Odd place

coloCan

pluckey said:

Opium tincture
I was on a regint of opium tincutre and lomotil.
This time last year, 4 months into my dx, surgery,ileo etc I was major anorexic - imy ileo output was frequent and loose- losing too much nutrition, i wasn't eating anyways etc...i went to hospital because of a possible blockage and pain in rectum..anyway, other things included me getting good TPN? vein in my neck..tube down my nose into my stomach etc..

The surgeon had me go on tincutre of opium- i would dispense it in a tiny vial/plunger..tasted nasty. But it WORKED. Along with lomotil, my output began to get thick..so much so that my ususal cleaning of my bag wasn't so easy (I drained the bag and used a large plunger/shot thingy from the ER to rinse my bag)
My insurance did cover it. It only took a week or so to get thicker output. I didnt OD or anything....!!!

((hugss))

Peggy

What if,with concurrence from main doctor treating this, Rick,
if you were strong/healthy enough to stop eating solid food and limit liquid (if this had no negative effect on you in any way)for a day or two so nothing went into you, maybe diahrrea would cease and not return when you resume eating.....I don't know--just a dumb thought i guess......steve

coloCan

pluckey said:

Opium tincture
I was on a regint of opium tincutre and lomotil.
This time last year, 4 months into my dx, surgery,ileo etc I was major anorexic - imy ileo output was frequent and loose- losing too much nutrition, i wasn't eating anyways etc...i went to hospital because of a possible blockage and pain in rectum..anyway, other things included me getting good TPN? vein in my neck..tube down my nose into my stomach etc..

The surgeon had me go on tincutre of opium- i would dispense it in a tiny vial/plunger..tasted nasty. But it WORKED. Along with lomotil, my output began to get thick..so much so that my ususal cleaning of my bag wasn't so easy (I drained the bag and used a large plunger/shot thingy from the ER to rinse my bag)
My insurance did cover it. It only took a week or so to get thicker output. I didnt OD or anything....!!!

((hugss))

Peggy

What if,
damn regurgitation!!!!!!

RickMurtagh

pluckey said:

Opium tincture
I was on a regint of opium tincutre and lomotil.
This time last year, 4 months into my dx, surgery,ileo etc I was major anorexic - imy ileo output was frequent and loose- losing too much nutrition, i wasn't eating anyways etc...i went to hospital because of a possible blockage and pain in rectum..anyway, other things included me getting good TPN? vein in my neck..tube down my nose into my stomach etc..

The surgeon had me go on tincutre of opium- i would dispense it in a tiny vial/plunger..tasted nasty. But it WORKED. Along with lomotil, my output began to get thick..so much so that my ususal cleaning of my bag wasn't so easy (I drained the bag and used a large plunger/shot thingy from the ER to rinse my bag)
My insurance did cover it. It only took a week or so to get thicker output. I didnt OD or anything....!!!

((hugss))

Peggy

Glad to hear
Glad to hear of someone's experience using opium and that you did not die! I hope my insurance will cover it. It heard great things about it, but nothing from patients, all from doctors.
Thanks Peggy!

RickMurtagh

coloCan said:

What if,
damn regurgitation!!!!!!

Laf
Laf

RickMurtagh

coloCan said:

What if,with concurrence from main doctor treating this, Rick,
if you were strong/healthy enough to stop eating solid food and limit liquid (if this had no negative effect on you in any way)for a day or two so nothing went into you, maybe diahrrea would cease and not return when you resume eating.....I don't know--just a dumb thought i guess......steve

Eating
Steve,
I tried not eating for 2.5 days. That is what I did (for a day) if I had diarrhea for more than a day. That got me back on track quickly before, but not this time. The second i started eating again it was back. Thanks for the thought though.

coloCan

RickMurtagh said:

Glad to hear
Glad to hear of someone's experience using opium and that you did not die! I hope my insurance will cover it. It heard great things about it, but nothing from patients, all from doctors.
Thanks Peggy!

I can tell ya about opium..........
but that was years ago and for different purposes..........(Always loved John Lee Hooker)

steve

Nana b

coloCan said:

I can tell ya about opium..........
but that was years ago and for different purposes..........(Always loved John Lee Hooker)

steve

Thanks for sharing-
I have cancer but am so fortunate that I have a normal colon function, it must be so hard on everyone that doesn't. Just carrying the chemo bag was harsh for me, a kick of reality.

I have been fortunate with my husband, although we are not the same as we were before dx, we still remain best friends and that is very comforting and enough for me to feel wanted, needed if not whole!

There will always be a missing part of me, the easy going soul, but I am doing good spiritually and ready to face my maker with a smile on my face.

My life is comforting, and I wish that for all! So sorry, that others are suffering more then I.

impactzone

Nana b said:

Thanks for sharing-
I have cancer but am so fortunate that I have a normal colon function, it must be so hard on everyone that doesn't. Just carrying the chemo bag was harsh for me, a kick of reality.

I have been fortunate with my husband, although we are not the same as we were before dx, we still remain best friends and that is very comforting and enough for me to feel wanted, needed if not whole!

There will always be a missing part of me, the easy going soul, but I am doing good spiritually and ready to face my maker with a smile on my face.

My life is comforting, and I wish that for all! So sorry, that others are suffering more then I.

I hear all of you.. numb
I hear all of you.. numb sometimes and just feel like my future and families future was stolen. I do not have that carefree part of me anymore and I know that frustrates people around me. I can fake it but it is not real...I just want our govt to put the money and resources behind fighting this disease as they do on stupid stuff (take your pick). I so hear all of you and must feel like what soldiers did in Dec of 1944 in Europe after fighting for 4 years and seeing some progress but too many pass away. It just sucks...
All my best to the brave who fight on and provide inspiration.
Chip

zenmonk

disconnect
Somebody warned me of the same type of feelings before I had them. What I describe as a disconnect. I havent quite figured it out yet.

HollyID

Rick, you have just put to paper what most of us feel....
I have to sometimes fight to maintain this facade here, on facebook and in real life. My whole existence has been altered and who knows if this freaking cancer is going to come back or not. I hold this positive attitude around my family because that's what they want and NEED to see. The way I used to live has been permanently removed from my life. When I go somewhere, I often scope to see where the nearest bathroom is. Sometimes things happen without warning. I hate what my body has become. I have an excellent support system in my husband and I don't think I could love him anymore than I already do.

Also, like you, I used humor to get through this. I was always upbeat about treatments, even though I did sometimes cry because just when I start to feel better, I have to go back to the clinic to be infused more freaking poison. I hated those days. Sometimes I wouldn't cry at all and just go like a zombie and get it done. No emotions either way. Just more poison, please. I would never let my family see this. They had no idea how I felt, and no offense to you men, but my husband couldn't catch a clue unless you threw it in his face. He had no idea when I felt bad. Maybe that was his way of dealing with this. I'm sure he's had the same thoughts that I do about my survival. What would he do if I was gone? What would become of my kids and their kids? He doesn't say anything, though, and I don't ask.

I've read of many stage III'ers who succumb to this beast and what if I'll be one of them? What if it comes back with a vengeance and I don't make it after all? I've made peace with God. I'm not afraid to die, but I'm selfish, I want to stay with my family, too. What if I don't see my kids get married or have kids? This bombards my thoughts almost constantly. I'm a natural worrier anyway. I inherited that from my mother.

Rick, I don't blog, but I've heard that's a good way to get feelings and thoughts put out on paper. I'm not really depressed either. I often feel survivors guilt. Here I am, living in NEDsville and so many are dying around us. Why do I feel guilty for living and doing well? Is it our nature to feel this way? Like Herdizziness, I almost feel like I needed a vacation from the cancer boards. Crap, now I'm crying for no reason. Maybe we all just need to vent once in a while. We've all become so close that your hurts become ours. I don't know. I do know that at this moment, I have more to be thankful for than I can know. I have excellent oncs, excellent chemo nurses, excellent family and friends who show support all the time. I still, obviously, get pissed at life, but I don't stay there too long or I won't ever get out of my funk.

Rick, I am so glad that you're in NEDsville like I am. I'm glad you're done with chemo. I'm jealous and thrilled that you have one grandchild and one of the way. Twenty-nine years is a great number and thirty is even better.

Here's to us! I almost need an adult beverage now.

eric38

HollyID said:

Rick, you have just put to paper what most of us feel....
I have to sometimes fight to maintain this facade here, on facebook and in real life. My whole existence has been altered and who knows if this freaking cancer is going to come back or not. I hold this positive attitude around my family because that's what they want and NEED to see. The way I used to live has been permanently removed from my life. When I go somewhere, I often scope to see where the nearest bathroom is. Sometimes things happen without warning. I hate what my body has become. I have an excellent support system in my husband and I don't think I could love him anymore than I already do.

Also, like you, I used humor to get through this. I was always upbeat about treatments, even though I did sometimes cry because just when I start to feel better, I have to go back to the clinic to be infused more freaking poison. I hated those days. Sometimes I wouldn't cry at all and just go like a zombie and get it done. No emotions either way. Just more poison, please. I would never let my family see this. They had no idea how I felt, and no offense to you men, but my husband couldn't catch a clue unless you threw it in his face. He had no idea when I felt bad. Maybe that was his way of dealing with this. I'm sure he's had the same thoughts that I do about my survival. What would he do if I was gone? What would become of my kids and their kids? He doesn't say anything, though, and I don't ask.

I've read of many stage III'ers who succumb to this beast and what if I'll be one of them? What if it comes back with a vengeance and I don't make it after all? I've made peace with God. I'm not afraid to die, but I'm selfish, I want to stay with my family, too. What if I don't see my kids get married or have kids? This bombards my thoughts almost constantly. I'm a natural worrier anyway. I inherited that from my mother.

Rick, I don't blog, but I've heard that's a good way to get feelings and thoughts put out on paper. I'm not really depressed either. I often feel survivors guilt. Here I am, living in NEDsville and so many are dying around us. Why do I feel guilty for living and doing well? Is it our nature to feel this way? Like Herdizziness, I almost feel like I needed a vacation from the cancer boards. Crap, now I'm crying for no reason. Maybe we all just need to vent once in a while. We've all become so close that your hurts become ours. I don't know. I do know that at this moment, I have more to be thankful for than I can know. I have excellent oncs, excellent chemo nurses, excellent family and friends who show support all the time. I still, obviously, get pissed at life, but I don't stay there too long or I won't ever get out of my funk.

Rick, I am so glad that you're in NEDsville like I am. I'm glad you're done with chemo. I'm jealous and thrilled that you have one grandchild and one of the way. Twenty-nine years is a great number and thirty is even better.

Here's to us! I almost need an adult beverage now.

I think it is normal to have
I think it is normal to have some post traumatic stress. This is my second bout with cancer. Years ago I had a different kind of cancer that I overcame and I had the same problem for a while. Nothing in life gave me too much of a thrill. People would take me out and ask me if I had fun and my thoughts were it was pleasant but I dont feel what fun is right now. The good news is I did get over it and started enjoying life again.

cmcl

Wow, I can't believe you have written everything that I have been feeling for the past week or so. I'm 46 yrs old woman, I had surgery May 7, second recurrence from 6/03, a total colectomy. I have been doing pretty well with diet and bowels. My family could not have been more supportive. My sister was at my side for my every need for a month and a half. I couldn't have asked for better care. I would have been lost without her.
Like I said, just this past week or so, I have been very cranky and irritable. I really didn't know why. I always seem to come to this board when I'm looking for answers. I already feel better about myself after reading all of your posts. I guess it is just hitting me that a large piece of me is gone and I'll never get it back. My whole life has changed and no matter how positive I remain, my old life is gone. It's hard sometimes when my sister and friends want me to do things that we used to do together like stay at the beach for HOURS on end, and then go to dinner at 8:00. I can't eat that late anymore unless I want to be in the bathroom all night. It's hard enough getting a good nights sleep.I worry about what I'll be able to eat or where will I go to the bathroom on other kinds of outings. I kind of get the eye roll like what's the matter with you?
No matter how much a person has been at your side they just don't understand what it is really like to have to go through life with no colon. Wondering how will this meal affect me, or where am going to go to the bathroom. Right now I'm just happy being near home.
I may not post very often, but I do read what everyone has to say. I thank you all for your wisdom and sometimes the answers, and knowing that there are others who are feeling the same as me.

coolvdub

cmcl said:

Wow, I can't believe you have written everything that I have been feeling for the past week or so. I'm 46 yrs old woman, I had surgery May 7, second recurrence from 6/03, a total colectomy. I have been doing pretty well with diet and bowels. My family could not have been more supportive. My sister was at my side for my every need for a month and a half. I couldn't have asked for better care. I would have been lost without her.
Like I said, just this past week or so, I have been very cranky and irritable. I really didn't know why. I always seem to come to this board when I'm looking for answers. I already feel better about myself after reading all of your posts. I guess it is just hitting me that a large piece of me is gone and I'll never get it back. My whole life has changed and no matter how positive I remain, my old life is gone. It's hard sometimes when my sister and friends want me to do things that we used to do together like stay at the beach for HOURS on end, and then go to dinner at 8:00. I can't eat that late anymore unless I want to be in the bathroom all night. It's hard enough getting a good nights sleep.I worry about what I'll be able to eat or where will I go to the bathroom on other kinds of outings. I kind of get the eye roll like what's the matter with you?
No matter how much a person has been at your side they just don't understand what it is really like to have to go through life with no colon. Wondering how will this meal affect me, or where am going to go to the bathroom. Right now I'm just happy being near home.
I may not post very often, but I do read what everyone has to say. I thank you all for your wisdom and sometimes the answers, and knowing that there are others who are feeling the same as me.

same here
I can identify with what each of you has said. Sometimes I just feel no joy in things that made me happy in the past. I also used humor to get through it. And I always had a positive attitude around my family,friends and co-workers, if they they only knew how I really felt they would cringe. I was in a funk the last couple of days. I seem to be over it now and hope it stays away for a long time, I was thinking of quitting a really good job. It's hard to adjust to life after cancer, the game has forever been changed once you go through what we have. Feelings of sorrow when reading some of the seemingly constant bad news here, had my wife telling me to stay away. No way to that, just reading the thoughtful posts here make me feel life is good. Also knowing all of us "understand", is what makes coming here feel like my safe place. Rick I can understand how you would feel about the ileo, hearing some of the bad outcomes after a reversal have really got me thinking. Fear of the unknown outcome after reversal are making me think long and hard on whether or not to do it. I hope you can find some inner peace to feel better about things.

Don

HollyID

eric38 said:

I think it is normal to have
I think it is normal to have some post traumatic stress. This is my second bout with cancer. Years ago I had a different kind of cancer that I overcame and I had the same problem for a while. Nothing in life gave me too much of a thrill. People would take me out and ask me if I had fun and my thoughts were it was pleasant but I dont feel what fun is right now. The good news is I did get over it and started enjoying life again.

Glad I am out of my funk....
Eric, you are absolutely right. PTSD is as real in war as in cancer. Well, cancer is a war. A war with your body. Life is good again and for some reason, a PM I got after I wrote that was kind of a buttkicker. Yes, LIFE IS GOOD!!