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The Rumor Was True - Sundance Was Full of $hit After All. (Updated below)

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, it's yesterday's news now...but I did clear that major impaction.  I never thought I could it was so bad...half a colon full of rock stool.

It took 5 jugs of GoLytely...many chemical and warm water enemas, a couple of mag citrates...manual de-impaction to finally get it....it was a mess and one of the hardest things I've ever done. 

The first scope attempt failed and I was really worried I would fail miserably.  But the 2nd one revealed all clear...not even a polyp...so I'm good for 3 years now.

My 14 day staycation was eventful...

Originally, I was not a fall risk...but that changed.

What happened was I got up quickly and my hand slipped and wham I hit the ground hard like a ton of bricks.  There was blood all over me.  By rule they switched me to yellow gown and a fall risk...though I found a way around it, LOL

What happened was I had a garden hose up my backside and I had to go but the nurse did not pull out quick enough.

Next day I talked my way off the fall risk chart by charming a few nurses and showing them I was ok.  They said I was the first to do that one:). 

No surprise, right?

And my wife had bought me milks from the cafe...we had the nurses print labels and we put them in appointed fridge as instructed.  Long story short...they were stolen...so mad and disappointed they were...they were mine and it cost us $10 so it was not right at all.

Other highlights...they scheduled us a room and then we waited for three hours upon check/in...nobody checked on us during all that time.

I had some good crews and other shifts turned out less than stellar...new place recently opened so it may take some time.

And I still have not healed completely a month later from that fall...many scabs still.

Wish I could write more but hurting real bad...did the best I could.

I worry about another impaction but worries fill my days and nights...I hope that dissipates.  I just don't feel human anymore...just some kind of freak.

Thanks for listening and nice to see you again.

Oh and the endoscopy showed some irritation otherwise it was clear no cancer or obstructions so that was good.

The consensus is that tha pain pills have created all my problems.

I'm trying so desperately to wean down or get off those meds.

At this rate if I don't turn it around soon you won't have to worry about me.

Let us hope for some good news.

Goodnight and love you!

-Craig 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

(If you can swear, so can I).

DAMN! (again)

If only those pain pills didn't cause the back-up.  You can't live without the pain pills, I'm sure, but living with another impaction, well, thats as hard to swallow as the pills. 

I wish there were an easy answer, but easy doesn't seem to want to be a part of your life. 

I am happy to hear that all was clear. One brownie point for that. But it comes at such a cost, such a very high cost. 

So, I will pray and send all of those good vibes your way, that weaning off your pain meds is a possibility, without causing you too much stress in mind and body. 

We, obviously, are so happy to have you back. Have your back. I think you know you're loved and cared about here on the forum. 

Your rally cry 'I am Sundanceh, Hear me Roar'.

Cyber hugs!

Sue - Trubrit

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

Oh dear Craig, you really had a bad time of it during your hospital stay, I cringed at almost every sentence.  :(   I'm glad that the scoping showed an all clear, at least that should provide you with a little less stress.  It's so nice to see you on the board, but I wish that it wasn't so hard to write with all that pain. :'(  I wish you better pain free days ahead my friend. You take care now, and no more falling, ok?  ;)

Gentle hugs (())

Cyn

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Hi Craig, Wow, that's sure a lot.  It's amazing the things our bodies will do, I had no idea this could even exist.  It's really good to hear that you were able to type even for a few minutes.  Really sorry you are going through such a hard time and you are totally loved by this group.  Helen

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

hi Craig,

good to hear/read you roar. What else is there to do you would say.

so to read life is exciting, and you keep them all on their toes.

all kidding aside, I'm so glad to see you post. You're always in my prayers and thoughts.

life is running away with me here, daughter very ill, Trigiminal neuralgia is no pickNick either.

very painfull and no relieve inside ever. 

Hgs, Marjan

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

to see a nice long post from you. That's quite an ordeal you just went through. Get well and best wishes!

Easyflip/Richard

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

that even in the heat of battle, you're a survivor. Good news as far as being clear. I hate thievery. It's just not right. I hope the hospital settles into the good pace they need. I'm praying the pain becomes lighter. Sending prayers

 

 

Yolanda

LindaK.
Posts: 490
Joined: Apr 2013

Thank goodness you can still share these stories with us.  Would pain relief be easier on your colon through a patch or suppository? 

I'm sure the nurses would much rather give you freedom to get to the toilet rather than cleaning up time after time.  Once last year when my husband was in the hospital and had c-diff for a 2nd time, they labeled him the "mad sh$tter"  I'm glad that happened during the night while I was not there!

I'm glad you finally got some relief, but it doesn't sound pleasant.  How could you drink so much of that Golytely crap?  Ugh!  There has to be a better way

Thinking of you,  Linda

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Im on several patches right now.

and I could not drink all of that so they inserted an NG tube twice - and second time I was awake...it hurt bad.

thank you

LindaK.
Posts: 490
Joined: Apr 2013

Nasty NG tube, my poor husband was awake for every one. 

 

danker's picture
danker
Posts: 1183
Joined: Apr 2012

I too have had them inserted while awake.  No fun.  But we do survive it all.  Hang in there my friend.

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

You have gone through a lot and best wishes that things get better ASAP for you. 

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

Holy Crap - literally.  You have been through so much but glad that you have been relieved and hopefully for awhile.  I'm not sure if you asked but maybe you could take Miralax everyday.  It sure helps a lot of people stay regular.  The medicine can really screw up your digestive system so I'm glad you are trying to get off most, but then you will feel worse pain wise.  Thanks for keeping us updated as I'm sure it took a lot of strength to write what you did. 

Kim

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

were doing miralax and about to start LINZESS.

well see and thanks

TheLadySkye's picture
TheLadySkye
Posts: 195
Joined: Oct 2013

I'm so sorry about your ordeals.  You remain in my thoughts on prayers.

During chemo, I would get blocked up REALLY bad.  I found that miralax in hot cocoa a couple days before and during helped with the worst of it.  Perhaps that will help until they can reduce the pain meds a bit? 

On the bright sides, I'm glad all of your scans came back clear!

Fight for my love
Posts: 1530
Joined: Jun 2009

OMG, it is too much to go through. My husband hates NG tube, he experienced once when he had blockage. It's good to hear that no cancer found. I hope your pain and many other issues will be under control or resolved soon. You are in my prayers.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

y- no new cancer found.....just the old cancer...

-c

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Craig  So sorry to hear about your latest adventure.  It's good that there is nothing new.  Wish they could figure out how to get rid of the old stuff and get you off those pain pills.  Take care of yourself.  I'm rooting and praying for you.  Traci

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

Wow!  You've really been through a lot.  At least you're not full of it any more!  I hope that the Linzess works. You are so strong and such an inspiration.  I pray that your pain will end soon.

Joy

John212's picture
John212
Posts: 116
Joined: Jan 2015

that lots and lots of sex is the best cure for these kinds of things. At least that's what I tell my wife.

 

She rarely listens to me, though. Maybe you'll have better luck.  :)

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

but I just can't tell you how sorry I am that you have had to suffer so much. It's just completely unfair.

You mention that they didn't find any new cancer, which is awesome...do they have a plan for treatment for the old stuff (hope you don't mind me being nosy, just hoping that they have some thoughts for moving forward once they get you through this rough patch)?

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

i dropped out of chemo iin November because of the issues I was having...I literally could not get it done because it took so long and I could not go to restroom

the rest you know .....

its all been too much of course...

Probsbly will be back in hospital soon to get tpn...still can't eat much physically....will have to do ct soon for pump implant and then that surgery hopefully upcoming. Need to this as I'm still bedridden 24/7 except for appts....the drive is so hard on me I can barely make them anymore it hurts so much.

dont know how this will play out but hope cancer is growing very slowly.

remarkably last time cea was checked it was down 20 points...more than when I was doing it...strange.

just don't know Annie...Very scary and difficult times...so much to wade through it seems.

i saw the pain pump at consult and its big as a hockey puck with a catheter and wire that goes into spine...won't be an easy surgery but I'll try.

cancer is beating on me on all fronts...hope I still have what it takes...gonna call monday (wife) to see about admittance for tpn...may call hospicd to see if they can help...gotta be off chemo...and I sm right now... can stop if chemo resumes.

i feel wrong right now...my life ebbing out like sands through the hourglass....

hugs

craig

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

May be heading to hospital tomorrow if I can get in.

i need ton as I'm scary skinny now and can't eat...It scares me to look at myself without clothes...just bony and emaciated looking.   May have to get cleaned out while I'm there.

medical community just moves too slow when you're deathly sick....shaking so bad I can barely type...have to retype over and over.

im slipping and they better hurry.

anywsy tpn needed for sure.

im worried...goodnight.  Hope to talk to you soon.

craig

janderson1964
Posts: 2215
Joined: Oct 2011

This is so absolutely heartbreaking to read all of your post Craig. You know I love you and have always looked up to you and will continue to do so.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

:'(

Love ya buddy....gentle hugs.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I'm just in tears reading this.  Please keep us in the loop (or ask Kim to update us if she can).  You are an important part of our family, we need our lion to get back on his paws!

Big hugs coming your way~AA

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

could not get into hospital...none of my gi docs were even there today.

unbelievable can you believe it?  I swear nobody there cares...my onc signed off for hospice today and here they are.

as long as I'm not in chemo I can do hospice - that's the rule.

nurse is nice and seems to want to help me...I hope they can.

i am trying to hang on...it just seems things changed so suddenly...pain intensified and stopped eating etc.

my wife called pain pump surgeon office....were not even close for surgery...they want a consult - why?

and then a ct for the surgery to know where to go - I get that one but still....

thr long trips to and fro are so hard on me I've told them over and over.....and still we drag it out...

this is how folks die...dragging it out like I've got all the time in the world..my cancer is running unchecked since November while we battle all of this other.

times like this make me question why I still fight.

well we'll see what hospice comrs up with.

over and out....will update when I can.

Hope I'm not acting like s big old baby with my whining...but I have my wife and my remaining friends on the board here...that's it and I need to talk to you.

Love, Craig

jen2012
Posts: 1607
Joined: Aug 2012

Craig, I haven't posted because I don't know what to say. My heart is breaking for you and Kim...and for all of us.   You are constantly in my thoughts and prayers.  You are never a big baby.  this should be your safe place where you can say anything.   Keep at them until they get your pain under control.   Take care of you.  Love and hugs, Jen

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

Hope I'm not acting like s big old baby with my whining

Whining is when you carry on about something that is really quite insignificant in the big scheme of things. Complaining over being treated like a pay check (Yeah, I want a consult first and then we'll see), like you life doesn't matter at all, well, thats not whining, that is stating the facts about your care, the sad facts. 

I know we all hate the word Hospice, its like 'The End'. But it doesn't have to be, not as long as there is some fight left in you, and I know its spread thin, but I can see it, even in your posts. 

My long-time best friend over in Wales is a Hospice nurse. She said that sure, people come there when the Doc's can't move forward, but she also sees people there long term as well as those that pass. 

Hospice will take care of you (I sincerely hope), while you continue to fight. Get that pain pump if you can. Do what you can while  you have that fight, even if its just a spark, in you. 

We've got your back, and wish we could just jump through the computer and give you more. 

Sue - Trubrit

Fight for my love
Posts: 1530
Joined: Jun 2009

what??? I can't believe it. I really question why they put you on hospic instead of pain management. Please don't be disencouraged by hospic care, I heard that people can be out of this care when things are under control. Overall I am just as upset as you are with the whole thing, speechless. Take care.

LindaK.
Posts: 490
Joined: Apr 2013

I can't print what I really want to say!  Craig, someone must not be telling you something.  This sounds inhumane to dump on a cancer patient who so desperately wants to continue the fight.  I found home hospice in our city not so great.  They would say opposing things depending on who you spoke to.  The night and weekend "emergency" number was often unmanned and I had to call 2 or 3 times to even get the service to get the 1 on-call nurse.  The inpatient facility I took my husband to was fantastic.  Maybe something like that will be better for pain management for you to get it under control.  Hospice does not always mean the end, it means caring for someone with a life threatening illness.  If you could get in patient and get a pain pump, you can go home with it.  We pushed for it and we made them ask the palliative care doctor.  They said it can be done.  My husband then decided he wanted to keep the pain under control with pills.  I didn't think that was such a great idea, but I couldn't argue with him.  The pain pump they used at the facility was called "sub Q" so it wasn't through his port or an IV.  It had to be moved every 3 or 5 days but he never had another pain episode and for that, I am glad.

Please feel the love and concern from all of us.  We are in your corner.

Linda

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

for the pain control then you can think more clearly. Not telling you what to do here but if you want to keep fighting you should. Next thing, when you're pain free put on some weight. Whatever you decide you have my support. Good luck.

Easyflip/Richard

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

they are here to help manage pain and symptoms....I don't see it as the end yet...I see them offering help when nobody else would....one call and they show right up today and I don't have to travel - beautiful.

they are staying overnight for 24 hours to watch me and help with meds etc...

and.........a pain pump is being delivered TODAY.  It will run through my port.  Did my pain mgmt team do that for me?  No.

Linda I agree think pump will be better than pills...so hard to maintain and stay up with it.  It has a carrying case like the 5fu pump but it's always something.  Pain is so bad after s year and half I can bsrely see sometimes.

its been so long with pain it's hard to know anything else.....

so if this can help me for now I'm going to try it.

You know I talk a lot but I'm not ready to quit yet....not yet......10.5 years and still actively fighting....how many can say that?

i want to thank you for responding and reaching out to me....I've really missed our interactions - a lot .

in my continuing effort to share what I learned.....

TPN is used for bad bowel conditions and not used for sustenance to live on so interesting.  Starting the LINZESS and they want pain under control do I can eat something.....and they will work with bowel regimen to help me there so I don't Impact again.

not usrd to stranger staying over but it's good precaution.

thanks for listening....this thread makes me feel close to you and I need that.  

Keep your fingers crossed and I'll do my best to keep you posted.

What a comeback this would make:)

-Craig

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

well that deserves a happy dance man .

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I am sorry to hear that everything must be a struggle for you.

I pray that Hospice folks will be able to help you turn this around so you gain strenght to continue the fight.

You are in the thoughts and hearts of many.

Hugs and love,

Marie who loves kitties

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Hospice is not the end as you said, if they are offering pain meds and you can't get it from any other source so be it. Bro you know we still watch over your Kim on Facebook. How can anyone forget you, you are still my bro and no one I know has been fighting as long as you have. You are an inspiration.

 

Love you. Now take those drugs, get stronger and kick butt.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Craig - Hopsice may just be the best thing for you right now.  You've got a pain pump, that's awesome.  I hope and pray it helps.  Get this under control so you can deal with the rest.  We're in your corner and looking for the day when you're back and dispensing your pearls of wisdom!  You're always in my thoughts.  Traci

LindaK.
Posts: 490
Joined: Apr 2013

So glad to hear your hospice group went right to your home and want to keep an eye on you for 24 hours.  That sounds like a wonderful start to getting your pain under control.  The hospice nurses say these pumps really do wonders so I'm hoping you'll be feeling better quickly and can get som nourishment and food moving through those tough bowels of yours!

I certainly miss your stories and feel your suffering.  I was re-reading some things I got from hospice last night and it made me feel better instead of angry.  Ask Kim to read all the stuff if she can.  It was difficult for me when my husband first started, but now I find it comforting.

I would like to hear that lion roar all the way up in NY!

Linda

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

And it is obvious you are strong as anyone I have seen with what you have gone through and how you keep on going.  And it is evenm ore obvious how well you are thought of here.

All of my thoughts are with you in this.  Big old baby? Never.  So far from it.

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

   I'm not much use for advice at the moment mate. I'm having problems keeping it togeather myself. My gp up and changed towns without a good bye or kiss my a. Now I am just rehashing things with the new guy. I have asked and asked for a viable alternative to Targin but there appears to be none. Every couple of weeks I have to do battle with opiate induced constipation again. I could just about afford to give up going to the toilet . I am not eating much and nothing much appeals to me. After 17 years of fighting I am financially , mentally and emotoinally bankrupt. Cancer and the long term effects thereof is an expensive on finances and the body and soul. I hope you can stop the blockages, I rely on 4 biscodyl ,4 coloxyl and two to three sachets of movicol a day. Sometimes it works , sometimes not. My neprologist put me on prednisone again for a while to help deal with some auto-immune hepatitis. Life really is a tightrope for us. All the best Craig,hugs Mate. Ron.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

You are one of the toughest person by any standard. You are such an inspiration. I only wish that your strength wouldn't have to be challenged this way. But it is what it is. We all love you and eagerly wait for any word from you. 

Laz

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

so far I cant tell a huge difference other than I have to lug around a very heavy and cumbersome pump and I don't have to monitor pills...I've got the pca but I can't pump enough to get up on it.

still in bed and saving strength for the can...little hungry but no difference there.

sirt of glad I'm trying this prior to surgery implant....if it does not get better don't know if it would really be a benefit for what I'd have to go through.

hispice will be tweaking the pain so right now it's experimentation....will keep trying and see if it will get better....this pain is the worst and just in a really bad spot it seems.....came from the fires of hell itself.

we shall see.

all in all I'm about in the same spot...I had hoped for more...

thanks for your support.

-Craig

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I had a long talk at the sky last night, well, not the sky really, I was calling on Jennie to see if she had any pull to help you through this latest trial and tribulation you are going through, I'm pretty sure if she can, help is on it's way.

Reading about how you're doing just fills me with tears at your pain.  As for your body I've learned to quit looking at mine,  we both look like near concentration camp emancipated bodies I'm pretty sure from the description of yourself, I've decided just to do the best I can and quit agonizing Everytime the scale shows another set back, just do the best you can getting nutrition whether through TPN, or drinking tons of Boost or Ensure and try and get those calories.

I love you as a friend, as a brother and as a fellow warrior in a struggle to survive and to survive and be able to enjoy life once again, I'm keeping that faith in you, that is what you will do, enjoy life again.

Im glad you called hospice to get what you need right now, and that your CEA is lower (that is amazing) so get better, then get off hospice and feel the rays of sunshine warming your face as Spring slowly arrives your way, it just takes time.

Hugs,

Winter Marie

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

just don't feel like I'm going to make it right no.  Can't eat or drink much and I'll probsbly end up starving to deat...I wonder if I'll make the year...

im trying but so far it's not enough....the pain is winning the war...

love/Craig 

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

Craig,

   I wish all the cyber hugs and prayers would make things better. You've been so strong. I have you in my thoughts and prayers.  Youre messages are always welcomed. I just want to make things better. Hopefully hospice will find the balance to ease your pain. 

Yolanda

wolfen's picture
wolfen
Posts: 1320
Joined: Apr 2009

No way are you whining and "What the hey"? Do I need to come down there with my boots kick some of the bureaucrats back into line and refresh their memories about "do no harm"? I am so heartbroken for you as you endure all this while they tough it out on the golf course.

JBG had a pain pump as well as Fentanyl patches. I believe the coctail included Dilaudid. It also was attached to her port, but was not heavy and cumbersome. Please be careful with the stuff, especially if you are on other meds such as Ativan. Too much of a good thing can make you really loopy.

My heart is with you and Kim as you struggle through this never ending battle to acheve comfort. I'm glad that you have the Hospice team now to help you.

Luv,

"Mama"

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Craig, hope at least few more things go your way today.  Thanks for letting us "see" some of the action.  Makes it more pointed that we start early, work to keep control of the equipment, personnel and meds at home, and stiff the hospital on stacks of Benjis, when possible.  One thing I can promise my wife, we'll do chemo when and how we please.

Luv2lunch
Posts: 272
Joined: Aug 2010

Hey there brother,

Just wanted you to know we are still here thinking and praying for you and Kim. I'm so sorry for what you are going through. You have been through the ringer. I don't have any advice except to keep roaring. You have been there for us from day one. We are here for you also. Please hang in there. We love you.

Linda and Miss Ellie (the cheerleaders :)

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

Sorry about the surgery and all that you are going through.  Hoping that they can deal with the pain issue better for you and I'm sure, like you said, it has some modifications that you have to go through.  You are always in my thoughts.

Kim

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

morphibe (stwiched)

fentanyl patches 200 mcg

lidicaone 2 patches

Liness tablet daily

dexamethasone for inflammation

discontinued:  Toratorl and dilaudid

 

nurses all agree I'm on high doses from the regular folks.  Most would be down they said but my tolerance runs high.

what a long day and night it's been...regular nurse showing today and apparently now a social worker.

no major improvements to say over pills.  Surgeon visit consult next week if I can get there

iven labeled a "crisis care"

see you/Crsig 

danker's picture
danker
Posts: 1183
Joined: Apr 2012

We would all take some of your pain to free you of it , if we only could! I pray your life becomes easier. Good luck to you!!!

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