Can You Die From Crohn’s Disease or Ulcerative Colitis?
While I work hard to provide you with accurate and up-to-date information at the time of publishing, as time passes some information may no longer be relevant or accurate. The field of medicine is a constantly evolving science and art. Thankfully! In 1951 a woman was given a lobotomy to treat her ulcerative colitis. That wasn't even that long ago!
This post is part of WEGO Health's Writers Month Challenge
Death is not a subject I enjoy discussing in the IBD community but I believe that difficult situations should not be hidden in the shadows because we are scared. In my eyes that does a disservice to patients and also shows lack of respect to the people who have lost their lives to Crohn’s disease and ulcerative colitis whose memories should live on through the people that loved them.
Today’s post is part of a month long writing challenge and today’s promt is: Write about Life and Death.
Why We Are Faced with Thinking About Death
I think that if you live with a severe chronic illness that death has to cross your mind at least once or twice. The first time I saw the amount of blood I was losing through my bowel movements I was scared to death, of death. This was not right; this was not supposed to be happening! I was a kid and that blood scared me.
I’m bleeding internally, what do I do? Am I dying?
Since then I have had real circumstances that have actually brought me close to death. I spiked a fever of 106F and woke up in the ICU days later with no recollection of what happened; I had a blood infection that I got from my PICC line. I have had to be rushed into emergency surgery 3 times total in my lifetime. I’ve battled sepsis from pyelonephritis twice.
I have been at risk for Refeeding Syndrome, I have had a dangerously low BMIs from weight loss, and I have needed multiple blood transfusions. I have lived with central lines and on TPN that both come with big risks. When these things are part of your life you almost have no choice but to think about death.
People My Age Don't Think About Dying. They Feel Invincible; Like They Have All the Time in the World
We as human beings, sick or not, know that at the end of life comes death. If you have a chronic illness and it’s severe I think you are forced to think about death more often than the average person. People my age don’t really think about their mortality because they usually feel like they have all the time in the world.
So Can You Die from Inflammatory Bowel Disease?
When I see this topic brought up in our community the discussion usually gets heated and people passionately answer one way or the other. As I read through the answers I have to admit that I become sad and angry with my IBD community. I see people respond with things like,
No! I have chosen to beat IBD and not let it kill me!
As if everyone else just gave up. It makes me mad thinking about my childhood best friend Jess who passed away from complications of a surgery she had for her Crohn’s Disease. Or my friend Beth whose port developed a large blood clot around it and it ended up killing her. Also my friend and co-counselor from Camp Oasis, Katie who ended up with Lymphoma and passed away. None of these three dear friends of mine died because they didn’t choose to “beat IBD.” It wasn’t because they didn’t try hard enough, pray hard enough, or think positively enough. That isn’t how life works.
So can you die from IBD? You could die from inflammatory bowel disease, but it isn’t likely.
When these things are part of your life you almost have no choice but to think about death.
An old study that looked at causes of death in IBD patients in Rochester NY from 1973-1989 found that 68% of CD patients and 78% of UC patients died from something other than IBD. You can see all of the study results here. Important to keep in mind that this was before biologics were being used to treat IBD so it does not include side-effects that can occur because of those medications. However, while biologics have been shown to cause cancer and some other serious side-effects in a very low percentage of patients with Crohn’s and UC the death
rates and surgery rates in IBD have dropped since their use. In more recent studies we see that certain things increase the risk of mortality in inflammatory bowel disease. Emergency surgery compared to planned surgery has a higher risk of post-op mortality. Prolonged corticosteroid use has a higher mortality rate compared with Anti-TNF therapies.
We see a decrease overall in surgery in IBD as time progresses. In the past the mortality rate was higher in IBD than it is now. Early diagnosis, safer and more effective treatments, and therapeutic drug monitoring most likely a significant part of the reason. With the introduction of biologics for the treatment of IBD we have learned about mucosal healing and have begun to move away from clinical remission being the only goal in assessing how well a patient is doing. We have adopted Treat to Target in IBD, know that symptoms and disease activity need to be approached as two separate things, and aim for things like histologic remission and maybe even transmural healing. We want to treat fibrosis better, dive into the microbiome and see what we can figure out for IBD patients there, and so much more.
In the past it was significantly more common to end up with Short Bowel Syndrome as a Crohn’s patient from needing several resection surgeries. When steroids and only a few other medications were the only options surgery happened a lot more often. It was almost expected to see moon face in a room full of patients but that would be very unexpected today.
All that to say that dying from IBD can happen but it is rare and a lot more uncommon than in the past. I think it’s so much more important (and healthy) for us to focus on life and not the ‘what if’s.’ All we can do is do our best.
I often think about how much or what I should say about death and IBD here. Part of me doesn’t want to talk about it because I don’t want to scare people but I also feel like it shouldn’t be ignored. The severity of IBD often gets down played and I have always wanted to do my part at raising awareness about it’s seriousness. Not like – IBD is so serious YOU COULD DIE!!! Rather I want people to know that IBD is a spectrum of diseases ranging from mild to severe and though not likely, a small number of patients can and do lose their lives because of it.
Honoring life: Three Wonderful friends
Because today’s writing prompt was to write about life and death I would like to write about the lives of the 3 friends I’ve lost due to IBD and how they impacted my life. It’s a long tribute so don’t feel like it’s rude not to read. I’m writing it more for myself than anyone else.
worshiping heathen on the fast track to hell in a hand basket paid off and my parents finally allowed me to go to public school starting in 8th grade. Jess and I grew up putting Sun-In in our hair, went to summer camp together, and stocked our Caboodles with only the best Lip Smackers. She taught me which brands of clothes were cool – Jordache and Guess jeans and Espirit and CK tees. We read Sassy and YM magazines together and talked about boys. We washed our hair with Teen Spirit and graduated from Love’s Baby Soft to Elizabeth Arden’s Sunflowers until we got really mature and used GAP perfumes (but not the grass one, NOBODY liked the grass perfume). You know, 90’s girl stuff.
I was diagnosed with IBD as a child and she wasn’t diagnosed until we were adults. As you can see in the first picture I was always behind by a lot in growth and development compared to others my age. We were only 5 months apart. I loved Jess but as each year passed it was evident we were growing apart. Not because we didn’t like each other but because we were growing up into ourselves which were two very different people at the
Jess was my childhood best friend. We had the kind of friendship that any 90’s girl could hope for, complete with BFF necklaces of course! We met when we were 9 years old during the summer after 4th grade when my family moved to a new house in a new city. We spent summers riding bikes and swimming in the pool in my backyard or at the one at our neighborhood’s clubhouse. We rode the bus together where she’d get off at the public school and I’d continue on to my tiny religious private school. At school we’d write each other notes folded the most complicated ways with W.B.S (write back soon) and other important acronyms written on them. Some doodles of yin-yangs and the Stussy S too for good measure. Jess was my ticket to meeting cool public school kids until all my begging and promises that I would not turn into a devil
time. I always felt significantly behind her and not just in my delay in growth and puberty onset. She began showing an interest in boys much sooner than I did and I could not have cared less about them but I went along with it anyway. She was confident and popular and I was awkward and had the world’s worst self-esteem. While I could make her laugh hysterically when we were younger as we became teens she pulled me aside to tell me that I was embarrassing sometimes. It makes sense now… I used to wear a sombrero to the football games where I’d dance in the stands and stick my head in the marching band’s tuba player’s tubas while I told everyone that I was the “Fool of the Stands” and would be back next week. I also used to wear this teeeeeeeny, tiny top hat on my head.
Embarrassing? I see her point. haha! We drifted in the middle of 8th grade and by the time we were in High School I rarely saw Jess but we never stopped being friends. It’s just one of those things that happen growing up.
Jessica and I reconnected in our early 20’s and by that time she had been diagnosed with Crohn’s disease and we were able to talk about our experiences with IBD. We met for lunch and had a great time talking about the good ol’ days. Jess ended up having surgery and passing away from complications in 2007. I had my first surgery the following year at the same hospital with the same team. I really wished I had her there by my side. Jess was a great friend. I can’t imagine my pre-teen and teen years with anyone else. She laughed at my jokes and silly antics, loved me, and supported me. We had epic 90’s summers. The kind of summers without cell phones and the internet. Just us and our bikes and the world to explore. She called my mom her mom and she loved my baby sister as her own sister. Her brother and my brother are still friends. She taught me all I needed to know about growing up and made my awkward puberty years a lot easier to handle.
during difficult times and would get mad at us for it we recognized that when you’re in the hospital fighting for your life and clinging on to any hope you have that isolation sort of happens. For that reason we never questioned each other’s silence or prolonged periods of time without hearing from the other and were able to pick up right where we left off, no questions asked. The two of us also grew close to a few other girls and in 2013 we all met up in person for a weekend. Though it was just a few days we had the best time together. Both Beth and I had been discharged from the hospital the day before doing everything possible to make this trip we had planned. I practically forced my doctor into letting me out of the hospital to which he wasn’t happy about but he knew there was nothing that would keep me there. I had to stop my TPN that night because I did not have the kind of health insurance
Beth and I met online about a year after I created Inflamed & Untamed. We quickly found out that we had so much in common so we called each other our twin. We were both diagnosed with UC originally, had J-pouch surgery and later found out we had Crohn’s disease. Aside from IBD we had a lot in common about our lives, who were were as people, and how we approached life with chronic illness. We just got each other in a way no one else could. We didn’t know anyone else with IBD aside from ourselves that had spent 6 months (me) to a year (her) in the hospital because of severe complications. We were able to discuss that very unique and isolating circumstance with each other. While many of our friends didn’t understand our silence and withdrawn nature
to cover me if I wasn’t inpatient. Beth was able to stay on her TPN so she traveled with it. Our weekend with our friends was the perfect weekend for people like us, people with similar health circumstances. We pretty much remained in PJs and comfy clothes and just had a blast being silly and hanging out in the living room of our friend Mallory’s house. Not long after Beth ended up in the hospital for over a years time. She had been discharged here and there but ended up back in within a matter of days. She fought fevers, infections, short bowel syndrome, and so many other things that contributed to her health status. On May 19, 2015 (World IBD Day of all days) we found out that Beth had a blood clot and was in very poor condition.
I had this overwhelming feeling of grief. Every other time she had been in a dangerous situation I always had hope that she’d make it through it as she always did but this time it felt different. Somehow I knew I was going to lose my friend. We were able to send a few texts to each other and share our thoughts. She declined rapidly and on the 21st Dan broke the news to me that she was gone. This occurred right before we had another planned trip with our friends to get to. Though I only knew Beth a few years the impact she had on my life is as if I had known her forever. We may have only met in person once but our texts and other communications allowed us to form a very strong bond.
Camp Oasis was such a special place for the two of us that no matter how bad we were feeling we did everything possible to be there and we made the absolute most of that week. I am still so incredibly proud and amazed by Katie for that week. She danced on the stage with me and our campers in our 80’s theme outfits for the Mock Rock event WHILE infusing her chemotherapy. She did everything else she possibly could at camp with a smile on her face. Even though she was infusing chemotherapy while she was there and had this very scary diagnosis of cancer to deal with she was so giving of herself to others. She focused on making sure our campers had a great week and focused on being a wonderful friend to all of us other counselors.
I never imagined that only 3.5 months after camp that she would be gone. I was able to visit her in the hospital
I met Katie my first year at Camp Oasis in 2009. She was the first person to talk to me and make me feel welcome. In 2011 she messaged me on Facebook while I was in the hospital to let me know that she had been diagnosed with cancer. She said that her doctors couldn’t be 100% sure that her Lymphoma was caused by her IBD medication but that it was likely. A few weeks later we were back at Camp Oasis and we were paired as co-counselors. I had just been released from the hospital, still had my PICC line in, was on TPN, and was tapering off steroids. You can actually see my PICC line cover in one of the pictures to the left. Katie came to camp and was attached to a fanny pack that was infusing her chemotherapy. As you can imagine we made quite the team!
with another one of our close friends and that experience is etched into my brain. I don’t think it’s something I want to share here. Before Katie’s funeral a bunch of us camp counselors got together to create a scrap book for her family because we knew how special Camp Oasis was to her, just like it is to the rest of us. The following year at camp we planted a garden for Katie while listening to her favorite band and eating her favorite snack food: pickles! Since then we have had to add 2 more people to our memorial garden at camp. Every summer since I have always found some quiet time alone at camp to go visit Katie’s garden and think about her. She was a wonderful part of our camp family and will always be missed.
Without coming so close to death myself I don’t think I would appreciate life in the way that I do. I love life; it’s pretty rad! All of us will have our last day. Until then I say we make the most of our time here. Let’s cherish the sunshine on our faces because we are able to feel it. Let’s be thankful for the things we have. Let’s love the people in our lives and let us be remembered for the people we want to be remembered as.
This is our time, right now, here on earth. Every time someone is taken away from me I am reminded just how short our time is. I wonder why I have been so down about things that actually don’t really matter and I try to remind myself that life is too short to live hating myself. I remember to be a better me.
I made my friends stop the car so I could get out and appreciate this sunflower field while we were on a weekend vacation together. I had been in the hospital 3 months that year and had my 3rd emergency surgery. I was so happy that weekend. I took a long walk alone along the coast of Lake Michigan appreciating the world around me and the people I had with me. If anything having a severe chronic illness teaches you the value of even the little things.
This post was edited on 7/22/2019 for appearance, grammar, and clarity, as I transfer my site from Tumblr to WordPress and rebrand Inflamed & Untamed.