u/manderp_soup

I hope everyone on the east coast experiencing this tropical 100 heat wave is staying cool and hydrated 💕 I seem to be struggling 🥲 and am looking for tips and tricks!! See below for my current regimen.

I drink at least 1/2 gallon of water (24ish cups water) and tons of electrolytes (1,000 mg sodium, 200mg potassium, and 60mg magnesium) every day. This doesn’t include the additional 1 or 2 8oz seltzer bevy I’ll have or 12oz decaf iced tea. I could list my food intake but that would take forever so trust me when I say I’m getting plenty of nutritious food per day!

I should note that I have very thick output for someone with an ileostomy, so to keep from excessive bloating and obstructions, I also drink a single serving of MiraLAX (17g) throughout the day. This is simply to keep my stool moving. The laxative doesn’t actually turn my stool liquidy, just softer.

Pls help! I feel extra light headed and can barely leave my apartment. These symptoms only started after the heat exceeded 30 C (85ish F). If the only solution is to not leave my apartment that’s fine but I’m curious to hear if anyone else has had success and what contributed to that success.

Kinda like the title suggests, I have a retracted stoma but only on very rare occasions. I read in an earlier post it could be due to partial obstructions which would be wild considering I have pretty regular output until last night. I did eat a sesame seed bagel and had lots of fiber the last few days more generally, so that probably didn’t help.

But anyway, when it happens, it’s usually when I’m asleep and I’ll wake up to severely eroded skin which leads to more leakages and takes forever to heal.

Would you guys recommend wearing a convex wafer full time? I feel like the ol’ “just don’t do it” trope (just don’t eat fiber) will not work for me.

For context, I already eat very small meals, snacks if you will. But like, the fiber intake is so minimal already idk how this happened. The bagel was a one-off thing and I’ll probably avoid the sesame seeds from now on. Maybe it was the small portion of red lentils I had last night…. Hmmmm

Anyone have experience ordering from the Stoma Guard brand and trying to get in contact with them? They sent my supplies to the wrong address and have ignored my emails and calls ever since. This included the stomaguard and 60 of the Velcro attachments.

Kinda weird seeing that the product is expensive and often needs to be reordered to stock up on velcro. You’d think they would do better?

EDIT: the issue has been resolved! Thanks for those that offered resources and their own supplies.

I’m a newish ostomate and am on my very last bag which does not fit and is currently leaking through! The previous two bags I had were both too big and the barrier rings weren’t enough to fill in the gaps. Is there anyone in the Philly area that can spare some? (Ideally a 2-piece, I’m still not used to applying 1 pieces).

I’ve done the following:

-Contacted my home care Ostomy nurse (haven’t heard from her in 3 weeks). She was out week 1 due to illness (which is fine!) but why wouldn’t the company send another nurse? It’s now been 3 weeks since I’ve seen her. She was supposed to visit Tuesday (4/28) and never showed

-Contacted the home care Ostomy company who didn’t seem to grasp the emergency of this situation and said they couldn’t get someone out until next week

-Reached out to the UOAA Philly contact and am waiting on response

-ordered samples from coloplast but missed their call so I doubt they’ll send them. Already maxed out my Hollister samples. Might try convatec but I really hate their wafers. At this point it’s too late anyway.

-Going to contact Penn’s Ostomy clinic today in the hopes they can spare some.

What a humbling experience begging for supplies on Reddit. Ty in advanced 🥲