Sarah's Crohn's Blog - Still taking some hits

September 26, 2021

Hi friends! It's been a while since I've posted an update, so I figured it's time to get you up to speed on my exciting life. As always, this is probably going to be long. My last big event was my bowel perforation on December 30 which nearly killed me. This resulted in me getting an ileostomy again which was absolutely devastating. I had a few bowel obstructions after that, which weren't really fun, but I figured out how to adjust my diet so they don't happen as often (translation - peel everything with skins, and beware of fiber and healthy foods). I have since healed up from surgery, and this has been the first time in a while that I've actually been able to pursue my hobbies and get back into shape. Summer has been pretty great. It's the first summer in 3 years that I haven't been stuck in a hospital bed or recovering from surgeries. I have been doing small doses of hiking, camping, paddling, swimming, gardening, and exploring, but I certainly have been more tame than I used to be. I can't really do things with the same intensity that I used to, but I'm getting better everyday.

I returned to work per diem in April. My goal is to be at least part-time by the end of the year so that I don't have to pay $850 a month for health insurance, but I'm not sure if that will happen. A 6-hour shift feels like what a 12-hour shift used to feel like, and it takes me days to recover from a single shift. I am very tired. Not just tired, but completely and utterly exhausted. I can sleep for 15 hours and still wake up tired. Unfortunately, part of the issue is that I have to empty my bag 2-3 times a night, and my body is constantly on high alert, thinking that I have a leak, so I'm frequently waking up in a panic. My nights of sleep are never ever a solid unbroken sleep. On top of that, I suspect I am just dealing with the "normal" chronic fatigue that a lot of people experience with autoimmune disorders. My body is constantly trying to kill itself, and it is also constantly trying to survive from being attacked, and it is truly just exhausting. I try to push through it as best I can. I try to work out most days (they say exercise is one of the best things you can do for chronic fatigue), but there comes a point where I have to listen to my body if things are bad.

In general, I have accepted my ileostomy. I never cramp anymore, I can eat without being in pain, and I'm not pooping my pants in public, so there's that. But at the end of the day, I am human, and life gets the better of me sometimes. I do break from time to time, but in general I feel like I am staying as strong as any human can possibly do. I had the blessing of being stuck in a hospital for so long that even my imperfect life right now is pretty darn good. My house is a mess, my garden is full of weeds, and a good day for me is just a day where I have energy to make dinner. But I'm getting better, and it is the new life I am learning to live with.

I traveled to Boston a few weeks ago to get a sigmoidoscopy and ileoscopy (camera up my bum and my stoma) with my colorectal surgeon to see how things look. My small intestine looks great, but my rectum still has mild inflammation from Chrohn's. Therefore, I am not a candidate for a reversal surgery right now, and I need to make a medication adjustment to try to get things better. As much as I was hoping for things to be perfect, I am partially relieved that there was still some active disease because it gives me hope that my fatigue might get better once the inflammation gets treated. I also wasn't looking forward to getting surgery again since I'm finally able to exercise again and be semi-functional. My reversal surgery, if I ever get it, will be a two-step surgery, and the thought of having to recover from two abdominal surgeries and losing all the progress I've made, is not something I want to think about or deal with. We shall see, and we will reevaluate things in 3 months.

After going to Boston, Dale and I spent the weekend in New Hampshire where we did some camping and hiking. It was wonderful, but it took me over a week in bed to recover from. I slept so much that I nearly slept through my mother's birthday. From then until now has been an incredibly awful game of whack-a-mole for me (on top of my normal struggles). In a one week period, I've had mice chew through the wires in our brand new dishwasher, then they chewed the plastic flexible piping underneath the sink causing a huge water leak. Our sump pump stopped working, and I basically spent an entire week learning how to fix my broken house on YouTube. Just a few days after that, our water heater broke! Add on some very unexpected financial changes that are resulting in me having to increase my work hours (which I know I will struggle through), plus a blowout on my most exhausted day (translation - poop everywhere - clothes, carpet, etc.), oh and being without a truck for 6 weeks because the part has been on backorder... Yeah.... Life has been hitting me hard.

Life is tough. Really tough. But overall, I have made HUGE progress from my near-death time in the hospital. Just like any human, I have my good days and my bad days, and I just do my best to deal with the cards I've been dealt, as unfair as it may seem. Thanks everyone for being awesome. I appreciate all your love and support, but I still look forward to the day where I don't have to be patted on the back for how well I can take a hit.