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Getting prepared for sugery possibly on Jan 7, 2020

SnapDragon2
Posts: 115
Joined: Nov 2019

Getting ready for surgery and want to be prepared as possible.  I have questions for my dr so I hopefully won't have any "wake-up suprises" after surgery (APR with permanent colostomy most likely) but know I haven't thought of everything.  Any advice on what to ask would be so much appreciated.  Also,  what are some things that are a must to have for the hospital stay to make things easier and more comfortable while I am there?   I already told my husband he has to rent a cadilac to bring me home in,  I will be sore I know and the roads are not the best :)

Trubrit's picture
Trubrit
Posts: 5009
Joined: Jan 2013

That will be quite the gift, getting a new bag. 

I know there will be folks helping you with the whole bag side of things, but I can jsut share a few general surgery ideas that worked for me. 

I made sure I had my iTunes because the music definitely helped soothe me to sleep, and keep me entertained during the day. 

A nice roomy nightgown or robe. Something soft. Maybe take two or three, because I know I bled through my bandages at one point.

 It seemed like those first few days, everyone who walked through the door wanted me to raise my nightie and check my incision. Plus, when I walked around - and that is more advice - it was nice not to be showing my rear end with those awful hospital gowns, which are also very thin and uncomfortable. 

Walk, walk, walk as much as you possibly can. It hurts to get out of bed those first few days, but walking is so beneficial, that its worth the pain.  You will heal quicker, you will have a bowel movement quicker, and it makes you feel good; especially when you pop in to visit other patients and realize there are others suffering so much worse than you are. 

Drink plenty of water. Hydration is a key to healing as well. 

Keep a notebook handy, to jot down all your questions.  The nurses are usually angels, but sometimes you get one that isn't so pleasant. Don't take any negativity and report them.  

A soft pillow, especially for the drive home. Mostly to put across your belly, becasue if you cough or laugh, or go over some speed bumps, you want something there to soften the blow. 

Try and keep off the pain pills as soon as you can. They can really constipate you. 

Well, there's a start. HA! 

Have a great Christmas season.

Tru

SnapDragon2
Posts: 115
Joined: Nov 2019

thank you, Tru!  I am upset about the bag but a little more personal history I will share helps keep me grounded.  When I heard the same surgery diagnosis from the 2nd opinion surgeon I went to, my sisters kept going through my head as he was talking.  Both of my sisters died of Cystic Fibrosis and I could just hear them saying "You are lucky sis that you can give up your butt and live."  So really I will be fine with the bag.  

Thank you for the advice.  I will definitely get a robe, some nightgowns and pillow.  I didn't even think about music, so that is at top of list as I always have music playing (the day isn't complete without it).

Thank you for the well wishes.  You and your family have a great Christmas also.

SandiaBuddy's picture
SandiaBuddy
Posts: 987
Joined: Apr 2017

Ditto to everything Tru said.  But be sure to bring slippers along with your bathrobe.  Walk early and walk often.

Try to schedule a morning surgery, as the waiting (and the prep) will leave you drained.

Train for the surgery like an athletic competition.  Be in the best shape you can be.  Also, there is no harm in putting on a few pounds before you head to the hospital.

Maybe more for men, but also for women, shave your lower arms, because they are going to be putting tape on and pulling it off like crazy--at least you can avoid them pulling the hairs out.

Work assertively to get the doctor to clear you for water at first and food as soon as possible.

Be awake or have a family member for the early morning rounds, that is when you can get approvals for the things you desire.

I agree with avoiding pain meds.  At first they give them to you automatically.  Ask what medication you are being offered and if you can decline it.  Many people live their day from pain med to pain med and the nurses get used to it.  They were surprised and pleased when I did not want the meds.

Get out of the hospital as soon as possible.  It is hard to sleep there, there are infectious diseases there, and home is where you heal.  Start on the doctor (the gatekeeper for everything you want [if it is not a written medical order, it does not happen in the hospital]) immediately about what you have to do to get discharged, and when it can happen.

I love the idea of a rented Cadillac.  I went home in a rented Kia SUV, and each speed bump in the hospital parking lot was like a knife in the gut.

Finally, live, laugh and appreciate each day, both before and after the surgery, to the greatest degree you can.

SoCal42
Posts: 78
Joined: Jul 2017

These days they will usually try to get you off the narcotic pain meds ASAP, and for good reasons. I had some prolonged pain issues with my APR perineal incision, enough that it was interfering with my sleep (and I generally have a very high tolerance for pain). I think it was just an irritated nerve, but it was annoying. I used a couple of tricks to deal with it. My surgeon approved using ibuprofen alternating with Tylenol. That way you can get more even pain control throughout the day. My oncologist then suggested applyng topical lidocaine patches along either side of the incision at bedtime, which also seemed to help a lot. I honestly hope you don't actually need any of these tips though!

SnapDragon2
Posts: 115
Joined: Nov 2019

Thank you so much, SoCal42!  I wrote down your other advice and now the tylenol/ibuprofen trick.  I am going to get the patches for just in case.  Yall are amazing!!!!  I am so happy I found this site.  It takes some of the stress, fear and anxiety away.

Trubrit's picture
Trubrit
Posts: 5009
Joined: Jan 2013

We still need to be careful with OTC's that have proven side effects on the liver, espeically if we are dealing with mets to that area. 

Tru

SnapDragon2
Posts: 115
Joined: Nov 2019

Thank you so much for your advice and knowlege, SandiaBuddy!  I wrote it down in my notebook.  As for gaining weight, well it is hard to do and I am worried about it for sure.  I stay active and walk the dogs about a mile a day (weather permitting), yoga, squats and lunges, so hopefully that will be enough, whew!

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

I'm right behind you by a couple months and will be having my surgery in the Spring.  I look forward to your update on how it goes.  January will be a good month for healing and lying low awaiting Spring where you can emerge with a new outlook and hopefully all healed up and ready for this new chapter to unfold.

Hoping others add to the list of items to bring to surgery and what to expect.  In the meantime, enjoy Christmas with family.  You're right, your sisters would be so happy that you get a chance so many are denied to live, love and enjoy life.

Happy Holidays,

Joy

SnapDragon2
Posts: 115
Joined: Nov 2019

I thought the same thing, the weather will be perfect for healing!  And yes, Christmas will be extra sweet and memorable this year for sure.  Thank you and happy holidays to you and your family.

SoCal42
Posts: 78
Joined: Jul 2017

I had APR surgery with a permanent colostomy almost three years ago for a low rectal tumor.

One of the most useful things I did before surgery was to go on You Tube to look for videos on colostomy care. When I saw how many videos were made by people in their 20's (often ileostomies for Crohn's Disease), I thought, "If they can deal with this, then I can too!" The hospital nurses may or may not be very familiar with colostomy care. If you can see a WOC nurse after surgery, that can be priceless, especially for custom solutions to ostomy problems. If you start to have any skin issues around the stoma, be sure to get care right away - you don't want that to get out of hand.

If you have APR surgery, you'll DEFINITELY want a soft pillow to sit on for the ride home from the hospital. I used an old bed pillow, which I ended up carting around with me for about a year after the surgery. APRs can sometimes take a really long time to heal completely. My nurse also arranged to give me a dose of pain medication right before the car ride home.

At first, changing the ostomy appliance was a really slow process, because it seemed like there were all these different steps and supplies. It gets better quickly with pratice. I don't really have to think about it now.

Walking will be really slow at first (well you can imagine why!), but you can still do it and it will slowly get better.

Please feel free to ask specific questions.

SnapDragon2
Posts: 115
Joined: Nov 2019

Thank you Thank you so much for your advice and knowlege SoCal42!  I am going to an ostomy support group meeting on the 8th to gain more knowlege about that and contacted some companies for ostomy samples.  We'll see how that goes.

SoCal42
Posts: 78
Joined: Jul 2017

WOC nurses can also be a really good source for samples. If I want to try a new type of product for any reason, my nurses have always been able to give me a small supply as a trial first, before changing the order for my insurance coverage. People also figure out all kinds of short cuts, modifications and tricks, so the support group might be great for that. I went back to work full time with my ostomy for a whole year in between treatments, and nobody would have known if I hadn't told them.

SnapDragon2
Posts: 115
Joined: Nov 2019

Thank you!  I just sent a text to support group organizer if see if the nurse can bring some supplies samples.

Annabelle41415's picture
Annabelle41415
Posts: 6349
Joined: Feb 2009

It's going to be an adjustment getting used to an ostomy, but one thing you should do is have an ostomy nurse see you before the surgery to mark the placement of the ostomy.  Doctors just don't have good insight into placement, but an ostomy nurse does.  My nurse marked both sides, one for permanent and one for temporary. 

Make sure you bring some very, very loose clothing as you will be really sore.

Everyone has given you very good advice and I'm dittoing the fact that walking is the best for healing.

You are going to be hurting after the surgery, and having gas pains are going to sometimes be unbearable. 
Don't eat anything with high acid as this will make things worse.  Try eating what they allow at first and then introduce new foods to your diet.  With an ostomy, they might restrict you to stay away from certain foods so it doesn't plug the output in the ostomy.  Once again, walking helps reduce the gas pains.

Wishing you the best during surgery, and we will be here to help you get through all of it.

Kim

SnapDragon2
Posts: 115
Joined: Nov 2019

Thank you, Kim!  You have a calmness to your writing style.  My dr said an ostomy nurse will help with marking me (I might leave a note to dr on my skin beside the mark, ha) and a dietition will go over some food issue possibilities.  Whew!

AnneO1965's picture
AnneO1965
Posts: 111
Joined: May 2019

I didn't have any gas pains, and they did not give me any restrictions to my diet post surgery. They just turned me loose with a "go forth and conquer".   Wish they had warned me about a few things...  Like broccoli... Remember to chew your food thoroughly before swallowing.. Without being too descriptive, what goes down in chunks is harder to process.

Kim has it right about the loose clothing. I ended up just wearing one of my nightgowns home because my tummy couldn't take the pressure of the waistband of my sweats.  LOL let's talk underwear... Depending on what type you wear, you might need to get some new ones.. I used to wear the hipsters.. But the waistband hit right smack dab in the middle of my shiny new stoma, so they are now out.  I don't do bikinis, cuz I've got that "I've had three kids" fat roll (yes, yes, I'm a heffalump), so guess who is now the proud new wearer of granny panties...

 

To me, the best thing you can do at this point is roll with it... Your life has changed forever and there is no going back. Laugh at stuff... Seriously... It's so much better than crying over it.

 

 

SnapDragon2
Posts: 115
Joined: Nov 2019

Thank you, Anne!  I really appreciate all your advice and knowlege.  I have 4 nightgowns so far, a warm blanket and ordered some chux.   

SoCal42
Posts: 78
Joined: Jul 2017

I also was released without any specific food restrictions, but I think colostomies don't have as many blockage issues as ileostomies. My nemesis has become unchewed corn (has caused multiple partial blockages, which don't feel too great), and my doctor also warned me about chewing nuts really, really well. Also broccoli, cauliflower, brussel sprouts, cabbage and onions are known for causing gas, which can be noisy at inconvenient times with an ostomy. I would often avoid eating those if I was working the next day. The noisy gas issues were definitely much more noticeable immediately after surgery, but now after three years, is kind of rare.

I bought some larger underwear to wear immediately following surgery, to be more comfortable with any abdominal and rear end swelling with APR.

The placement of the stoma is tricky. The surgeon wants it in the middle of a strong band of muscle, the patient doesn't want normal clothing to hit it, etc... My ostomy nurse, surgeon and I spent quite a while determining the final placement.

SnapDragon2
Posts: 115
Joined: Nov 2019

Funny Story:

Never been a fan of underwear.  My grandaughter mimics me and wants to do everything I do when she is here and one of the things is not wear underwear, lol...I have been thinking since way before my cancer dx that I should be a better influence and get some underwear just for when she stays the weekend, ha.  I guess I will definitely add granny panties to the list of things I will need for post surgery.  Ya, my granduaghter is going to flip out :)

Trubrit's picture
Trubrit
Posts: 5009
Joined: Jan 2013

After radiation I could not tolerate wearing underwear. It didn't hurt as such, in fact to this day I can't describe the feeling adequatly. It almost made my skin crawl. 

I spend as much time without underwear as I possibly can, even though the crawling feeling isn't quite so bad, it is still there. 

Tru

AnneO1965's picture
AnneO1965
Posts: 111
Joined: May 2019

You'll want some anyway so that your drain tube doesn't dangle when you walk.

SnapDragon2
Posts: 115
Joined: Nov 2019

Why does it dangle.  How long will it be?  How long will I have it?

AnneO1965's picture
AnneO1965
Posts: 111
Joined: May 2019

LOL  well, IF you have one, it has to be long enough for you to be able to reach it to empty it. Mine ended just below my knees (if I remember correctly) and I had it about a week after surgery..

SnapDragon2
Posts: 115
Joined: Nov 2019

Thank you!  Its things like this I need to know so I don't have "wake up suprises".  

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