The title says it all. This is not meant to be a negative entry but instead an informative one. I’ll open by saying that since my remission and surgery, my quality of life has drastically increased and I honestly have not felt this well in years. However, I think it’s still cool to have the opportunity to educate people about Crohn’s disease.
First of all, Crohn’s is different for everyone. And every stage of Crohn’s is different for everyone. However, I believe there are three states of Crohn’s, based on all my research and my own experience. The two main ones are major-flare and remission. The third is a small-flare.
In short, a major-flare lasts a long time. It’s awful. It’s debilitating and people find it next to impossible to live a normal life. Pain, extreme pain, and other symptoms over take your life. Everything that can go wrong will go wrong in this stage. Again, it’s different for everyone, but this list of possible problems is not exhaustive but include: stomach pain, fatigue, fissures, fistulas, increase risk of cancer, even higher food intolerance, nausea, arthritis, weight loss, anemia, diarrhea, ulcers, rash, liver inflammation, and a whole slew of other issues. It’s not fun.
During a major-flare, it’s rare to get it under control without medical intervention. While anecdotes exist, once in this state, you look at your medical options.
The small flare is like this but shorter. It’s more intense than remission period, but may only last days or weeks, and can be taken down by easier treatment methods. I’ve had many small-flares in my life. They began to feel like a big flare, I felt panic, and saw a specialist right away. After a medical regime, usually a much less intense one, it’d disappear. Crisis adverted. Wahoo. Don’t have to write my life off for a year at a time.
Then comes remission, which if you’re lucky, is the default stage. You see, remission sounds like it’s all better. All gone. And many websites define it as such. But it only takes a little more reading to find “lessening of symptoms,” “less intense pain,” and “closer to a normal lifestyle.” Crohn’s is forever and it’s for life, until they find a cure. So we’re stuck with it, and our default is not a normal person’s default.
In the remission state, we still have Crohn’s Disease. And because of that, we get symptoms sometimes. We are more likely to get a stomach ache. We are more likely to feel fatigued. And yes, we still have less spoons than a healthy person. More spoons than when on a major-flare, but still a spoon shortage. In the end, the symptoms are less bad. And that’s what our default stage is. That’s what my default stage is. It’s not so bad.
However, it is true that during the default/remission stages, this is when you have the most control. When looking at altering diet, exercise, etc, this is when it’s most helpful. Because many of the symptoms you have can be affected by these things. While a healthy person may have fried chicken with no adverse affects, someone with Crohn’s could become ill, even when in remission. Now, everyone has different triggers. And it’s not true for everyone. Back to that Crohn’s is not a one-size fits all. The glove doesn’t quite fit on everyone here and there’s no quitting, even if we have a glass of OJ. I realize how crappy that pun was and I hope you were able to stomach it.
The truth is, all the terms can be subjective to the doctor, patient, and anyone on the outside. It’s a complicated disease, with a spectrum moreso than actual definitives. Some people on a major flare may work harder than healthy people, and still live a normal life. While someone in a remission or default stage of the illness are still unable to even work due to their other symptoms.
So in the end, that’s where I am. The default stage. The remission state. I’m still sick, but not as bad. I’m still tired, but not so bad. I still get stomach aches, but not so bad.
And I’m so happy with that. I’m so happy with not so bad. Because after all, it could be crappier.