Sarah's Crohn's Blog - Surgery #2 Coming Soon

Sarah’s Crohn’s Blog is a series of journal entries related to Sarah’s battle with Crohn’s Disease. She was initially diagnosed with ulcerative colitis in 2010, but since then the diagnosis has changed to Crohn’s Disease. Anything referring to ulcerative colitis in these blogs was simply written before the diagnosis changed.

June 12, 2020

Hi friends! It's been a while since I've posted an update, and I'm happy to share some good news. I was recently notified by my surgeon that he can get me in for surgery next Thursday to reattach my intestines! That means no more poop bag (hopefully), and one step closer to being "normal". This all should have been done several months ago, but the COVID-19 pandemic prevented hospitals from doing elective surgeries. It has been a long road for me, and although I try to be positive, I have had my days of being mentally weak and just plain sick of being sick. Since getting my colon removed in January, I am gaining weight, getting into great shape, and working hard every day to get stronger! I'm getting outside walking, hiking, paddling, and gardening, and it makes me so so happy.

Although I am worlds better than I was in the hospital, I have still had some medical issues which I think are related to inflammation and/or the autoimmune process. I have extreme fatigue nearly every day and sleep at least 12 hours a day, none of which makes me feel well rested. I have joint pains in every joint of my body, and I look like a crippled old lady when I'm walking first thing in the morning. I've had rectal bleeding for the past several months, and I recently had a sigmoidoscopy/ileoscopy (sticking a camera up my butt and through my stoma) to investigate this further. My small intestine looks great, but my rectum was very inflamed and friable (bleeds when touched). This could either be my Crohn's disease or diversion colitis. Diversion colitis happens when your rectum doesn't get the normal food transit and doesn't get exposed to nutrients / short-chain fatty acids that are necessary to keep it healthy, resulting in inflammation. Treatment for this is surgery (reattaching the intestines so food can go through), but if it is Crohn's, it could make the surgery more difficult. If the surgeon goes in and sees that it is really inflamed, he can still do part of the surgery, but I will still have an ileostomy until it settles down. So basically I won't know if I'll be free of my poop bag until I wake up from surgery, and that makes me super nervous.

I have also had blurry vision for the past several months. I thought it was related to inflammation since it came on around the same time as the joint pains, but I saw an optometrist who told me I have cataracts in both eyes. This is likely due to my extended prednisone use. The only way to fix this is surgery, but I am nowhere near close to doing that yet since I am so young and my vision is strangely 20/20 at the moment. Overall, the ostomy bag has not been terrible, but it is annoying that I can't wear cute clothes (wait, I just wear sweatshirts all the time anyway...), and it has also limited me in my hobbies. Certain activities like jiu jitsu, horseback riding, and paddling are rough on the bag and/or put me uncomfortably close to having a "blow out" (translation - the adhesive of the bag comes off and poop goes everywhere). I've had several blowouts at night, and most of them are due to the fact that I work out everyday and sweat, and this loosens up the adhesive on the bag. It's not the end of the world, but when it's 2 in the morning and you're tired, the last thing you want to do is change your bag and clean up a big mess.

Sometimes I feel like the mole in the whack-a-mole game... The minute things start to get better, something whacks me again. I feel like sometimes I never get a break, but other times I feel super grateful. I feel grateful that my life in Maine is pretty much the same during a worldwide pandemic as it would be otherwise, and I get to escape and explore the outdoors whenever I want. I am also lucky that I have Dale supporting me through all of this. We've been dating for 6 years, and I've probably been sick for at least half of that time. He still loves me through all of it, through the poop bag, the diapers, the hair loss, my "old lady" days, having to shower me and change my clothes, the crying, walking with a cane, and unable to do the adventures that brought us together in the first place. It turns out we are also capable of binge watching Game of Thrones in the hospital and playing board games, and still loving every minute we spend with each other. So yeah, I suppose life could be worse . Thanks everyone for all your support, and I hope to have some new [non-medical] adventures to share with you soon!