My Journey With Crohn's So Far

I'm not going to start this story from the onset of the disease but rather from when I became aware that something was really wrong. 

It was Labour Day 2011, my now husband, then fiancée Matt and I went to a movie at a local theatre. I had been feeling off all weekend, having issues going to the bathroom, nausea and pain. We were seeing the final Harry Potter movie - Harry Potter & The Deathly Hallows Part 2 - the lights were down; the previews were done and the movie was just beginning when I felt an incredibly sharp pain in my lower left quadrant and a wave of intense nausea. I told Matt I felt sick and literally crawled out of the theatre. Anyone who knows me personally knows how much of a germaphobe so Matt knew something was very wrong and followed me out of the theatre. I felt like I needed to go to the washroom but nothing was happening. After I had Matt get our money back (priorities, am I right?), he got the car and drove me to the nearest emergency room. 

At the ER, they wanted to immediately get me hooked up to an IV to start running fluids but I was terrified. I had never had an IV before, only had blood work done when it couldn't be avoided. When I started vomiting however, it was clear that I needed it. By this time the pain was excruciating, I had cold sweats, a high fever and was vomiting off and on. When the on-call doctor came in, I remember he tapped my side and I swore at him from pain. I was told it looked like it was my appendix but because it was Labour Day, the imaging department wasn't open to an ultrasound to confirm. So, they sent me home with instructions to go my nearest emergency room if the pain worsened. 

Tuesday passed painfully - the pain was still terrible, I had a high fever but was absolutely freezing, still vomiting off and on. Matt wanted to take me to the ER but I was being difficult. I had never been this sick before and was scared and deluding myself. On Wednesday morning, my mom forced her way into my apartment and told me I was going to the doctor right then.

My doctor's office was connected to the hospital which was a very good thing because as soon as I entered a patient room, I started vomiting and my doctor sent me to the ER. 

Once at the ER, they started running tests. I had an ultrasound, then a CT scan and was told there was fluid in my abdomen, as if my appendix had burst but was intact. I was being given fluids and antibiotics through an IV and the doctor on call was reviewing my test results. I remember him taking me into the hallway, to talk to me one on one – I asked him if I was going to die from whatever this was- he was very kind and he told me that while I wasn't dying I was very sick. I was admitted and would stay in the hospital for about a week. During that time, they were unable to figure out what was making me so sick. They asked me if I had travelled to Asia or Africa recently. I continued to spike a fever every few hours and was still on IV antibiotics. I met the on-call GI and he told me he didn't think it was an IBD because I was showing some improvement from the antibiotics and an IBD wouldn't respond to them. I now know that the improvement I was showing was because the antibiotics were helping with the infectious fluid in my abdomen that was the result of a burst abscess but more on that later.

Eventually I was feeling slightly better and was determined to leave the hospital. Looking back, I should have stayed because they were talking about giving me a colonoscopy which would have found the Crohn's disease but that's life. 

By this time, it was around mid-September 2011 and I was released from the hospital. I never went back to feeling 100% though but was not getting any answers from doctors. I went about my life as best I could. That October, I went wedding dress shopping and was so weak I chose a lightweight bridesmaids dress, ordered in white (I would later end up with an actual wedding dress when I was feeling slightly better). 

In mid-December 2011, I was back in the ER with a perianal fistula that had to be lanced and drained (Oh Crohn's, you're such a beautiful disease...). The doctor who was doing that for me asked me if I had been tested for Crohn's disease. By this time, having been doing my own research on doctor google, I was suspecting I had Crohn's because I was experiencing almost every symptom listed (I would later claim the rare honour of having experienced all listed Crohn's symptoms. In case the meaning is lost because I am writing this and not speaking it, I am being sarcastic). 

Back to the doctor's I went, where I was referred to a GI (the one I had seen initially in the ER back in September). On December 23, 2011, I was sent for another ultrasound and 12 vials of blood drawn. Merry Christmas to me. A colonoscopy was finally scheduled for the end of January and in the meantime, I was put on two antibiotics, Flagyl and Cipro. 

Come the end of January 2012, I had my first colonoscopy. Following the procedure, while I was in the recovery room with Matt and my mom, the GI came in and confirmed that I did indeed have Crohn's disease. I had a number of abscesses and from what he could tell, I had probably had the disease for about 6 or 7 years at that point. Knowing the symptoms and looking back now, that is about right. I experienced my first Crohn's symptom in my senior of high school, sometime in 2005-2006. 

The GI started me on Methotrexate and for the next 8 months or so I continued on the Methotrexate as well as numerous rounds of Flagyl and Cipro. During that time, I again tried to live my life as normally as possible - I got married but had to postpone my honeymoon, tried to work full time, and spend time with family and friends. A few days before my 24th birthday in the beginning of August, I was back in the ER with another fistula, and a canker sore so large on the back of my tongue it was affecting my speech. Again, I was put on another course of antibiotics, given requisitions for yet more ultrasounds and CT scans and sent on my way. 

On the Saturday of Canadian Thanksgiving weekend in the beginning of October I woke up with my eyes incredibly red and sore. Matt and I found an Optometrist who was open and I was told it was yet another symptom of Crohn's and was prescribed steroid eye drops. 

Following that weekend, I was back in my GI's office and was told that the antibiotics and methotrexate were not enough to fix the damage already gone to my intestines and that I needed a bowel resection. The surgery was deemed urgent and was scheduled for Sunday October 21st, 2012. 

The surgery was supposed to be done laparoscopically, and it was...at first. They removed about a foot of my bowel, including the terminal ilium but when they tried to reattach the two sections of the bowel, I started bleeding out. They were forced to cut me open to stop the bleeding. That ended up being a blessing in disguise because they found two more abscesses they hadn’t seen on any imaging that were almost perforating my bladder. They also took out my appendix while they were in there.

Needless to say, when I woke up from the surgery I was in a considerable amount of pain. The stay in the hospital, which was initially only supposed to be a few days turned into a week. I had a drain and staples. Because I lost so much blood during the operation they wanted to give me a blood transfusion and when I asked for more information they took that to mean I didn’t want one. In the end, I did not end up getting a blood transfusion, was just put on heavy duty iron pills. I should mention that I have been anemic since my teens so I was no stranger to iron supplements but after my first bowel resection my intestines do not absorb the iron as well as before – so I have had two iron infusions at the hospital since.

Eight weeks following the surgery, in December of 2012 I was started on Remicade and have been on it ever since. The Remicade has helped put a fair portion of my Crohn’s into remission but I have never achieved complete remission. The Remicade has caused me to gain about 50 lbs. of excess weight that I have not been able to shake.

Following the surgery, I did experience a break from the pain in my lower left quadrant but it did return intermittently about 5 months after in the beginning of 2013. I went back to my GI and after various rounds of ultrasounds and CT scans I was told I had scar tissue and to deal with the pain.

In August of 2015 Matt and I moved about an hour away and I switched to new, local GI. When I informed him of my complicated history with Crohn’s he ordered an MRI to find out the source of my pain. It was a relief to discover that I had a stricture caused by scar tissue where the bowel was rejoined and was given instructions on foods to avoid. I stopped the Methotrexate in December 2015.

For whatever reason, it took a little over a year to determine that antibiotics and other prescriptions I was given were not enough. During a colonoscopy in the beginning of January my GI tried to stretch the stricture using a technique called balloon dilation but it was unsuccessful. I was prescribed Imuran and referred to a local surgeon for another bowel resection consultation.

I saw that surgeon in March 2017 but my case is too complicated for her so I was referred to a colorectal surgeon at Mount Sinai.

And now we’re in the present. I met with the colorectal surgeon in May 2017 and she confirmed that I did in fact need another bowel resection with possibly a procedure done on a fistula. I am currently waiting for my surgery date, which will be sometime in the end of June.

If you actually read this far, kudos to you! And thank you for taking the time to read my story. I have some ideas for future posts – my experiences with Remicade, maybe a more detailed post on my symptoms, etc.

If you have any suggestions or requests, please let me now and once again- Thanks!