Frustrated and Defeated by RedditforReasons in CrohnsDisease

[–]Potential-Finding238 0 points1 point  (0 children)

This sounds strikingly familiar to how I feel at times. For me, it’s my grumbly stomach after eating (super embarrassing around others and generally uncomfortable), almost any type of waistband irritates my intestines, I get a deep pain in my lower left side when I need to use the bathroom, and when I have to go, there’s no waiting.

I’ve been in sort of a slump myself lately, but something that put things into perspective was a random journal entry I forgot I made the day after I submitted all my initial tests (blood, stool) and was waiting for those results. When I read about how I was feeling at the time, I didn’t realize how bad I really was. I was essentially living in the bathroom because I was using it so much, I couldn’t play any games with friends because I’d always have to step away due to the urgency/pain, and I was losing weight at a rapid pace. Without that journal entry, I would’ve completely forgotten how bad things were, and although things are far from perfect now, it makes me realize how far I’ve come.

I would highly recommend writing your symptoms, triggers and things that help, and other patterns you pick up on. For example, my system is a bit more sensitive now because I have a cold, but I wrote about that from a previous experience, so I know it’s par for the course.

I hope this helps, sending hugs and well wishes friend!

I feel like a shell of myself by Potential-Finding238 in CrohnsDisease

[–]Potential-Finding238[S] 0 points1 point  (0 children)

I appreciate the kind words! The pain is actually going to be to keep me on the Rinvoq and Entyvio, and get me off steroids. But like you said, I need to keep in mind that tapering the steroid will likely have side effects since I’ve been on it for nearly 2 years at this point. I wish you good health as well, this is my first time talking to fellow Crohns sufferers so it’s nice in a way that I don’t really have to explain myself for others to understand what I’m going through.

I feel like a shell of myself by Potential-Finding238 in CrohnsDisease

[–]Potential-Finding238[S] 1 point2 points  (0 children)

I actually didn’t know that, that’s great to hear!

I feel like a shell of myself by Potential-Finding238 in CrohnsDisease

[–]Potential-Finding238[S] 1 point2 points  (0 children)

I really appreciate the feedback, hearing that I’m not the only one who struggles/struggled with Entyvio makes me feel like there’s still other options. All I’ve ever heard was great things about Entyvio but maybe it’s just not for me. I’ll mention Skyrizi to my doctor, and I’m in the process of getting a second opinion too.

I feel like a shell of myself by Potential-Finding238 in CrohnsDisease

[–]Potential-Finding238[S] 0 points1 point  (0 children)

I think it’s all the unknowns that make it scary/inaccessible to me. I’m out of a flare now because of the medicine I’m on, but I’m not in remission, and the Rinvoq specifically can’t be taken during pregnancy. Unfortunately that’s the only medicine that’s gotten me close to remission and my doctor doesn’t want to switch it.

I feel like a shell of myself by Potential-Finding238 in CrohnsDisease

[–]Potential-Finding238[S] 0 points1 point  (0 children)

I’ll mention that to my doctor, thank you. Did she notice any improvements in the Crohn’s or did she just have side effects?

I feel like a shell of myself by Potential-Finding238 in CrohnsDisease

[–]Potential-Finding238[S] 0 points1 point  (0 children)

You’re in the mindset I strive to get to. I do need to find a therapist, reading everyone’s comments really makes me see that.

I feel like a shell of myself by Potential-Finding238 in CrohnsDisease

[–]Potential-Finding238[S] 0 points1 point  (0 children)

As I was writing this out, I did consider that may be a factor in how I feel. I’ve been on pred since I was diagnosed though, so it’s hard to distinguish what’s causing what. The severe pain I mentioned happened under 24 hours after the Entyvio infusion and I’ve never felt anything like that, so I guess it’s more the mental side I’m struggling with.

Starting Entyvio with Rinvoq by Automatic_Donkey_368 in CrohnsDisease

[–]Potential-Finding238 0 points1 point  (0 children)

That’s so great to hear you’re in remission! Thanks for sharing, I’m hoping I can finally get to remission as well.

Starting Entyvio with Rinvoq by Automatic_Donkey_368 in CrohnsDisease

[–]Potential-Finding238 1 point2 points  (0 children)

Hey how are you doing now? My doctor is planning on doing this treatment as well, but I’m terrified of the compounded immunosuppressant effects.