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36 Posts
Hi Lorraine, I'm Terry and I am a t-11 t-12 incomplete also due to a medical mishap in 2010. I too have bowel/bladder challenges in addition to loss of mobility and sensation.
Your injury is so new for both of you on many levels. While I'm not married, I can tell you that my family faced overwhelming feelings of helplessness and concern. I received counseling as part of my rehab and my therapist brought in my family as well. Please seek counseling for you both (maybe you're already doing so.). Sorry I can't give you any true answers but I wish you hope and will pray for you both.
65 Posts
The bowel situation is the worst part of paralysis, and because it's so nasty nobody talks about it (except us!). All you hear about on TV is people trying to walk again, when walking is the least of our problems. But the good news is that over time (lots of it - 5-10 years) the bowel system tends to improve. But again, accidents are never off the radar, just more likely to predict and avoid. But it does get better.
On the family front, here's a great synopsis of research on the effects on family of people w/paralysis: http://www.apparelyzed.com/forums/topic/3154-family-and-spinal-cord-injury/ . I think the best advice is to try to keep as clean as possible and secondly realize that this is almost as huge a freakout on your husband as it is on you. GET COUNSELING! And remember - just because you sign up for counseling doesn't mean things will be fixed. It does mean, at a minimum, that you'll understand things from your husband's perspective. But don't try to figure this out just between the two of you. You need an expert to avoid arguments and keep the conversation going in a positive direction. Good Luck!!!!
Tom
15 Posts
I agree with the other responses on seeking counseling for you both. I've been extremely blessed with a very understanding partner in my life. Don't let a negative self image stay in your mind... you are still the same awesome person you were prior to your injury. For me keeping positive is key and kicking out any negativity before it has chance to take hold and root. Physical changes and adjustments take time for our own minds to accept, once you have a good bowel pattern down pat you may be able to better time the intimate moments to a less accident prone time too.... never give up on regaining a bit more once your body has healed a bit longer too, nobody knows just how much you'll be able to recover in your physical functions, not even those doctors... I've already went past the point I was told that I would be at. Lots of patience, with yourself & each other, open communication to see the situation through each others eyes helps too and that's where the counselor can help immensely.
13 Posts
Hi Lorraine, I am a T11-T12. We have an expression in my household, "sh*t happens...all the time" As Jama noted in his response, this is the worst part of the paralysis, uncontrolled bowel issues. I would take a cure for that first, vs being able to walk and not have bowel control.
I've been married for 23 years. My Wife for the first couple years was my bowel program. Over time I've taken over the task of what I call "farming" or "mining."
Overtime you will get back more control. As far as your Husband's outlook and attitude, I believe it will change as you begin to improve. You're not alone, there's allot of us out here with the same issues.
61 Posts
i agree with everyone else, get family therapy. bowels are the worst part of sci. you have to have a set routine to train your body. i also use suppositories to get things moving, it's called the magic bullet and is available at, concepts in confidence on the internet. it does improve over time, once you get your routine down. i'll say a prayer for you. Good bless!
