Welcome to my new blog! I decided to create this to help anyone, as well as myself, navigate through the confusing world of Chronic Illnesses. In my case, I was diagnosed with distal Ulcerative Colitis.
This picture was taken on my diagnosis day. As you can see I am pretty pumped to be in a hospital, which is quite unusual, but this has been an unusual circumstance.
I know for sure that I have been sick since mid-october, but at the time I didn’t even think I was sick. I had been pooping this mucus and naturally I asked my nurse best friend if I should be concerned. She was concerned, but I played if off because other than that, I felt fine. It wasn’t until a couple weeks later that alarms started going off because the mucus quickly became bright red blood. For three days continuously I had bright red blood when I wiped, in my stool, and in the toilet. I finally booked an appointment with the doctor.
Here’s where shit gets tough. Colitis doesn’t really show up on tests and I learned this the hard way. Besides the blood and immediate feeling of needing to poop, at the time I had no other symptoms. I honestly felt okay. No itching, so discomfort, no pain. Just fine. This baffled the doctor and he ordered blood, urine, and stool samples but otherwise said he had no idea. Maybe hemorrhoids? So I did my test and a week later went back only to hear that everything came back normal. So then I was passed off to a new doctor who again looked at my tests and was puzzled as well. I didn’t have the textbook symptoms for hemorrhoids so what was it? Our next step was to test for parasites and infections because previously I had traveled to Europe and I work within the social services system with lots of germy kids. So again, went in to the lab, did the tests, waited a week and met with another doctor. Again, the tests came back normal. No infection and no parasite. Again, doctors were left with the same answer of “I don’t know”.
But that wasn’t good enough for me because now it was mid-November and I was getting worse. Every day I was bleeding at least once. Everyday. I could feel the effects on my body. I was tired, easily winded, very weak, my appetite fluctuated day to day, very pale, and once even felt like I had the flu with these weird hot and cold flashes. And now I was going to the bathroom 5-7 times a day with a mix of diarrhea and solid skinny poops. So I pushed and got a rectal exam done. They couldn’t feel any lumps or lesions so I was told it was probably internal hemorrhoids, which would be diagnosed for sure with a colonoscopy. Because they couldn’t feel lumps I was automatically put very far down the list because it was ruled out to most likely not be cancer. This meant it would be months before I heard back from a specialist. At this point I almost stopped caring. Well not so much caring, but I guess just became desensitized. It became a new everyday routine, my new “normal” so it was hard to remember that what I was experiencing was not normal.
- Pooping 5-7 times a day- not normal
- Pooping blood everyday- not normal
- Being winded from singing songs to my class and walking up stairs-not normal (I’m almost 23 years old and was a competitive dancer)
- Constantly feeling this sickly body sore-not normal
- Feeling nauseous and sometimes actually puking, but no fever or other symptoms- not normal
- Being embarrassed to go out because you never knew if you would have a public shit attack or even if there were washrooms near by for you-not normal
But it became normal. After a month and a bit of going through the same thing, it became my normal. Luckily I had a overbearing mother, a super protective boyfriend, and very mother like nurse best friend to consistently keep me on track and tell me it wasn’t normal and I shouldn’t just accept this. I wasn’t even given a plan on how to help myself while I waited for answers. So finally I got in to see my family doctor. This was my turning point.
Instead of getting “I don’t know” “Maybe it’s nothing” “I doesn’t sound serious” I finally got “Woah, Brittany that isn’t normal. We need to investigate this”. Finally, someone believed me and more than that, took it seriously. Now I have been with him since I was super young, so he is well aware of my comprehensive medical history. Taking a look at everything I had going on, he started to brainstorm. Let me give you an idea of what I have going on:
- Born with congenital ear problems in both ears. I was born with no ear canals and had to undergo three surgeries to reconstruct my ears and create ear drums. I now have normal hearing in my right ear, with chronic ear infections, and my left ear only has 50% of my hearing.
- Diagnosed almost 3 years ago with endometriosis.
- Since I was a kid I had allergen asthma. I was that super cool kid with that giant ventilation system you had to breath into. I would secretly pop the saline water solution and drink it.
- I have eczema on my face
- I have hypothyroidism (which always baffled my doctors because I have always been underweight regardless of what I ate).
With all of this in mind, looking at my currently symptoms, and me already being a walking poster child for autoimmune disorders he concluded that most likely to him it sounded like colitis. So from this point on we worked together. We treated it like I already had colitis and started lifestyle changes that help individuals with flareups. In addition to this, I saw him once every 3-4 weeks to do blood work to make sure my levels were okay, especially with all the bleeding. Finally, he personally called and reached out to as many people as he could to find anyone who could take my case. It was refreshing to see a doctor who cared so much. He was just as heartbroken as my family and I when he had received the news that 4 doctors had to turn down my case.
Now please keep this in mind. I live in Edmonton, apparently the epicenter of colitis and Crohns, so these specialists have taken on so many cases and in Alberta it is said that 3 people will be diagnosed with colitis every day. And with me not having a lump, there were many other people ahead of me with more “serious” cases. I put this in quotations because I think any IBD is serious and should be treated as so! Finally, my mom had a friend who’s daughter has colitis and recommended their doctor. My mom ran it by my doctor, who then contacted him, and viola! I went from having an appointment with a general surgeon on March 17th to now having an appointment in 5 days.
I was stunned. I would finally have answers, what I always wanted. But a part of me didn’t want it either. Because having the diagnosis was confirmation and from that point on I would be a different person for the rest of my life. Was I ready? New years was giving me a new meaning to “New year, new me”.
But this was already a lengthy post! I will write next time about my process to doing a colonoscopy and what my treatment plan is right now. But if I could leave this post with any message it would be to keep fighting. Know your body, and know when something isn’t right. Doctors are humans who make mistakes and who don’t always have all the answers, and that’s okay. Then get a second opinion, a third, or fourth. Search up problems, look up how they diagnosis it and approach your doctor about certain tests you may have come across. My doctor hadn’t thought of doing the CRP blood test until we discussed it with him! Fight for you until you get the answers you are comfortable with. It is so easy to just take someone’s word for it and stop and wait. But you don’t have to wait. Knowledge is power. I started changing my lifestyle habits before I got the diagnosis and even just changing my sleeping and eating habits made a difference. Take control of you!
With that I shall say goodnight dear readers,