For medical info refer post Logistics to clarify https://ibdbaggage.wordpress.com/2015/10/30/the-logistics/
“This is just a small blip in your life.” That’s what my Dad has constantly reminded me and it has been extremely necessary to hear over and over. I was diagnosed in 2010 at the age of 20 and only struggled with a mild diagnosis of Ulcerative Colitis. Through some minor flare-ups, oral use of Mezavant or Pentasa ( slow release anti-inflammatories) seemed to always do the trick and I was usually put back into remission fairly quickly.
Then in January 2015 as I started some new online classes and I asked to go down to part time at work, the anxiety of a new beginning set off a flare up. I quickly renewed a script for Mezavant and after seeing no progress also started using enemas. Since it was the new year, my GI was busy with patients and by February I was still not seeing improvement. I phoned again and at this point was not able to see him until March.
March 11th was the beginning of a long journey. By this point I was having 20+ bloody bowel movements a day. The urgency was uncontrollable and I basically had zero energy. Because the flare up had gotten so bad, my GI said he could not do anything that would be quick enough and would like me to go to Emergency for some blood work, and probably a short admission for some IV steroids. 14 hours later I had a bed in the MAC U and so began my long hospital experience.
After 8 days there was still no improvement and as per hospital protocol it was now time to have my first dosage of Remicade. The GI who was now following me in the hospital said I needed to show drastic improvement otherwise he was going to call the surgeon. 5 days later I was released with a tiny bit of improvement with the thought that a second Remicade infusion as an outpatient would do the trick. As I was released I was also prescribed Prednisone to orally wean off the Solumedrol Steroids. So after 13 days and -24lbs I was discharged for the first time.
One day after leaving the hospital I immediately felt the exact same as when I went in.
I began having 10-15 bloody bowel movements a day again, this time a lot of cramping and pain in my stomach. I was scared to admit that I had almost felt worse. After 3 weeks of being let out of the hospital, I saw my own GI again, who sent me right back to Emergency.
This time I tested positive for C-Difficile, which essentially is the exact same symptoms as my own colitis, and I had probably picked it up from my first admission. In a way this was a positive thing, thinking that perhaps the infection was what was causing the inflammation and that the Remicade and steroids were actually working. This time and 30 hours later I had a private room in the Medicine Unit. I initially saw a new, female GI who recognized that surgery may be necessary but perhaps if I can make it to another Remicade infusion we might be able to save my bowel. However after another 9 days in the hospital it was still not clear and there was not a lot of improvement. So on April 29th I had my first surgical consult, as suggested by the previous GI, in order to put all my ducks in a row and have things in place if a third Remicade infusion, along with antibiotics for the infection did not work. Since the hospital doesn’t usually like to administer Remincade I was discharged at 10pm in order to go to get my third dosage as an outpatient the next morning.
This worked for about a week. I spent my days consumed by counting. Counting my number of bowel movements in a day so I could report back to my doctor. And patiently counting the number of hours left until midnight so my number could go back to zero.
The most frustrating thing was waking up at 8am with a number already at 7. How could you possibly have a positive day waking up with a number like 7?
By May 26th I was having fewer bowel movements, however bleeding had begun again and I knew I was still not better. Under the advice of my family doctor I checked myself back into Emergency. I was told that this was the end of the road, there were no other options, and surgery was necessary. I went to the hospital terrified yet accepting of the fact that this was it, especially since my hemoglobin level had dropped to an all time low of 79. (Normal is between 120-160. Mine was had been around 82). However after another 6 days and thanks to another GI, he decided to do a full colonoscopy instead of a quick Flex. Sig. and noticed that the inflammation actually had improved and was only affecting the last part of my bowel. He suggested trying enemas one more time, and moving up the next Remicade infusion instead of waiting another month.
I quickly learned that patience is the most important thing. Aside from being patient with the healing process, being patient with other people is key. When the IV nurses can’t find a good vein, when it’s 8:30pm and the surgeon still hasn’t come for a consult, giving the same update to 10 people a day, or when every single person has a suggestion and swears by a new home remedy that will work. Breath and be patient. These people are going through it with me. When my nurse whispered, “I have to ask you a really embarrassing question… How many bowel movements have you had today?” in front of a couple of my friends and Dad visiting I think she blushed more than I did. (Hi that’s literally what I’m in here for.)
I had to swallow my pride and embarrassment and take comfort in the fact that these are my people. I threw my dignity out the window and let my people see my rock bottom. There’s beauty in complete humility and honesty. You just have to give your people credit to see it.
And there I was; 10 days out of my last hospital admission and four Remicade dosages later, feeling better than I had in months. I had regular, formed bowel movements, I had so much more energy and was feeling very hopeful. At this point I asked my work for an entire month off to ensure a full recovery. Unfortunately this improvement lasted a total of 2 weeks. On a Sunday afternoon I noticed a small trace of blood again and I quickly arranged to see my doctor. He assured me that with the amount of bleeding that I have experienced, a little bit right now is to be expected, but to be safe start using enemas again. This strategy worked for the time but any time I attempted to wean off the enemas, bleeding started again. I believed that I needed to just have another Remicade and perhaps need the infusions more often. Somehow I managed to get myself through until then and hoped for the best.
3 days before leaving for New York I had this infusion yet there was 0 improvement. Nothing. Not one ounce of recovery. In denial that this was happening again I somehow managed to get through my trip, and through the rest of the summer, holding out until the middle of September until I could see my new, female GI. Otherwise I would be sent back to the hospital and we already know how that goes.
My new G.I who was already familiar with my case listened intently to me as she treated me with concern and integrity. In a last ditch effort to save my colon she suggested a double dose of Remicade, at a sooner date, just to be 100% certain if the drug was going to work or not, no C-diff, no prednisone, nothing but Remicade. And sure enough….no improvement.
Onto the next steps.
Now here is where I was given the choice. Either call it a day, bite the bullet and move on with my life with surgery. OR go back on steroids, wait 3 months until Remicade is completely out of my system, and try a new drug, Vedolizumab. My doctor could see I was struggling with the decision and suggested a scope in hopes of it helping with the decision. That was done a week later and she stated that the colon was still very sick, with no signs of healing. She told me to think about it for a week, and come back to her office, with a clear mind not clouded from anesthetic. Pondering all week with a life changing decision I chose to relax over the weekend and celebrate mine and my sisters birthday. And this is what did it. On Sunday October 4th, my actual birthday, I had a complete accident. Sitting on the couch and as soon as I felt the need to go, I tried to run upstairs to the washroom but just did not make it. While having to strip down and clean myself up I finally said to myself “if shitting your pants on your birthday is not a reason to have surgery, I don’t know what is.” And as easy as that the decision was made.
So here I am, beginning the blog as I wait for O.R. time, finished with the disease and about to start life with an ileostomy and hopefully a J-pouch.
This experience has been a complete whirlwind and the best thing I can do is be reflective, and learn from it. And here’s what I’ve come to realize: It’s so important to find a good GI. This whole process has involved four different GIs for me, as well as my family doctor, the medicine doctors in each unit as well as a dermatologist, naturopath and the surgeon. Each one has had a different opinion and a different plan. As appreciative as I was for the first one in the hospital, he was very blunt and pro-surgery. At the same time the second, female GI was very cautious and reluctant to do surgery. And the last GI who also was reluctant to do the surgery I am also thankful for. My own first GI was completely absent and after a total of 28 days in the hospital he did not see me once. And that’s why I made the switch . You have to find someone you can connect with but also someone who recognizes where you are in your life. Yes surgery may be completely warranted and necessary however she was so good at realizing that as a young female, the risks and lifestyle changes would be astronomical and she showed compassion and empathy while looking from that perspective.
I’ve done the Gutsy Walk for 3 years now however given the circumstances I was certain this year I would miss it. With a total of $2220 raised, and 12 people out participating with me, I did complete the 5km this past June, and it felt wonderful. I hope this small fundraising effort can somehow contribute to others suffering like me. Aside from the physical challenges I think the most difficult aspect of the last few months is the mental anxiety I’ve been put through. My whole life has been put on hold. I had to drop all the courses, leave work, miss out on social events, change my diet and essentially just rest until I got better.
Yet the process is a long one and I can recognize that patience is key. In the grand scheme of things 1 year is minuscule compared to what a whole, healthy life looks like.
I know so many others are suffering with this disease and many have it much worse than I. However I hope that my short story, as a young female can help at least one person realize that you’re not alone and patience along with positive attitude is what will get you through. My journey is not over but I can attribute to the fact that you only have one body and it’s so important to take the best care of it. If you can do anything to help yourself stay healthy, do it. Rest. Drink lots of water. Take your meds/natural vitamins. Exercise. Breath. We all come with a little baggage and this is just a small blip.