No, I’m not British. I’m an angry American girl who woke up at 5am and shit blood out her butt despite having an ostomy that’s supposed to be doing my shitting for me. I’ve been shitting blood for half my life. Let’s re-cap:
At age 15, I got violently ill one night, shaking and having uncontrollable blood + mucus diarrhea with a side of projectile vomiting.
A year later, at age 16, while making a scrapbook for my grandfather for Father’s Day, I got up to use the bathroom in our basement and stood up to notice blood running down my leg. After getting a diagnosis of Ulcerative Colitis and denying a recommended immediate total colectemy, I spent the remainder of high school on high-doses of steroids and “maintenance” drugs that were supposed to keep me in remission. Problem was, I never went into remission. Even after ballooning up from Prednisone, having worsening acne, sweats, moonface, hair growth, and insomnia, my poop was still coated in blood. There was always blood. For 6 years, every time I went to the bathroom there was blood. It didn’t matter how much medicine I took, new drugs, old drugs, none of them got me into remission. They made things semi-manageable until I was a Junior in college, then my shit had turned exclusively to blood, and lots of it. I’d shit bowl-fulls 30 times a day. I didn’t eat, I drank Gatorade, I writhed around in the bathroom floor of my college apartment praying for death or a miracle. After a one month remission, I decided it was time for the surgery I’d put off for so long. I opted for a J-pouch and felt better after my total colectemy in 2005. However, if you read my earlier blog posts, you know my pouch failed and I had 7 more surgeries to try to fix it, or deal with a fistula.
The last surgery was nearly 4 months ago now. June 18. I had a loop ileostomy to divert stool from my J-pouch, to give it a break and give my body time to heal. My recovery officially ended at the end of August, so today marks 2 weeks that I’ve been out of recovery. My recent blog posts have bragged about my ostomy and how much better I’ve felt. I’ve said I’ll stick with this disconnected pouch and let it hang out in there as long as I can avoid diversion pouchitis. The problem with this loop ileostomy is that it has two openings. A distal and a proximal, which means that unlike an end ileostomy, stool can still go through the pouch from time to time, which means that I get to poop from my ostomy and my anus. I’ve had mucus from my anus pretty much since the surgery. That was “normal” and to be expected. However, last week, I noticed some blood when I pooped, and this morning there was significantly more. Something about seeing blood-covered toilet paper accompanied by blood in the toilet bowl sends me into a state of PTSD-like shock. When I saw the blood on the toilet paper this morning, I froze. My mind shut off and my body was on automatic pilot. I flushed, washed my hands, went downstairs and stared at the wall for a solid 5 minutes before thoughts entered my mind again and tears welled up in my eyes. My first thought was, “How is this still happening, after all this time, after all these surgeries, after all the drugs and everything I’ve been through. How is this seriously happening again?” That lead into, “This is never going to end. No matter what I do, no matter how many surgeries I have, what, or how many drugs I take, I am always going to be sick. My body is always going to remind me, each time I think I’ve gotten ahead of this disease, that I haven’t.” More tears came, then Rob came downstairs because he heard me crying. He held me tight as I sobbed so hard I started hyperventilating. Through frustrated realizations voiced aloud, I voiced how fucked I felt. How tired I was. How no matter what I do, when I think I’m in the clear, bam. The blood is back. After I calmed down enough, I emailed Dr. Shen to tell him there’d been more blood, “What do I do?” I’m going to try short chain fatty acid enemas, cause you know, despite having an ostomy, my stupid J-pouch is still in need of medical treatment.
So, two weeks. Awesome. I guess I felt okay during the recovery, so that’s something, but still. It would be NICE to have, oh, I dunno, a fucking YEAR to feel well before the shoe dropped. TWO WEEKS out of recovery, my body rebels. Par for the course.
I know you guys aren’t used to hearing this side of me. This is the dark, pissed-off Liz I try to suppress with yoga, prayer, meditation, and probably denial. But I also cling to hope until this happens, then I have a day or two of being angry and destructive and I get it out by use of creative outlets like writing, so thank you for bearing with me and being a part of my recovery into sanity.
The thing that frustrates me the most is that I feel like no matter what I do, no matter how much control I think I have, I really have none. This is part of life with a chronic illness. Cut the offending organ out, it will attack what you have left. So, then, what do I do? I would still love to be a productive member of society. I would love to have a job, to possibly have kids one day, to go back to graduate school. I would love to stop getting knocked down every time I get up, make plans, and try to go on with life. I’m really really tired. 15 years is a long time to force yourself to be resilient, motivated, strong, ambitious. But, part of who I am is a fighter. So, I’m not going to stop. I’m not going to give up. I’m going to be angry for a while, and feel sorry for my shitty situation, but I’m going to keep doing the work I do with Girls with Guts. I’m going to try to help others in the same shitty situation by sharing what I’ve learned. I’m going to try to inspire hope and positivity even when I feel like I don’t have any left.
It’s invisible illness week, by the way. I don’t usually do posts at this time because I feel like it’s covered enough by others, but mostly, because I only write when I’m inspired to. The Great Bowel movement did an excellent blog post this week about what it’s really like to live with IBD and it was one of the best summaries I’ve read on the subject, so I encourage you to read it.
Life with an autoimmune disease is like the shittiest roller coaster ride you can be on. It beats you down mentally and physically, it fucks your mind because just when you think you’re in the clear, that you’re regaining some control, the other damn shoe drops. I told Rob, “Just when I’m planning to reschedule the GRE exam I was supposed to take in March that got delayed because of fistula surgery, just when I get the inkling that I might be in the clear, my stupid bowels remind me that they are in control, not me. It’s exhausting. It’s infuriating. And it makes me feel hopeless despite trying so hard to be hopeful.
So, now what do I do? I should mention that I DO NOT want to have another surgery. I’m 30 years old and I’ve had 10 surgeries related to IBD. What do surgeries do? I guess they buy me time? This one bought me two weeks. So, what do I do now that I’m sick again? Do I proceed with the J-pouch redo, fly back up to Cleveland, spend more of our savings on hotels and flights, have relatives come stay with me so Rob can go back to work, spend more time away from him and my dog. Then do it all again a few months later to have the takedown? OR do I get the pouch amputated, get my rectum and anus removed, sewn up, and say sayonara once and for all to more intestinal surgeries? Except, that’s not really fair either. The few people I know who have opted for the later route still have problems, so it’s not a guaranteed solution, you know why? Because there aren’t any. There are no guarantees, just things that buy you time, and right now, when I feel like I need to act, need to respond to my body telling me, “I’m sick again,” I have no idea how to fix it, because I don’t think I can.
So, I have more thinking to do, more decisions to make. I will be calling my therapist first thing Monday to get back on that train because I have to. I need some third party to help me decide and to help me through this. My poor family and friends have endured enough of this, and they will continue to. It’s not fair to them either and I feel as sorry for them as I do for myself. It has to be so hard to watch your daughter, wife, niece, BFF suffer like this for so long.
Again, I really apologize for being a downer today. Don’t worry, I’m not giving up, as I said before. I’ll schedule the GRE. I’ll still go to grad school, God-willing to help others in my situation. I’ll do what I have to do to survive because that’s who I am. I’ll get back my sunny disposition, I’ll be happy, I’ll be strong, but just for today, I need to be human and be sad and feel slightly cursed.
Thanks so much for listening guys. I really love this community and I’m so glad we can commiserate and support one another.