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Thread: "Bowel Program"

  1. #11
    Senior Member BeeBee's Avatar
    Join Date
    Dec 2004
    Washington, D.C.
    I think, if you read around much, you'll find that no topic is "off limits". SCI's and their families/friends go thru so much, and so much of it is totally unexpected and unexplained, that we are all looking for help, guidance and sometimes a shoulder to cry on. I know this site has shown me more than all the doctors/nurses/Rehab sites combined. The sad realitiy is that you must be your own advocate. If condidtions are as bad as they sound, you should make some effort towards report the facility. There is no excuse for leaving a cath in for a month or for overmedication to the point of respiratory arrest. They are being paid to care for him and they aren't doing that, even to the best of their ability (meaning they may not be SCI specialists, but they are not giving basic care).
    Depending on what caused your brother's injury (sorry, I don't remember...) his health could have been very fragile for quite some time. It took my son, a healthy 17 year old, almost 6 months to come back. And he's very young.
    Don't applogize, ever, for anything you do for your brother. If you don't help him, no one will. And don't be embarressed here. Look around, you'll see it all.

  2. #12
    Here are two resources that you may want to get and share with them:

    Neurogenic Bowel Management in Adults with Spinal Cord Injury: Clinical Practice Guidelines from the Consortium for Spinal Cord Medicine. This is appropriate for the RNs (who should be planning the care and directing the aides) and physicians. You will need physician's orders for most of this.

    Neurogenic Bowel: What You Should Know which is the consumer version of the same Clinical Practice Guideline (also available in Spanish). This is appropriate for you, your brother and the aides caring for him.

    Insist that they get and read these. There is a small fee for downloading, but they are well worth the cost.

    In addition, an excellent resource is the video "Accidents Stink!". This can be used by the staff at the nursing home, you and your brother, and for training any personal care attendants he may employ in the future. It shows how to do digital stimulation, and is very specific to the needs of people with SCI. It is inexpensive (only $10).

    Since you said your brother has not been out of bed for months, this is one major issue, and often not followed in nursing home. Bowel care (the part of the bowel program of actually getting the bowel to empty) needs to be done on the commode or toilet for it to be most successful. If done in bed, emptying will be less complete, and take longer.

    You must emphasize that manual removal and digital stimulation are NOT disimpaction. Most nurses are fearful of doing the latter, and many SNFs have policies that say that nurses do not do this. If they do not do the proper bowel care, then disimpaction may be the only option, so it is best to do proper bowel care from their stand point as well.

    I would recommend making an appointment with the director of nurses. Your faxes will probably just get put in the "round file". Make an appointment, take the documents and literature with you. Insist that he get this important aspect of his care. Get a commitment from the DON to train and supervise the staff to assure that this happens. Ask about patient representative or Ombudsman (this varies with the state), and how to file a complaint. In my state, this must be posted in the hallways in prominent locations throughout the facility. If you don't get satisfaction from the DON, make an appointment with the administrator and medical director of the facility. You may have to threaten to go to the press (and follow through if you have to). While not acceptable, what they are doing is sadly within the "standard of care" for nursing homes....only when families make a big enough stink will it change.

    What is happening as far as getting him into a decent rehabilitation facility?


  3. #13
    Peggy another great place for sci is the Shepherd Center in Atlanta. My daughter went there when she got a sci in 2004. They will train your brother and you on everything there is about sci. They do accept medicaid. They will also provide you or a family member with a apartment for like 30 days. That place is SUPER. Ther number is 404-352-2020. I think they deal with pressure sores also. They right along with Craig hospital are at the top for sci. They provide you with a notebook to take home with you that tells you just about everything related to sci. If you have a fax # I can fax you some information on whatever it may be. This notebook covers alot. Just let me know i will be glad to fax it to you tomorrow.

  4. #14

    I am sorry to hear that you are having such a difficult time with the facility he is in. As said by others here, it is very important that he get the right care. You have had two very nasty cisises already.
    As well as mobility issues, bowel, bladder, and pressure sore issues are some of the biggies in SCI and neuromuscular disease care. If done right, and with skill, proper protocol, and care, they make all the diference in the world. He will feel much better and will not needto worry about bowel accidents.

    You were saying you were bringing fruit and cranbery juice for his urinary problems, and that is good. What I do is take cranbery pills, two in the AM and 2 in the PM. I buy them at Walmart, and its fairly inexpensive that way. This will reduce the amount of sugar he is getting in his diet, as cranbery juice is loaded with sugar.Also some here use garlic pills or eat alot of garlic, as this can act as an antibiotic. Just a thought. Also be sure he is getting his "pericare" twice a day. He needs to be sure that his "male member" is cleaned each day, especially where the catheter comes out. Also you will find that a foley that has a silver tip and a hydrogel coating, inside and out will help considerably.Oh, yes for long term use, it is better if he uses 100 percent silicone. Dover puts out a really nice one, and it is VERY comfortable, even for those with sensation. I would recomend you go discuss this with his doctor. I awitched to these and found there was a HUGE difference in the number of UTI's I get. With that amount of water he may need a 4000cc night bag, Bard makes them. I found I had to, as I can be a "bubling fountain"

    I find the drink aid bottle is great for easy access to water. They have a lid with a long staw comong out of the top, that is adjustable. This will keep water available all the time and he will not have to have someone hold his cup, or glass. he just turns his head, grabs the staw with his mouth and sips. They are 1 ltr in size and he should be drinking 3-4 liters a day to help clease the catheter. These bottles are somewhat expensive, but well worth it, as it gives him independence, and prevents spills. They can be attached to his bed or chair.

    If he is able to get out of bed, and has a useable wheelchair, there is NO excuse for him being in bed for months. I was stuck in bed due to chair issues, and just got a new chair and its a big help. It is physically better AND psycologically much better for him. I would kick butt to get a proper seating eval and get a wheelchair that works for him. That wheelchair will be his life and give him the independence he so badly needs.

    I would definately get him out of the place he is in, and as others have said get him into the proper rehab facility. Its going to take work, but is definately worth it. The others here have mentioned Craig and Shepherd Centers. Do it girl, even if you have to threaten with legal action. Also you can contact your congressman or state rep, if you have to. They will kick start things and get him the care he needs. Often with the right rehab and modifications to his home, he can return home to his family and enjoy his seven year old son, and life in general.many quads are able to go back to work in some fields of work if they desire. He at least can get out in the sunshine, take his boy fishing (he'll need a lift equiped van and some adaptive stuff for holding fishng rods).

    The others here are a huge help and often have wonderful ideas and information. Do not forget that disability issues and problems involve the entire enviroment and family, so speaking of them here and asking about support and info for them as well in this web of stuff, is just as much as "SCI or disability stuff". I have found that the SCI nurses loaded with info, and willing to help. They are great as they have worked with all kinds of people in all levels of injury.

    You are to be commended, as you have been that man's lifesaver, and rope attaching him to life. Keep up the good work! Remeber, there will be hard times, but you are doing the right thing for him...hats off to you!! Good luck!!

  5. #15
    I have read the posts and do not see a single mention of a social worker being involved in trying to get your brother transferred from the SNF to a rehab facility. If you are not regularly seeing a social worker, then ask for one. If the nursing home does not have a full time social worker, call your brother's doctor and tell him/her you need a referral.
    Bowel care- agree with many of the above suggestions. Strongly encourage you to consider the $10 purchase of the Accidents Stink video mentioned above. It has won several awards in film contests because it is well done and has both sensitivity and humor. In addition it was written with the caregiver in mind, someone who isn't familiar with any spinal cord injury concepts and so explains things and actually shows digital stimulation. There are many facilities that are using this video to instruct their nursing staff.
    In all fairness to the SNF, there are only about 1/2 million persons with SCI in the US. Of those, approximately 1/2 are paraplegic and the remainder are quadriplegic. There are only a handful (relatively speaking)that reside in long term care facilites. Because this is a specialty- spinal cord injury care- and because the bowel care regime is so specific, they don't even teach it to the extend needed in nursing schools. do your best to educate the nursing staff- one at a time if needed. Buy, rent or borrow a TV/VCR combination and show the video to them yourself. Tell the director of nurses that you plan to do this and ask if she would like to see it too. Suggest that it could be used for staff education and nursing competencies.
    You mention he has been in bed for months. You don't tell us whether he is there because the staff won't get him up or he doesn't have a wheelchair to get up in (quad will likely need electric- state Medicaid will typically pay for one, be sure is ordered by qualified PT who is knowledgable about the bells and whistles ie sip and puff drive control vs chin control vs hand control, L'Bac system for electric pressure releases...) or if he has wounds that prevent him from getting up. Do your best to get the staff to get him up. If he doesn't have a wheelchair that he can get up in, see if they have a loaner. Be sure he gets up on a good cushion- a roho or Jay are both good and there are specialty cushions of those as well. His sitting surfaces need to be protected. In addition to the protection, he needs pressure releases. If he is gotten up in a loaner chair, you/the staff will need to manually tilt him back in his chair (lockt he brakes) on a regular basis. There are some differences in how frequent this needs to happen. Some rehab facilities say every 15 minutes (as does the one I work at) and others say every 30. Put a timer on him that dings so there is an audible cue for him and the staff that he needs a minute of attention. He should be tilted for a full minute.
    Good luck and find a social worker! They are invaluable and highly underrated in the medical profession.

  6. #16
    One thing I didn't ask- is your brother a veteran? Many people don't realize that SCI is considered a catastrophic injury by the VA and even if he wasn't eligible before his injury (if he was discharged with a general to honorable discharge), he may be now. If he is a veteran, call a VA. If the nearest one doesn't have an SCI center, then they will be able to give you info on where the nearest one is. Good luck.

  7. #17
    One thing that should be mentioned is that the Accidents Stink video was produced in the public domain- see the end credits. It means that it can be copied without needing the authors permission. It is available on line at for $9.95 (includes shipping). It may also be at a local medical library or a VA medical library. It was produced by the VA. It never hurts to ask if you can check it out.

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