Bloated tummy after DIEP

teachersped

Ladies I was so happy to have finally found you all. I actually cried. I was diagnosed with Stage 3 Multifocal Lobular Breast Cancer in Jan. of 2017. My mastectomy went wonderfully. Then I found out I was going to need radiation. I had 28 treatments and was told it would take a year for my skin to heal. I was also told that implants would not be an option for me. So I began to investigate my options, talked with several doctor friends and went to two PS. I ended up choosing the DIEP, however after reading all of these posts, I am sure it was more of a muscle sparing TRAM. Five days after surgery my belly button began to die. My skin turned black and I had to have another surgery. This time I was not cut open from hip to hip, but it was about a 10 X 4 incision. My PS removed the umbilicus and the mesh, replaced the mesh with the Strattice mesh that melts into your abdominal wall. The PS had to leave the wound open in case of infection and built me a new belly button. I was in the hospital for 15 days and then 3 days of rehab. My open wound finally healed after 8 months and all the while wearing a binder to support my abdomen. I would swell up to an 8 month pregnant lady. My PS had no idea why nor my family doc and my oncologist. I was cleared to begin light exercise. Two weeks later I develop a hernia. More surgery, more pain and more swelling. Still continued to wear the binder. I was seeing a PT for massage therapy and she was trying to help with the swelling too. I have actually been seeing her ever since. I feel good when I leave her but next day swelling back. I have read a lot of you having issues after eating, walking etc. Clothing not fitting, falling down below belly button. I have not worn a pair of button jeans in three years. I battle with constipation and take probiotics and fiber daily and most weeks several laxatives. Everything I have read on here... all the same for me. That was why I was so happy to have found this. I thought I was the only one. I have had a second hernia and am still battling swelling and pain daily. My PT has me wearing "spanks" to try and help with the trunktal lymphodima. I am finally having my first revision surgery to remove the dog ears, extra fat and skin and fix a small flap of extra skin. I am also getting a lift on both sides and nipples. I hope this is my last and then I can get the tattooing. How disappointing for all of us to be told that we would have boobs back with a tummy tuck never knowing how bad we were damaging our guts.

moderators

Welcome, teachersped. We are so sorry to hear about what you've been through, that all sounds remarkably difficult! But we're so glad you've joined us, because you are most certainly not alone. We hope you continue to make progress in PT, and we're sending all the good thoughts your way for your first revision.

The Mods

charlierun

Hi teachersped, My heart goes out to you, you have endured so much since your diep/muscle sparring tram flap. It was very helpful for me to read as I am in the process of making a decision as to what type of reconstruction surgery to choose after a bilateral mastectomy. I had prior abdominal surgery, a sacrocolpexy, 12 years ago which caused long term constipation even though I am a runner .Despite my plastic surgeon assurances that I am low risk for complications with a diep, I am not convinced. Your post has really highlighted some significant complications, I sincerely hope you obtain some relief from the trunktal lymphedemea.

teachersped

Thanks Charlierun. It is such a hard decision. I had PT yesterday and talked a lot about the differences of DIEP and TRAM. TRAM flaps and muscle sparing TRAM's are pretty much for folks that have damaged skin maybe due to radiation. DIEP is for those that don't need a lot of fixing. I have a cousin that was diagnosed with breast cancer a couple years after mine. Her tumor was tiny and she did not need any radiation or chemo. She is not even on any type of post hormonal therapy. I tried to talk her out of the DIEP but she went through with it. She did great. She has had no abdominal issues and healed right up. However after finding this forum and talking with my PT yesterday I get why. She did not need a lot of fixing. She was able to do the DIEP, a true actual DIEP. I think that Plastic Surgeons tell us we are getting a DIEP but as soon as they take muscle for the blood supply, it's a TRAM. And TRAM's are so much more of a recovery. When you loose that muscle, you loose so much core strength. When I investigated the differences 3 years ago, I went with the DIEP because there was no muscle being removed. Then I have my surgery and find out that muscle was removed. MY PS insists it's still a DIEP but I just don't see how. My cousin did not have any muscle removed. Her recovery was so much easier than mine. It makes sense. I am frustrated that doctors are telling folks that they are getting a DIEP and then muscle gets removed and then bam! We all have abdominal issues for the rest of our lives.

Charlierun if you can get a true DIEP... go for it. You are in my thoughts and prayers.

chicklet

I am on this site to tell all you women out there -DO NOT DO DIEP OR TRAM FLAP !!! Your body and mind will regret it it is so invasive.

BAD SURGERY!! IT IS OK TO GO FLAT!! You have only moments to figure out what it is to do after your diagnosis. Doctors will tell you that you are a great candidate for this procedure.DO NOT DO IT!! I urge anyone that is thinking about doing a deip/tram flap to NOT DO IT!! This is a very intensive procedure for your whole being. It interrupts your whole body's well being including your mind. The tightness, the hard scar tissue ,the bloating, the stomach issues are extremely scarring to your mind. My body feels like it is in distress constantly. Nothing fits, the clothes just do not fit well. I don't sleep AT ALL. I am constantly in a state of tiredness that I can't seem to function. It is such a bad surgery. I also think of these FAKE BREASTS as just that. They really serve no purpose. GO FLAT!!!! I am thinking about having them removed constantly lately. They are just so painful at times. reason of the no sleep thing. It has been 5 years 4 major surgeries later & I am still in a constant state of distress. Their are moments I just can't function because of how much distress my body is in. DON"T DO IT!!!

charlierun

Hi chicklet, Your post has really grabbed my attention! I am saddened to hear of all the suffering you are enduring! I hope you find some relief or solutions to improve your physical health, and finally get some well deserved rest!
I have been increasing my research on this method of reconstruction as in Alberta where I live , most surgery had been cancelled due to high Covid numbers that overwhelmed our hospitals , with increased ICU admissions. I had told my Plastic Surgeon I had decided to go for the DIEP reconstruction 5 months ago as my choice following a prophylactic bilateral mastectomy due to a BRCA2 mutation. However, due to this delay( and I don't know when the surgery will be scheduled) , I have increased anxiety about this choice of reconstruction. I have been second-guessing whether I will have a prophylactic bilateral mastectomy and what type of reconstruction.

I really have to wonder if the possible damage to the abdomen, resulting in hernias, abdominal bloating etc. is worth the feeling of warm, natural breasts. It doesn't look like anyone can predict whether they will have a successful outcome from the diep surgery , or whether they will be the person that has life altering surgical complications that will impact a persons quality of life forever. I am curious if prior to undergoing this type of surgery if the surgeons give a prediction of the potential for this side effect of abdominal bloating,hernias, and whether there are any remedies, treatment and so on

abigailj

I’m really sorry to hear about the awful complications the women on this thread experienced. My own experience was nothing like that. Bloating went away completely after around 4 or 5 months, I never experienced any lymphedema, and although I have a small area of numbness, mostly on one side of my belly, feeling came back. I also have maybe 60% feeling back in my recon breasts. I did have skin and nipple sparing BMX with immediate DIEP recon in a single surgery with nerve grafting. No muscle was taken, my core strength is better now than before my surgery because I did a good amount of PT during recovery

The most important thing that I think reduces risk is to use a surgeon that has a lot of experience specializing in DIEP. I don’t want to minimize that it can be a long recovery and complications are possible with any major abdominal surgery as those on this thread described no matter how skilled the surgeon Everyone needs to decide what is important to her and what risks she is or is not willing to take. I totally respect it’s a very personal decision, just sharing my experience and perspective.

cathyAA

I had a latissimus Dorsi flap that failed, and the expander got infected. It was awful. I had two surgeries to correct everything and I was left flat. I then developed cancer in the other breast, so had another mastectomy.

After a few years, I decided on having a bilateral muscle sparing tram. I had it 3 months ago. I still need to get the asymmetry fixed, but overall the breasts look good and have healed up nicely. The abdominal incision has healed well, but I do get some bloating in my lower abdomen that come and goes. I had a lot of things to get fixed, especially on the left side. I need to have a lot of scar tissue removed before the flaps and I also had radiation so the skin on my chest was not used at all. Even though it was a long, I have to say, for me, it has not been as difficult as the lat flap surgery. I am, overall, very pleased and especially grateful that I won't be having any surgeries after the revision is done.

lisapizza

I had implants for years but radiation wrecked the blood supply to my breast, so the DIEP operation was proposed as a solution to bring in more blood, plus more skin. Lack of blood meant scar tissue build up, harder skin and shoulder pain from my contracting pectoral muscle.

I had a bilateral DIEP.

I was told they try for DIEP but sometimes need to take a tiny bit of muscle to get the blood vessels out cleanly, in which case as soon as a scrap of muscle is taken it’s called TRAM. Maybe calling it DIEP is a technicality or a billing issue in the US? In Australia, it’s called TRAM to acknowledge the higher risk of hernia.

My breasts are so, so good. After 7 years with implants it’s a joy to have them gone. My chest is less tight. My boobs are floppier. More “natural”. My shoulder pain gone.

The abdominal wound is more of an issue. I think I’ve fixed the pain in my chest to the detriment of my abdomen.

I certainly wouldn’t discourage anyone from this surgery. It is doable. And I had to do it to fix my radiation issues.

But it is hard physically and mentally. I had a second surgery to remove post operative infection. I look like frankenstein with so many scars. I’m still in elasticated pants (month 2). My focus is on trying to get my abdomen as comfortable as possible but the mesh is like a seat belt. I’m trying to summon the energy to stay hopeful but it’s hard.

I’ve had 10 surgeries including a liver resection and this is the hardest mentally and physically as recovery is the longest