this post was submitted on 10 Sep 2023
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Crohn's and Ulcerative Colitis

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This is a support group for people with Crohn's Disease and Ulcerative Colitis, and their familes.

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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.

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[โ€“] BackOnMyBS 2 points 1 year ago (1 children)

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! ๐Ÿ˜‹ 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.

[โ€“] MorganCS 2 points 1 year ago (1 children)

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.

[โ€“] BackOnMyBS 1 points 1 year ago

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 ๐Ÿ™‚

I'll definitely make a post if I go on Remicade ๐Ÿ‘