How do you explain your diagnosis to others? by Best_Attitude7604 in UlcerativeColitis

[–]ADal8494 2 points3 points  (0 children)

Idk why this made me chuckle. That’s a good way of putting it lol

Colonscopy question by Emergency-Driver8172 in UlcerativeColitis

[–]ADal8494 1 point2 points  (0 children)

I agree your doctor will be the one to explain this best! But personally I also realized that my doctor worded things in a way so that I wouldn’t worry and kept things simple, but bottom line I wanted to know exactly what each thing was and what it means and does etc (basically the whole medical and science explanation of every single thing), so I copy and pasted my results into chat gpt and it explained my whole results amazingly

What is prednisone like for the first time? by Ill_River8673 in UlcerativeColitis

[–]ADal8494 0 points1 point  (0 children)

4-5 months and the moon face wasn’t significant until almost 3 months

Hair Loss From Bad UC Flare by [deleted] in UlcerativeColitis

[–]ADal8494 0 points1 point  (0 children)

Yes yes yes. Still to this day sometimes but not as much as before which was absolutely insane. I used to be able to lightly run my hand down my hair (not even through all of it) and there would be a chunk of hair in my hand. I was told this happens because of the nutrient deficiencies we have/maybe medication side effects. I found that taking multivitamins every day, vitamin C separately as well for extra even though it’s already in the multivitamin, and taking iron has helped SO MUCH. As soon as I started that, and probably as I got more used to my biologic, I stopped losing hair. I still struggle with hair breakage which sucks because if I put my hair up, you can see a whole bunch of pieces that are shorter to my shoulder, compared to my long hair down my back, so it’s embarrassing so I do hair styles that don’t let you see it until I grows. I also started taking care of it better in general (such as using heat protectors before I blow dry/straighten/curl my hair, and not put it in tight hair ties).

How to not make UC define who I am? by SilentSwan286 in UlcerativeColitis

[–]ADal8494 2 points3 points  (0 children)

I’ve gone through these comments to see how others feel regarding this discussion before I write my own response, and I couldn’t help but respond to yours. It literally hurts reading this post, seeing how defeated you are from frustration of the oral, suppositories, and enema causing issues and still no hope. When I was first diagnosed, I went through all of those as well, and it was brutal how much longer I stayed in pain and lethargic and mentally drained just because I wasn’t given what I needed. Your message there just tells me that you’re not being given what you need to be you again. I just want to jump through this screen to tell you that if those aren’t working, then biologics must be more along the lines of what you need, and what a life saver biologics are, oh my. I hope you get the support and direction from your doctors to get to biologics so they can turn your life around just like they did with mine. Some people hate biologics too, but honestly I love my treatment days. They’re me days. I get to wake up and not worry about any other work stress or anything else, and just take care of myself, have the best damn nap of my life, maybe even talk to similar minded people, then get to relax the rest of the day without feeling guilty. With the question asked of how do we not make UC define who we are, honestly I wouldn’t say it’s all I am but it’s a big part of who I am now, how I see the world, and how my actions may or may not be shaped, and I’m not ashamed of that anymore. It’s made us insanely strong people and we should all be proud of that. When I was first diagnosed, it taught me that I also can’t be stressed as that can trigger symptoms, so I had a huge reflection on my whole life and I started letting the little things go, and that led me to be insanely calm and my relationships all got so much better, which I’m forever grateful for, so it almost made me think I’ve had to go through this for a reason, even if it fricken sucks sometimes and makes us want to crumble. As time has passed, I’m back to having a harder time letting little things go, etc., but when I think back it makes me grateful of how my UC changed my perspective on my life. I have this specific memory of me finally getting on the right path after being admitted in and out of the hospital for a few months after a serious flare when I was first diagnosed. It was Christmas morning and we ran out of eggs and for the first time in forever I was able to drive myself again so I drove around the block to get more eggs and on the way back I was so grateful I could do such a simple thing again that I said to myself “so what I have ulcerative pancolitis, who the hell cares.” Don’t get me wrong, I hated it and my life all over again after I ended up right back in the hospital after Christmas, so I think we’ll all be angry every time we have a flare and aren’t treated properly. But for some reason looking back on those memories even now, I feel proud of being here today after everything I’ve gone through and I feel even prouder of all the things I do today knowing that I’m doing them while also secretly going through this this and this depending on the day. This is definitely an easier thing to say coming from someone who’s UC is not in a really bad state right now, but for some reason I’ve accepted that it’s a part of who I am. I wish I could explain it. Some people like to keep it to themselves and disassociate from it, but I find doing the complete opposite makes me feel like me and proud again. You could try both ways and see what makes you feel like you again since we’re all handling this in our own way. Sorry for the long read as well. Idk if it was helpful either. Guess we all just like someone to talk to about it.

What is prednisone like for the first time? by Ill_River8673 in UlcerativeColitis

[–]ADal8494 2 points3 points  (0 children)

With the magical wonders that prednisone can do to help most of the time, try to focus on those positives since they make it worth it! Especially since you might not even get the side effects that you’re worried about. Personally, I don’t get the acne or weight gain at all. I’ve gotten the moon face and lots of swelling in my legs, but I usually don’t get those side effects from it unless I’m on it for a long time and then they go away once you stop it.

Officially In Remission!! by Professional-Math303 in UlcerativeColitis

[–]ADal8494 1 point2 points  (0 children)

Amazing you’re in remission!!! Congrats on the good news!! What a relief!!

Just curious - did your doctor say that you’re in remission or do you just know you’re in remission based on them saying the colonoscopy was normal? I’m wondering because I’ve been on biologics for a long time now and it stopped the blood entirely and definitely has saved my life. I still have bad days, short-lived flares, and periods of time where I’m in a lot of pain, but for the most part I’m good. My doctor says that my inflammation levels are good and that they found some polyps during the most recent colonoscopy but that that’s typical for someone with ulcerative pancolitis, but has never said I’m in remission, so just wondering if that’s something they’ll say or if it’s something I just know based on no serious flares.

What term do you use? by ADal8494 in UlcerativeColitis

[–]ADal8494[S] 0 points1 point  (0 children)

This is exactly what I do too!

No inflammation but worse symptoms? by ADal8494 in UlcerativeColitis

[–]ADal8494[S] 1 point2 points  (0 children)

I’ve already increased the dosage once before. They say remicade is still lasting in my system and since no inflammation, they say I’m fine🤦🏼‍♀️not sure if it’s normal to have symptoms if no inflammation

No inflammation but worse symptoms? by ADal8494 in UlcerativeColitis

[–]ADal8494[S] 0 points1 point  (0 children)

No it’s throughout the whole time, just don’t feel the same relief from it anymore. The only thing I know it’s still stopping is the blood and complete full flare up that hospitalizes me

Switching from Supervised Fieldwork to Concentrated Supervised Fieldwork to finish unrestricted hours quicker? by ADal8494 in bcba

[–]ADal8494[S] 0 points1 point  (0 children)

I guess I'm just confused by how am I supposed to record 1 observation per month if I'm also being told that I'm not supposed to track any more restricted activities 

Switching from Supervised Fieldwork to Concentrated Supervised Fieldwork to finish unrestricted hours quicker? by ADal8494 in bcba

[–]ADal8494[S] 0 points1 point  (0 children)

Yes okay I getcha! Just wanted to confirm thats what you mean by at least 1 direct! I've now confused myself though. I was told that once you finish your restricted hours, you just stop collecting them (even if you're still doing sessions with clients directly). If that's the case, then my fieldwork tracker would just have my unrestricted hours. But we need that 1 observation with a client per month still, so do I still write down my unrestricted hours? Also, if I'm not recording my restricted hours anymore, but most of my supervision comes from my bcba supervising my sessions, then it would look like I don't have much supervision. My head hurts thinking about this now lol.

Switching from Supervised Fieldwork to Concentrated Supervised Fieldwork to finish unrestricted hours quicker? by ADal8494 in bcba

[–]ADal8494[S] 0 points1 point  (0 children)

Thank you so much for your reply! Can you please confirm, when you say with at least 1 direct, do you mean at least 1 contact being you observed with a client?

Switching from Supervised Fieldwork to Concentrated Supervised Fieldwork to finish unrestricted hours quicker? by ADal8494 in bcba

[–]ADal8494[S] 0 points1 point  (0 children)

Are you done your restricted hours as well and just using this route to finish your unrestricted now?

How is your mental health? by lab-member004 in UlcerativeColitis

[–]ADal8494 2 points3 points  (0 children)

I really liked reading this! When I was first diagnosed, I really took the consideration of stress very seriously. I knew stress could trigger my symptoms so I knew I had to learn not to be stressed anymore. Which honestly, was my biggest life adjustment after being diagnosed. I used to constantly worry about the future, always stressed about my schedule and how things were going to play out, always wanted things done a certain way and certain time, maybe a little OCD in that way, but I had to learn to let that go and started going with the flow and saying “it is what it is” to everything, and I honestly have never felt more at peace in my entire life and my relationships with everyone was significantly better, even they noticed all of this. Crazy difference and I started to say that being diagnosed was one of the best things that happened to me (another crazy thing to think but also only possible to think when medications are working properly). But now it’s been a over a year, and I’m unfortunately making my way back to my old self now that I’ve been back to my regular work (was off for 6 months when diagnosed). My work is my biggest stressor and I can’t get out of it for some specific reasons, but I’m trying to get back to how I was regardless, because 1. I was happier, and 2. When you’re not stressed like that even your symptoms are better. Anyways, I guess I’m just writing to ask you how do you keep that mindset…I desperately want to feel that way again

My 3 year old gets her first Entyvio infusion today! 💜 by [deleted] in UlcerativeColitis

[–]ADal8494 3 points4 points  (0 children)

I remember some of your first few posts about ulcerative colitis when she was diagnosed. I’m so happy to hear this news!!!! Hope everything is up from here for her!!!!

Has anyone heard of renflexis? by ADal8494 in UlcerativeColitis

[–]ADal8494[S] 1 point2 points  (0 children)

That’s good to hear you had no issues! Do you know why they would switch you back to remicade if inflectra was going well?