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    wife learning bowel program for husband

    My husband was injured in an accident in Jan and will hopefully be coming home from rehab in May. He is c6,c7 and has very weak, limited hand function. I am going to be learning how to take care of his "bowel management program" on my own this week at rehab. I am terrified and mortified. I never imagined being in this situation. He has told me some of what is involved in this, but I know he is too embarrased to let me know all the details. Any other wives out there who can give me any advice on how to get over this?
    I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. - Mother Teresa

    #2
    Learning to do it, and being responsible for doing it on a regular basis are two different things. I think it is helpful for a family member who is a spouse to learn how to do it, so that you can do it in a pinch, or supervise a personal care attendant doing it, but I would really discourage you both, if possible from you doing this on a regular basis. Get a caregiver for this care if you can. It is very difficult, impossible for many, to maintain a lover/sexual relationship with the person that you do bowel care for. Bladder care is similar.

    Many people with a C6-7 injury learn to do most if not all of their own bowel care with the proper adaptive equipment such as a suppository inserter and digital stimulator, as well as a "toilet aid" for clean up. Has he been issued these tools and taught how to use them??

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #3
      bowel program

      My 24 year old son is a C6 quad and I do his bowel program. It is not that big a deal after you get over the embarrassment part. Just get in there and learn how to do it. If you want specific details, I can give them to you. Maybe on a personal email if you would like that better. It is very easy and takes about an hour or alittle longer each day. Learning exactly how the anus is designed is a huge part of making the procedure go easily. Also, not rushing it. When you think the person is done, alittle more comes. Cleanliness is huge also. Use handiwipes between dig stims, everything always gently. I help my son with bladder management, but he can do some of it on his own. He uses a hollister intermittent catheter, but I have to open the bags. I set it all out on a table in the bedroom and he can do it himself. For more instruction, let me know. It was hard to figure out how to get the stick out with little hand function. It can all be done and now it does not seem to be a big deal. It was at first, but you get used to it. Better than a leg bag or poop bag, at least for my son. Any more questions?

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        #4
        My daughter 20 years old and is a C6/C7 incomplete. I felt the same way that you do when I first learned about the "bowel program" - I had no idea. It has been more difficult for Sarah than for me but has gotten easier over time. You just do what you have to do and move on. We have worked out a good schedule and make it as painless (so to speak) as possible.

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          #5
          newc6c7wife, it would help to know what specifically mortifies and terrifies you about this -- fear of being up close and personal with poop? Concern over hurting him? Embarrassment that you need to "touch him back there"?

          You both need to find a way to get past the embarrassment -- clear, precise communication is so important. I suggest you you take the person who will be teaching you both aside before training begins and explain you're both embarrassed about the act and ask him/her to help you both work on getting more comfortable with how to talk about it. It's been my experience that once my spouse and I understood each others' fears, concerns, etc. and developed language to talk about what was going on, it made it a LOT easier for both of us to deal with.
          It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

          ~Julius Caesar

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            #6
            New C6C7wife, I understand exactly how you feel,I felt the same way.Mortified.
            My husband is C3 and has no use of arms, so it is just part of the way things are now. He has been home from rehab a year. Hopefully your husband will be able to do it on his own at some point as SCI nurse said. I am not an expert on level of injury function.
            There was an aide/tech at the rehab where Dave was that we really liked. I requested she help me the first few times so I would feel more comforatable. That made all of the difference.
            After a few times it went fine. Are they helping you where you are at?
            We have a morning aide during the week, but finding the two we have was nearly impossible and we have had a hard time finding a third. We can not find an agency in our area that will take someone with all of Dave's needs. That is another story....
            What SCI nurse said is true and ideal of course, but you do what you have to do. Aides may be unreliable. We like to go to the lake and no one there to do it.
            We have a Hoyer lift and sling to get Dave on the commode chair, but many can transfer using a sliding board or with less help.
            I give Dave a magic bullet suppository using a glove and lubrication. I get the lubrication gel at Walmart and is inexpensive. Some people use a liquid suppository called Enemeeze. (sp?)
            After about 20 mn I use my finger (gloved of course) and make circular movements . I only go up half an inch or so. Sometimes this takes several tries, everyone is different. At first he would get AD (I hope they are teaching you about things like that) and we would stop for a few minutes. When I get a clean finger we know he is done and as mfrench said using the wipes (Walmart brand baby wipes is what we use) important. We do it every other day. On the days we have an aide she gives him his shower while the suppository is in because he usually does not go right away. She puts a small tub under just in case.
            Other people might do it different, but that is how we were taught. With our bathroom configuration it is hard to get his commode over the toilet like many people do. We use a medium size garbage container with a heavy plastic bag. Again, this is how they did it at rehab, so that is how we learned it. Another man our aide helps sits over the toilet.
            Dave rarely has an accident or "invol" as they called it where Dave was at. Sometimes he needs Miralax and also takes a stool softener. Your doctor should help you with that. If he is on an antibiotic it can cause loose stool for him. I have plenty of chux (disposable pads) for clean up if he is in bed. My problem is that he is a big guy and I am not and I also have scoliosis, but we manage. Luckily this does not happen often.
            We are fortunate to have a very good friend that is willing to do this in an absolute emergency.
            There are a lot of threads here with information. I will stress this is how we do it, others may jump in and tell you something that works for them.
            This is a wonderful site for information. Good luck.

            Comment


              #7
              Originally posted by LindaT View Post
              I give Dave a magic bullet suppository using a glove and lubrication. I get the lubrication gel at Walmart and is inexpensive. Some people use a liquid suppository called Enemeeze. (sp?)
              After about 20 mn I use my finger (gloved of course) and make circular movements . I only go up half an inch or so. Sometimes this takes several tries, everyone is different. At first he would get AD (I hope they are teaching you about things like that) and we would stop for a few minutes.

              ...just a couple of comments regarding lubrication and AD. I used to get AD nearly every time I had a bowel movement. There is something called Lidocaine Jelly (you will need a prescription). It has done wonders in reducing my AD episodes related to bowel movements. Another thing that has helped me tremendously is taking Miralax along with a stool softener every evening. I have discovered that not allowing my BM's to get hard and/or irregular greatly reduces the chance of AD. Good luck!
              "The truth will set you free. But first, it will piss you off." -Gloria Steinem

              Comment


                #8
                Good point about the Lidocaine Jelly Danine.
                I forgot they used that the first couple months.
                He has been fortunate to not have any of those episodes for quite a while.

                Comment


                  #9
                  Thank you to everyone who replied to my post. My husband has been told about the devices that may help him to do most of the bowel program without too much assistance, but of course it will take time to be independent with these. We have no private insurance coverage, but we may qualify for 2 hours a day of outside help from a gov't agency, but they may determine that if I am capable of all of his care, then I will have to do it. I suppose everyone is right about that you do what you have to do, and that we will both eventually get over the embarrassment. Another thing that bothers me is that they are doing everything in his bed right now. They say that they just don't have the time to get him up on the commode chair every morning, so they just leave him in bed and come back to clean him up later. Most mornings, he is served his breakfast before the bowel program is even over! How is this even humane! I can't wait til he can be home again, even if I have to take care of everything, at least it will be in a bathroom, over a toilet!
                  I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. - Mother Teresa

                  Comment


                    #10
                    Are you at a rehab hospital? They only did Dave's in bed the first couple weeks when he was still in tough shape and having respitory and blood pressure issues. They did it at night there. I don't know about other places. I can see why it bothers you that they don't have time.
                    I was so mortified at first I thought I was supposed to leave. I thought about you today and what it was like those first few months.
                    After doing it a few times it really was not a big deal. It helps that we have been married a long time and have had a sense of humor. I know it is not funny, but that is how we have gotten through a lot.
                    I hope you can get some help and that there is someone looking into these things for you.
                    This is a good place for info. I wish I knew about it earlier.

                    Comment


                      #11
                      Yes he is at a rehab hospital. He has been there for 6 weeks now and he doesn't have any health issues that would prevent him from being put on a commode chair and set over the toilet. We have both questioned this several times and the nurses tell us it is because they don't have time. He needs alot of help still to transfer out of bed, so they usually just use the ceiling lift to make things faster. The therapists are working with him to improve on his sliding board transfers. 6 more weeks to go there at the very least. We have been married for 15 years now, and I think we both have a pretty good sense of humour, too. His optimism and positive attitude have made everything so far so much easier than it would have been if he had been miserable and bitter. This forum is so awesome! I came across it within the first couple sleepless nights after his accident and it has been an endless source of knowledge. Every night I learn something new
                      I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. - Mother Teresa

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                        #12
                        I really do applaude you wives that are willing to do these things. I hope your husbands really do appreciate you. I have been on my own more or less through all this. God Bless my mom and dad who helped me early on. I am bessed with good help but then it has taken me years to learn howto find and hire good people. It is so easy to forget to thank the very people that love,and care for us.

                        Thanks

                        David

                        Comment


                          #13
                          I'm not sure how my reply would help but I hope it does.
                          Your situation is much different than mine, but I understand
                          that feeling. I disliked so much the care providers sitting
                          there waiting for Mom to "go". I wanted so much for her
                          to have that privacy.
                          When it came time to assist her in her care, I felt terrible
                          having to help her in that way.
                          It took me some time to become adjusted to that, but I
                          felt I needed to get over that in order to help her.
                          Again, our situations are different.

                          Comment


                            #14
                            Originally posted by newc6c7wife View Post
                            We have no private insurance coverage, but we may qualify for 2 hours a day of outside help from a gov't agency, but they may determine that if I am capable of all of his care, then I will have to do it.

                            It is a good idea for you to learn how to do this for emergencies etc. but as suggested it is better for your relationship if you can have someone else help him with this on a regular basis. The threat of the gov’t agency deeming you capable of doing his care and cutting you off is unfair but to reduce the chances of this happening never admit to being capable or ok with doing this, especially in writing (even if you eventually are). A good doctor should be able to write some letter of support for this (your health, relationship health, your employment, family duties tc.).

                            Originally posted by newc6c7wife View Post
                            Another thing that bothers me is that they are doing everything in his bed right now. They say that they just don't have the time to get him up on the commode chair every morning, so they just leave him in bed and come back to clean him up later.


                            And yet they can somehow stretch out those 15 minute smoke breaks into 30 minute ones.

                            Originally posted by newc6c7wife View Post
                            Most mornings, he is served his breakfast before the bowel program is even over! How is this even humane! I can't wait til he can be home again, even if I have to take care of everything, at least it will be in a bathroom, over a toilet!


                            Terrible! One, he should be eating breakfast before starting bowel routine because it stimulates his body to go, and they should know this. Two, they don’t eat while on the toilet so why should he have to eat while going?

                            He probably does not want to cause problems or make enemies with the nurses but he will have to start speaking out to make them change this bad routine. If he needs to get the doctor to order this then that is what needs to be done. If he is at Lyndhurst, or in the Hamilton rehab for example they keep pushing “self directed care” all the time and when the patient starts to actually take charge (different from being demanding) then they are supposed to listen and follow direction (within reason, they are working for/with him, not as servants). A few nurses will always be lazy or bullies but most will be helpful if spoken with reasonably. In a rehab setting it is their job to get you on a routine that works so that you are ready to go home. Not just to get your routine done as easily as possible for them.

                            It is best if he self advocates when possible because they are required to listen to him more than to you, he will hopefully eventually be directing workers at home on his own, and he will be more in charge of his own situation, which is better both psychologically and logistically.

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                              #15
                              My sympathies. I remember this being the single most humiliating thing about rehab. Now it seems like a very long time ago.

                              For those recommending Lidocaine, do you use it in lieu of a lubricating jelly throughout the bp routine, or just a bit to insert the sup?

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