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Surgery Tuesday - Questions

lauragb
Posts: 370
Joined: Aug 2011

As the day of my surgery gets closer I am trying to get things ready and prepare the best I can for what I'll be facing. I will be having a colo-anastomosis with a temporary ileostomy and I'll be having a hysterectomy at the same time, all open incision. The colorectal surgeon felt that my uterus needs to be removed because it is enlarged with fibroids and pressing on my rectum making the surgery too tricky with it still in there. So, two surgeries at once. Yikes. Many of my questions have already been answered on this forum but I do have a few more and just want some advice.

First,is there anyone out there who had a hysterectomy with their cancer surgery? If so, how did it go?

Did anyone have their ports used for IV access during surgery or while in the hospital?

This may sound silly, but should I take any underwear or PJ bottoms for later in my hospital stay or is it just too busy down there for clothing?

Does anyone have suggestions on things to take with me to the hospital that you found useful or were glad you had?

And does anyone have any advice on how to handle a four hour car ride home with pain issues and the ileostomy?

I'd appreciate any advice, comments from anyone as I try to mentally prepare myself for this next mountain I have to climb. Thanks. Laura

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

I can only help with one part of your upcoming surgery, maybe. At Stanford, they absolutely refused to use my port. I remember asking why and getting an answer, but I can't remember what it was, the nurse even tried to get the Doc in charge of my recovery to use the port but he was totally against it, even with her recommending it. So be prepared to be stuck many times during your stay if their anything like Stanford. I really don't know who to tell you to ask about that at the hospital.
I wish you the best in your surgery, and OMGosh, I can't imagine a four hour ride home, so I can't give you advice on that, it just hurts to think of it. Do you have a car that enables the passenger to lay the front seat all the way down??
Thinking of you,
Winter Marie

smokeyjoe
Posts: 1428
Joined: Feb 2011

I had a complete hysterectomy at the time of my colon resection. I didn't have an iliostomy though, so I have no advise to give you there.... they just reconnected my bowel. So, I can't help you on that one, but I would bring p.j.'s, slippers. After surgery they recommended chewing gum to get things going, again with an iliostomy I don't know if you'll need that. Best of luck to you, be well.

Lovekitties's picture
Lovekitties
Posts: 3323
Joined: Jan 2010

My surgery consisted of a perm colostomy, removal of tumor, rectum and anus and a total hysterectomy...a nice incision from belly button down to pubic bone. Adding the hysterectomy in with the other stuff was not a big deal. I had a problem while still in hospital with a twisted intestine and they did a second 'fix' thru the original incision. I had a morphine pump...serve yourself pain meds. I had to have a direct line put in at my neck because my veins just wouldn't support the IV and changes needed during stay.

I did take a gown and robe but didn't use them. The hospital gown was best for all the checking of incision and other places. For heading home you might want to consider a sweat suit with drawstring so you can adjust it above your incision.

I did take a snuggie which was great. Kept me nice and warm and was easy to put on backward as a cover up when I had to walk the halls.

Make sure your doc knows about the 4 hr ride so you can get pain meds just before you are released or you may need to make a stop at drug store to fill prescritions before heading out.

My biggest ordeal was hospital food. I think it was caused by the meds, but I just could hardly stand the smell of the food much less eat it. The nurses were great at getting me anything I thought I might eat no matter what the time.

You should do fine.

Marie who loves kitties

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

They used my port while in the hospital.
Also, bring a salt shaker if you're allowed to have salt. The food tends to be rather bland.

For the drive, I found using a pillow to put against my abdomen when riding in the car helped.
I did not have an ilestomy so I can't help with that, or the other question

Annabelle41415's picture
Annabelle41415
Posts: 6153
Joined: Feb 2009

First of all I'm wishing you the best outcome for your surgery and I'm sure it will go well. Can't address many of your issues, but for the port I'm thinking that it can get in the way and be a detriment during surgery because it is usually placed in the chest area. Also it can become unattached if pulled on. Taking pj bottoms to the hospital to me were useless as the incision was uncomfortable and didn't want anything on my waist anyway. Bring books, mags, computer, chap stick, gum (if they allow it), little head covering like a cap (my hair always looked terrible even when doing it), pad of paper and pen because you will want to ask your doctor questions when he comes in and you won't remember all of it. These are just some things. After going to bed tonight I'll lay up there thinking oh yup and that too :)

Good luck to you dear one I'm sure you will do fine. Kim

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I had my port used during my stay, it was great not to have any pokes... I wore a gown first few days, easier with a foley etc... I wore pjs after the first few days, thats all I could wear with all the swelling I had.
Can't offer any info on the 4hr car ride, only to make sure you have supplies for the ileostomy in case it leaks.
Sending positive energy your way. Petrina

khl8
Posts: 810
Joined: Nov 2009

Laura,
I had a hysterectomy during. my resection and also the illeostomy. My colorectal surgeon did the initial incision, then the GYN surgeon came in and removed the uterus, falloprian tubes, and even my cervix. My surgeon wanted all of this out so that there was not a chance to have the organs become cancerous. you will be in pain on the ride home and the bag will feel weird as if it could fall off at any moment. I prefered to buy yoga pants as they felt like I had some support for the bag. They were snug, not tight against my abdomen and that made me feel more secure.

Kathy

lauragb
Posts: 370
Joined: Aug 2011

I appreciate all of your comments and suggestions. I am gathering what I need to take as we will be leaving early Monday morning. I will be meeting the gynecologist for the first time who is doing the hysterectomy part on Monday briefly and get to do the pre-surgery clean-out in a hotel room. Sorry to the neighbors for all night toilet flushing! I'm trying to clean house and get things done knowing I won't be able to for awhile when I get home.
I have another question. I have a lot of stairs in my house. Will I be able to walk up and down stairs?
And another, How was your recup time at home?

It helps to know you've all been through a surgery of sorts and are on the other side of it. I know I'm not alone in this.
Thanks so much.
Love and Light,
Laura

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

I'm coming up on surgery #5 in a couple of weeks, and am having my uterus removed as well. My experience has been that the first week at home really kind of sucks, next couple of weeks considerably less so, feel pretty decent about 3 weeks out. Last surgery I had I went on a short backpacking trip 6 weeks post-surgery. One thing that I found helped in the recovery period was using lots of ice on the incision area. Constant icing actually worked better for me than the pain pills, which I had trouble keeping down anyway for the first several days after coming home. Another tip is not to jump back into eating normal food right after you get out of the hospital-it's tempting to do so, but I learned the hard way that our systems need time to get back up and running before overloading them with food (like a tuna sandwich, say...ugh.) Stairs were fine for me, just had to take it slow, and I always try to walk as much as possible. This isn't the greatest time of year to get outdoors, but if you can, fresh air and movement definitely help. I'll keep you in my thoughts, and be sending lots of positive energy your way this week. Keep us posted on how it goes-Ann

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

I also had what turned out to be 5 1/2 hour drive after my surgery. Yes, get pain meds. Also, in anticipation of the long trip home, see if they might keep you in an extra day for that extra bit of healing. I did that after my hernia-repair surgery - it gave me an extra day to feel human (and meant I wasn't leaving NYC during Friday afternoon rush hour, which had added 2 hours to my prior trip back.)

Good luck - not much fun, but doable (we all did.) I had the hysterectomy as well - really adds nothing to the surgery. No ileostomy, tho I was resected in 3 places. All re-hookups work perfectly well.

Wishing you well.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Had what you're getting ready to have two years ago after being dx with Stage 3 rectal cancer.
Using my chest port, I had both the post-radiation/chemo cancer removal, a temp ilestomy and a complete hysterectomy done at the same time, and it was a long surgery (6-7 hrs) with a nine day recovery in the hospital.
Being naive, I packed for the hospital a couple pair of pjs, some make-up (!) and assorted body stuff.
I used none of it. Zip, zero, nothing.
The hospital provides everything you need as far as body care, and you will wear a hospital nightgown the entire time as it's easy to access and remove.
I did bring some crossword puzzles and photos of my family, and drawings by my then 4-year-olds that one of the kind night nurses taped on the walls. later on, my husband brought in a portable DVD player and an extension cord so I could watch some favorite comforting movies.
The four hour ride home sounds long and hard, and I would suggest you medicate yourself for it, and maybe have a soft pillow to clutch to your abdomen as there will be staples there.
Do not envy you for entering this surgery, but the bright side (yes there is one) is that others like me have gone through this entire process and come out on the other side. You would not know now that I had ever been through so much.
And for me, another bright spot was I didn't have to worry about the cancer jumping to my ovaries or uterus, not to mention no more PMS or periomenopause.
You can do this Laura and I'm happy to help you in any way I can. Been there, and am now here for you.
Your Friend in California~

lauragb
Posts: 370
Joined: Aug 2011

These posts have helped me so much. I do have so much support in my community but the support of people who have been where I'm going is priceless! I was told that my port would not be used but I sure would like to talk someone into it. When I was in the hospital post chemoradiation for infections, my port was used for everything and that was nice, more comfortable than an IV. Then I just got stuck for blood draws. With everything that's going to happen, you'd think I'd see getting stuck as minor but not so for me, always been a little phobic about it but I'd have to say I've had to get a little more used to it!
Again, I can't thank you all enough!
With love and light,
Laura

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Hi Laura, I haven't given much advice on here for awhile, but your questions took me back to last year. I had my resection and temporary iliostomy a year ago from October, then had the reversal. Its good you are thinking ahead!

They would not use my port and I did have to have my IV restarted. I had surgery on a Friday and discharged on Monday. And you need to stay as long as you feel necessary. Dont go too soon especially living so far away.

I took PJ's and panties but mostly used the gown and the robe and slippers because they will have you up and walking very soon, I was up the next morning but didn't do to well at first. I had a catheter for a couple of days so the undies and jammies had to wait.

I live 5 hours from my surgery hospital. My iliostomy gave me problems leaking and we took some paper towels, wipes, plastic bags...stuff for clean up. But didn't need it :) I was so thankful to have a pillow and blanket for the car ride! Take only comfy clothes my dear.

My nurse was so kind and discharged me right at the time after I was medicated with my last IV pain and nausea meds. Make sure your family fills your prescriptions before time to leave so you have them ready. I needed then both. I got so nauseated and pale my daughter almost turned around and took me back.

When you get home, rest and let your friends and family help. It was hard for me to get up from my bed and needed help for almost a week. I spent most of my time on the couch where it was easier to get up.

Good luck with your surgery! You will do fine and we are all here for you!

Love, Gail

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

Hi Laura,
My surgeon was pretty sympathetic to making things manageable during long trips (three hours plus). I did not need the help when coming home from the hospital, but during the nine months after my temporary ileostomy when I went on long trips I took Percoset. It did a pretty good job slowing down, or even stopping, my digestion for about four hours and helped my deal with discomforts while traveling. I had the same routine after my reversal except I stooped eating meals mid-day the day before the trip. Two Percoset did the trick for me for about four hours of traveling comfort. Longer trips = more Percoset as needed. Since you will just be leaving the hospital after surgery, you might already be on meds that may work even better.

I have since had a permanent ileostomy and for whatever reason I don't have issues traveling four, six or even eight hours any more. Maybe a couple stops along the way when driving is all I have needed, even on long trips - pretty normal for my wife and I any way. Of course you have to deal with public restrooms and I think that worker at the rest stop in Connecticut will ever forgive me for the entire bag of poopI I let drop just as I entered the stall. I don't know if making it into the stall made things any easier for him - I cleaned up as best I could before I left the stall! I am rather thankful I had a change of clothes.

Taking a plane has not been a big problem either. Just be very aware of how full your bag is because you have to share the bathroom with all the other passengers. I tried hoseying it for my personal use, but the flight attendants said no. Airplane bathrooms are kind of small, so before embarking on a long flight you might want to practice emptying by placing a paper bag over your head, duct taping your elbows to your sides and trying to emptying your pouch into a small coffee can. To be effective you must sit on the coffee can. If you can not manage a small coffee can you can start with a large one and work your way down to the small one after some practise. This little exersice might not be helpful, but not matter how bad hings get in that little airplane restroom you will probably be laughing your *** off thinking about your "training" anyways!

Best wishes,
Rick

lauragb
Posts: 370
Joined: Aug 2011

As I said before these posts have been so helpful! I was seriously reading yours Rick when I got to the airplane bathroom and cracked up with the image you created.
For the trip home from the hospital, I've been thinking about the rest areas along the way, remembering they might have family restrooms so my husband can join me in the task of emptying the bag if necessary, so much preplanning that revolves around poop in whatever form it is at the time. I'll guess I'll be quite a sight.
All of us are members of the brown ribbon campaign as coined by a friend who has had anal cancer.

Seriously though, thanks again everyone.
Love and Light,
Laura

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