CrochetGirl

Hello all, hope everyone is doing well! Just dropping in to say hey, and wishing everyone a happy 2025. I have been staying healthy so far, but I am still relying on diapers 24/7. My h-EDS is under control for the most part, I get pretty stiff with this cold but if I stay active I can avoid major mobility issues. My incontinence is as bad as ever, I alternate between leaking urine constantly and retaining until I standup and release a huge flood. As for my bowels, I can no longer sense/control when I release gas, and I rarely get the urge for a #2 until it’s already entering my diaper. While my bowel incontinence has been worsening for a couple of years now, it’s never been so unpredictable and sudden, and I’m still learning how to manage things. I have increased the capacity of the diapers I wear, and it’s super embarrassing to have to dress around thicker diapers now. I have even begun trying out cloth diapers at home, but due to my incontinence needs I cannot wear cloth diapers in public. My confidence is pretty shaken right now, it’s super embarrassing to not even realize I’ve had a #2 accident until I go to change.

With worsening bowel incontinence that requires increased protection and closer bowel monitoring, it feels like incontinence runs my life lately. Incontinence dictates every decision in my life: Everything I wear is chosen based on whether it hides my diaper and plastic pants. Everything I eat or drink is something that “agrees” with me, so no more greasy fast food or dairy 😞 Anytime I leave the house, I need to make sure I have diaper changing supplies and clean diapers, all packed neatly into a giant bag. If I go anywhere that has security they usually ask to check my bag and it’s embarrassing to have to explain to someone who might not understand. If I do not have changes to extend my time away from home, I must go home and re-up my supplies (I have started keeping a full bag of diapers and supplies in my car for emergencies, and I’m always afraid someone will discover it). If I have a bowel accident, or I discover I have wet my diaper to capacity, I have to drop everything and go change regardless of what I am doing. I can’t wear a normal swimsuit, yes I can wear a swim diaper, but it’s not the same as the tiny Instagram worthy swimsuits I used to feel so confident wearing. I also get very nervous when I have to walk in the rain, I have never had issues since I wear plastic pants, but I do fear getting stuck in a storm and having my diaper fall apart in public. In addition to medication for my other hEDS symptoms, I have to take fiber supplements and nullo tablets to keep me regular and prevent smells when I do have a bowel accident. I must take both regularly in order for them to be effective. On top of all these little inconveniences, I also follow a daily bowel program which is supposed to regulate my bowel accidents so they occur at home before I leave for the day. This takes about half an hour every morning and it’s not even fail proof I still have an accident in public 2-3 times a week 😭 Anyways, that rant was all to say: incontinence is overrunning my life and I was wondering how others cope with the constant maintenance and cleaning incontinence requires. It just feels like every decision from the time I get out of bed to the time I get back into bed revolves around my incontinence. And I thought it would get easier with time but my incontinence continues to worsen and managing it is only getting more and more difficult. I do have an appointment to see my doctor in the new year, but until then I just need to find a way to cope through the holidays.

Hello all, I am an average 20-something year old woman who has both bladder and bowel incontinence as a symptom of a condition called hEDS. The bowel incontinence is still pretty new to me so I am hoping to find some advice from others with similar issues, as well as talk to people in the general incontinence community (it’s more rare to find others who also wear diapers for incontinence issues than it is to find others who have hEDS, despite incontinence being a symptom of hEDS). I am fortunate to have a full time job, but in my free time I try to stay active. I love hiking, yoga, and kayaking. I am also an avid crocheter and love to try new restaurants. I look forward to meeting everyone!