www.incontinentsupport.org

Thanks. I've still not braved talking to my Dr yet. Oh dear. Hopefully this weekend I will manage to write the email.

Tangerine,
Hard and incomplete bowel movements can cause serious injury to your colon. J.D. deals with bowel incontinence and use daily enemas to aid in controlling it. Make sure your doctor is on board first, he has had great success by doing this.

Tangerine,

The problem of bowel incontinence is complex and there is no perfect solution for everyone. Mlhr is quite correct about the danger from hard incomplete bowel movements.

I have chronic constipation, incomplete evacuation, and some damage to the nerves controlling the sphincter. I have to use digital evacuation every day to remove some stool and then digital stimulation to try to prompt a fairly normal bowel movement (before my enemas). My doctor approves of my use of enemas but wants me to exercise the normal nerves and muscles as much as I can.

I found fiber to be a two-edged sword. While generally beneficial, for some of us with incomplete evacuation or a defecation disorder a lot of fiber can be too much of a good thing. After my physician initially had me increase my daily fiber, I reached a point where my stools were too large and hard for me to evacuate. I then had to reduce the fiber to a more moderate amount.

For my constipation, my colorectal surgeon told me to take Miralax (Polyethelene Glycol or PEG) to soften the stools. As you are finding, each person has to experiment to find just the right dosage to soften the stools but not cause liquid stools or act as a laxative. In my case I take two caps a day, one in the morning and another in the evening. Most others take less than this.

Good luck!

--John

I am currently taking 2 movicol and 2 dosage sodium a day and that is usually helping. The problem I have at the moment is that where as when I was using mostly digital evacuation and a little constipated, I could usually 'hold on' until a carer was here. At 11am, and. 9.30pm I would evacuate my bowel whether I felt the sensation to defecate or not, because otherwise I would be waiting a long time to go. Sometimes I would get the urge to go sooner and so go during the 6.30pm slot instead of the 9.30pm. Now I am trying to not use manual/digital techniques so much (although I still have to sometimes to get things started) which means I am relying on my body's own natural call to stool. Sometmes that is the morning or evening, but sometimes it is between care visits 30-60 minutes after my lunch when nobody is here....and that is when the accidents are most commonly occurring. When I was more constipated the stool would come down in to my rectum and then wait until I had a carer here. Now, my bowel movements are often initiated by waves of peristalsis in the time following eating. Does that make sense? At a certain point the bowel has pushed the stool through so much that it has nowhere left to go but out of my body.

I am at a loss of how to explain it to my GP. Yes, there are control issues but primarily it is a care issue - and he's never been great at advocating for my care issues. Any ideas?

Tangerine,

Yes, I certainly understand the gastrocolic reflex after eating. Just as with infants, following a meal our bodies have their own schedules may not wait for ours. I have been surprised a few times. Normally the response would be a healthy thing.

I am surprised that your physician is not taking this more seriously. As you are soiling yourself despite your best efforts that would seem to justify his attention. Unfortunately, as few of us actually die from our incontinence, some doctors consider it to be of a lesser priority.

Do discuss enemas with your doctor to see whether they might be appropriate for you. A traditional bag enema, properly (I emphasize the word "properly") administered by your caregiver, should give you 24 hours free of concerns about a bowel accident. They are routine in the daily bowel management program of most with spinal cord injuries. Bag gravity-fed enema systems are inexpensive. Also, there are enema systems such as Coloplast's Peristeen that are designed specifically for those with SCI trauma and limited agility that can be administered either by them or by their caregivers. Unfortunately, these are a bit pricey unless covered by health insurance.

--John

I was offered peristeen a few years ago but opted out because I didn't want to be reliant on it. I still think that having someone here so I could go as needed would be the best solution. We will see. I would consider peristeen but I have to use a bedpan lying on my side and I think you need to sit up on a toilet/commode. Any bowel management plan would require extra care time too I think since you need to wait for it to kick in. I have bitten the bullet and contacted my gp so will see what he says.

Every time I see this thread, I read it as:

Car problems and bowel urgency causing Bowel incontine.

It confuses me every time.

An update. My gp did nothing. He offered me an appointment with himself and the nurse which I could not make, so I asked for another time. I sent two emails and my carer called him and he said he'd email me back - he never did.

The good news is that I started live in assistance in April and have not had a single accident since except for one time when a PA left me in the lurch for 14 hours. The situation is complicated in that the funding isn't officially for live in assistance, but it is enough money. However social services and Dr will still think I will have 4 visits a day, so next time they see me for my review I don't know how to answer
I am not having accidents because I have someone here all the time but if I admit to using my plan this way I could get in trouble. I'd like to be able to say I have accidents when nobody is here but there also seems no point arguing for more hours when the funding amount is sufficient due to them paying a high enough hourly rate that I can get more hours out of it and still pay an ethical wage.

For now I am relieved to be accident free. I go when I need to and usually use a glove to check first unless it is obvious. Still using laxido and some manual evacuation.