Feeling helpless

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theresa8
theresa8 Member Posts: 61
edited March 2014 in Colorectal Cancer #1
My husband was released from the hospital yesterday, he was there for three days with intraveinous antibiotics to treat an infection following his rectal surgery. Well, with oral antibiotics to complete the treatment things are not improving very much. He's still in pain coming from his left side and the rectal area. The doctor just phoned tonight to check on him and he says if he doesn't have a fever or that his pulse isn't over 100 there is no problem things are going normally. Glad to hear it, but he's in pain, his pain med doesn't seem to work so well. I can't wait until Tuesday since he's going to pass another scan to see how this infection is going. He's physicaly and emotionaly broken. I'm happy when he's sleeping and try to tend to all his needs when he's awake but this is really something for the strong at heart.He's lost 15 pounds in the last three weeks and is the shadow of his former self.
I'm not the religious kind but tonight I'm going to pray that tomorrow is better than today was. Please God give this man a break, he's such a good loving person.
I'm doing my best but I didn't think after the good news we got after his surgery that it would turn out to this nightmare. If things don't improve I'm calling his doctor tomorrow morning. Any suggestions on how to react when someone you love is dealing with pain.
Good night to all you semi colons
Theresa

Comments

  • Patteee
    Patteee Member Posts: 945
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    Theresa? One of the biggest
    Theresa? One of the biggest issue we all have that we need strong advocates for is pain management. If he is not resting, if the pain med isn't taking care of the pain- the doc needs to know and a different med or combination of meds needs to be tried. There is just no way that someone who is fighting cancer, and then surgery and infection on top of it, should be fighting pain as well. To me that is downright cruel.

    What is his pain on a scale of 1-10? Anything above a 4 should be a red flag that something different needs to happen and 5 or above is unacceptable. So get your husband to number it for you and respond accordingly. All kinds of comforting things can be done for pain- walking helps, leg and back massages- but if his pain is 5 or above, to me that is different, stronger or more pain med time.
  • JR
    JR Member Posts: 139 Member
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    Sorry to hear
    Theresa,
    I am so sorry to hear what you and your husband is going through. Setbacks are hard to deal with. Hopefully with some rest his pain will subside and things will get back on track. A good, loving caregiver, like yourself, can make a world of difference. I hope he see's some relief soon. Good luck to you both.

    John
  • carriek05
    carriek05 Member Posts: 7
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    Theresa
    My husband's (Kapper48) cancer has moved to his bladder and pelvic area. We found this out about a month ago. For about three weeks he had been in pain because of this. It has gotten much better now but about two weeks ago, it was horrible. He wouldn't eat and all he did was lay around. His pain meds were not working either. He couldn't hardly walk, it hurt when he sat, it hurt when he layed down, he could not get comfortable. We finally went to the ER where they gave him dilaudid via IV and he was then admitted into the hospital for "pain management" purposes only. When after two days, nothing was happening to get him comfortable and released from the hospital, I took my journal that I keep (it includes every single dr. appt., test, chemo, hospital stay, etc. along with notes of everything any doctor, nurse, or anyone else has to say) to the nurses station and told them I wanted to see some one in charge, i.e. hospital administrator, manager, etc. They sat down with me and I went over everything that was going on and how unhappy I was. After that stuff started happening and he went home less than 48 hours later.
    I guess my point is that you are going to have to be his voice. You are going to have to take control of the situation for him and if you are not seeing results, then you need to tell them that you want something else done to get him out of the pain he is in. You are just as much a part of this journey as he is. You are his spouse, his partner, he is the one you love and you are the one who takes care of him after they send him home from the hospital. You know him the most. The doctors don't know him well enough to know what the norm is - you do and if he is in as much pain as you say, just as my husband was, they have no fight or drive in them so therefore, you have to take the reigns. They have "pain management" specialty doctors at the hospital that can help him, just as they did with my husband, so that they can be in the comfort of their own home and not be in pain.
    Don't take me wrong, I didn't go in there causing a scence or throwing a fit, I just told them I want something done, that there's no reason with all the different pain meds out there that he has to be in this much pain.
    I wish you luck and I sure hope that your husband pain get's better very soon.
    Carrie
  • John23
    John23 Member Posts: 2,122 Member
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    Pain
    Pain... is very subjective; what is pain for me, might be only
    discomfort to someone else.

    On the "number scale", 0-1 is like a hangnail, or paper cut.
    9-10 is blacking out, and the feeling that death would be better
    than the pain. When we're ill, a 4 can seem totally intolerable.

    The pain he's experiencing can be from adhesions that form
    after abdominal surgery. Pain killers can't get rid of all the pain,
    but are usually good for the sharp, intermittent jabs. Adhesions
    can be long, drawn out pulling feelings, that pain killers don't do
    all that much for.

    Hydrocodone is a narcotic and -very easy- to become addicted
    to, but has less side effects of all the others. Withdrawal from it
    can give an overwhelming feeling of depression, as do many
    of the pain killers. Anyone that tells you that it is not addictive
    when given to a person in pain, does not know what they are
    talking about. It is addictive, and it doesn't take more than a
    few pills to do it.

    If he can deal with the pain without having to get caught up
    in pain meds, he would be much better off (just as he would be
    by not taking anti-depressants). The chemicals put more of a
    burden on the liver as it attempts to detoxify the blood, adding
    to his woes and ill health.

    Making his life as comfortable to him as possible, is best. Peace,
    quiet, and fresh air, were always the best course of action for
    recovery.

    Understanding the pain associated with the healing process,
    and accepting that pain as part of the healing process, can
    sometimes make that pain more bearable.

    Maybe toss in a beer and a new issue of Playboy?

    Things will improve; give him our best wishes!


    John
  • clier
    clier Member Posts: 29
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    so sorry
    that things are tough for your man now. I have big abdominal pain (Colon Cancer w/ mets to liver & lungs...liver sack & pleura cause the pain) & I use 1-2 Oxycodone/day. Not worried about addiction. In addition, I wear a small Fentanyl patch (50 mcg/hr)...it's like a clear bandaid that you change every 2-3 days and it works so, so well. Push for that. Think about medical mj, too? I'm not a pot smoker, but friends tell me it works well & is available in pill form. I hope this, and my prayers & good wishes, help.
  • coloCan
    coloCan Member Posts: 1,944 Member
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    clier said:

    so sorry
    that things are tough for your man now. I have big abdominal pain (Colon Cancer w/ mets to liver & lungs...liver sack & pleura cause the pain) & I use 1-2 Oxycodone/day. Not worried about addiction. In addition, I wear a small Fentanyl patch (50 mcg/hr)...it's like a clear bandaid that you change every 2-3 days and it works so, so well. Push for that. Think about medical mj, too? I'm not a pot smoker, but friends tell me it works well & is available in pill form. I hope this, and my prayers & good wishes, help.

    Some painkillers, like percocet, while helpful,
    may also cause constipation. There is also a painpatch that adheres to your arm that stays 72 hours called Fentanyl.....Steve
  • WinneyPooh
    WinneyPooh Member Posts: 318
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    clier said:

    so sorry
    that things are tough for your man now. I have big abdominal pain (Colon Cancer w/ mets to liver & lungs...liver sack & pleura cause the pain) & I use 1-2 Oxycodone/day. Not worried about addiction. In addition, I wear a small Fentanyl patch (50 mcg/hr)...it's like a clear bandaid that you change every 2-3 days and it works so, so well. Push for that. Think about medical mj, too? I'm not a pot smoker, but friends tell me it works well & is available in pill form. I hope this, and my prayers & good wishes, help.

    Theresa
    Theresa, Sorry your husband is in pain, As you know we are on the same time line, tell your hubby that i too an having pain, ( more so then with the last surgery) and mine is mostly around the inside belly region, along the incisision site, and arould the ileo, Mostly I lost a good 20lb over the past few weeks and i discoved how to slow that down, if you think he is loosing to much weight, have eat more protien, and less carbs, the protien takes longer to digest therefore there is more chance to absord the food, unlike carb, that breakdown and shoot threw in what seems like one continue moment.

    As for pain management, all the pain meds the doc prescribe will only work Temp. good being that our bodies adjust and require more as we take them, If possible have him only take at night and try short walks to relieve pain during the day.

    And if he is willing and able MaryJane is still the best,
    Winney
  • zenmonk
    zenmonk Member Posts: 198
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    pain
    With my surgery they had to try a few different pain medicines/combinations until they found something that worked. Morphine and phentnyl did nothing for me but dilauded worked great. It is a balancing act with these kinds of surgerys because narcotics will slow down your digestive system when you are actually trying to wake it up after surgery. Pain management is a tricky thing they you may have to deal with for awhile. You just have to keep trying different things until you find something that works. As far as the emotions it is really a hard thing to deal with. Its better to be strong. I find strength in the Word. You may want to talk to a chaplain or social worker who can provide you with the best resources. Its hard but you have to be strong even when your weak. Praying for you.