THIS IS SERIOUS SH1T say Spinal Injuries Association https://www.hippocraticpost.com/nhs/this-is-serious-sh1t-say-spinal-injuries-association/
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"Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."
-Christopher Reeve on his Paralysis -
This is a major problem in the USA as well. How about for those of you from other countries beside the UK and USA? (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. -
The worst part about this is when we're in a hospital or nursing home they think we could just **** on our own anytime we please. I won't give any details but I've been there enough times in a nursing home or hospital where I actually had to use some profanity to wake these people up. Most of the time all they want to do was attack me with Miralax. I told them it doesn't work that way. Well let me leave it at that I'm getting PO just thinking about it.
Wish I didn't know now what I didn't know then.
Bob SegerComment
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THE STRUGGLE IS REAL !!!
I was recently admitted to the hospital due to an intestinal bleed. In order to find the bleed I needed a colonoscopy. Which also meant I had to be cleaned out. The nurse on duty came waltzing in my room with a bottle of Golytely saying gleefully "look what I have for you" and was all giggly and stuff. UNTIL I reminded them I am paralyzed and cannot get out of bed on my own to go to the bathroom. Their glee suddenly turned to a look of pure hate. They begrudgingly did what they were supposed to do. Unfortunately, it took more then one go round of Golytely to get the job done - with each nursing shift despising me for not being able to go to the bathroom on my own. NO other assistance was given other than cleaning me up with each bout of evacuation. In the "end" *hahaha* the bleed was in the jejunum part of my small intestine.Comment
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After getting delirious from a a UTI years ago and landing in the hospital for several days of IV antibiotics, I realized how incredibly difficult bowel management is in the hospital.
I was out of town for school and didn’t have anyone who could go get my raised toilet seat. Eventually a very nice nurse walked over to the rehab department and a therapist tracked one down for me. Then the only suppositories they had were crappy generic biscodyl ones, not the magic bullets that work roughly ten times better. It was a huge struggle. And I can only imagine how much worse it would have been if I hadn’t been able to do it myself and able ti advocate for myself.Comment
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Next time see if you can bring in for use your own supply of Magic Bullets (or Enemeez). At our hospital if a inpatient used a med not on our formulary, the nurse could collect it from the patient and turn it into the pharmacy, which would check it and reissue for use to the ward for just that one patient. (KLD)
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I was lucky to work in a VA SCI Unit the last 28 years of my career. When our patients were hospitalized in the ICU or tele-unit the nurses would call us to come over and do the patients' bowel care, which took staff off our unit. So we did classes for all the nursing staff on those units in how to do bowel care for patients with SCI/D on their units, including the 5 components of a good bowel program and how to do dig stim. The patients had access to both Magic Bullets and Enemeez since our unit had gotten them added to the hospital formulary.
On the other hand, we had numerous problems with community nursing homes refusing to do bowel care for our patients saying it was a violation of the nurse practice act (false) or that the patients' were requesting dig stim for sexual gratification (!!!!!!) only. Fortunately we were able to have myself or our home care nurse either talk to the head nurse by phone or go out and do a class for their staff and get these issues resolved.
Not so easy for those not getting their sustaining care at a major SCI/D Center. You can try providing them with a copy of the Clinical Practice Guidelines on Bowel Care here: https://pva.tfaforms.net/14
(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.Comment
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These stories, which are consistent with what I've experienced in hospitals, are the main reason I haven't gotten a colonoscopy and also why I just won't go into the hospital. The way that nurses and also technicians just look confused and flustered when you explain that you cannot transfer; or the way they claim not to be able to find things like raised toilet seats (while charging $10K a day) just make me profoundly dispirited. Don't they notice the huge power wheelchair?
The odd thing is that PCPs and specialists who order tests or procedures requiring hospitalization seem not to understand or believe how unhelpful staff in hospitals actually are.Comment
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Please get your coloscopy when due, especially if you have high risk factors. I lost a dear friend to colon cancer 2 years ago and I miss him terribly. Most facilities do these in the outpatient setting, so you don't have to be admitted, and you may even ask to have a knowledgeable caregiver accompany you if needed. (KLD)
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