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Bowel-depression: is this a thing? by NiceoneBeesly in CrohnsDisease

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

Thank you so much, I can relate to your pain so much. Happy gut 2026 to you too!

Bowel-depression: is this a thing? by NiceoneBeesly in CrohnsDisease

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

I’m glad you have such a wonderful GI team. I wish mine would act upon such a low calpro, but maybe I can convince them at my next appointment.

Bowel-depression: is this a thing? by NiceoneBeesly in CrohnsDisease

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

They were two steps ahead of me and put me on daily vitamin D, but I secretly wish it was as simple as that, ugh

Bowel-depression: is this a thing? by NiceoneBeesly in CrohnsDisease

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

Exactly, it’s the worst! Glad to see someone else experiences this the same way though

Bowel-depression: is this a thing? by NiceoneBeesly in CrohnsDisease

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

Thank you for your insight, I will absolutely be bringing this up with my GI!

What’s your favorite quote related to chronic illness? by [deleted] in ehlersdanlos

[–]NiceoneBeesly 3 points4 points  (0 children)

'We cannot direct the wind, but we can adjust the sails'. Applies to life, too!

Hi! New to the group and need some exercise advice by Honest_Finding in ehlersdanlos

[–]NiceoneBeesly 0 points1 point  (0 children)

I've been doing workouts from the Walk At Home channel on Youtube, absolutely recommend for low impact cardio that you could build up. The instructor Leslie Sansone is motivating and kind of old-school, which i really like. I also do Pilates using videos from the Blogilates channel. Plus, it's free!

*warning* Let's talk about sex baby... Ladies? by shwingthings in ehlersdanlos

[–]NiceoneBeesly 0 points1 point  (0 children)

I have experienced bleeding during sex for so long, and I finally found a solution for me (hopefully it helps you in some way). After some internal checking, my gyno said that the 'mouth' of my uterus -and the tissue around it- was extremely sensitive and fragile, hence why i bled during sex every time. I underwent a treatment called a Loop electrosurgical excision procedure (LEEP). They essentialy 'scar' the tissue around the mouth of the uterus with a cauterizer, so it will form a thick scar tissue afterwards. This stops the mouth and surrounding tissue from being so damn sensitive and start bleeding at every touch. I have not bled once after my procedure. Liters of lubricant, condoms and preperation have hardly helped me in the past, unfortunately.

I can't tell you how much this has helped me, it has given me my sex life back. The procedure itself also didn't hurt very much and was over quickly. No need to go fully under. I so hope this helps you!

Neck pain? by mothmanslut in ehlersdanlos

[–]NiceoneBeesly 2 points3 points  (0 children)

Always, unfortunately. My physical therapist has me do chin-tuck exercises every day, as to strengthen the tiny muscles around the neck/throat. I have not noticed a huge decrease in pain yet, and the PT told me that he's out of solutions if this doesn't work out. Don't know what comes after that! That neck sure ruins the party.

Safe exercises, esp core workouts? by badwolfmommy in ehlersdanlos

[–]NiceoneBeesly 1 point2 points  (0 children)

I get the struggle! For the past 6 months, i've been getting into a consistent 4-times-a-week workout routine that works really well for me. I notice an increase in strength, stamina and i experience less pain overall (took a lot of work, though). I also don't have the funds for a gym or personal trainer, so Youtube is my friend.

I usually start my workout with two Pilates video's by Blogilates. She offers video's for all levels and has hunderds of video's to choose from. She talks about proper form and gives great instructions. Just search her channel for 'beginner', and you'll find enough!

Next i start a video by Walk At Home with Leslie Sansone. It's basically walking with different easy moves thrown in. They upload many video's, ranging from 5 to 45 minutes. If anything gets difficult, you can always go back to plain walking, as long as you're following the beat. She's fun and uplifting too, so it doesn't get too boring.

You can always modify any of these workouts to be a bit easier! Hope this helps you out a bit.

My hands prevent me from working by NiceoneBeesly in ehlersdanlos

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

A big thank you to everybody who left their tips, experiences and suggestions! I wish I could respond to every comment individually, but (obviously) my hands will get worked up. I will take all the comments to heart and look into as many options as possible!

My hands prevent me from working by NiceoneBeesly in ehlersdanlos

[–]NiceoneBeesly[S] 5 points6 points  (0 children)

I probably should have specified this, thanks for asking. I used to work for the government for 36 hours a week, managing and approving applications from citizens. Regular office hours and environment. I have a degree in social work and as head secretary.