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Thread: Hospital time...

  1. #1
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    Hospital time...

    So, after a couple of weeks of my CP mysteriously getting much worse and worse my primary care finally checked me into the hospital on Sunday (12/12). Now after five days of tests and thoughts we've made absolutely no progress. Infact the pain has continued to get even worse. The abdominal pressure pain has reached the point where I can't sit in my chair without being in excruciating pain. My bladder has reached an entirely new level. When it gets full it just burns like hell and if I don't get to it in time it sends shockwaves through my gut as my bladder empties. If I catch it in time the cathater stings like crazy both going in, out, and for quite some time afterwords. My lower back just seems to follow the rest of the pack in getting worse and that's not helping me much at all. Just a day or two prior to coming in I decided to try some D-Mannose in an attempt to fight of a potential UTI that I thought could be creating some of this problem. That was a major mistake because my bladder pain flipped out as a result and has not calmed down since. The only parallel I could draw is that D-Mannose is a sugar and as my pain has gotten worse over the last 20 months I've become more and more sensitive to sugar. As for eating and drinking they have both reached disasterous proportions now and they both bring serious pain. I'm still on my 1200mg of Neurontin 3x a day, 40mg of Baclofen 3x a day, and 20mg of Methedone 3x a day. They have put me on a Dilauded drip here in the hospital and though it is helping it doesn't seem to be doing the job. I'm petrified of the idea of going home because I could only lie in bed freaking out 24/7 prior to coming in here. Any help would be greatly appreciated as I desperately need it!

  2. #2
    I was wondering if you have seen my post to this problem below. I had pains years ago and discovered it was my internal hemorrhoid sticking out. The pain was much like you describe. I only could tolerate sitting the first week and by day seven I hurt before getting up for the half hour that day.

    Getting back to my previous post. I know a guy who has been having these pains also in his stomach. He has recently gotten an ileostomy. This he says has helped him to sit up. I am not sure what causes his stomach to cramp but gas is formed in the large intestines and the gas is what always caused me my pains. I told him about this and he has tried an ileostomy. He says he feels better but I still cannot say why he was having so much pain.


    If you have anal sores or a colon disease or infection then the illeostomy may help. I don't know what the doctors are doing. Does laying down help after a few days.



    David

  3. #3
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    I've been up once in the last five days and hurts like hell. It hurts just to lie down however not like it does when I'm up.

  4. #4
    I am so sorry...I am at a loss and way over my head on this.

    I would certainly refuse to be discharged until they get you some relief and have a plan for management. If they attempt to do so, ask for an ethics consult.

    (KLD)

  5. #5
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    Is an ethics consultant along the lines of a social worker at a hospital or is there aving me by something that distinguishes one from the other. I've seen both GI and Urology today and they don't seem to have much to contribute. I fear that there going to try to send me home in the next day or so. I basically live alone and rely on friends to help me out. My mom lives in Florida half the year thus leaving me by myself. I can't go back there alone...

  6. #6
    That sounds like an anal area problem. I would lay in bed for awhile and start feeling some relief and then the bowel program every two days just kept me down. It was not until a student nurse at the x-ray table started telling me the barium went thru faster than they were expecting. I asked why and she related her own experience saying Irritable Bowel will do this. So I would see if the anal area is suffering from hemorrhoids. This is a very nerve concentrated area and can send severe burning feeling through out the body. My back would feel like it was burnt badly. Maybe a botox shot in the anal sphincter may alleviate the pain if this is some how getting too sensitive. I am not sure if your bowel program will be affected. I don't think it would but I could be wrong about this. Lidocain (sp. ?) jelly was a numbing cream the rehab nurses used on us while doing bowels. This may help to test to see if the pain goes away and maybe staying down a day or two may also hint at the anal area being sensitive.



    David

  7. #7
    Senior Member alan's Avatar
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    Maybe you'd get some relief from an implanted pump with dilaudid (and perhaps bupivicaine with it?) If the dilaudid drip helps, a pump might. Maybe they can do a pump trial while you're in the hospital?

    I'd like to try IV dilaudid, but nobody will try it on me. Only oral.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  8. #8
    No, a social work consult is not the same as an ethics team consult. A social worker in an acute care hospital is usually consulted to get you out of there, one way or the other (nursing home, etc.).

    An ethics team consultation is instigated by staff OR the patient OR the family based on a concerned about ethical care and principles related to your care. Generally the team is made up of health care professionals (not on your case) which include chaplains, nurses, social workers, physicians, etc. with special training in ethical issues. They advise your team on the ethics issues of your case after talking with you and your team members. Pain management and appropriate discharge decisions often receive ethics consults, as do end of life decisions. Ask your nurse how you initiate this, or contact the patient advocate's office. You should have been given this information when you were admitted to the hospital. The principle here would be beneficience and limitation of suffering.

    (KLD)

  9. #9
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    I don't know if any of you might be able to shed any light on this, but I am having severe reactions to any food or drink with sugar in it. I realize that sugar can inflame pain, however not like this atleast I would think?

  10. #10
    I'm sorry...you know much more about this than I do.

    (KLD)

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