It was Valentine’s Day, 2017, just over four years ago now, that I was formally, and finally, diagnosed with an inflammatory bowel disease and nothing in my life has been the same since.
I spent the evening before preparing for my first colonoscopy. I had a place all set up with blanket and pillows halfway between the kitchen and bathroom so I could choke down large glasses of prep every 15 minutes then run to the bathroom after throughout the night without waking my wife. It was the first of many depressing evenings we’d spend apart because of this disease.
I was only 32 and far too young in my mind to be preparing for my first colonoscopy, but I knew something was terribly wrong with my gut. I’d been bleeding more and more heavily with every bowel movement up to 15 or more times a day for over a month before and between the pain, exhaustion, and fear I was left little more shell of myself.
The disease was already chipping away at my work performance, my relationship, and my sense of self worth. In that short time, I had started missing days at a time of work. I was unable to socialize with my friends and family. I was too tired to spend time with friends or family, take care of my home, or do anything of the things I enjoyed. It would be my first lesson in this disease. It doesn’t take long for it to strip you of everything.
Arriving at the doctor’s office my dignity was quickly stripped as my clothes we removed and I was wheeled lying down into a room to face doctor whom I’d never seen and who would see more of me than anyone had. I’m thankful for the sedation that came next and the memories I will never have.
I woke afterward, confused and hungry, in a small room with my wife waiting for me to return. She helped me dress and suffered my memory lapses through the last of the sedation. I remember only bits and pieces of what was said then. I remember being handed a packet of papers printed with images from inside my body in exquisitely horrifying detail.
I remember the words ulcerative colitis coming from the doctor and trying to connect the meaning of the diagnosis to images of deep red seeping through the inner wall of my large intestines.
Ulcerative colitis is a type of inflammatory bowel disease, similar to the more widely known Crohn’s disease. My official diagnosis is Ulcerative Pancolitis, meaning that my entire colon is chronically inflamed. This causes debilitating symptoms and, if untreated, can lead to life-threatening complications.
Since that Valentine’s day I have experienced some of life’s steepest ups and downs. There have been a myriad of treatments, procedures, and pills that all work for a time before the troubling but all too easy to dismiss symptoms return and I head straight back to square one. I’m still searching for a new and lasting normal that I can live with but as more years pass and more damage is done the ultimate and last line of defense approaches—surgery to remove my entire colon.
This may sound like a “cure” but I am assured that I would simply be trading one set of problems for another. Still, from here, life without a colon looks better and better all the time. Until then, there are steroids and immunosuppressants. There are meal replacement drinks, supplements, and probiotics. Until then I am simply surviving, but I wonder, at what cost?
To be fair to my body, most of the hardships I face aren’t all down to the healthcare system with its exuberant costs and many layers of bureaucracies. Most of what makes this disease hard to live with comes from society with its values and norms that when can’t be met place the failure squarely on the individual and names them inherently weak, broken, and attention-seeking.
The hardest part, in other words, is a lack of understanding on the part of people who do not have to fight the same battles I do.
The truth is, my disease is often invisible so in an effort to make my life—and the lives of those who suffer similarly—easier, I’ve decided to quit bearing this burden in silence. I’ve decided not to pretend I am normal or delude myself into thinking that I can keep up. I do not hide and I do not minimize. I advocate for myself. I ask for help and insist on rest. I make this invisible disease visible. I educate everyone around me.
So, in that vein, here are some of the ways inflammatory bowel disease has changed my life that I wish the world could see:
Pain
When I was first diagnosed, people were very sympathetic to the pain I was in but as the days of pain became weeks and months at a time, I noticed the comforting words waning. Someone at one point said to me, “If it’s everyday I would just assume you would get used to it.” You don’t “get used to” pain. It never stops hurting the same as the first time and as long as I am flaring it never stops hurting. I can push through the pain but you can’t imagine the energy and emotional toll that takes to complete everyday tasks though this.
Fatigue
It’s not the same as tired. It’s a kind of exhaustion that can’t be cured with more sleep, though the body tried. Drowsiness overwhelms me and like a someone who is starving and can only think of food, or severely dehydrated and can only think of water, my mind is often consumed by thoughts of sleep. My mind plots at work looking for dark corners to close my eyes in and I daydream about the moment I can go home and lay my head down. I’m often unable to fight off the drowsiness and days have gone by where tasks, events, and even quality time with my loved ones have to be put off.
Medications and Meals
Ulcerative colitis, though it is a disease that affects the gut, it is not a disease of the gut. It disease primarily of the immune system and this means that treatment includes both strict medication and meal regimens.
Most of my day is structured around my treatment and nutritional needs. I have alarms and reminders that tell me when to eat, when to take medication, when to take probiotics, when to drink water, when to take supplements, when to add fiber, and when to eat more. It’s a lot to remember, and there are days when I don’t want to live this way. It’s a lot and often it doesn’t seem worth all the effort when I still have debilitating symptoms.
Worse still, when you find what does work, that doesn’t mean it will work forever. Finding the right medication or combination of medications is a matter of trial and error and after beginning a new course it can take weeks or months to know whether a combination or strategy will fail and the process of trail and error must begin again.
Embarrassment and shame
I’m 36 years old now and have had at least 3 or 4 colonoscopies. I will probably have another before this year is out. I have given countless stool samples, sent emails to doctors describing my bowel movements, and submitted paperwork to my bosses explaining my symptoms in great detail.
I’ve used every kind of suppository and enema, cream and wipe. I carry a card in my wallet that explains that I have a medical condition and must be given access to a bathroom when needed. I’ve had accidents when I couldn’t get there in time and now carry a second set of clothes with me just in case it happens while I’m at work or out and about.
These sentences my gross some of you out, but this is my life. I often feel that I have no dignity left, that privacy is a luxury I cannot afford, and that there are whole parts of my experience and many emotions I have to keep hidden out of embarrassment.
Fear
There is so much that is unknown about this disease and without a cure it’s hard to look forward to a life that will look any better than it does when you are exhausted and hurting. I’m afraid of what this disease is doing to me. I’m afraid of what the medications are doing too. I’m afraid of being too much of a burden. I’m afraid of falling behind. I’m afraid of accidents. I’m afraid of food. I’m afraid of surgery. I’m afraid life will never be like it once ways and I’m afraid I will feel like this forever.
Losing your relationships
It’s hard to ask so much from other people. You wish you could be the strong and capable one and take care of others for a change. Over the long-term caring for someone with a chronic disease can be fatiguing in itself. This is normal. This is okay. I have to accept that on some level I do require extra accommodations and emotional care and that means others have to give a little more when I can’t.
I try to be mindful of how much I ask and how often, and only take what help is absolutely necessary. Still, there are months when the flares won’t end and the house is falling apart or my work is falling behind and I am forced to take more than my fair share of the rest rest and respite. In those moments I see the look on other people’s faces. I know they are wishing I was better, and wishing it wasn’t them that had to take on more for my benefit.
Losing yourself
Before my diagnosis, I enjoyed being somewhat active. I used to run and hike. I did simple body weight workouts at home. I went out with my friends. I hardly ever missed work and had a reputation as an exemplary employee who went well above and beyond. I was happier, funnier. I was enthusiastic, focused, and hopeful.
That version of me still exists somewhere. I see glimpses of her when a new round of steroids is started or moments when remission looks possible. When there are days without pain and I’ve been able to sleep for a time, she is there, reminding me that not all is lost, now or forever.
But on days when all I want to lay in bed, when the weight has been coming off and I still find food terrifying, when I’ve had to call out from work again and my wife is missing the person I used to be, on those days, I cannot even recognize myself or this life I’ve come to live.
Love and Community
Ulcerative colitis can be an incredibly lonely disease. No matter how you explain, no matter how much your loved one’s want to understand, no one can know what it’s like to live through what we do, not even our doctors. The biggest help I have found is in support groups. When I have questions, frustration, or fears, there are thousands of people all over the world ready to offer information, advice, and support.
In addition, it’s a credit to my coworkers, friends, family, my healthcare team, and my amazing wife that I have been able to work, love, and live through such pain, fear, fatigue, and shame. Without them I would not have been able to achieve the—admittedly few and far between—glorious months of remission I have known. It is through the love and care they have shown me me that I was able to love and care for myself. It is with them that I have been shown how to find joy in the darkest of times.
This World IBD Day, my heart goes out to all those who truly know what it’s like to live with this disease. No matter how severe your symptoms, or where you are in your treatment, I see you. I know your struggle and I know your bravery. I know how hard you are fighting and I hope you know that even at your worst, at your lowest, at that moment when you want to give up most, you are a warrior.
You are not invisible to me, and I hope one day we will all be more visible to the world.
Finish editing my review of Hannah Arendt’s Eichmann in Jerusalem: A Report on the Banality of Evil and my piece for World IBD Day. Enough words have been written now. Adding more will add nothing. Instead, focus on subtracting, rearranging, and substituting. Take this unorganized, unclear, and, probably, uninteresting mess and mold a readable post from both. Do not let perfect be the enemy of done.
Lisa Marie Blair 