Hi all,
I’ve had ulcerative colitis for 20 years now and mostly stay in remission with only 4 hospitalizations total. Still, I deal with UC difficulties on a regular basis, but don’t know anyone in my daily life that has IBD, so I hope this community takes off to have a community of other IBDers to provide and receive support. I’ll do my part to try to stay active here.
Thank you for posting! What types of symptoms do you deal with on a normal basis? For me I get cramping and minor abdominal pain on and off most of the time, and I’m usually constipated. Miralax has bee my friend.
Welcome!
You’re welcome, and thank you!
My near daily symptoms is urgency. When I have to go, I have to go. Also, I feel bloated 30/45 mins after eating until about 3-4 hours later, so I usually only eat about once per day when I know I’m going to be home or just relaxing afterwards, though I’ve been trying to have small light meals for lunch lately to help with energy and mental well-being. If you want to learn what I act like when trying to avoid an invitation, invite me out to a big lunch lol. According to a friend that was a therapist specializing in eating disorders, she said that I reminded her of people with ARFID, which is common among autistic people like me. I’m such a typical divergent! 😋 Lastly, about 3-4 times per week, I get that burning raw-skin sensation in my colon, almost always at the turn from my transverse to descending colon. All these are manageable, so I would say I’m fairly lucky when it comes to IBD severity.
That sucks about the pain and constipation, but I’m happy you found a remedy. Aside from the Miralax, do you have to take any medications routinely? I’m on Humira every week, which is fine, but comes with some drawbacks. One, I find myself postponing the dose because I’m so sick of stabbing myself in the abdomen. Two, I’m stuck needing refrigeration everywhere I since Humira only last 2 weeks at room temperature, so my trips are limited to less than 3 weeks. Still, the GI said that if Humira eventually fails, I can start getting Remicade infusions every 2 months, so that sounds nice.
We all suffer in our own ways, huh. I take humira every 2 weeks, and Lialda (mesalamine tablets) between 2 and 4 pills daily. I increase my doseage if I’m feeling crappy for a couple of days, and If I get to 4 without any improvement, that’s when I contact my GI doc.
Have you tried your thigh for the shot? I usually cycle through the 4 tummy shot zones, and 4 leg zones
I too am Autistic and ADHD too. I find it really interesting that there is a big correlation between neruodivengency and IBD issues.
If you do go on remicade, let me know. I was always hesitant to do so simply because of the time requirements.
Hi! Yes, the therapist that first pointed out my autistic traits to me said that the GI system has lots of nerve cells, so I think there might be something to out brain styles and IBD. Interestingly, my flares are all associated with prolonged, highly stressful experiences.
I used to do the thighs before. It’s a different deeper pain since it’s in the muscle. I haven’t injected there in years, but I remember preferring the lighted shallow pain in the abs. I could try the thigh again at my next dose just to check. Thanks for the suggestion 🙂
I’ll definitely make a post if I go on Remicade 👍
👋 Hello there, and welcome! I am also hoping to see this community gain some traction as well, as I’m in a similar boat as you - I also don’t really know anyone who has IBD. Which don’t get me wrong, I’m glad for as I wouldn’t wish it on even my worst enemy but it would be nice to be able to know others who can relate to what we’re going through.
Hi, and thank you! 😊
Thanks for sticking around. I too would love this community to get going. I’m going to post to see if anyone else has some ideas. The IBD groups on Reddit had no interest for Lemmy, and I even offered to let them be mods again.
Thanks for your support!
Of course! Happy to be here as this is definitely a community that I’ll pretty much always be passionate about 😅
