www.incontinentsupport.org

So I have been fighting my insurance since my accident in 2015 to cover diapers, failing over and over. With the SPC, diapers are still needed because of bladder spasms. When they happen, I pee through my urethra. I tried pull ups, but they weren't enough. It turns out Tranquility Atns do the trick. Spasms don't happen frequently but enough if I don't wear something I will wet my pants. There has also been a new issue. My knee replacement that I had 3 years ago has officially failed due to the severe neglect that happened after the surgery in a rehab. I ultimately need to see ortho, but I have severe medical trauma and haven't been able to bring myself to do it yet. My knee has given out a few times when I tried to transfer to the toilet to have a bowel movement. My wheelchair doesn't fit through the bathroom door so I would pivot to my shower bench and then to the toilet. Now that I can't safely do that I have to use the diaper. You would think this would motivate me to make that orho appt but with the severe medical trauma and the fact that I was told my only option would be to amputate my remaining leg, I just can't. Everytime I am operated on to make things better, I come out way worse.

So to the insurance thing. I got a new PCP and decided to try again. She must have said the magic words because I got my 2nd shipment this month (got the first last month) and I have diapers coming out of my ears! I went from struggling to afford diapers on my disability payments to having so many my aide has to rearrange my supply closet in the morning to try to fit everything. Its nuts! I also got chux (which are actually pretty crappy), lotion, gloves, barrier cream, and no rinse wash. We are having trouble getting wipes but are working on that.

This was my shipment I got yesterday. The poor UPS guy! Hahah

I regretted reading of your toileting challenges, but was relieved to read that your incontinence supplies have been solved. I understand your reluctance to undergo even more surgery, with the downsides that are possible for you. From this distance I cannot do much, except to read your posts and support you as best I can. Keep up keeping up, and report back when you can.

Thanks so much Patrick. Support even from afar means SO much. That’s why forums like this are so important. I hate seeing how it’s slowed down a lot around here, but am happy to see that there are folks who have stuck around.

I did have a really good primary care doctor appointment today. She says some of her colleagues have connections with orthopedic doctors who have experience with wheelchair users and won’t jump to cutting me open, so she is going to give me their info. She is still in the fight to get wipes covered for me. It’s so silly that I get SO much covered and sent to me, but not wipes! I have also been fighting because I have a United Healthcare Medicare advantage plan (dual coverage Medicare and Medicaid) and they are threatening to cut my home health aide services down by 20 hours because they want me to “be more independent “. Ummmm, that’s not how that works folks! The issue with the wipes is that Medicaid covers them completely but United doesn’t, so it’s a loophole they are trying to use. But I won’t let them! They won’t even cover my cath supplies, which is crazy! They approved and had the thing put in me and are just like “good luck!” The ONLY reason I have them is because I don’t get food stamps (they say I make too much money on disability. That’s a whole different can of worms) and United has a food benefit. Without it I can’t afford to eat. I have to pick between food and healthcare which is totally absurd. That’s the world we live in nowadays….

Hi Elijah!

Im glad that things are looking up for you. I regret also to read that your situation with your knee is causing you essentially functional fecal incontinence. That has to be a blow. I don't have any solutions, but my thoughts are with you. I am curious how the ATNS do for containment of fecal matter. Do you find them adequate for that, just in case I find myself using them again and have an issue with misbehaving bowels?

Peace out!

Rob

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Hey Rob!

They certainly are no Northshore or BetterDry, but they do the job. I haven’t used them while out of the house so I can’t report on that. Luckily when I am out of the house and I have had to have a bowel movement it’s been at a doctors appointment and there is a private bathroom with grab bars and stuff. And if needed my aide can be with me and help. I have mastered diapering in sitting in a wheelchair which is quite the challenge!


I still have some Northshore diapers that I keep for when I go out and think I may have to have a bowel movement without access to an accessible bathroom. That hasn’t happened yet though but I am mentally prepared (as much as I can be).