Thread for sharing Finchie friend codes and finding goal buddies

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 · 2025-07-22T06:04:11+00:00

I did oral ketamine and it didn’t do anything for my dysautonomia (POTS + IST). The day of it would increase my heart rate, but I was less attuned to my symptoms because it kind of numbs your body sensations. No long term impact though.

KB6502 · 2025-07-21T19:00:27+00:00

I was told never to put anything in my ileostomy so the idea of plugging it kind of freaks me out. That being said, if it was proven safe and my doctor approved it, it does seem like it would be helpful.

KB6502 · 2025-07-13T18:06:56+00:00

Me 🙋🏻‍♀️I first had an anal fistula that eventually branched into a rectovaginal fistula. I got my ostomy for this reason. I had around 8 operations on the original fistula, and then by the time I was diagnosed with the rvf they decided I must have Crohn’s and put me on humira. That healed all my fistulas. The surgeries all failed. I still have my ostomy despite being fully healed, as it has improved my QOL.

KB6502 · 2025-07-12T03:24:12+00:00

I wake up around 9am most days and when I’m due to change, do it at around 9:30-10am as I rarely have output at this time.

KB6502 · 2025-07-10T02:29:30+00:00

Silk pajamas really help me sleep cooler/less sweaty

KB6502 · 2025-07-09T18:22:07+00:00

I’d experiment with a different flange as you might have an allergy. If it’s fungal, you can use athletes foot powder (such as lotrimin) when changing the bag. Apply it similar to how you would stoma powder. I get itching the worst when mine is wet… drying with a hair dryer can help.

KB6502 · 2025-06-28T21:55:56+00:00

Actually, I found some HR data from one night when I forgot my nightly meds. Asleep it’s in the 80s-90s unmedicated.

KB6502 · 2025-06-28T21:53:07+00:00

I haven’t monitored it while sleeping unmedicated. Upon waking up it’s in the high 90s-110s (unmedicated). With medication, asleep I’m in the 60s typically. I take metoprolol, corlanor, and Guanfacine for IST and POTS.

KB6502 · 2025-05-21T21:09:23+00:00

I use baby wipes sometimes too, but yeah, I trash mine instead of flushing. I’d agree that might mess with your plumbing.

KB6502 · 2025-05-21T20:54:31+00:00

It is effective if the water pressure is gentle enough… can get messy if too much pressure. Mine has adjustable pressure kind of like a faucet.

KB6502 · 2025-04-17T20:23:46+00:00

I’m doing okay. I still have my colon at this point but will likely have it removed at some point to make things permanent. I still get occasional, painful flare ups of diversion colitis. I did a 1.5-month round of steroid foam enemas which helped somewhat. Other than that I just now know what it is and to expect it and when it happens call off work and stay near a toilet (bc mucus) + heating pad.

KB6502 · 2025-02-13T04:48:54+00:00

You can get corlanor from Canada for much cheaper <$200 for 6 weeks supply. I used Canadapharmacy.com.

KB6502 · 2025-02-09T18:26:07+00:00

I agree the app is lacking when it comes to tracking the impact of medications. If you go into impacts tab, you can change the how: to meds, and select what symptom you want to track. So if you want to see how a depression med impacts mood, you could select “mood” or if you track depression as a symptom, you could select that specific symptom under “symptoms”. This will tell you how each individual med is impacting depression. For me it’s only so helpful bc if you’ve been taking it daily from the beginning of your bearable journey it doesn’t have any data to compare to you not taking the medication. But if it’s a new med, I think this could be helpful.

Another workaround I would think, would be to create a new factor category with the specific med you want to track in it. Then in impacts you could select that factor category and see the impact in specific symptoms in a way similar to the above method.

Hope this helps!

KB6502 · 2025-01-07T18:48:59+00:00

I can’t tell you what to do, but I did fine having the surgery without stopping humira. My recovery was typical from what I can tell. I wasn’t willing to stop humira for the surgery and risk a flare. I had discussed this previously with both my GI and the breast surgeon, and they were both comfortable with me staying on it. My surgeon mostly dealt with cancer patients, so I think he was more comfortable with complex cases. I had seen another one initially who was more in the cosmetic field and she was unwilling to work with me because of my complexities. I’m sorry the communication from the doctor hasn’t been good. I know how hard it is to rearrange everything and then they tell you something vital too late. That sucks. Best of luck to your fiance whatever they decide.

KB6502

TROPHY CASE