DIEP Post Surgery - tell me the truth!

NanG...I had bilateral DIEP. I also had both my children naturally with no pain meds. I have to say the pain after DIEP was worse pain. I don't know if it was because it lasted so much longer than childbirth pain, but it was severe in my case. I wasn't expecting that kind of pain. Any movement that involved using abdominal muscles (almost everything) was nearly impossible for me for about 36 hours post surgery. With that said, I would. SOOOO do it again!! I love my results. Each day got easier.

I had a unilateral mx right after diagnosis, then went through chemo and rads. So, my emotional reaction to losing a breast had already occcurred by the time I had my other breast removed and DIEP surgery. But, initially it was very hard...I had a total hysterectomy, lost a breast, lost my hair......wasn't too much left that left me feeling very feminine. I just kind of went into survival mode at that point. By the time I started recon, I felt life returning again. Hopefully, if you have immediate recon, you will wake up with warm, squishy, healthy breasts!!

I had 4 flaps removed from my abdomen and upper hip, but only needed two...so maybe my pain was more intense and widespread. You will be thrilled in the end, so try not to focus on the pain for now! Wishing you great results!

It will be painful but not unmanageable with pain meds. Honestly I barely remember the pain. The breasts are numb the abs are numb. It was my back that bothered me most. As long as I stayed on schedule with my meds I was OK. Besides pain I was extremely tired and could only stay awake for an hour the first couple of days. That got better each day along with the pain. I found childbirth much more painful.

I wore loose yoga pants with a wide waistband. They were perfect! My surgeon provided me with multiple bras and compression garments to wear afterward.

i'm just home from my bilat diep flap surgery last thursday. here are some random bits that may be useful for you:

you will allowed nothing to eat or drink for up to 24 hours after surgery. this was possibly the worst part for me--i felt like i was dying of thirst. ask for the sponge swabs that they will dunk into cold water and let you suck. those crazy little things saved my sanity.

they will be using a doppler device to check your flaps' blood flow every 15 minutes for the first 12 hours in CCU, and then every hour or two hours until you are released from the hospital. sleep will not be an issue because you really don't have the opportunity!

the morphine pump... the line that the anesthesiologist installed before surgery will be with you when you awake--they will likely keep it there for your entire stay. it's just easier than putting in a new one if things go wrong quickly. the morphine feeds into this and don't be shy about using it. when you're lying there, doing nothing, everything's peachy. but it's when you have to move in and out of bed that you'll really need something to take the edge off. take a hit or two off your pump when you know you've got some activity ahead. you probably won't move out of the bed in CCU but you will be helped to a sitting position so you can dangle your feet off the side of the bed. you'll need to walk at least once by the end of post-op day one. some one will accompany you and you can go as far down the hall as you wish.

the foley! you will wake up from surgery with a foley catheter in your bladder. you won't feel it (but if, at any time, you start to feel urgency that is not relieved, notify your nursing staff at once; i had a kink in my foley after hysterectomy and it was agonizing). they will remove the foley as soon as you reach the stage where getting in and out of bed is at least a little more manageable--it will come quickly. the first time i left my bed to transfer to the non-CCU room, i was gasping in pain. a nurse whispered that it gets better every single time and she was right. her words helped me. of course, you've had children so you may scoff at the pain!

i ran a fever after surgery and had a fan and constant supply of ice. i think most people are cold. use your call button or you family to get you whatever you want! i had no energy or attention span---i checked email (and this board!) post-op day 2 but i couldn't even follow a 30 minute television show, much less a book or magazine.

a nurse gave me a "bed bath" on post-op day 2 and, on day 3 before i left, i took a shower. i put on the yoga pants that i had arrived in, with a long sleeved tshirt, flip flops, and down vest. some sugeons prescribe (and provide) compression garments or bras; my PS doesn't want us wearing anything binding. oh--if you have drain belt, bring it. i had one from my mastectomy and thank goodness i brought it with me because the hospital only had safety pins for my four drains. and bring sunglasses for the drive home!

good luck. it'll be great!

For me, the worst part was being warm under the bearhugger and itchy, especially on my back.  As far as pain goes, I had a pump, but used very little of it.  I think I took one pain pill.  Quite frankly, I didn't need it.  About 4 weeks post surgery, when the nerves were really regnerating and nearly everything was healed, I'd have an occassional stabbing pain.  The only thing that consistiently hurt during the first couple of weeks was my lower back.  I was quite frankly in more pain after my first marathon.

After waiting 3 years after my mx I am also scheduled for bilateral DIEP on June 28th.  I had not planned on doing this yet, but I am now actually looking forward to throwing away my prostetics.  I'm worried about the pain, but figure I will deal with it as it comes.  The only reason I am doing this now is due to a pending divorce and losing my insurance.  I figured if I waited until I felt I needed it I might not be able to have it due to financial issues and change of insurance.  If you would like to communicate as we both recover I figure I will have plenty of down time.

thank you all for sharing

I just had a bilateral DIEP on May 24, 2012. i came home from the hospital three days ago. I have had two major issues. The first was that I could not tolerate any of the pain meds. They tried 4 or 5 different kinds, and I could not shake the nausea. The good news is, the meds really do keep the pain at bay. Now i am just taking Tylenol, and do have some discomfort. You will certainly do better than me with the meds. My second issue has been getting comfortable while sleeping propped up on my back. My husband finally went out and bought me a recliner yesterday for sleeping. it has helped.

You will do well! Good luck!

Here you go...  http://www.cancernetwork.com/breast-cancer/content/article/10165/69873?pageNumber=1

I haven't read the entire article, but certainly worth looking into, and if your surgery date concerns you, by all means speak up and see if it can be changed to coincide with any potential benefits of scheduling within a specific timeframe.     Deanna 

I had a unilateral with deip flap and was prepared to feel like a truck hit me and I never did. My last drain came out on its own this morning, on call surgeon said it can't go back in, sterile issues- so I will call Monday. Drains weren't under the 20 ml my doc wanted do I am not sure what he will do. I hope they don't put a new one in...... I will worry about that on Monday.

In the hospital I didn't get morphine pump until night three and it was taken out in the morning, one nurse was surprised I didn't get it sooner. I am thankful the past 3 1/2 weeks have been ok. I hope everything is as good for you!!!

NanG - appearance was one of the reasons I chose not to go with a DIEP.   I figured my body was scarred up enough. I didn't want to look at a scarred up belly while in a bathing suit, although my belly would be flatter! I hope one day, BC will not be in the forefront of my mind.   You need to make the choice you are most comfortable with, whatever the reasons.

Finally, something I know about.... I am knee deep in deciding on chemo - So somewhat distracted.... BUT I had a DIEP on May 11th, 2012.  I previously  had  (8 years ago) 2 lumpectomies and radiation on my left breast, left with chronic pain...Drs didn't know why......I wouldn't let anyone touch me, couldn't hold a baby, couldn't hug.  I went into a profolactic DM (sadly more cancer they weren't expecting)  but as far as the DIEP goes.... I am a HUGE fan!  I have hated every part of my cancer experience except for the DIEP.  For sure, this is a big surgery!  But you go to sleep with breasts, and you wake up with breasts.....Not the ones you lost, yet breast mounds for sure!  And a flat stomach to boot!  I never felt "less of a woman" and I can't wait for nipple reconstruction!  I was out in my swim suit today - Not self conscience, not worried - I hate cancer - but I LOVE the DIEP!  It was the right decision for me, no more chronic pain on my left side, increasing feeling everywhere - I know I will never have the breasts I lost, but they were trying to kill me..... These are perky, happy and no pain!  If you live anywhere in the PNW Dr Kim is your man.   Nothing is gurarenteed, but I am wearing the bra a wore before surgery and SOOOO happy about my DIEP decision.

ps  No scars, all is done through a keyhole incision, no horizotal scar, just round shaped scars that will be used for nipples, then tatooing.  No scar at all across the breast - Kinda looks like barbie boobs right now - but in a few months, they will look like real boobs, but of course, no feeling.....but to the touch, as soft as your belly fat!

This is a big decision - I'm only saying, that although I remain pissed off at cancer - the DIEP has been a true blessing for me.