Does Bowel Incontinence Control Your Life

[CrochetGirl]

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. 

[John Davis]

CrochetGirl, I think you already have found the solution to living with bowel incontinence - prior planning and preparation.  Regrettably, it takes good planning and preparation - and that requires a significant amount of time, as you already have learned. Unfortunately, we tend to lose spontaneity.

You are impressively well organized and I agree with everything you are doing.

Like you, I have a formal daily bowel program.  I have neurogenic bowel due to an old accident and am seen by a SCI Rehab clinic in addition to gastroenterologists, etc.

Unlike you, I have very few accidents as I self-administer old fashioned enemas every morning.  These are traditional soapsuds or saline enemas from a hanging rubber enema bag, not the chemical Fleets enemas.  I will emphasize that an empty bowel cannot have an accident.  Once done I can (almost) forget about bowel problems until the following morning.  I would rather do this at home than risk a bowel accident in public.  I also will note that this is by prescription by my SCI docs and with the approval of my gastroenterologists.

Be good to yourself.  By that I mean consciously managing your emotional health.  Perhaps half the battle to manage incontinence is emotional.  Incontinence (and particularly bowel incontinence) causes stress and the stress can increase the incontinence.  It is a vicious cycle.  Give yourself a break, ie., pamper yourself with something relaxing or enjoyable.

It does get better.  With time we adapt better to the necessities of living with bowel incontinence.  Many things just become "normal" like my diapers just becoming my underwear - not a big deal.

Please continue to talk with us.  Just talking can be helpful.  I am sure you will hear from others here with similar issues.

Best wishes,

--John