caret icon Back to all discussions

Describe your worst flare ever. πŸ˜–

Here are some questions to get you started:
How did it feel?
Do you know what triggered it?
How long did it last?
What were your symptoms?
How did you finally get relief?

  1. My worst was soon after my resection. The flare started a few months later. So many BM's a day until it looked like all blood. I was stubborn and just lived with it until my work sent me home because I looked so bad. My mom came to visit and took one look and insisted I go to the ER. They immediately admitted me, and for the next 7 days I got IV meds. At discharge I got home and looked in the mirror and broke down. I weighed 116lbs and looked like a concentration camp survivor. I still was having 20+ urgent bm's a day and could barely make it through 20 feet from my bed to the bathroom. It was hell. At that point they had me on 80mg of Prednisone and I started to feel better. I had to stay on 80mg for over half a year because every time I reduced even 10mgs, I would flare harder. Total moon face but I slowly tapered over a year period a d found quasi-remission. I feel the huge amounts of antibiotics given during my resection hospital stay contributed to this awful flare. Biologics haven't worked so Lialda is my only med. CBD oil has helped me lately, wish I had found that sooner. So now, 10 years later, no flares like that one, but other issues like abscesses and fistula. I'm never in real remission because even when I feel well, my colon scopes look like a war zone (Dr's words). Wishing all of you the best

    1. I can totally relate to the concentration camp analogy. My worst flare took me down to 82lbs. I'm usually around 160lbs. I went to the ER close to a dozen times before I got that bad and they would keep me for 3 or 4 days and send me home. Told me I was having active inflammation and it was just a shitty part of Crohn's and to basically get use to it. Biologics and corticosteroids were of no help. Just constant pain and constipation so I quit eating entirely. Eventually my liver failed and flooded my brain with ammonia. I couldn't swallow or speak properly or hold my head up and I was having mini seizures. Obviously my mother had to call the ambulance and this time I wouldn't sleep in my own bed again for 4 months. Took 3 months just to get me healthy enough to do a small bowel resection. Because I was so skinny still, they had to use tension sutures on my incision. It was pretty gnarly. I also had a feeding tube (J-tube). I don't remember the first 3 weeks of being in the hospital because of the hepatic encephalopathy (liver failure, brain thing). From what I was told I am kinda greatful for that in a way but it's still scary having lost that much time however bad it was. Anyways after the surgery it took a month for me to gain enough strength to walk on my own out of the hospital. It was scary leaving after being there that long even though getting out of there was all I could think about most of the time. It was quite the journey and I had so many amazing nurses throughout it. I was not allowed out of bed for over 2 months so they had to take care of everything really. Nurses are amazing and I never realized just how amazing they really were until that trip. I am leaving a lot out but it is already quite long so I will leave it at that. I hope you are feeling ok and have a positive outlook for the future. It's all we really have. Cheers.

    2. Hi. Thanks for your reply. No, they didn't warn me. And I also developed Thrush and so I was also taking an antifungal along with the antibiotics. I am big on prebiotics so knew all the meds were messing me up. Take care

  2. My second flare...failed my Remicade and while I was away on vacation I began to notice I was bleeding. Ended up in the hospital getting a colonoscopy/endoscopy as soon as I returned and needed to sign papers in case I needed a blood transfusion.

    1. that does just sound awful! What a frustrating way to spend your vacation, in a flare that was so bad you ended up in the hospital after you got home. How are you managing currently? Sending you gentle hugs. -- Warmly, Christine (Team Member)

  3. My last "real" flare was last October and kept me on steroids for six months. Diarrhea, vomiting, pain all over, fatigue. I believe stress was a big contributor.

    1. Hi . You definitely are not alone in finding stress to be an IBD trigger. Our patient leader Courtney wrote here about how stress impacts her, with some of what she finds helpful to manage it: Is there anything in particular you find helps? Best, Richard (Team Member)

    2. Sorry you had to deal with such a bad flare. Stress is a huge factor to flaring for sure. I know for me personally, some of my worst flares was when I had intense stress. How are you feeling today? -Elizabeth (team member)

  4. I'm in it. I was in remission for 1 blessed year. Back to very urgent bloody diarrhea with mucus. More abdominal pain than I've had in 3 years, since being diagnosed. Way too much gas.

    1. Thanks, I hadn't seen this article. I've seen some "easing" but still have too many bathroom trips each day. And night. I'm very careful with food and drink, nothing adventuresome.

    2. Ugh, so sorry you are going through this. Are you on any medication to help? Diet change and lifestyle change plus meds is what got me feeling better. I can relate to this awful flare you are going through. It's horrible to have the terrible plain and the blood and mucous. You never get used to it. It's awful. Broths and soups helped me get through it. Also hydration, dehydration during flares is so easy. Sending strength your way. Big big hugs, Elizabeth (team member)

Please read our rules before posting.