Crohn’s Deep Remission Achieved, Enter the Guilt

I wrote about being a bitter party of 1 and how remission felt like a lie. My IBD specialist ordered a pill cam and it sent back pictures of a healthier-looking intestine, but I didn’t feel healthy. Luckily, as time progressed, I began feeling healthier. Two years and six months later, I had a colonoscopy and wrote about it, too. Well, last week, I received the results — deep remission.

I finally reached deep remission

The high-level overview for deep remission is where your symptoms improve and intestines, lab work, and your pathology results look great. I meet the criteria.

Level unlocked. The Player gets an extra life. I wish!

Symptoms and inflammation can still be present in remission

There are different forms of remission, including deep remission. Someone can still be symptomatic while in remission and inflammation can still be present while in symptom remission.¹

Have you ever heard someone say, their scope looks bad but they feel fine? They exist.

I have one friend whose Crohn’s diagnosis happened during appendicitis and another whose Crohn’s was found during gallbladder surgery. I use this as a reminder of why it is important to have medical supervision during times of remission. You can feel fine, while your insides are not.

Feelings of fear and guilt came with remission

I know I should be jumping for joy at the good news. Crohn’s remission is a big deal. It’s been a heck of a ride to get to remission. However, once I arrived there, it felt very anticlimactic. There are a lot of feelings that come along with this news like fear and guilt.

It should be no surprise that the fear of losing remission is at the forefront of my thoughts. Right now, there aren’t many medical options left for me if the treatment I am on stops working.

A memory I flashback to often involves being at a restaurant with family and my bursting into tears. When the food arrived, I was overcome with pain, nausea, and urgency. My meal was not what I ordered and was blackened with spices. I panicked and then the tears just flowed. The waiter was gracious and took the meal away. This was not a usual happening for me; it was a first and thankfully a last. This is a memory I’ve never shaken and stokes the flames of fear that live within my head.

Guilt for my friends who are not in remission

While those days are thankfully behind me, I know that many of my friends are not as lucky. There is guilt with that. It’s unshakeable when you see and read about the struggles. I grapple with these feelings on a daily basis.

Over the years, I’ve had friends go into remission and have watched them struggle with this same guilt. Some of them have withdrawn from interacting with friends who are still very ill. And it’s not because they are selfish, it’s the complete opposite.

I have friends that are not doing well and want to so desperately help, but there’s nothing I can do. One friend, in particular, who has been struggling a lot lately, told me that I’ve given them hope for remission. The last thing I want is for them to give up.

Should you one day join the Crohn’s remission club or Crohn’s deep remission club, and in turn the guilt club... Know that you aren’t alone in this, either.

When you are ready, consider supporting someone struggling with Crohn’s or ulcerative colitis. This may be the lift you need.

Have you struggled with Crohn's remission guilt or watching a friend live in remission? Let's discuss it!