What Was Your Worst Flare Ever?
Last updated: September 2023
Flares: doubled-over, balled-up, all-consuming flares. The worst symptoms of Crohn's and colitis flare-ups can come in many forms – pain, fatigue, nausea, bleeding. Perhaps it involves hours of sitting in the bathroom. Or maybe it feels like an internal stabbing that just won't stop. Perhaps it lasts for weeks or months, or maybe it results in a hospital stay. Every flare is different, and everyone's symptoms vary.
But one thing is true for all of them: They're the worst. And they can leave you feeling desperate for people to understand just how horrible you feel, and even more desperate for some kind of relief.
So we asked our advocates: Describe your worst flare ever. How did it feel?
Your worst IBD flare ever
"I'm finally coming to the end of my worst flare, which has lasted about a year. I experienced a lot of the same symptoms I did in other flares, which included running to the bathroom, spending hours on the toilet, and essentially not being able to leave the house. I had immense pain and fatigue, and I felt like I was just waiting and waiting to get better the whole time. I felt completely out of control and beholden to my body's wants.
The worst part was trying to find a medication that would work. Prednisone did nothing, and Humira didn't do much either. Remicade, though, has made a huge difference for me. This was so different from my other flares, where mesalamine worked in a few weeks. The back-and-forth with medications made me emotionally tired and heightened how bad the flare felt." –Eshani
"It's hard to narrow down to just one out of the thousands of flares, but I do remember one early in my diagnosis. It lasted for days, and I ended up in the hospital with what I learned later was a block. It wasn't too bad in the beginning, with the normal rush to the bathroom, but as the day went on, the more I went. I kept track that day to a point, but I lost track after the 40th time. I stopped eating that day because my butt was bleeding and raw and, to be honest, I was exhausted. That didn't help, and the pain became more intense by the next day. I couldn't stop throwing up – almost every half hour or so. I took myself to the hospital and was admitted for an intestinal block that cleared after a few days." –Vern
"The worst flare is a time I’d rather not revisit. All I can say is that dark days are best forgotten. There's no sense in beating the drum of the past because everyone's body is different. Instead, let me describe what a bad day is like in the middle of a flare.
On a bad day, my gut hurts like a thousand knives stabbing me internally. I'm usually doubled over or balled up in pain. Bowel movements hurt. I bleed from my rectum. I sit on the commode for a long time because I don't feel like I can get up – like my body isn't finished emptying itself. When I do leave the bathroom, I feel exhausted. It feels like life is drained from my body. Sometimes I have a fever. And then there's the constant, urgent feeling to get to the restroom again. I don’t feel comfortable leaving my potty post.
This routine will continue until my doctor prescribes medication that brings relief. My most hated medicine is prednisone, but it works the fastest on tamping down the inflammation. So, most often I have to start a round of it to soothe the flare." –Traci
"My worst flare was actually my first flare, and it was a confusing and terrifying experience. It began with loose stools and then progressed into frequent, bloody diarrhea. I experienced urgency, which meant that I was running to the bathroom between meetings and classes. I was always afraid of what might happen if I didn't make it in time. On many days, I was going to the bathroom 12+ times. The mornings were when my symptoms were at their worst, and I would often spend close to an hour just using the bathroom. This meant I needed to get up earlier than usual to be able to make it on time to my classes.
I couldn't think about anything besides my symptoms and how horribly I was feeling. I struggled to focus at work and school, and I just wanted to be alone. It felt isolating and shameful, as if I couldn't tell anyone about what was happening to me. I've always been naturally thin, but the flare worsened that and made me lose weight, which made me feel incredibly self-conscious about my low weight around others. It truly felt as if my life had been taken over by this illness, and I felt desperate for any kind of relief." –Christal
"My son's worst flares started with him feeling bloated and constipated and more tired than usual. Then he would get intense pain in his abdomen as well as headaches and nausea. He would perseverate on his symptoms, which would raise his anxiety level. This anxiety is one of the reasons I started practicing relaxation techniques with him, whether following along with a guided meditation, listening to soothing sounds such as rainfall or waves, or simply sitting together in a quiet space, imagining we were walking on the beach or through a nature preserve. These techniques not only relaxed him but also helped him focus so he could better pinpoint exactly what was bothering him, rather than a vague 'I hurt all over' statement. This allowed me to give his doctors more specific information, which led to targeted treatment." –Jennifer, caregiver
Share your experiences with IBD flares
Tell us: What do your IBD flares feel like? Do you have a "worst flare ever" or most hated symptoms? Share in the comments below.
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