast in the past which gave me the shakes and instantly got me flared up again. However, I was told it would be okay since I was only on a low dose for two days.
The prednisone was soon replaced by an oral medication I would have to take four times a day to help with the diarrhea. I was then sent home with a perspiration of the new antibiotic, Vancomycin, having been assured that this one would not interfere with my Remicade treatment. This treatment was going to last fourteen days.
Although the usual treatment for CDI should work in most cases, there was always a chance of the symptoms recurring, and I got worried that I would be part of that 20% statistic. I tried not to think of the worst case scenario, surgery, knowing it would just get my bowels going.
When I went to the pharmacy, looking like a junky because of all the bruised needle marks, they were out of the antibiotics I needed. It had already taken all my energy to simply walk out of the hospital and take the bus to get home, making the quick stop at the pharmacy on the way. Plus, moving around a lot when I had bowel issues always got them going. I knew I could not make another trip. Luckily, my husband was able to pick up my prescription at another pharmacy for me.
Fighting different medical issues one by one as well as the cocktail of medication I had to take did a number on me so I took a leave of absence from work again to relax and take care of myself.
The progress was slow, but I eventually came back to normal - sort of. I will always have Ulcerative Colitis unless a cure is found. Until then, I rely entirely on medication to keep me stable and constantly fear that my current meds will eventually fail like all the others or that something will get in the way of my treatments again.
Research goes a long way though, and your donations to Crohn's and Colitis Canada no matter how small or big can help end the suffering. For more information on how to make a donation, visit www.crohnsandcolitis.ca
For a fun way to collect money or show your support in the cause, join one of the Gutsy Walk's. This annual walkathon that takes place in many cities across the country helps raise money for research and creates awareness about the digestive illnesses. I've been a volunteer for this event in Montreal four years in a row and had the pleasure of being one of the mascots earlier in June. Dressed as Supergirl, I proudly wore the symbol of hope. Unfortunately, as you just read, I started feeling almost like I had been hit by Kryptonite.
One out of 150 Canadians live with colitis or its sister illness Crohn's. Please help find a cure for the millions of people who suffer like I do.
— Chantal Bellehumeur