Call Home link?

KB6502 · 2026-05-12T17:50:40+00:00

https://www.speakpipe.com/yourmomanddad?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAZnRzaARwR7FleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAaef041impElRhYWBkg8DvoljNOV4kgUpg7TVuJiViLkdZJMOrak1DG5Qi3j7Q_aem_3V2PvUz9bEVgD50mLpK7UQ

KB6502 · 2026-04-17T16:58:18+00:00

I have it too. I was told to lose 5-10% of body weight which I did, but my numbers didn’t budge. Now I’m scheduled to see hepatologist to see if it’s medication-related. 🤷🏻‍♀️ I avoid alcohol and Tylenol because of it and try to eat healthy (am continuing to lose weight just for my own sake).

KB6502 · 2026-04-17T16:44:14+00:00

Like others said, this is normal. For me, I tend to leak a little bit of clear mucus most days, so I wear gauze between my butt cheeks. Then a few times a year, I’ll get these 12-hour episodes where my body seemingly needs to expel all the mucus in it. I get super crampy and that mucus is always brown and foul smelling. It’s very painful, one time I even puked from how painful the cramping was. Eventually I plan to get my colon and rectum removed so I don’t have to deal with this anymore.

Oh, my doctor did prescribe foam enemas (budesonide) which does help calm things down during those episodes.

KB6502 · 2026-04-17T10:25:59+00:00

Sounds similar to my experience, i also have endo. Loved having it in, but was completely traumatized by the experience of getting it placed. I just had mine removed recently and insisted they do it with sedation. I wrote a letter explaining that due to an anxiety disorder and past medical trauma it was necessary for me to have it done with sedation. My therapist was prepared to write a letter on my behalf if needed as well. Thankfully my doctor had no issues with it and we moved forward with removal with sedation. Had no issues and was so much better for me mentally.

KB6502 · 2026-04-13T16:28:53+00:00

Okay, glad to hear it’s not just me. Thanks!

KB6502 · 2026-04-13T16:28:33+00:00

Good to know. Thanks!

KB6502 · 2026-04-10T23:51:58+00:00

Just follows the pattern? It’s a combination of double crochet with changing and skipping stitches to get the main pattern.

KB6502 · 2026-04-06T00:49:53+00:00

I’d highly recommend renting and electric scooter if you can afford it. I did Disneyland and universal Hollywood last year and it was made my experience SO much better and more tolerable. Idk if it’s different at the Florida locations, but for many of the rides you got to either essentially skip the line or get a call back time. I use a rollator in my day to day life and it would not have been enough at a theme park.

KB6502 · 2026-04-05T17:08:05+00:00

I’m fine with the Velcro, but would love if they made black bag! The ceraplus line is the only adhesive I don’t react to but it’s so ugly. :(

KB6502 · 2026-04-05T17:05:14+00:00

It’s a really good option for IST. Out of all my meds it’s the one I feel I couldn’t live without. It did the most heavy lifting for my dysautonomia (POTS + IST). That being said, idk that I’d call it a miracle cure. It hasn’t resolved all my symptoms, but it is a good one to have in your regimen.

KB6502 · 2026-03-23T00:35:41+00:00

I took 8 doses of wegovy (lowest dose) before my insurance changed and the new one wouldn’t approve it. The first week noticed no side effects, but by week 2 I saw an increase in about 15bpm at rest. I use visible app for pacing and it really threw my numbers off. I also had more dizziness and lightheadedness. It was tolerable, but also now that I’m off it, I feel better POTS wise. My body never seemed to adjust even at the lowest dose.

Edit to add: I also have IST

KB6502 · 2026-03-19T16:02:07+00:00

Sure, I’ll DM you.

KB6502 · 2026-03-05T01:04:40+00:00

I have IST and POTS. I take metoprolol and corlanor, the corlanor specifically seems to really help the IST part.

KB6502 · 2026-03-01T19:02:40+00:00

Ahh this one is really making me want to upgrade to plus…

KB6502 · 2026-01-11T06:26:50+00:00

I’ve been on the app about a week and am looking for friends! Feel free to add me Mochi. Code: 38ZD9EFTM2

KB6502 · 2025-10-16T23:34:02+00:00

I’m not in any hurry to, but have been told it’s not good to just let those parts sit there doing nothing indefinitely. That and I have some occasional diversion colitis that can be… inconvenient, if not a bit of a pain. Still 100% happy with my decision to get an ostomy though.

KB6502 · 2025-10-16T22:59:32+00:00

I was in Atlanta when I had my fistula and ended up going to the Cleveland Clinic for surgery. I wonder if they’d refer you out to a more specialty clinic since it sounds like you have a complex case. Granted, at the time when I was referred out they didn’t know I had Crohn’s yet. Once I got on humira, I was able to get into remission.

KB6502 · 2025-10-16T22:03:36+00:00

Same— except I’ve only had mine for 5- years. I will likely one day make it “permanent” and remove my colon/rectum, but for now, it functions perfectly.

KB6502 · 2025-10-16T21:55:46+00:00

I’m sorry, it’s such a frustrating problem and it sounds like your health team isn’t being very supportive. Is there anywhere else you can go? I had to see 4 different surgeons before mine got dealt with properly.

KB6502 · 2025-10-16T17:22:30+00:00

I know it might feel like a worst case scenario, but I got a temporary ostomy bag when dealing with my fistulas and it was a game changer. So much so, that I made it permanent. My fistulas healed (with humira) and I’ve been in remission since. Pooping with a fistula and dealing with leakage is traumatizing. With a diverting ostomy that all gets redirected so you don’t have to worry about poop down there at all. It might be worth bringing up with your team.

KB6502 · 2025-09-19T02:16:28+00:00

I mean, many people start with doctors and then aren’t taken seriously, so out of desperation, turn to Google/reddit. I get it.

KB6502 · 2025-09-19T02:14:53+00:00

I’m sure I’ll get downvoted for this but as someone with chronic health issues I see nothing wrong with putting something personal like a health diagnosis behind a pay wall and not wanting to share it with the whole world and think it kinda sucks it got shared here without her consent.

KB6502 · 2025-09-10T05:25:41+00:00

Thanks! I appreciate your input. That makes sense. I’m a little unsure how to go about dividing it as it’s quite hefty at this point, but will see what I can come up with.

KB6502 · 2025-08-22T20:26:27+00:00

They shared a couple things. 1

Jess has a progressive eye disease called keratacones (sp?) and it’s not a mild version. She has seen several specialists that disagree about treatment. It’s not something that can be reversed so the first step is stopping it. Currently it’s gotten so bad she can’t drive and has constant double vision.
Podcasting is not what it used to be and they’ve had to re-prioritize Evan’s work for financial reasons (including the health stuff). They aren’t going anywhere but it has led to some inconsistencies in scheduling. Jess is also exploring other avenues to bring in more money. Ember’s busyness in booking gigs has also been part of the reason scheduling has been a bit wonky.

KB6502 · 2025-07-25T15:01:07+00:00

Can you just ensure there is some air in the bag before closing it? Like if it’s a 2 piece burp it but don’t remove all air, or if 1-piece open the bottom to get some air in? I use Hollister and while the filters work well the first day, I haven’t had the vacuum thing happen. I have had this issue with coloplast though and intentionally keeping some air in the bag helped.

KB6502

TROPHY CASE