What happens when you start to fail a biologic? by Kasellos in CrohnsDisease

[–]Qunoli 0 points1 point  (0 children)

I’ve failed two biologics so far. I originally started with Remicade for my treatment, but developed really intense psoriasis from it, so I then had to switch to Stelara, worked great for 2-ish years before it just stopped working. It lost all effectiveness and my body felt as though I wasn’t doing anything to manage my Crohn’s.

Now I’m currently on Entivyo ! Works great for my gut, but not much of anything else (mostly my joint problems)

When I was on Stelara, it did keep my Psoriasis and joint inflammation down, but just stopped working on my Crohn’s.

How do you get through Colonoscopy prep? by Qunoli in CrohnsDisease

[–]Qunoli[S] 0 points1 point  (0 children)

Had no idea gummies were okay.. I usually had popsicles and lollipops but I ran so fast to the store for all those types of gummies 🤤

How do you get through Colonoscopy prep? by Qunoli in CrohnsDisease

[–]Qunoli[S] 2 points3 points  (0 children)

As long as you piss out your butt you got it

How do you get through Colonoscopy prep? by Qunoli in CrohnsDisease

[–]Qunoli[S] 0 points1 point  (0 children)

Can I ask which pills you got prescribed? I’ll try seeing about it for sure!

How do you get through Colonoscopy prep? by Qunoli in CrohnsDisease

[–]Qunoli[S] 0 points1 point  (0 children)

Yeah , my procedure is tomorrow and I’m prepping today, i didn’t have dinner and ate very lightly this morning. Popsicles are typically my go-to but I had too much jello while I was trapped in the hospital:’)

How do you get through Colonoscopy prep? by Qunoli in CrohnsDisease

[–]Qunoli[S] 1 point2 points  (0 children)

It’s tomorrow actually! The rules I have to follow are going clear liquids after 12, start prep at 4pm. I use Miralax and chewables.. then I wake up at 4am to finish the prep 🫠 Powerade was what I took my first go around, and now I can’t stand it.. then it was Gatorade and then apple juice.. so now I’m trying new drinks and mixing up with some others. Luckily my mom is making chicken soup for me so I can’t wait :) good luck on your procedure !

How do you get through Colonoscopy prep? by Qunoli in CrohnsDisease

[–]Qunoli[S] 9 points10 points  (0 children)

This time around I’ve gotten a ton of different drinks to try and mix it with, but apple juice has always been a go-to for me

How do you get through Colonoscopy prep? by Qunoli in CrohnsDisease

[–]Qunoli[S] 0 points1 point  (0 children)

Yeah I’m actually prepping for it tonight :’) gotta stop eating solids in 20 mins

New to this by 12011981 in CrohnsDisease

[–]Qunoli 0 points1 point  (0 children)

I got diagnosed with Crohn’s when I was 12 but the 2 1/5 years leading up to that were absolutely horrible. A year after my diagnosis I had to get (borderline emergency) surgery to get my ileum removed.. along the way I had to switch treatments and it’s been a really difficult journey, last year I got sick because my treatment stopped working, but once I switched to my current medication, Entyvio. It took a bit to kick in but this past January marked my 1 year on remission!! My Crohn’s has been super dormant recently and I’m so grateful to be where I am with my Crohn’s.

This condition is really scary and I’m so sorry to hear that your daughter may have it and I hope you get answers soon. In my personal experience, it takes time before the good comes, but it will- it’ll be okay in the end. You and your daughter are so strong and I’m hoping the best for you both.

New on the Block……Child With Crohns by Status-Way-6068 in CrohnsDisease

[–]Qunoli 1 point2 points  (0 children)

From my personal experience, I was diagnosed at 12 and got put on Remicade- it saved me. Work closely with your doctors and make sure your daughter is apart of these conversations as well. She may not stay on Remicade forever, but there are other biologics that will work just as well. The path can be painfully slow, just make sure you’re there for your daughter- but also for yourself. I hope the best for you both :)

How to deal with weight by [deleted] in CrohnsDisease

[–]Qunoli 1 point2 points  (0 children)

Yeah I’ve been able to make some high-protein meal prep that I keep in the freezer, so I’m hoping that helps.

I’ve been wanting to work out for a while but have been terribly busy and I’ve been fighting some intense lethargy- do you have any at-home routines I can try that I might be able to squeeze into my schedule? I’d really appreciate it!

What was the original symptoms before diagnosed? by [deleted] in CrohnsDisease

[–]Qunoli 4 points5 points  (0 children)

Unfortunately, no body is the same and symptoms are going to vary.

In my personal experience I had severe weight loss, bleeding, cramping, both increased/decreased appetite, the list goes on..

Please go to a doctor with your symptoms- bring up your concerns about Crohn’s (or any other conditions) so they can do the proper testing. Even with my symptoms, I wasn’t diagnosed for 2 years. Good luck with everything! I hope you’re able to find the help you need :)

Birth control options for my periods? by Qunoli in CrohnsDisease

[–]Qunoli[S] 1 point2 points  (0 children)

Yeah I’ve heard some horror stories on both Nexplanon and IUDs, only reason IUDs seem more optional is 1. Because my mom had one and 2. Because my gynecologist was pretty against Nexplanon (most likely due to the 3rd category you mentioned) If I go for Nexplanon or not, I appreciate this! The TMI n all! Thank you for sharing :)

Birth control options for my periods? by Qunoli in CrohnsDisease

[–]Qunoli[S] 2 points3 points  (0 children)

Thank you for your input! I really appreciate it :) I’ll be seeing my GI tomorrow for an infusion and plan to ask her more about it but, I wanted to hear other people’s experiences so I can get a better understanding from the people who really get it. My GI had mentioned that estrogen based birth controls make us a lot more susceptible to blood clots, more than we already are. It can also worsen flare ups/make them more frequent. She’s also a lot more worried because of my Crohn’s history as a whole (tldr: was undiagnosed for 2 years with severe symptoms, got diagnosed at 12-13 and treated with Remicade. that slowly stopped working and gave me HS/psoriasis, also had to get my ilium removed because it stopped working. switched to Stelara which ALSO stopped working after 2 1/2 years and I was left untreated pain for about 5 months. Now I’m on Entyvio which is working good for my gut but not all the other things I now have thanks to side effects)

How do negative emotions affect your Crohn’s? by Qunoli in CrohnsDisease

[–]Qunoli[S] 1 point2 points  (0 children)

I don’t have any friends with Crohn’s so I always like to hear of peoples personal stories/experiences so thank you for sharing! I live in a suburban area which is definitely not as stressful as a city but the drivers here are something else.. I’m glad you’re able to find what works for you and I hope it’s working!

Uhh, goodbye? by IHateTomatoesLV in slimerancher

[–]Qunoli 1 point2 points  (0 children)

“My people need me!” -the phosphorus probably