I really wish my infusion treatments had the potential to completely heal me, but the reality is that they are simply helping me live a somewhat normal life. There is currently no cure for my illness, and the medication I receive through IV (intravenous) could cause other health problems in the long run. Although I feel fine most of the time now, I am technically still sick and probably always will be.
When people see me out in public, at the office, or even in my home, they generally don`t see me as a sick person. In all fairness, I look young and healthy on the outside. When I feel well, I am perfectly capable of working and going out etc… I don’t exactly want to be labeled as sick, but I often wish that people could understand what I go though.
I know I don’t LOOK sick, but my body is at war with itself!
Eight and a half years ago, when I was in my late twenties, I was diagnosed with Ulcerative Colitis. It's a type of autoimmune disease, which means that my immune system stopped working properly. For an unknown reason, a bacteria inside my intestines started attacking the healthy cells within the lining, thinking it`s for my own good, and it decided to become a permanent resident.
When I flare-up which has happened a total of eleven times so far, my lower intestines swell, becomes full of ulcers, and bleed. I get major cramps comparable to labor pain, have urgent needs to run to the bathroom plus severe bloody diarrhea, lose control of my bowels, and sometimes become dizzy or nauseated. But I continue to look perfectly fine on the outside, aside from major weight loss due to not being able to keep in anything I eat.
I've realized over time that some foods make me sicker than others, but my intolerances are a bit complicated. I can eat more varieties of food when I am not flared-up, but some days I have a hard time digesting certain foods while other days they hold no consequence. It mainly depends on how I feel physically and emotionally, as well as what else I already ate that day.
It's hard to explain to people why one day I can eat something, and another time I can't. I feel like they think I am making it all up. Sometimes I feel like people believe that my entire illness is all in my head, or that I am faking.
I`ve been given dirty looks from strangers for using a handicap bathroom or not offering my seat on the bus when I felt ill because I looked okay.
A few times, I was on my way to the ER, mentally preparing myself for an overnight stay or hospitalization followed by months of fighting my illness and having to deal with all the side effects of the temporary medication I knew I would be given to help reduce the intestinal inflammation; insomnia, irritability, major appetite, and loss of strength, just to name a few.
While I was on my way to see my GI (gastroenterologist) at the hospital for a follow-up appointment during a flare-up, I was sitting on a bench at the front of the bus with my eyes closed and concentrated on my breathing as a way of trying to ignore the intense pain I felt on my left side. I heard a woman angrily yell out ``stop pretending you`re sleeping and let my daughters sit down!`` I slowly opened up my eyes and realized that she was talking to me. I wanted to explain about my pain, and how worried I was about suddenly releasing my bowels, but instead I got up so that the young twin girls could share the seat. I stood on the crowded bus until my stop, enduring my pain and hoping nothing embarrassing would happen.
Another time, a woman randomly told me I should offer my seat to an elderly lady standing a few metres away from me on the moving bus. The older woman contested, saying she was fine, and the other woman told me I should get up anyways. This time, I spoke up. I knew that telling her I had Ulcerative Colitis would probably be pointless because people often look at me like I am speaking another language when I mention my illness, so I just told her I was in a lot of pain and was on my way to the hospital. She instantly apologized, but I felt like I should not have had to explain myself.
On a flip side, I often become so bloated after I eat because of my illness, that I look pregnant. If I am on a bus or metro looking like I am with child, I get offered a seat. When I kindly decline, people sometimes insist and I feel like if I tell them the truth things might get awkward.
I used to feel self conscious about how I looked, and embarrassed about my bathroom issues. Now I mainly joke about it, but I still get discouraged at times.
Those who know about my chronic digestive illness sometimes forget that, just because I am not flared-up, it doesn`t mean that I am cured. Far from it!
I am what you would call in clinical remission. I take pills every day, and for the past five years I've been getting infusion treatments (chemotherapy if you will) every 6 weeks in order to remain stable which is not to say completely symptom free. I feel tired all the time no matter how much I sleep, have to be very careful of what I eat, and still have bad cramps once in a while or urgent needs to go to the bathroom; especially when I travel which I love to do.
It`s stressful not to be able to find a bathroom when I need one fast, and I don’t usually have the time to explain myself.
There have been other complications in the past. My infusion treatments has given me a better quality of life, but it's not problem free.
A couple of years ago I flared-up simply because of an anti-biotic I had to take which interfered with my infusion treatments. I ended up getting the C-Difficile bacteria around the same time which would not go away. It made things worst for my Ulcerative Colitis, so I had a tough seven months. It wasn’t as hellish as the first four years of living with my illness, during which I didn't seem to catch a break, but it was still unpleasant.
Because of my low fibre diet, I`ve recently developed internal bleeding hemorrhoids. Although I found them to be much less of a nuisance than the external ones I had during one of my first flair-ups, they are a bit trickier to treat.
On top of my regular visits to the infusion clinic which include blood tests every three months, I have appointments with my gastroenterologist once or twice a year and also go to the hospital for colonoscopies just as often. I find it hard to get a job or keep one with all my necessary medical appointments and unpredictable flare-ups; not every employer is understanding and I feel like I am withholding important information if I don't bring up my regular appointments during an interview. I feel like I have to work extra hard to prove myself.
There is no end date to my treatment. This is me, FOR THE REST OF MY LIFE. Unless of course, my current medication stops working like the others I have tried in the past. In that case, I will probably need to get an operation.
Why not just get it done anyways you might ask? Try to imagine having part of your intestines removed, then needing to go to the bathroom 5-6 times per day on a normal day. There is a chance that I could still flare-up after the operation, and that scares me.
I could end up needing an operation even if my treatment continues to work, because I am at a high risk of developing colon cancer.
I am desperately hoping that one day a cure will be found for Colitis and its sister illness Crohn's, so that myself and everyone else with IBD (Inflatable Bowel Disease) can stop suffering in silence. You can help, by giving a donation to Crohn's and Colitis Canada.
Find out more about the non-profit organization and how to donate at www.crohnsandcolitis.ca
You can also join Crohn's and Colitis Canada on Sunday June 3, 2018 for their yearly fundraising event, The Gutsy Walk. Unless I fall seriously ill again in the near future, I will be at the Montreal event as a volunteer like I have been doing for several years now.
When I am not fighting my illness, I fight to find a cure. I hope you will join me in this battle.