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Thread: Bowel Program/ Catheter Blues

  1. #1

    Bowel Program/ Catheter Blues

    I recently posted this as a blog...It's an issue that I struggle w/daily. I guess I'm just curious how other people "cope" with this awful necessity (especially ppl w/older injuries & other women). I just can't take it!

    lately i've been having a really hard time coping w/everything. i keep trying to push my thoughts to the back of my mind, but as always i find myself at my boiling point, emotions ready to spill over. i guess part of the reason i'm feeling so down is due to the holiday season. it's just a big smack in my face.

    i haven't been feeling good (physically) either. certain aspects of this "lifestyle" are extrememly hard for me to bear. it's all hard but the thing that bothers me the worst is my personal care & bathroom needs. it's hard to even describe what i go through day to day. i had bathroom "issues" before my accident & have always been self consious about my body. i could never use public restrooms, couldn't get changed in front of other people (except really really close ppl), etc. now i'm violated on a daily basis and there's nothing i can do about it. it's so hard for me to deal with and i haven't really found a way to cope with it. i really don't think i'll ever get used to other people dressing or washing me. it's so degrading & humiliating to me. sometimes i even start crying when they give me a shower. then there's the bowel program... i just want to vomit everytime i know the nurses have to do it. i've never been comfortable w/that aspect of life...period. now i have to have another human being manually do what my body won't. sometimes i feel like i'm being raped. I don't know how else to describe my discomfort =[ I seriously would give anything to avoid it. I'd gladly stop eating if I meant not having to go to the bathroom. Then, there's the disgusts & embarrasses me. this whole past week, it hasn't been working either. I went to the urologist's office this morning & they think a very bad infection is causing all the problems. They pumped me full of anti-biotics & changed it again. I just hope that works.

    I opted for a suprapubic catheter & had surgery over the summer for it. the foli catheter I originally had went up through my urethra & had to be changed weekly (also not pleasant…imagine having to go to the gyno every week). The suprapubic goes through my stomach (looks awful…I can't really look at it) and is a bigger tube, so it only gets changed once a month. Aside from the day to day embarrassment of having urine strapped to my leg, I've been having some serious issues with it. I went last week to get it changed & since then I've had 6 accidents. Apparently there's something going on w/my bladder, because they've changed the catheter and it's still happening. A little urine is getting through into the tube, but the rest is leaking out through "the normal way." It's absolutely awful being 26 years old and having accidents. To make matters worst, I can't even feel it happening, so I have no clue that I'm drenched in urine until someone repositions me. It happened twice on Christmas day to my utter disbelief & frustration! Poor Edwin had to transfer me like that & his car seat got wet! Thank god he & erin are such good friends. Of course I was mortified & felt bad for them too. The nurses here changed it twice, but it still happened yesterday and tues. I've been staying in bed as much as possible because of it. Just bummed out overall.

  2. #2
    I am going to move this over to the Life forum, as that is where you will get more responses to this.

    Did you go to rehab when you were first injured? Did you get counseling? You are still learning how to deal with your new injury (less than 6 months).

    If you are leaking through your urethra, you need to contact your urologist now. Are you taking any anticholenergic medications to prevent bladder spasm and leakage? This is needed by many people who use indwelling catheters.

    It sounds like you have not really dealt emotionally with the anger from your injury. It will not go away on its own, and denial or trying to hide from the necessity of taking care of your changed body is not going to magically disappear. It is fine to be angry and upset that this happened to you, but that is not going to make it go away.

    In addition, you need to take charge of your care. Your message makes it sound like others are making all the decisions for you. You need to be in charge of your body and your care, make the decisions, decide who provides you care and how. Health care professionals can provide you information and advice, PCAs or nurses can provide you care, but ultimately the decisions must be made by you.

    I am concerned that you have some significant self-esteem and body image issues that you need to deal with (esp. the sense of being "raped"). Taking care of your body in a different way is now required, and counseling would help you deal with this emotionally.

    I am sure others who have "been there" will be able to provide you even better advice.

    Last edited by SCI-Nurse; 12-28-2006 at 03:40 PM.

  3. #3
    Senior Member Myc0's Avatar
    Join Date
    Jul 2005
    Twilight in the Garden of Good and Evil
    Yeah SCI sucks, and the bladder and bowel part is a constant grim reminder. Listen to KLD, that's good advice, she knows what she's talking about. I don't know if it's an option for you but I recently changed my bowel program from every day to every other day, and that's been fantastic. The BP is still something I dread, but now I only have to do it 1/2 as much as I did, and that's helped a lot.
    De Omnibus Dubitandum

  4. #4
    Hi, Tskushi
    The major injury to my wife happened just 2 weeks after yours. She's been getting counseling every week for a little less than a year now, and thinks that it has helped her. She has a Foley catheter, and we do the BP every day.
    It took me quite a while to become fairly comfortable with digital stimulation, and yes, to get over the thought that I was violating her. Her approach was to pretend something else was happening or that she was somewhere else (denial?). Of course, having no sensation down there helped her at that. I still feel badly when digital removal of stool is necessary, but it's part of our new life, and we've pretty much accepted that. Do try to remember, it's not rape - there is no anger whatsoever involved, but there is caring. Is it unnatural? Well, you are a new you now - it has to be a new natural. Like Myc0 says, that sucks big time. But it is the way things are.
    "Talking" here helps a lot; you will find you're not alone. Being AB, my experience is of course from the outside, but there are lots of very insightful and helpful people (both SCI and caregivers) here that can be of great assistance to you. KLD has an amazing wealth of experience in helping SCI patients; I always read her words very carefully.
    - Richard

  5. #5
    thanks for the feedback! let me just clarify, when i used to term "rape" i mearly meant the level of violation i feel. of course i realize it's not violent & is done to help me, but it's definitely something that's forced upon me by my condition. i am very involved in my care & did opt to have treatment every other day a while back. however, my feelings have/will remain the same. also, i did see a therapist for a yr after my accident (it was 6/5/05) and don't think it was helpful at all. mostly all the ppl in my life are AB & therfore i thought it would helpful to see how other ppl in my situation deal w/this too. although friends/family love me & try to help me get through this, i know they can't even begin to undertand all that i go through.

  6. #6
    like MycO i changed my BP to every 3 days instead. in the hospital i was eating 3 meals a day , plus munching on stuff. did BP every night and i hated it. when i got home i was eating alot less. now i eat in the morning and something for supper. then munch on something later on. i been going every 3 days for about a year. i had one accident on my 2 yr date. nice present lol try to get yours to every other day. be alot better. gl and hang tough.
    oh well

  7. #7

    Your post just breaks my heart! I empathize with you but on a smaller scale. I can and do take care of myself but I do understand your feelings. When I was injured at the age of 17, the hospital experience was humiliating, humbling, violating, etc. Before my accident, I was big into camping and wilderness survival. I loved the outdoors and still do. I took great pride in the fact that I could live on my own regardless of the circumstances. However, in a few fleeting moments, I became TOTALLY dependent upon others.

    I also am a very private person and the hospital experience was torture. Although I slowly learned how to become independent, I am still dependent upon certain things; ie, a bathroom and a soft bed nearby. My carefree life was forever changed into one of a closely controlled sterile environment. I can no longer do many of the things that I loved and now live in a world of dependency.

    Please don't get me wrong. I understand that your circumstances require you to be even more dependent upon others around you. It sucks! There is no getting around it.

    The first couple of years were the hardest for me. I kept thinking that I was going to be miraculously healed. Every day it did not happen, I got further depressed. My world was revolving around my chair and the horrible things that entails.

    Slowly however, things started to change. As I became less consumed by my situation and “forgot” about it, the more I was able to enjoy other things in life. For me it was snowmobiling, almost to the point of neglecting my wife and family (not good). But it gave me an outlet. It was a release and something to pour my thoughts and ambitions into. It was a passion! And this is my point. I think everyone needs something that they are passionate about. Something that you can spend time doing and loose yourself in. Do you have anything like this? If not, find something to loose yourself in. In a way, it is what helped “save” me.

    It is still hard at times. But through the years, I have adapted. It is a slow, painful process. But please understand that you are at the worst time. It can and will get better. The bright spots get brighter. And the low spots don't seem as low nor do they occur as often. Hang in there! (I know, easier said than done )

    I am not going to try and tell you that I know how you feel or that I totally understand. Everyone's situation is different. I admire the strength of everyone with higher level of injuries than I have. I know it is a tough thing.

    I know there are people who love you and want you to be happy. My mom always says, “That is what we are here for. To help each other!” And it's true. We are pulling for you. Please hang in there. It can and will get better!

    Keep us up-to-date on how you are feeling.

  8. #8
    Make some SCI friends. Best therapy you can ever have is to see how other people going through the same thing cope with the tragedy, get tips, learn tricks, etc. Though not easy, it can be done. I am three years out and still have problems dealing with my BP. But life goes on.

    Also, don´t corner yourself into thinking you will always think like this. Try to overcome the situation. In the beginning SCI overcomes most of us and it is an endless struggle to cope, but it can be made a little better. I try to take it one moment at a time.

    Quote Originally Posted by tskushi26
    thanks for the feedback! let me just clarify, when i used to term "rape" i mearly meant the level of violation i feel. of course i realize it's not violent & is done to help me, but it's definitely something that's forced upon me by my condition. i am very involved in my care & did opt to have treatment every other day a while back. however, my feelings have/will remain the same. also, i did see a therapist for a yr after my accident (it was 6/5/05) and don't think it was helpful at all. mostly all the ppl in my life are AB & therfore i thought it would helpful to see how other ppl in my situation deal w/this too. although friends/family love me & try to help me get through this, i know they can't even begin to undertand all that i go through.
    T6 complete (or so I think), SCI since September 21, 2003

  9. #9
    Junior Member fillmore's Avatar
    Join Date
    May 2004
    Well I have no idea what happened to the first part of this post reply. My darn dragon software sent it off before it was done. Ugh! I will start again.
    I was saying... your statements bring me back to the beginning of all of this SCI crap four years ago. It also makes me see how far I've come. The bowel program has always been the most humiliating part for me. Any person that has ever done it for me knows ahead of time that I don't want to know the details of it and I don't want to talk during it unless there is a problem. In the end I figured out if I pretend I'm asleep or really try hard to be, it works best for me. I used to cry and cry through it. I have also made myself talk to my closest friends about it which has actually helped with my embarrassment. If I happen to have an accident around one of them it is not as big of a deal as when I am with somebody that has no idea. I am very lucky to have friends that have been through this from the beginning with me. I was crying so much around them that there is no way they would have been able to not learn about SCI with me. Of course, they cannot understand entirely and admit they have no idea what to say at times. I got so depressed for such a long period of time that all I did was cry and cry all day every day. I got so tired of being in that dark place but, I felt helpless. Finally one day I realized there are only two choices for me. Living in that hell or figuring out a way to climb my out of it to become a happier person. I just couldn't do hell anymore. I definitely have a ways to go before reaching true happiness and getting over my discomfort with my self-image but, I can at least smile again and really mean it. I started taking Effexor (has been great for me), I try not be so hard on the looks of my body and I have met a couple of guys in chairs. Even though I am female it has still been helpful. Also, I remind myself the body is just a borrowed vessel and mine is broken temporarily. Sounds cheesy but, it truly is what's in the inside that counts and I refuse to let SCI take my heart and soul away also. Oh yeah, one last thing that has helped me... I try hard to laugh at the shitty things that would normally make me cry. For example, With all of the people that have now seen me naked I have adopted the attitude of oh well, what's one more person. It is Either that or to be really embarrassed and that is not an option because it has to happen regardless. None of this is easy and none of this I am perfect at by any means but, I have definitely become happier. I have no doubt that you can make it through this crap also. Keep chiseling away at it. You Can do it.

  10. #10
    im just posting to say that you're not alone. i hate how it makes things like work and a social life much harder but i still try.

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