Crohn’s and Colitis – the Struggle is Real

Can I buy a bowel?

Wheel of Fortune jokes aside, living with IBD can be painful. It can be frustrating. Scary. Embarrassing. Agonizing…Soul crushing. I can think of a lot of gloomy adjectives to describe it.

And IBD often varies so much person-to-person – age of diagnosis, symptoms, response to medications, extent of disease. No two people’s experience is the same.

I’ve had quite the…ahem…colorful experience with IBD. There was a period of a couple years where I was extremely sick. Things are a lot better now. Not perfect by any means…but definitely better.

This post I’m writing is essentially a laundry list of the horrible things that have happened to me with IBD: symptoms, complications…just plain ol’ bad luck. If you are a member of Club IBD, hopefully few or none of these will ever happen to you. They might. But hopefully not.

I want to stress that I am NOT writing this to boast about the hard times I’ve gone through. And I’m not doing this to scare people. All I want to do is highlight some of the challenges I’ve faced so that you may relate to me better. When I say things like “I know what it’s like to suffer”…I mean it. And I would never say that I 100% understand another person’s situation, as we are all different. But believe me – I have been there.

Perhaps you can empathize with some of the difficult experiences below. Perhaps some of you are living them right now. There are things I went through that I would not wish on anyone. Not a single part of my life was left untouched by this illness. As I have said before, IBD can be relentless.

Where to begin…

It is summer of 2016. I’m 29 years old. I have just finished my undergrad degree. I’ve been in a healthy relationship of 7 years. It feels like the puzzle pieces of my life are starting to fall into place. Then, about a month before I am to begin my Master’s, I’m diagnosed with IBD (first Crohn’s, then later changed to UC). I had no idea what I was in for.

The first year after diagnosis I was mostly symptom-free. Any symptoms were annoying but manageable.

Year two things start to go downhill. I finish grad school in 2018, but it was a struggle because I am getting sicker and sicker. Flares start to put me in the hospital on a regular basis. I run the gambit of usual IBD medications. Lots of prednisone. I went through several biologics without much success. My health is up and down. And up and down.

In Jan 2019, I’m offered a new job working for a local Health Authority. I have doubts over whether I am healthy enough, but this is too good of an opportunity to pass up.

I put everything I have into the new position, but unfortunately it isn’t enough. My body had other plans. After about a year, heavy workload and a series of personal/family crises has run me ragged. My health deteriorates to the point where I am forced to step away from work. Thus began a sad period of many, many hospitalizations. Surgeries. More health crises. Complications. There were 2 solid years where I struggled immensely. IBD pushed me to the brink.

Now, almost 3 years post colectomy surgery, I am still trying to regain some semblance of a happy and purposeful life.

Choose your own IBD adventure

Below are the symptoms I experienced which are considered relatively common in IBD:

• Horrific diarrhea and, at my worst, running to the toilet 20+ times per day
• Passing large amounts of blood (cue iron-deficiency anemia)
• Severe abdominal pain and cramping, sometimes it literally felt like something was trying to claw its way out of my abdomen
• Terrible, often crippling, fatigue
• Violent nausea and vomiting that would last for hours or days (a defining feature of IBD for me) and was sometimes so bad it would require an ER trip for anti-emetics and fluids
• Rapid weight loss

Fun with prednisone

Oh prednisone, what a magical, terrible drug you are. For those who don’t know, it is a steroid which works wonders for knocking down flares quickly. But it can also cause a number of scary, uncomfortable (and sometimes truly bizarre) side-effects.

Unfortunately, I was on varying doses of prednisone for the better part of 4 years. Over that time, I experienced:

• Racing heart, shaking, restlessness, and severe anxiety
• Sleep disturbances, mood changes, food cravings, weight gain
• Skin problems and acne
• Puffiness
• Adrenal insufficiency and adrenal crisis (a potentially life-threatening low cortisol event) that would also result in a hospital stay
• Problems tapering off (would always result in a flare)
• Low bone density

Things fall apart

Several events and experiences really stand out as the worst parts of my IBD journey thus far:

• Well over 100 days (combined) spent in hospital over the course of 3 years (bonus: most were at the height of co-vid)
• PTSD-like nightmares and flashbacks from several traumatic hospital stays
• Colectomy/ileostomy surgery and recovery
• Recurring infections, rectal stump issues, surgery to fix a blockage (do not recommend)
• Peristomal ulcers and abdominal hernia
• Issues with mental health, illness acceptance and body image
• Joint pain and arthritis

Still standing

There are probably more things I forgot to put down. But that list is plenty long. There are other symptoms that are possible with IBD too, but which I have not experienced (eye problems, fistulas, etc.)

If you have dealt with any of the things I have mentioned in this post, or are dealing with them currently, give yourself a pat on the back. Seriously do it right now. You are a warrior. IBD symptoms are no joke. Sometimes we don’t give ourselves enough credit.

Most people have NO IDEA what it is actually like, and that’s ok. But when I was really sick, I didn’t really have anyone to talk to who truly understood. It felt terribly isolating.

So this post goes out to anyone and everyone who is suffering right now. If you are in a miserable place – emotionally, physically, or otherwise – I feel for you. Please be kind to yourself. I wish you strength, comfort and healing. Most of all, I wish you the self-compassion that, for the longest time, I did not give myself.

What’s on your mind?

In the comments section, feel free to share anything related to IBD challenges you have faced. Or are facing. Or are scared you will one day face.

Rant. Vent. Say anything you want to get off your chest. Even if it is just a few words or sentences. Your story matters…there is no judgement here.