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"instructions" for my APR surgery...tylenol...walking after 3 hours!!!

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

Well, just when I thought I had finally made peace with having the APR... And it's a fantastic hospital, but I can't believe a major surgery is going to be policed over pain relief...they "minimize" narcotics, but what am I supposed to do instead---take two tylenol and scream into a pillow.

well...I got some instructions for preparing for surgery, and what to expect afterward.  After reading that, I don't think I can do it!  I am ok with pain and suffering at home in private.  You know, you can pour a glass of wine and cry the pain out.

but, the NP went over what to expect.  And, I was hopeful at first that some of the stuff was geared toward lesser surgeries...but...nooooooo.....

 

so, what do you think?

Here is a little of what I am worried about

 

prior to surgery, i will arrivw in the waiting area, and be given pain medicine (tylenol), along with gabapentin

i am supposed to be up and walking three hours after surgery (not unless I am a ghost!)

there will be no PCA, and they minimize narcotics

one day after surgery, I will be given non-narcotic pain medicine.

 

i'm not pushing for narxotics, but isn't this going to hurt like heck?  How am I going to handle the pain of APR, due to rectal tumor by the way, with tylenol...

 

thanks...

 

 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

This is a huge surgery. You need strong painkiller for at least a couple days. Often I have to give narcotics for a tooth extraction. 

You can't and shouldn't get up after 3 hours. Maybe a tiny walk next day. 

You have to be assured of proper pain management. Pain is not just an uncomfortable sensation. It causes even more stress on an already stressed out body after surgery slowing down the recovery.

Also I and many people took 400mg Cimetidine twice a day 2 weeks prior and 2 weeks after the surgery. It may reduce the chance of the cancer spreading during surgery.

Did you choose to have the abdominal muscle flap option too?

Be your own advocate and I wish you the best of luck with everything.

Laz

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

hi Laz,

 

i posted a portion of the limited "instructions" which are the result of some greedy folks and (ERAS protocols) that lump all colon surgeries into "fast-track" discharges.  Mine would be 2-3 days, and I have no aftercare plan, no WOC nurse, no stoma nurse, no anything, and I live alone.  I am at a major hospital, and I love them. But clearly greed has got a grasp on them.

 

oh, and I was told "abdominal flap" was if they removed your vagina...lol...so I guess it is a "guy thing."

i am going to save all my pennies and try to rent a chair in the hall.  These guys are major greedy!

 

Oh,..I injured my hand today, and it looked possibly broken, so I went to urgent care.  Got an xray, and just contusion, but,,,,get this,,,they offered me pain mds...i askd just for something mild....so I have 20 ultram for my bruised hand, and zero for an APR.  what planet are these people on!

peace,

sharron

Jen1988
Posts: 36
Joined: Oct 2015

Hubby just had LAR surgery exactly a month ago Jan 11. First day after surgery they still had him pain medication thru IV. 2nd day took IV out, and gave him tramadol and tylenol. They forced him to walk from the bed to the chair on 2nd day, not 3 hrs after surgery! 3 hrs after surgery he still didnt know what was goin on...

And yes i took Laz' advuse to give him cimetidine 2 weeks before and after surgery. I really hope cimetidine helped from cancer's spread during surgery as He had stage 3. Good luck on your surgery... I will pray for your successful surgery and speed recovery

db8ne1's picture
db8ne1
Posts: 142
Joined: Feb 2013

Are you sure you are understanding them correctly?

I cannot believe that they want to use Tylenol to treat pain post surgery.  I had a LAR and was cut from belly button to pelvis.  I had Dilaudid - which apparantly didn't work for me because when I remember coming around after the surgery, my husband told me that the meds weren't working for me and they added Toradol to the mix.  I was on that for a good couple of days and didn't get up to walk until day 2 (which would have been 12-14 hours post surgery).

I didn't stay on pain meds very long - as I don't really like them. But they are crucial the first few days and I firmly believe you heal better with them.  Mostly because they allow you to get up and get moving - which in turn helps you heal faster.

Again - I'd question the surgeon to make sure.

Prayers for a successful surgery and good pain management!

J

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

I am cut and paste a portion of the ridiculous instructions for APR surgery.  Everyone I have spoken to so far has been aghast at the lack of support and care they are suggesting for after surgery.

make way for more "day surgeries" and short stay surgeries.  I am horrified that my stay is to be 2-3 days and I have not even seen a WOC nurse.  

If you wonder where BS care like this comes from, check out "ERAS protocols" which lump all colon surgeries into a "fast-track" and early discharge.  They boast 30% earlier discharge!  Great...not!

 

here is a portion of my hospital's instructions (cheap $&@-). 

 

of Surgery (After Surgery):

1. When you awake from surgery you will go to the recovery room. There, where you will receive any necessary medications. The goal would be to keep your comfortable while minimizing need for narcotics, which can slow your recovery.
2. We would like you to start drinking liquids immediately after surgery when you wake up.
3. Within 3 hours of surgery you should get out of bed with assistance and take a short walk. 

 

Day After Surgery:

You will be:

• Offered soft solid food.​
• Given a mixture of non-narcotic pain medication to keep you comfortable. 
• Asked to walk at least t
jen2012
Posts: 1607
Joined: Aug 2012

Yes that seems unreasonable.  Similar thing happened to my mom after having her foot amputated...and they ordered Tylenol.  She was crying and screaming in pain and I wanted to kill someone,  

please work out the details ahead of time and make your demands.  

beaumontdave's picture
beaumontdave
Posts: 1061
Joined: Aug 2013

Yeah, their "non-narcotic" emphasis and "in and out" approach to major surgery stinks. It should be about what you need, and your comfort, find some place that cares without having such an agenda...................................................Dave

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

You need to get a second opinion at a different hospital.  I had a LAR in 2003.  I had an epidural for pain control for the first few days and then was put on diaudid pills.  Tylenol would not have worked.  I had a temp ileostomy that was reversed 8 weeks later.  I then spent the next 18 mos in the bathroom or looking for one.  I then made the toughest decision of my life and had a colostomy done.  I havent looked back. My tumor was 2 inchws from the anal verge and I have alot fo damage from radiation.

Your  doctor is the one ordering the pain meds.  If you dont have good pain control you wont be able to walk.  You need to be seen and followed  by and ostomy nurse also.  There is alot of education involved.  And there is no way you can go home alone.  If you dont have anyone to stay with you, you will need to go to rehab.  

Your doc is doing a poor job with education about this major surgery.  I would def find a new doc.

Maureen

 

 

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I had a similar problem at Sloan. They are on crack. That stupid push when you are in pain machine doesn't work. You can't push it while you are sleeping and wake up in pain. Be very clear, your body, your pain. I switchedto pill form of morphine and that worked great. These doctors are SO arrogant because it's not their body. After my surgery I continued to be in pain and they thought I was imagining g the pain. I am not a winer typ . I had a prolapsed uterus and I was sitting on it for two whole years. Screw them. Make sure you get what you need and if your doctor says no, ask for a different docto . 

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Its going to hurt yes. Screw them!!!!! You demand relief. What jerks.

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

 

I don't like the way the NP (Fresh out of np school 2014) took it upon herself to tell me that the majority of APR patients do not need narcotics after the procedure.  How would she really know!  And, when you are not given a choice, most people will not complain but instead just suck it up and pray to get the heck out.

the only stoma education I have is from the Coloplast materials that were so kindly, and for free, sent me directly from coloplast at my initiative.

i think sometimes surgeons become so detached, as they have to when they are cutting people open, that they forget that there is a living being there: a being with physical and emotional experiences through surgery.  

The hospital is fantastic, and the cancer center is one of the best.  The surgery stuff, I am so ashamed of the way that clearly cost is driving the care.  Narcotics could "slow down" your recovery.  Translatation: narcotics could slow down the gi tract, make you comfortable, and slow down the speed of your discharge.

 

i am going to advise my team of all the experiences written here, but will omit names etc to make it annonymous.  If anyone objects to that, please let me know and I will leave out your insight.  I want the treatment team to hear the voices of real patients, and real recovery.  

so, keep it coming.  It will help me as I rattle off so and so had pca, x number of days, severe pain, etc....

what is the average stay?

has anyone had LAR or APR without narcotics?

thanks...together we can make things better.  I love the hospitsl.

 

but, I am very grateful to everyone on this board, as the minute someone posts, many folks come to help.  

 

May the light of the Lord shine through you and I, so we can stand bravely in the face of truth.  Kindly and bravely, but without accepting that we are worth any less quality care than any other patients.  

 

Thanks, peace, love

sharron

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I don't think anyone can do this major surgery without strong pain medication. 

Again, pain is not only a bad sensation. It puts the body in a very stressed state, sometimes shock.

These meds may slow down your intestines, but will give your body a break from pain and speed up your overall recovery.

Laz

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

sorry we are on the same journey.  But, I am glad to hear that you seem to be doing pretty well with the hand you were dealt.  You are an inspiration to me, and you have reached out to me since my very first post.  You have an upbeat attitude, and a very caring and generous heart.

 

thank you so much for sharing the length of your stay, and some very good arguments for adequate pain medication.  I think they want to do "nerve blocks" on me, which I am not familiar with, except I think they are like epidurals which are painful as heck.  Any experience with that?

 

i am glad to see that so many of us are sticking together and standing up for good care for everyone.  I have never been the "hey, i got mine" type with disregard for others.  AND NEITHER IS ANYONE HERE!!!!

 

it would not surprise me in the least if better treatments, and possibly some curative modalities came from this wonderful group of people.

 

please pass the "eye of newt" and the aspirin and vitamin D.

 

rah rah go team!

 

thanks Laz,

 

May the Lord bestow upon you and yours much peace and many blessings

 

sharron

 

 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I received the usual general anesthesia.

Yes, this forum is amazing. It literally saved my life. Doctors miscalculated my chemo meds twice and the people here who pointed it out that something was wrong. 

Also join the UOAA FORUM for the colostomy. You will get the same support there.

Ask and you shall receive.

Laz

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I was really hoping that you were joking when I was reading what they were wanting you to do.  I guess you're being serious.  

I had an LAR back in 2009.  I was in the hospital for 5 days.  I had an epidural that pumped pain meds  at a continuous rate.  They pulled that three days post-op and I took percocet after that.  It's not realisitic to make you take tylenol or any other form of non-narcotic after surgery -- unless it's torodol.  Torodol is an anti-inflammatory, and works wonders after surgeries... and they can surely give narcotics for breakthrough pain.  

Your NP is dilusional if she thinks that "most LAR patients don't use narctoics".  Spreading that nonsense is what makes trusting medical personnel so hard -- and I am one!   I had my second surgery just this past December for a recurrence and was horribly undermedicated to the point where I didn't want to move and I didn't want to breathe for fear of pain.  It finally got to the point of wanting to go home because I had a bottle of percocet that I could use.  They gave me tramadol to go home on which was about the same as taking a tic-tac now and then.  The pain was outrageously bad.  

Just an FYI... I got a colostomy on the second surgery.  The hospital I was at had excellent stoma nurses and I learned a lot.  I am a nurse, but I haven't taken care of a stoma patient for over 25 years.  It was an education!  Still, no stoma nurses around here, but I've learned so much from research and there are a ton of youtube videos that taught me a lot.  I've talked to many at coloplast, convotec, hollister, etc... I've experiemented with a lot of their free samples.  I know which I like, which I don't.  Most of all, I'm loving this colostomy because for the last 6 years, I've known where every bathroom was in a 50 mile radius; I don't have to worry about that anymore.  It's freeing and wonderful.  

Good luck with everything!  

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

thanks Holly,

thanks so much for your input.  Whatever happened to do no harm?  I could see if they were moving people along in order to help more people, but that is not the case.  It is "ERAS protocol" for all colon surgeries that has a goal and have achieved a 30% reduction in hospital stays.  I researched this, and in no way is it focused on the patient's comfort.  The basis for non-narcotics is that it slows down the gi-tract to use narcotics.  

You are very wise, and I am laughing (almost) that you wanted to get the heck out of the hospital so that you could medicate at home.  I currently have an Oxycontin prescription, prescribed 20mg bid, that I would like to be taking to offset the pain I still have from the chemoradiation (burning, gnawing, buttock pain) but, I have stopped them with the thought of getting the heck out of the hospital and healing at home.  

I also nearly broke my left hand a couple days ago (door jammed) and I was offered pain meds...i didn't want to look bad asking for something like percocet, so I said, ok, how about something mild.  So, I now have 20, 50mg Ultram to add to my homecare plan.

I am hoping the surgery goes well, and we know the clock then starts ticking, and I am strong so, I will get up and walk....and if I can...I will keep right on walking....right out the front door.

the alternative is to sit there and be asked how my pain is....and to be given next to nothing.

call me a cab....

 

20th century health care has now gone back to the wild wild west....

 

beaumontdave's picture
beaumontdave
Posts: 1061
Joined: Aug 2013

Sharron, not taking the Oxy before surgery seems smart to me for a couple of reasons, one of which would be to get the maximum effect from whatever pain meds they are going to give you, post surgery. Tramadol works for the pains I get occassionally and being a non-opoid means you won't be raising the bar for the level of narcotics needed later. If it's me, I might be figuring how to get my Oxy's in if they hold to their ridiculous med plan. Best of luck................................Dave

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

thanks Dave,

you read my mind.  But, if they are not going to have me meet with anyone prior to discuss aftercare, and at least the stoma nurse, I cannot do this surgery.  I have the wildest nightmares since receiving this crazy paperwork from the NP.

a high carb diet, and gatorade drinks at certain times of day for a couple days before surgery?  Am I also going to be given a stick to bite down on.  

 

This is what healthcare is coming too.  I have a very small tumor, and I want to seriously explore the costs of just leaving it there.  

SO2016
Posts: 1
Joined: Feb 2016

My husband had an APR in December.  He was in the hospital on heavy pain medicine for 8 days was released from the hospital and went back in 6 days later with an infection caused by an abcess.  He spent 14 additional days int he hospital fighting the infection.  He was sent home with a prescription for 12 hour Morphine and immediate release Morphine that he could take every 4 hours.  

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

I hope that your husband is recovering nicely. I thank you for replying to my post. I actually have no symptoms of the cancer, but I am afraid to leave it there.

Everything I am reading here leads me to question why my hospital seems to have no concern whatsoever for my comfort or safety.

Maybe they just don't care. I'm waiting to see if the day of surgery arrives and I have no stoma care, no marks, no anything.

I am very spiritual, and am so lost in this ....

Thanks,
Sharron

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