17 replies to this topic

[AHolland]

What specifically do you want answered? We will give you quite graphic answers, so beware of what you ask for. Also, as each of us is different, and have different medical conditions, we will have different "routines". We would also need to know more about your boyfriends condition to help in answering you questions: type of injury, level of injury, complete spinal cord severe, or partial, etc.

Fire away.

[wheelie182]

yeh as aholland said, most of us are quite happy with talking about our rountines, im sure it would be much easier for you to ask us first, so that when your boyfriend does explain stuff, you'll know what hes talking about, and probaly not give a supprised face........which im sure would be more comforatble for him, but as aholland said, everyone is different, and two people with the same condition might do things a different way,

but i think its great how you have done outside research, shows that you really care, a lot of people i know dont actually know about how i use the toilet, i have never lied!!........but people have always presumed that i just cant walk, and that i go to the toilet the normal way........and rather than explain, i just let them think that, its easier

look forward to hearing from you

[princess_wu]

I have never come right out and fired away asking what specific vertibrae was injured etc. From what I can gather, he was surfing when he started to feel pins and needles and couldn't get out of the water. Within several hours he had no feeling and no function below the waist. Originally the doctors felt he would regain sensation but he did not, he has a bruised vertabrae. He explained that the Dr's thought repeated restricted blood flow to his vertebrae may be the cause. I think not having a specific reason is most frustrating for him. There is no where to place the anger.

My question was about bathroom activities. He has made mention that the mornings/evenings are consumed by his "routine" and striving for things to go "perfect". As I said I would rather have a "general" idea so that when/if the time comes to actually expain it to me it will be easier. He told me having to explain it to his brother and SIL was very difficult for him. I would like to spare him that. He means a lot to me. He is aware that I have done research on my own to spare him and he was quite taken back to say the least. But in a good way.

I understand that each person is totally different. I think I have urinating down however I know there is more than just that. Autonomic disfunction??? I have no been able to find all my answers simply by "google" and by searching websites. There IS information but not a lot out there.

ok, boys fire away.

[wheelie182]

Ok, well most parapalegics will empty their bladder by either a legbag, or cathitorization,

first i will talk about a legbag which is basicly a 500/750/1000ml bag strapped to their leg, with a tube going all the way up to the meat and two veg

and then the user will wear a sheath, which is basicly a sticky back condom with a hole in it, and this hole connects to the tube, which then goes to the bag. So that if you cannot control your bladder, the urine goes staright to the bag.

or the other way is to cathitorize yourself, this is a more involved process, as it involves the user to insert a long thin tube with a hole in it through their penis, which goes all the way up into the bladder, and then the urine will pass down this tube into a bag, like the leg bag. This is usually done say every 4-5 hours, obviosly depending on how much you drink. But you can only use this process if your bladder doesn't leak between each emptying. You dont have to have any sensation at all, your body will still close your bladder until it is full, but if it is full your body will open your bladder, giving what us wheelchair folk call an accident. which is why if you know you've had a lot to drink, you should cathitorize more often,

or there is another way, and is to combine the two, which means have a catheter in all the time which goes to a legbag.

Thats how most people sort out their bladder

The other thing is the bowels, these can be a right pain in the arse....literally

These are sorted out usually by sipositries (i dont know how to spell that )
or manual evacuation, which is basiclly annoying the butt hole muscle, encouraging the other muscles to pass the stuff down,

sorry if you find that crude, but if i use all the proper words it would take ages, and i also wouldn't really know how to spell them

Thats all the basics, for a person who has no control of their toiletries, im sure the other guys will go into it in depth, but thats the basics

hope it helps

[carolline]

Princess_wu,
I have an Idea.......
Share this great site to your boyfriend,so that he will have an idea,tips and many more about his situation now.And to be an open minded about his injury,and to have a sense of humor(as wheelie did )
It's good that he have one like you,to support him all the way!
Good luck!

[AHolland]

To sort of copy what wheelie said, there are two different things that we could talk about here. The bladder or the bowels.

Your friend is probably referring to his bowel routine when he hints at it taking a long time and trying to make it go right.

Most spinal cord people have a difficult time getting a firm control over the actions of their bowels. Some people use a 1-2 or 3 day routine, meaning we only clean our bowels out every couple of days. It would be quite typical for a quad to use a 3 day routine and a para to use a 2 day routine. A normal person would typically use a 1 day routine.

The act of cleaning ones self out can take many forms. Some people do it while sitting on the toilet. Some while sitting on a commode chair, over the toilet. Some people have it done while being in bed. It is not unusual to combine a toilet routine and a shower at the same time, and I have seen a number of showers that have a toilet built into them.

In any event, a spinal cord person cannot usually work the muscles it takes to make the fecal matter move. Instead the person usually manually stimulates the anal area into reacting. The usual proceedure it put on a rubber glove, coat a finger or two, and insert it up into the anal area. This method, called digital stimulation, triggers the bowel muscles to react to push the fecal matter down.

Now what I have said is an over simplification. Once the finger is in the rectum, the person useally massages the walls of the lower bowel, particularily the part around the back, near the spine. If a finger gets too high in the bowels, then there is a chance of hitting some spot, I forget the name, and it can cause the person to faint.

Suppositories are usually a glycerin (wax like) bullet that dissolves in the bowels. The suppository acts to lubricate and stimulate the spyincter valve between the upper and lower bowels. A person who uses them often will probably always have to use them as you body becomes trained to need them.

Once the routine is started, it can take quite a long time to get the body to complete the action. For myself, I usually need a full hour. I repeat the digital stimulation about once every ten minutes until no more matter comes out.

For myself, I usually shower directly after as this gives even more time for any matter to come out. If the routine is not completed correctly, than the person may either have an accident that night, or the next day. Not something any of us wants.

Did you need more details filled in?

[Joed]

It's true that a bowel routine can mean many different things for different people. In my case, I use a self-taught method I'll just call 'external massage', whereby I, while sitting on the toilet, apply counter-pressure with my hand along the area well-known and lovingly called "the crack" . Starting at the top, then stopping short of the anal area. This aids the stool in descending, but, as a para, I am able to assist this action by pushing, or at least by tightening my abdomen muscles, to a small degree.

Because I don't use suppository aids, my routine isn't always over in one shot. Once initiated, I may go off and on all day or even two, then I may not revisit it for 4-5 days, but I have 'a sense' of when I need to go...not a normal sense, but I've learned to be alert to signals, like goose bumps, sweating, and oddly, my right hip may start aching.

I think it's fair to say that bowel routines and issues are often thought to be the most limiting factors in being paralyzed. I've had to back out of many plans at the last minute or cancel appointments because of it, or not even make certain plans to begin with out of uncertainty, depending on when the last movement occurred. It's factored into almost every decision I make throughout each day on some level.

I guess, in a way, it's good that we don't go daily! I'd never be able to go anywhere! Never thought I'd be touting the merits of 'sluggish bowels'.

[AHolland]

I loved trying to explain to an insurance person some of the items in my life that I believe limit my ability to go back to work. Without going into all the details, just one of them is that I have unstable bowels.

The insurance agent just could not get it through her thick head that a person may not be able to sense and control their bowels.
'Well, you would just go to the bathroom.." That as a lot of us know is just not possible to know, nor could we get it done in a reasonable period of time. Myself, I just love the thought of having a bowel movement in the middle of a work day and having to sit there waiting the four hours or more for an unscheduled handibus pickup.


I would list bowel and bladder as the worst aspect of a spinal cord injury. Legs, I can work around.

Hopefully your friend can read these posts and know that you are educating yourself in these difficult matters. If the SCI person handles their own bathroom routines and accidents, it goes a long way in helping a relationship. You would just have to be understanding that the bathroom routines may take a long while and need to be planned out. All I ask of my wife is that she look after the kids or go watch TV.

On a similar subject, I always leave some emergency supplies in a dresser beside my bed, and in a carry bag in our car. This includes a change of clothes. Better to be preparred for the worst, and hope for the best.

Good luck, and let us know how it goes.

[Upstate]

A related question.

I've been seeing a really wonderful guy for about two months. We spend whole afternoons together, but we never eat - only drink tea or coffee. I'm wondering why, and it occurrd to me that possibly eating off schedule might trigger an accident. I feel awkward asking him about it, although he's been open about discussing much of his routines, and we've been comfortable dealing with the leg bag.

[hillarymcarter]

If he's been injured for awhile he's probably got his bowel routine down to a pretty regular schedule and he shouldn't have to worry much about accidents. Of course, with any new relasionship, I'm sure he worries about "what if"

[carolline]

And do'nt worry I'm pretty sure he did his bowel routine..when he's going to date you out. ah..maybe you feel hungry when you're with him,cofee and tea is not enough for the whole afternoon for you..dont you?

[Upstate]

Thank you so much HillaryM and Carolline. Yes - - in fact I do get hungry during our long afternoons together, but it's not a problem really, since I enjoy the company so much. He's already explained to me that he completes his bowel routine in the shower every night (about an hour), so I suppose it's what you say - he may possibly just be worried about "what if" - -

I guess I just have to grab my courage and ask him about it. Maybe he's just waiting for me to bring along some food! ha ha

I want to say again how very much I appreciate this site.

[carolline]

Upstate, on Dec 3 2005, 02:54 PM, said:

he may possibly just be worried about "what if" - -

I guess I just have to grab my courage and ask him about it.  Maybe he's just waiting for me to bring along some food!  ha ha

....I think so..try to bring some cookies/soup first..for a starter.Like feeding a post-op patient from a long fasting before operation.Assuming he will be puke or his tummy will be ramble.."what if".

Enjoy the moment spending together..."like love and enjoyment first..and ignore that tummy is rambling"....

[Upstate]

Good idea - especially since it's holiday time. I could make some cookies to impress him!

[AHolland]

I don't really know of anyone that has had an accident because they ate some food. However, if it is one thing I have learned it is that we are all different and what works for one of us may not work for the rest.

If your friend is open minded and not holding back much, why don't you just ask him why he does'nt eat, or nibble at foods during the day. There could be dozens of reasons from financial to dietary.

I'm glad you have found him fun to be around. Strangely enough us disabled people are as normal as the rest of the world. We just walk around a little differently.

[hillarymcarter]

He could have an iffy stomach. I'm A/B and I get sick immediatly after eating. When I first started dating my husband, I would not eat when we went out because I was scared of getting sick!

[Upstate]

AHolland - thanks for the encouraging words. I will ask him.

HillaryM - I hope that your iffy stomach has stopped giving you trouble by now.

Thanks!