Life with Crohn's
Disclaimer: If you are reading this and dealing with ANY health related problems I am NOT recommending you take the same unconventional approach as I have in my battle with Crohn’s disease. Any changes you wish to make in your care plans should be done in partnership with the team of qualified healthcare providers who treat you.
What does it feel like to have Crohn’s disease?
While the last several years have largely been a success I’ve still had some pretty intense moments. In August of 2018, almost a year and a half after pinpointing an ingredient that contributed to the worst of my Crohn’s symptoms (bleeding) - I began to flare again. From early August through mid October I continued to bleed causing my hemoglobin levels to drop from a baseline of 15.9 grams per deciliter down to 9.3 (and eventually down to 6.2 as you’ll read below).
I’ve selected a couple of journal entries that show me at the worst of my last major flare. I’m sharing this with you today so that if you know someone who has IBD you can better understand what they might be going through.
9/5/2018
I’m sitting at my desk at work trying to focus. I’m incredibly drained. I know I should be responding to emails, planning out my team’s next steps on some very important deadlines on the horizon, or be active in any of the 10 meetings that are on my calendar but instead I sit there unable to even lift my arm to reach my keyboard. All I can do is sit and stare at my computer screen. “I just want to lie down”, I tell myself. I am breathing very deeply almost as if I just finished a strenuous workout but all I’ve been doing is just sitting here. My body feels the weight of my burden - I have Crohn’s disease and I have been in the middle of a flare up for the last month.
I begin to think through what could have happened to make me feel this way. I was eating what I thought to be a clean and balanced diet so I should have had plenty of energy. I was doing my best to keep up with my workout routines so that I stay healthy. I had been largely avoiding my known trigger foods (well, not entirely…) and had just gotten some blood work done showing that my vitamin and minerals levels (at least those I had tested) were all in the normal range - I should have been the picture of health based on the common definition. I was doing all of the right things - but still I felt drained.
As I sat there a wave of emotion came over me and I tried to hold back the tears - “I just want to be healed! I just want to be over this.” It was only the middle of the day but I had already gone to the bathroom 5 times.
I dialed into a conference call for work but just a few minutes into the call my stomach begins to churn again… “Ugh!!”. I was leading the call so I couldn’t just get up and leave could I? I tried to hold out hoping that the pain and intensity in my stomach would die down. I dug my fingernails into my arm hoping the pain in my arm would minimize the pain in my stomach but it was just too much. I had to do something! Without telling everyone where I was going I put the phone down and got up to walk to the restroom. As I started walking towards the bathroom I realized something was different - I wasn’t going to make it. My walk turns in to run but it was too late...
Now it’s a very humbling experience to be 37 years old and to have an experience like that. To make matters worse I had to walk across the entire building searching for a free bathroom while smiling to everyone I passed like nothing was wrong - all three bathrooms I went to were completely full. I finally decided to wait the third bathroom out. I cleaned up as best as I could but knew I needed to go home to change and clean up properly. I checked my calendar and knew I’d miss at least one meeting but I could take another call from home. I texted my boss I wasn’t feeling well and quickly left the building. I still don’t know what everyone thought when I disappeared off that phone call…
9/12/2018
I’m sitting in the car waiting on a jump start (yes, my road trip to Florida started with a dead battery). I was ready to leave at 5:30 am but it is now 6:30 and I’m still waiting on help to arrive. The very high ragweed counts are at the peak of their day right now and maybe it’s all in my head but my body feels heavy and I’m starting to get a headache. Is it also harder to breathe now then it was just an hour ago when I was inside getting ready to leave?
As I sit there waiting the oh so familiar pressure and pain begins to build in my core. I run back inside and dash into the bathroom barely making it before having an accident. Yesterday I went to the bathroom 11 times. So far at 6:36 AM it has already been twice. I hope I don’t have to stop that many times on my trip down to Florida today. As I flush (sorry for all of the details) I look at the pool of bloody diarrhea in the toilet. “It would be great to finally be healthy again - just to be normal again” I say to myself. “I’m 37 years old - I am way too young to have to deal with an ongoing health issue”.
Hospitalization:
By the middle of October I was able to get my symptoms back under control and thought I was in the clear but two weeks later...
I had just come back from vacation with my family (we went back to Florida again - ha!) when I developed some of the worst bleeding I’ve ever experienced. I woke up at 11:15 pm on a Tuesday evening with intense stomach pain. I ran to the bathroom and instantly could tell something wasn’t right - I looked in the toilet and was shocked by how much blood I had lost. After almost passing out, I went back to bed, but within minutes I was in the bathroom again losing significant amounts of blood! The next day I had five more similar experiences - here is my journal of what happened next.
10/24/18:
On Wednesday night after I went to bed, I woke up around 10:45 pm and needed to go to the bathroom again. I took three steps into the bathroom and passed out into the closet. I don’t remember exactly what happened next but I woke up in the bathroom about six feet away with my wife hovered over me on the phone with 911 - she was frantic. When she found me I was lying on the ground unresponsive, as white as a ghost, and was breathing very rapidly. When I regained consciousness all I could think to say was “What happened?” I looked around and saw I was lying in a pool of blood which had somehow splattered on the cabinets, the bathtub and even the wall which was several feet away. I moved to the toilet so I wouldn’t be laying on the floor and noticed that there was a trail of blood from the closet to where I was now. I must have passed out twice but I didn’t remember the second time! It looked like a scene straight out of a horror movie.
I was exhausted! I felt so weak that I closed my eyes and laid my head against the wall unable to hold it up on my own. It was at that moment I realized this was really bad. I started to blackout again but was able to maintain consciousness at least in that moment. Then the thought crossed my mind… “Is this the end?”
The paramedics showed up and they helped me on to the gurney and locked me in the ambulance. One of the paramedics leaned over to me and said that he knew exactly what I was going through. My initial though was, “Well, not EXACTLY!”, but he then told me that he had Crohn’s disease too and that he has had to call 911 three times in similar situations. It was very comforting to know that the care team supporting me knew exactly how I felt in that moment, but it also is frustrating knowing others have gone through a similar ordeal. We need to beat this disease!
What happened next:
Over the next 24 hours I passed out 7 times, was given 5 bags of IV fluids (due to major fluid loss and electrolyte imbalances), and a variety of intravenous medicines to get my symptoms back under control. After a two night stay in the hospital, I was discharged and went home to rest.
That evening however, just a few hours after discharge, I began bleeding heavily again and was rushed to the ER with a very similar experience the next morning. In the two days that followed my hemoglobin count dropped to 6.2 which was over 60% lower than my normal levels (a level I’m sure most providers would call critical). After a series of blood transfusions and another 4 and a half days in the hospital my hemoglobin was back at 8.0 and I was allowed to go home.
When I finally made it back home I was a mess. Here was my journal entry from the day I got home.
10/31/18
This was me on the way home from my 2nd hospitalization - I was drained!
I just got home from my 2nd trip to the hospital (I’m getting emotional writing this now) and received a warm welcome from my kids and in-laws. It was great to see them again. It’s Halloween and they are all dressed up ready to go out trick or treating. Their excitement made me happy. I had planned to dress up with them but that wasn’t going to happen this year. As they left the house with my wife and in-laws, I sat at the kitchen table with my dad and broke down. I had been surrounded by people for seven days but now that I was home and everything was quiet I began to process all that had happened to me over the past week.
I was scared. What if I start bleeding again tonight? What if this never ends? What if I can’t get back to normal? The first time I was discharged I assumed everything was going to be ok, but within a few hours of being discharged I was back in the hospital again. Yes, I was very thankful for my caregivers at the hospital and I couldn’t have survived without their care, but there was no way that I was going to be able to mentally survive another hospitalization.
How the story ended:
Thankfully the bleeding stopped and my body began to heal but the emotional and physical damage was already done. I had lost 12 pounds in 12 days, dropping to 145 pounds after my two hospitalizations. This experience taught me how valuable it was to avoid triggers.
As mentioned in a previous post I have an egg allergy - an allergy that causes gastrointestinal bleeding in me. The last day of my vacation with my family I decided it would be ok for me to “cheat” and eat an egg sandwich (My exact words: “I’ll be fine, it’s just a small sandwich - it’s not 40 eggs”). Eating the egg sandwich itself didn’t put me over my tolerance but it primed my immune system for what happened next…
A day and a half before the bleeding started I received a flu shot (which has egg protein in it). My system freaked! Injecting a protein directly into your blood stream can lead to a much stronger reaction than when you digest something.
Sadly the morning I was discharged from my first hospital visit they gave me eggs for breakfast which I ate instead of reminding them of my allergy. My body was already at my tolerance limit and wanted that new egg protein out quickly.
I wasn’t making smart decisions and I paid greatly for it. I needed to start getting serious about avoiding my triggers and I needed to figure out if I had any others.
Update: April 2022
It's weird going back and reading these journals again now. I've come so far and have experienced amazing GI health over the last few years that this all seems like a bad dream now - a distant memory - but I still get emotional reflecting back on the experience. I guess it goes to show how far I've come in my journey and how far you can come in your journey too - don't give up!
Original note:
This period in my life was kind of the perfect storm of events for me. Not only was I dealing with health problems but I was also dealing with drama at work and in life. The people around you don't really understand what it is like living through an IBD flare. I'm sure I looked like a slacker at work and like I wasn't meeting expectations; I know my kids didn't understand why I didn't have the energy to play with them; even my wife (who understands more about how it feels for me than anyone else) wasn't able to live a day in my shoes... but I felt awful during that period of my life. I'd try and put on a smile and I was determined to do the best I could for everyone but there were days and moments I just couldn't.
This is the real challenge with IBD.
The bleeding that started in August was from a reaction I have to corn - at that time I had not identified corn as an ingredient that contributed to bleeding in me and I continued to eat it unaware of its impact.
