[paraman]

I am T12 para for the last 22 years. Lately I have been facing a peculiar problem with my bowel.

I have a maid who comes in every day and digitally removes my stools. I am on a once-a-day cycle. Normally my stools are hard (I prefer them that way) and I have almost none or at the most 1 or 2 accidents in a year.

For the last 3 months what is happening is that even when I have done my evacuation in the morning, during the day or sometimes even in the night, fecal matter suddenly accumulates right at the anal opening. When I sleep on the side I can feel with my hand that the rectal area is full. Thankfully it doesnt come out on its own. I have to call my maid and do a emergency evacuation. And the stools come out all semi solid because water hasnt been absorbed completely. This is happening about 2-3 times a month. What triggers this sudden bowel movement is a mystery to me.

My physician said that it could be happening because of the extreme heat that we are having for the last 3 months. The problem did begin with the onset of summer. Have any of you faced this kind of a problem? How did you solve it?

[edlee]

So much depends on diet and water intake. Have you started eating anything new in the last few months? Or cut anything out?

Hot weather generally makes me eat less,, and I eat more salads,, I drink a lot more, too.

I have had similar problems, and have not solved the riddle, either. I have begun using the Peristeen system,, it's a high tech enema,,, and have had no problems of any kind, since. I don't know if it's available in your country, but it's made by coloplast.

ed

[paraman]

Peristeen is not available here, though other enemas are.

Even I am eating less in the summer. No changes to my diet except that the quantity has reduced because of the problem that I am facing.

Actually, this emergency evacuation problem I am facing for the last 3 summers. This year it has been rather severe. I don't recall having this problem in monsoon and winter.

I think I am caught in a vicious cycle. The emergency evacuation problem is making me eat less which is leading to gases which causes stomach upsets. And seeing the mess I make after evacuation puts me off eating. So the cycle continues. I dont know how I am going to get out of this.

edlee, how long have you been having this kind of problem? Who administers the enema to you? What is the frequency?

This post has been edited by paraman: 02 June 2009 - 06:00 AM

[edlee]

It was hit and miss for the first two years, then ,, like you,, mine firmed up and was not a problem for the next three .

That brings us to January,,, Same as you,, I had no change in diet or fluid intake,,, no new activities. I was then fortunate enough to obtain one of the enemas mentioned above. Trouble over.

I am a t10 complete with reasonable flexibility and pretty good upper body strength. I am able to perform the task by myself,, and while the result is messy, I only need to do it about every five or six days. I check myself daily to make sure and to decide when I need to go again.

I would think that any enema setup would work,,, it's just that the Peristeen makes it a bit easier to do by ones self.

I can only wish you luck,,, I know how untrained bowels can upset ones day.
ed

[emarie]

paraman, on Jun 2 2009, 01:58 AM, said:

Peristeen is not available here, though other enemas are.

Even I am eating less in the summer. No changes to my diet except that the quantity has reduced because of the problem that I am facing.

Actually, this emergency evacuation problem I am facing for the last 3 summers. This year it has been rather severe. I don't recall having this problem in monsoon and winter.

I think I am caught in a vicious cycle. The emergency evacuation problem is making me eat less which is leading to gases which causes stomach upsets. And seeing the mess I make after evacuation puts me off eating. So the cycle continues. I dont know how I am going to get out of this.

edlee, how long have you been having this kind of problem? Who administers the enema to you? What is the frequency?

I am also a T12 but am able to have bowel movements on my own. I can not, however, feel them at all. I too have this problem sometimes and when I go through bouts of loose bowels I just take anti-diarreal tablets until it firms up again. It seems to help me but I'm not wheelchair bound (not sure if you are) so that may make a difference. I agree that the warm weather seems to coincide with the problem.

[ems]

I'm also T12, and I was just wondering if there was reason you can't do the bowel procedures by yourself? The only time I've had ppl do it for me is when I was lying on my back in rehab!

Maybe the *maid* is just not a good enough job, thats why your experiencing accidents?

How long is it taking you/her to do your ME? Are you sitting on the toilet? or lying down?

Before I used the Peristeen unit, I used to go every other day, but now its every 3-4 days.

[paraman]

Quote

I am also a T12 but am able to have bowel movements on my own. I can not, however, feel them at all. I too have this problem sometimes and when I go through bouts of loose bowels I just take anti-diarreal tablets until it firms up again. It seems to help me but I'm not wheelchair bound (not sure if you are) so that may make a difference. I agree that the warm weather seems to coincide with the problem.

I am wheelchair bound but I have been that way for the last 22 yrs. So its nothing new. Even I take anti-diarreal tabs to firm up my stools. But if it becomes too hard then that also is a problem. A fine balance has to be maintained all the time.

Quote

I'm also T12, and I was just wondering if there was reason you can't do the bowel procedures by yourself? The only time I've had ppl do it for me is when I was lying on my back in rehab!

Maybe the *maid* is just not a good enough job, thats why your experiencing accidents?

How long is it taking you/her to do your ME? Are you sitting on the toilet? or lying down?

Before I used the Peristeen unit, I used to go every other day, but now its every 3-4 days.

I have never tried doing ME myself. Also have someone else do it for me. My maid/caregiver has been working with me for many years so its not as if she isnt doing it properly.

I always get it done lying on my side in my bed. There is very little muscle left on my buttocks which makes it impossible for me to sit on the toilet. The only places I sit are in my bed and on my wheelchair.

[Murray]

For the past several months my bp has become a 3-4 hour ordeal. It used to be a half hour max. I'm trying to get a handle on the reason/s. Doing some study of sympathetic and parasympathetic innervation. Tough stuff for a guy who got a D in hi schl biology. That was then - didn't have much motivation to know the stuff. Now, however, things are different. I still don't pretend to understand the whole autonomic nervous system, much less the central - but, then again, who does? So, all that to say this - does anybody out there know the sympathetic chain and its correlation to the spinal cord and the large intestine. I'm reading about it, but ... well, let's just say that's about all I'm doing ... reading.

Thanksl
Murray

[Bevan-L]

Murray, on Jun 10 2009, 03:17 PM, said:

For the past several months my bp has become a 3-4 hour ordeal. It used to be a half hour max. I'm trying to get a handle on the reason/s. Doing some study of sympathetic and parasympathetic innervation. Tough stuff for a guy who got a D in hi schl biology. That was then - didn't have much motivation to know the stuff. Now, however, things are different. I still don't pretend to understand the whole autonomic nervous system, much less the central - but, then again, who does? So, all that to say this - does anybody out there know the sympathetic chain and its correlation to the spinal cord and the large intestine. I'm reading about it, but ... well, let's just say that's about all I'm doing ... reading.

Thanksl
Murray

Hi Murray,

It usually takes 40mins to an hour for me at most, which i already think is beyond being too long, how do you manage going through that 3-4 hours?????? dont mean to be personal or anything but is it a daily thing? where do you find the time???

how i wish things were so much easier heh...

[Murray]

Hi Murray,

It usually takes 40mins to an hour for me at most, which i already think is beyond being too long, how do you manage going through that 3-4 hours?????? dont mean to be personal or anything but is it a daily thing? where do you find the time???

how i wish things were so much easier heh...



Hello Bevan-L -

Pardon the late response. How do I manage it?! One of those "no f-g choice" things. You know - just gotta do whatcha gotta do, or something like that. As for time - The event occurs every other day. So - every other day, I more or less keep my calendar clean. Luckily, I've had no trouble with accidents, etc. Can't imagine what I'd do then. Other than crap my pants .... Going to see a doc with specialties in alternative medicine on the 16th - maybe the two of us will come up with something. Who knows? It's worth a shot. Beats the ostomy option.

Thanks for the kind words.

Murray

[wheels71]

I've been a para, t-5 or t-7, for 38 yrs. I was in a car accident when i was 11 yrs of age. I used to have problems with my bowels. I would get in the car and 5 mins down the road, i would bowel trouble, mainly diarrhea. I told my gastroenterologist about this and he gave me a sample of "ALIGN", its a probiotic supplement . It helps to rebuild your digestive system. I have taken soooo many antibiotics over the years. Antibiotics is not good for your digestive system, if you take them long term. Probiotic is a good "bacteria" that our body needs. I dont have a daily bowel routine, i let nature take its course. I can travel now with no worries about accidents. I have been using "align" for 8 months. It cost about $32 a month for 28 day supply. It has help me and i hope it can help someone else... just a footnote...luckily, i'm not taking any pills of any kind.

[Scribbler]

I'm a C4/5 incomplete with full sensation, I've been injured over 50 years. I've always known if I need to go, so rarely had accidents unless I got a tummy bug.

I had a daily ME which only took 15 or 20 minute, tops. I didn't insert anything to stimulate my bowel, it was just a straight forward finger job. I used to have this done in a morning in bed and laid on my left side. I then changed to night time, as I found I slept better. I used this routine for years without any problems.

Now after 50 years as a SCI and approaching 70 I find my system changing. Despite eating a healthy diet I'm less active than I was when young so things are bound to change.

I now find I rarely go daily and get bunged up for up to a week. My abdomen gets distended but I eventually go in one big amount and a much longer ME, about 30 minutes or more. I then feel unsafe during that night so sleep with an inco pad under me.

Things change for all of us and sometimes we never know why or find a solution. I just do my best to eat healthily, plenty of fresh fruit and veg, plus keep up my fluids.

I did find I went better in the summer months, (If you can call English weather summer) due to more activity and less clothing.

As we're all different there's no hard and fast rule, its basically whatever routine suits each of us; all I know is that Ageing with SCI ain't for wimps...

Scrib's

[Murray]

Scribbler, on Jun 22 2009, 04:53 AM, said:

I'm a C4/5 incomplete with full sensation, I've been injured over 50 years. I've always known if I need to go, so rarely had accidents unless I got a tummy bug.

I had a daily ME which only took 15 or 20 minute, tops. I didn't insert anything to stimulate my bowel, it was just a straight forward finger job. I used to have this done in a morning in bed and laid on my left side. I then changed to night time, as I found I slept better. I used this routine for years without any problems.

Now after 50 years as a SCI and approaching 70 I find my system changing. Despite eating a healthy diet I'm less active than I was when young so things are bound to change.

I now find I rarely go daily and get bunged up for up to a week. My abdomen gets distended but I eventually go in one big amount and a much longer ME, about 30 minutes or more. I then feel unsafe during that night so sleep with an inco pad under me.

Things change for all of us and sometimes we never know why or find a solution. I just do my best to eat healthily, plenty of fresh fruit and veg, plus keep up my fluids.

I did find I went better in the summer months, (If you can call English weather summer) due to more activity and less clothing.

As we're all different there's no hard and fast rule, its basically whatever routine suits each of us; all I know is that Ageing with SCI ain't for wimps...

Scrib's

Thanks, Scrib -

(side note: my fiance's son is a UK native - 16 yrs - great kid. We managed to hook him up with an outfit called Youth For Understanding, and he's spending the "summer" in Japan ... It's the rainy season there, too. HA! Ali - my fiance - lived in a little village called Wickhambreaux - not far from Canterbury - for fourteen years, then decided to head back to the colonies. We're gettin' hitched in a few days. Yeehaw!)

[paraman]

@ wheels71 and Scribbler,

Sir's, I doff my hat to you both. To have lived a life with SCI for that long is amazing. I salute your courage and willpower. I have been disabled for 23 years now and already gotten tired of life. I can't wait for this life to end. At least that will put an end to the troubles I face.

[edlee]

That's disturbing on so many levels....
ed

[wheels71]

paraman, on Jun 23 2009, 02:28 AM, said:

@ wheels71 and Scribbler,

Sir's, I doff my hat to you both. To have lived a life with SCI for that long is amazing. I salute your courage and willpower. I have been disabled for 23 years now and already gotten tired of life. I can't wait for this life to end. At least that will put an end to the troubles I face.

Thank you paraman,...it is a hard road to travel. Never get tired of life tho', because we all learn new things each day. For example, you and I are having this chat. Without your SCI, we would never have chatted. Keeping a positive attitude is a must for people in wheelchairs, it is hard at times to keep a positive attitude when health issues arises, but i see this as a challenge and i am determine to do my best at it. The "normal" world makes my challenge harder, because i want to be "normal" too. Keep faith in GOD in your down times and just do the best you can to encourage other people with disabilities to do their best. When this life ends we all will be pushing, rather than riding in our chairs, but we should help each other by any means possible until then.

[paraman]

@ edlee & wheels71

Didnt mean to scare anyone with my post. Its not as if I have a death wish. What I meant was no matter what we do post SCI, quality of life will never be comparable to what we had before SCI. At least that's my opinion. Post SCI I have just been surviving, trying to cope with the challenges that I face. Its as if we are always playing catch-up with life! And it does get tiring after so many years. There is next to nil chance of a cure for us after so many years have gone by. So what is the other remaining means of escape?