Sundanceh/Craig

So weird - I dropped the kids at school and Craig popped into my head and I signed in to post a hello to our friend.

Sundanceh said:

Thanks

I appreciate the post Winter...thank you.  And also thanks to everyone who posts on this thread.

i basically don't eat anymore holding a little over buck 50 for weight.  Along with cancer and pain I've got digestive issues with bowel from pain pills and who knows what else.

i stopped urinating suddenly....only way to go is hot water shower....this makes going places or making any kind of appt s challenge and difficult... a real challenge...went to urologist and tests were inconclusive.

i decided to see my colorectal guy and he did physical exam.  He initially thinks partial impactiion could be severe.  Told me to do 30 enemas but I'm so sore there the plastic tip hurts on insertion.  Im already going 12-20# a day without....and without eating how am I producing?

Im basically living off of chocolate milk and bites of fig newton or some cookie...sometimes one pancake.

I'm caught in a vicious cycle I cannot currently escape from.....it's scary.  Hope it's not a tumor revealing itself...there is so much pressure in there just constant.

So I will be going in for a flex sigmoid exam to see what he can see.  Im worried all he sees will be $hit...so many things to worry about.  Outside of dr appt I'm still mostly bedridden except for bathroom runs, so painful.

So Sundance just has too much to fight it seems....I'm sad that the days are rolling past and I now find myself a prisoner of my own body.  And I lose ground when I have to stop chemo for surgery.  I could not make my last infusion because it would take too long with waiting on labs, dr visit and infusion itself...the urge to pee and being unable to go is painful and frightening event.

Hopefully we"lol find an answer...this is no life and I've lost much functionally this time through...I keep losing and not winning...part of me just wants to die some days...but I just hang on as best I can.

What happened?

So much I have not told you....did not want to burden the community with my troubles so I've kept quiet about it.....the holidays and all that.

Were I ever to get out of this mess it would be my greatest trick ever!

The new hospital is opening and its supposed to be real nice with flat panels and better food I won't be able to eat:) I should be seeing a lot of the new place in '15. 

Still trying to get back surgery...I continue to give to them but they have not given back to me...but the word is still trying; trial ends next month.

I miss my old life very much...my retirement sucks due to issues and financially difficult as well.

I really miss all of you...miss being what I was here and to my wife.....she handles most everything now and still works full time career.

What they told us from the beginning rings loud and true today - "If you have your health then you are blessed."

I would add that when you can go to the restroom with no problemS / you're truly blessed and fortunate...it's a gift that most of us take for granted.  

I could use a prayer or two if you had one to spare:). Best wishes will work as well...I need some help and feel like I'm slipping or something.

Thanks for checking on me...now you know why I kept my mouth shut:)

Love you guys with what I've got left.  Hope to get out some of this if its in the cards to do so.

Take care...youve got me beat Winter.  I can barely do anything and read where others are living their cancer more fully....part of me longs for that so much....it hurts.

Hope I can rejoin you once again:)

All my best to all - keep fighting!

I still plan to - for awhile at least.

-Craig

Hi Craig, I'm glad to see you are able to post and wish you good vibes and answers to your current issues.  It's so true, if you have your health, you're blessed but more than that, if you have your health and realize the value in it, you're seriously ahead of most other people.  Keep fighting=)  Helen 

Sundanceh said:

Thanks

I appreciate the post Winter...thank you.  And also thanks to everyone who posts on this thread.

i basically don't eat anymore holding a little over buck 50 for weight.  Along with cancer and pain I've got digestive issues with bowel from pain pills and who knows what else.

i stopped urinating suddenly....only way to go is hot water shower....this makes going places or making any kind of appt s challenge and difficult... a real challenge...went to urologist and tests were inconclusive.

i decided to see my colorectal guy and he did physical exam.  He initially thinks partial impactiion could be severe.  Told me to do 30 enemas but I'm so sore there the plastic tip hurts on insertion.  Im already going 12-20# a day without....and without eating how am I producing?

Im basically living off of chocolate milk and bites of fig newton or some cookie...sometimes one pancake.

I'm caught in a vicious cycle I cannot currently escape from.....it's scary.  Hope it's not a tumor revealing itself...there is so much pressure in there just constant.

So I will be going in for a flex sigmoid exam to see what he can see.  Im worried all he sees will be $hit...so many things to worry about.  Outside of dr appt I'm still mostly bedridden except for bathroom runs, so painful.

So Sundance just has too much to fight it seems....I'm sad that the days are rolling past and I now find myself a prisoner of my own body.  And I lose ground when I have to stop chemo for surgery.  I could not make my last infusion because it would take too long with waiting on labs, dr visit and infusion itself...the urge to pee and being unable to go is painful and frightening event.

Hopefully we"lol find an answer...this is no life and I've lost much functionally this time through...I keep losing and not winning...part of me just wants to die some days...but I just hang on as best I can.

What happened?

So much I have not told you....did not want to burden the community with my troubles so I've kept quiet about it.....the holidays and all that.

Were I ever to get out of this mess it would be my greatest trick ever!

The new hospital is opening and its supposed to be real nice with flat panels and better food I won't be able to eat:) I should be seeing a lot of the new place in '15. 

Still trying to get back surgery...I continue to give to them but they have not given back to me...but the word is still trying; trial ends next month.

I miss my old life very much...my retirement sucks due to issues and financially difficult as well.

I really miss all of you...miss being what I was here and to my wife.....she handles most everything now and still works full time career.

What they told us from the beginning rings loud and true today - "If you have your health then you are blessed."

I would add that when you can go to the restroom with no problemS / you're truly blessed and fortunate...it's a gift that most of us take for granted.  

I could use a prayer or two if you had one to spare:). Best wishes will work as well...I need some help and feel like I'm slipping or something.

Thanks for checking on me...now you know why I kept my mouth shut:)

Love you guys with what I've got left.  Hope to get out some of this if its in the cards to do so.

Take care...youve got me beat Winter.  I can barely do anything and read where others are living their cancer more fully....part of me longs for that so much....it hurts.

Hope I can rejoin you once again:)

All my best to all - keep fighting!

I still plan to - for awhile at least.

-Craig

My dear friend, it pains me deeply to hear of your troubles, but that doesn't mean you shouldn't share your pain with us.  You mean so much to many of us here and I'm sure that everyone who hasn't "met" our Lion will support you no matter what the circumstances.  You are often in my thoughts and I pray that you'll find some relief from your pain. You have helped me over the years more than you'll ever know with your encouragement, insight, caring and loving support.

Hugs (())

Cynthia

Sundanceh said:

Thanks

I appreciate the post Winter...thank you.  And also thanks to everyone who posts on this thread.

i basically don't eat anymore holding a little over buck 50 for weight.  Along with cancer and pain I've got digestive issues with bowel from pain pills and who knows what else.

i stopped urinating suddenly....only way to go is hot water shower....this makes going places or making any kind of appt s challenge and difficult... a real challenge...went to urologist and tests were inconclusive.

i decided to see my colorectal guy and he did physical exam.  He initially thinks partial impactiion could be severe.  Told me to do 30 enemas but I'm so sore there the plastic tip hurts on insertion.  Im already going 12-20# a day without....and without eating how am I producing?

Im basically living off of chocolate milk and bites of fig newton or some cookie...sometimes one pancake.

I'm caught in a vicious cycle I cannot currently escape from.....it's scary.  Hope it's not a tumor revealing itself...there is so much pressure in there just constant.

So I will be going in for a flex sigmoid exam to see what he can see.  Im worried all he sees will be $hit...so many things to worry about.  Outside of dr appt I'm still mostly bedridden except for bathroom runs, so painful.

So Sundance just has too much to fight it seems....I'm sad that the days are rolling past and I now find myself a prisoner of my own body.  And I lose ground when I have to stop chemo for surgery.  I could not make my last infusion because it would take too long with waiting on labs, dr visit and infusion itself...the urge to pee and being unable to go is painful and frightening event.

Hopefully we"lol find an answer...this is no life and I've lost much functionally this time through...I keep losing and not winning...part of me just wants to die some days...but I just hang on as best I can.

What happened?

So much I have not told you....did not want to burden the community with my troubles so I've kept quiet about it.....the holidays and all that.

Were I ever to get out of this mess it would be my greatest trick ever!

The new hospital is opening and its supposed to be real nice with flat panels and better food I won't be able to eat:) I should be seeing a lot of the new place in '15. 

Still trying to get back surgery...I continue to give to them but they have not given back to me...but the word is still trying; trial ends next month.

I miss my old life very much...my retirement sucks due to issues and financially difficult as well.

I really miss all of you...miss being what I was here and to my wife.....she handles most everything now and still works full time career.

What they told us from the beginning rings loud and true today - "If you have your health then you are blessed."

I would add that when you can go to the restroom with no problemS / you're truly blessed and fortunate...it's a gift that most of us take for granted.  

I could use a prayer or two if you had one to spare:). Best wishes will work as well...I need some help and feel like I'm slipping or something.

Thanks for checking on me...now you know why I kept my mouth shut:)

Love you guys with what I've got left.  Hope to get out some of this if its in the cards to do so.

Take care...youve got me beat Winter.  I can barely do anything and read where others are living their cancer more fully....part of me longs for that so much....it hurts.

Hope I can rejoin you once again:)

All my best to all - keep fighting!

I still plan to - for awhile at least.

-Craig

  I'm on 80mg oxycodone/40 naloxone. The naloxone is supposed to stop opiate induced constipation but itdoes not. Every time I take my pain pills I take two dulcolax and two of three coloxyl. I have almost gotten to like the taste of moviprep I  drink so much of it. I take 150mg of cyclosporine daily. Another constipating agent. I am sitting here at the puter , It si just past midnight and I am waiting for the microlax enema to work. It is taking its time. I find severe constipation one of the most terrifying ordeals that I have faced. Every time my bowels open it is a major victory. My heart goes out to you . Good luck with everything, if that sounds lame mate it probably is I just don't know what else to say.. Ron who is also full of ít.

Sundanceh said:

Thanks

I appreciate the post Winter...thank you.  And also thanks to everyone who posts on this thread.

i basically don't eat anymore holding a little over buck 50 for weight.  Along with cancer and pain I've got digestive issues with bowel from pain pills and who knows what else.

i stopped urinating suddenly....only way to go is hot water shower....this makes going places or making any kind of appt s challenge and difficult... a real challenge...went to urologist and tests were inconclusive.

i decided to see my colorectal guy and he did physical exam.  He initially thinks partial impactiion could be severe.  Told me to do 30 enemas but I'm so sore there the plastic tip hurts on insertion.  Im already going 12-20# a day without....and without eating how am I producing?

Im basically living off of chocolate milk and bites of fig newton or some cookie...sometimes one pancake.

I'm caught in a vicious cycle I cannot currently escape from.....it's scary.  Hope it's not a tumor revealing itself...there is so much pressure in there just constant.

So I will be going in for a flex sigmoid exam to see what he can see.  Im worried all he sees will be $hit...so many things to worry about.  Outside of dr appt I'm still mostly bedridden except for bathroom runs, so painful.

So Sundance just has too much to fight it seems....I'm sad that the days are rolling past and I now find myself a prisoner of my own body.  And I lose ground when I have to stop chemo for surgery.  I could not make my last infusion because it would take too long with waiting on labs, dr visit and infusion itself...the urge to pee and being unable to go is painful and frightening event.

Hopefully we"lol find an answer...this is no life and I've lost much functionally this time through...I keep losing and not winning...part of me just wants to die some days...but I just hang on as best I can.

What happened?

So much I have not told you....did not want to burden the community with my troubles so I've kept quiet about it.....the holidays and all that.

Were I ever to get out of this mess it would be my greatest trick ever!

The new hospital is opening and its supposed to be real nice with flat panels and better food I won't be able to eat:) I should be seeing a lot of the new place in '15. 

Still trying to get back surgery...I continue to give to them but they have not given back to me...but the word is still trying; trial ends next month.

I miss my old life very much...my retirement sucks due to issues and financially difficult as well.

I really miss all of you...miss being what I was here and to my wife.....she handles most everything now and still works full time career.

What they told us from the beginning rings loud and true today - "If you have your health then you are blessed."

I would add that when you can go to the restroom with no problemS / you're truly blessed and fortunate...it's a gift that most of us take for granted.  

I could use a prayer or two if you had one to spare:). Best wishes will work as well...I need some help and feel like I'm slipping or something.

Thanks for checking on me...now you know why I kept my mouth shut:)

Love you guys with what I've got left.  Hope to get out some of this if its in the cards to do so.

Take care...youve got me beat Winter.  I can barely do anything and read where others are living their cancer more fully....part of me longs for that so much....it hurts.

Hope I can rejoin you once again:)

All my best to all - keep fighting!

I still plan to - for awhile at least.

-Craig

I, too, am so glad to read your update, as painful as it sounds.  I have no advice for you.  I'm still struggling with the needless suffering my husband and so many of you are having.  I hate this disease and what it does to all of us.  I am trying not to dwell on the all the bad images, but that is all I can seem to picture.  I have 8 large picture boards from my husband's service and I have them all around me in my bedroom.  I look at his smiling face (in most of the pictures) when I go to sleep and when I wake up.  We had many good times in the 33 years we were together so I try to concentrate on that and not the past 2 years of cancer.  I even look at the pictures and say to myself "Before cancer, after cancer, etc"  I am reading a book titled "The Love Never Ends" and REALLY trying to find the good in my grief.  It does give me hope.

I know from my husband's experiences, the pain from cancer and constipation are all consuming so I can understand some of your issues.  I wish you well, friend

Linda

coloCan said:

Craig:maybe look into something called Juven and another

called anamorelin,both of which may help with appetite,weight gain due to cachexia

http://medicalxpress.com/print290689419.html

(ignore the elderly part)

www.eurekalert.org/pub_releases/2014-09/esfm-aia092614.php

(Don't know if this will help;have suggested these before) 

 

 

 

They may have to "roto rooter" me to clean me out....how embarrassing.

i feel alone with this but know I am not.  Apparently this is not uncommon as we age...not all of us but some.

these are some of the darkest days of my life and I dont sat that lightly.  I'm trying to find any joy in life but difficult as you can see.

thanks for listening...great seeing everyone.  

Wish Santa would slip some health down the old chimney....too much to ask for I suppose....I'll hope anyway....this could be one of my last Xma.  Don't know how long I'll last against cancer but wish I could cure these ailments and improve some QOL while there is time.

this can be such a difficult life - a facade of life for those stricken with illness and a true life nightmare for so many of us....it saddens me so to see it all.

thanks again for posting to me:)

-Craig

pluckey said:

Craig, my heart aches for all

Craig, my heart aches for all you continue to endure.  Why does this remain your burden to bear?  

Please ask your doctor about taking Tincture of opium.  It was the one and only thing that stopped my constant cycle of diarreah all day long and the chronic weightloss.  When I was down to 90 lbs and put on a feeding tube, that was the last resort.  Once Daily - the Opium drops on the tongue started firming up my waste matter in a few days, so I was able to retain nutrition even from small amount of food i was eating. I was on a colostomy bag at the time, so not all the pain on my bottom you are going through. Once that improvement was made, my ostomy was reversed as well.  May be worth a shot Craig.

It was a major accomplishment Craig and allowed me to get my liver surgery because i got fattened up and stronger.

 

Prayers for you and Kim- ((hugs))

Peggy

Can you juice, do you have a juicer?  4 organic carrots amd 2 granny apples With two seeds from apples (once a day) Do this at least 3 times a day.   Gerson states that infants can live off of only carrotts. Lots of nutrients.  I try those and of course the kale, carrott and apple one. 

My Nana lived to 101 and all she ate was purred veggies. In bed for over 10 years  Every time she ended up in the hospital and docs said to say good bye, she came right out of there, smiling.  

God bless you. Praying. 

  For those that have never had to take opiate based pain killers , they have a very dark side. Their control of pain is amazingly good. Their major downfall is that they literally put the my bowel to sleep. That stops motility, the caterpillar like movement of the large and small intestines that moves food and waste thru. Fibre is no use in fact it adds to the problem by building brick walls in the intestines particularly because most of us have areas where the colon has stuck to itself during operations ie adhesions. Compaction is hard to shift. The first prblem is restarting the motility. I take dulcolax which is the same biscodyl we take during our scope prep. I have to use a stool softener to loosen up the compaction. I have to drink a lot more water than normal to provide a medium for the stool softeners to get to the blockage, I use moviprep , up to five sachets a day . It is the same as the scope prep  and it helps to restart motility and soften areas of compaction. I can only eat snall meals which contain some soft fibre. Things like green peas ,pears but no crude or coarse fibre. Prune juice helps but not too much as bloating does not help issues. And last but not the least the microlax enemas. These little suckers can be life savers. I have developed an early warning system . I can definitely feel a blockage as it happens. Proof is when I try to go to the loo and strain for no result, That is the time to use an enema. Break it up before it becomes serious. I know it is not a pleasant subject but I also suffer from pulmonary odeema. When I block up pretty soon I can't breathe and that really panics me. Cheers to all. Ron.

Sundanceh said:

Thanks

I appreciate the post Winter...thank you.  And also thanks to everyone who posts on this thread.

i basically don't eat anymore holding a little over buck 50 for weight.  Along with cancer and pain I've got digestive issues with bowel from pain pills and who knows what else.

i stopped urinating suddenly....only way to go is hot water shower....this makes going places or making any kind of appt s challenge and difficult... a real challenge...went to urologist and tests were inconclusive.

i decided to see my colorectal guy and he did physical exam.  He initially thinks partial impactiion could be severe.  Told me to do 30 enemas but I'm so sore there the plastic tip hurts on insertion.  Im already going 12-20# a day without....and without eating how am I producing?

Im basically living off of chocolate milk and bites of fig newton or some cookie...sometimes one pancake.

I'm caught in a vicious cycle I cannot currently escape from.....it's scary.  Hope it's not a tumor revealing itself...there is so much pressure in there just constant.

So I will be going in for a flex sigmoid exam to see what he can see.  Im worried all he sees will be $hit...so many things to worry about.  Outside of dr appt I'm still mostly bedridden except for bathroom runs, so painful.

So Sundance just has too much to fight it seems....I'm sad that the days are rolling past and I now find myself a prisoner of my own body.  And I lose ground when I have to stop chemo for surgery.  I could not make my last infusion because it would take too long with waiting on labs, dr visit and infusion itself...the urge to pee and being unable to go is painful and frightening event.

Hopefully we"lol find an answer...this is no life and I've lost much functionally this time through...I keep losing and not winning...part of me just wants to die some days...but I just hang on as best I can.

What happened?

So much I have not told you....did not want to burden the community with my troubles so I've kept quiet about it.....the holidays and all that.

Were I ever to get out of this mess it would be my greatest trick ever!

The new hospital is opening and its supposed to be real nice with flat panels and better food I won't be able to eat:) I should be seeing a lot of the new place in '15. 

Still trying to get back surgery...I continue to give to them but they have not given back to me...but the word is still trying; trial ends next month.

I miss my old life very much...my retirement sucks due to issues and financially difficult as well.

I really miss all of you...miss being what I was here and to my wife.....she handles most everything now and still works full time career.

What they told us from the beginning rings loud and true today - "If you have your health then you are blessed."

I would add that when you can go to the restroom with no problemS / you're truly blessed and fortunate...it's a gift that most of us take for granted.  

I could use a prayer or two if you had one to spare:). Best wishes will work as well...I need some help and feel like I'm slipping or something.

Thanks for checking on me...now you know why I kept my mouth shut:)

Love you guys with what I've got left.  Hope to get out some of this if its in the cards to do so.

Take care...youve got me beat Winter.  I can barely do anything and read where others are living their cancer more fully....part of me longs for that so much....it hurts.

Hope I can rejoin you once again:)

All my best to all - keep fighting!

I still plan to - for awhile at least.

-Craig

I have been thinking of you Craig, and although this was difficult to read, it is nice to see you on the board. 

I have not had the experiences you have, but I too have heard of and almost needed the opium drops. I have heard they are very helpful.  

It makes me very unsettled to say the least to hear you are so uncomfortable.  I hope you are able to get some relief very soon. 

Are you working with pallative care at all to help with QOL? 

Sundanceh said:

Thanks for advice

It feels good to be back in the room again.

I needed to know I have friends left who get me and put up with me:)

We'll start with the procedure on 18th and see what they see.

Wish it would been today...I finally passed a bm knot that had been torturing me for weeks now.  Not sure how long it will last never does long.  With me not really eating itmustbe the choco milk that is keeping me alive.

He might have got the scope inerted better than he will for the procedure on 18th.

Urinary wise i void fully so its a bowel issue causing issues on that side im sure.

I wanted to add that pain pills can inhibit renal motility as well......pain pills are an oxymoron - they give  but can also take away....reason I'm fighting for back surgery in trial...vot me lff Dilaudid instantly on 2nd day....

Had a whole bunch written but it it did not post...went away.

So, it's Impaction OR a new tumor:(. possibly a hemi?

Stay tuned to the Sundance Channel - Story Matters Here...

-Craig

Craig. It is good to see you posting again and most importantly still fighting.