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Horrible Flare-up


Tue, August 03, 2021 7:04 PM

Hi all, 

Firstly, just want to say how grateful I am for this forum and for all of us having a communal place where we can feel less alone.  My name is Dave and I was diagnosed with Crohns when I was 20 years old.  I ended up developing a fistula as well at the time and lost considerable weight so had a resection which led me to years of relief and remission.  Fast forward 14 years (I'm 34 now) and have recently begun experiencing symptoms again.  My gastroenterologist put me on Stelara and I've been doing injections every 8 weeks about 10 months now.  It's hard to say if it's helping -- right now, it assuredly doesn't feel that way. 

I woke up yesterday with a strange and itchy rash underneath my chin which I just assumed was related to shaving or an allergic reaction.  But as the day went on, I noticed my stomach disagreed with me more and more throughout the day and I began experiencing those all too familiar "contraction-like" waves of pain.  At first, they were manageable and I thought that perhaps I had even had too much dairy or something but as the day and night went on, I'm in Day #2 now of extremely painful flare-ups that are debilitating.  I'm afraid to eat.  I made myself a smoothie this afternoon thinking it would be an easy thing to digest and have been sipping on coconut water throughout the day to try and stay hydrated.  When the waves of pain come, it makes me nauseous.  I worry that the pain is an indication that I'm developing a fistula or a fissure or something else.  I hate the way the pain also saps away my presence -- I feel in a fog and just totally lethargic.  My stomach feels so bloated that even walking is such a tender exercise as I can feel each and every footstep all throughout my abdomen.

Reading some of the posts, people talk about using cannabis to help sleep and to deal with the pain.  I think I might try it although, I doubt it would be to eat because at this point I'm too afraid to put anything in my stomach.  Although, I know that tomorrow if my symptoms are still ongoing, I'm going to need to find a way to eat even if it's drinking Ensure.  I have an appointment next week with my gastroenterologist and am glad that I'll be able to speak to her about this most recent flare-up; it's probably the most severe one I've experienced since I was first diagonosed in 2007.  

More than anything, this post makes me feel slightly more connected and a little less alone in knowing that others have to suffer through these debilitating symptoms too sometimes.  I'm hopeful that the Stelara will make a bigger difference going forward and think I need to also consider trying to develop some mindfulness practices and carving out time for stress relief in a way that perhaps will alleviate my symptoms.  

My wife and I are expecting our first baby in 7 weeks and I panic when I think of trying to manage a flare up like this amidst being a new father and trying to support her and my son once he arrives.  

Thanks all for reading and hope you're staying healthy and are taking care of yourselves. 
 

Best, Dave

FPO pianoman526
Joined Nov 19, 2020

Sun, April 10, 2022 12:09 PM

Reply posted for pianoman526.

Dave,

im really sorry to hear what's going on with you. I have UC and I've been in a 3 month spiral and it's awful. I was on entyvio for a couple years and stopped working for me so I too am on Stelara for the past 2 months. 

The gut wrenching pain is very tough to work around but I would encourage you to try Cannabis Gummies. That has been the only thing to stop the pain and let me feel normal for a few hours. I realize there is a stigma that goes along with edibles or smoking marijuana but it works for me. I'm a business leader and was not doing drugs in High School or College so relying on the THC version of gummies was a nerve racking because I didn't want anyone to know. Now, I could care less because I'm not in pain when I take it! Most people don't know their threshold but I would tell you to start with 25 mg and then bump up to 50 mg. If it's legal in your state that's the numbers of mg's I would ask for. 

I wish you the best of luck and I too feel your pain and it's awful. 

FPO nwarner1
Joined Mar 21, 2022

Sun, April 10, 2022 12:09 PM

Reply posted for pianoman526.

Dave,

im really sorry to hear what's going on with you. I have UC and I've been in a 3 month spiral and it's awful. I was on entyvio for a couple years and stopped working for me so I too am on Stelara for the past 2 months. 

The gut wrenching pain is very tough to work around but I would encourage you to try Cannabis Gummies. That has been the only thing to stop the pain and let me feel normal for a few hours. I realize there is a stigma that goes along with edibles or smoking marijuana but it works for me. I'm a business leader and was not doing drugs in High School or College so relying on the THC version of gummies was a nerve racking because I didn't want anyone to know. Now, I could care less because I'm not in pain when I take it! Most people don't know their threshold but I would tell you to start with 25 mg and then bump up to 50 mg. If it's legal in your state that's the numbers of mg's I would ask for. 

I wish you the best of luck and I too feel your pain and it's awful. 

FPO nwarner1
Joined Mar 21, 2022

Sun, April 03, 2022 4:07 PM

Reply posted for rcchronic.

Hello Dave, my name is Heather I got diagnosed with Crohn's 
disease in 2015 a while after my husband and I moved to West Virginia. I have a gastroenterologist in Charlottesville, Virginia.
She put me on an entyvio infusion medicine that is only for patients with Crohn's disease and uc and it has been working good for me. I go to Davis hospital's day surgery department to receive this iv infusion medicine every 8 weeks. There are commercials for it on tv that is how I found out about it when I and my husband were visiting my mom in Virginia a few years ago in 2019. I told my gastroenterologist about that she said it would be good for me to be on it. I also exercise as well to help remain in remission. I had a colonoscopy on the third of last September and it was a gold star exam my gastroenterologist told me after a full woke up from the anesthesia. So please give the entyvio IV infusion medicine 
a try and exercise as well.
sincerely;
Heather

FPO midnight0675
Joined Apr 3, 2022

Sun, March 06, 2022 2:59 PM

Reply posted for pianoman526.

Hi everyone, 

This is my first time posting on here. I am 23 now and I was diagnosed with Crohns at 12. I was on 6 mp for a long time and my doctor took me off of it at the start of the pandemic. I have been off medication for a while and I am miserable. I am starting Humara after a long battle with insurance. 


My current symptoms are as listed : cramp like pains, back pain, weight loss, vomiting, nausea, low energy, insomnia, depression and lots of anxiety. 

Just wanted to post to see if anyone is having similar problems. This is the worst flare up I've ever had. 

FPO rcchronic
Joined Mar 6, 2022

Thu, November 25, 2021 11:45 PM

Reply posted for pianoman526.

h

FPO killersmile
Joined Nov 25, 2021

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