Anyone else struggling long after DIEP reconstruction?

Mavericksmom

When I was diagnosed with ILC in Dec of 2018, as many here already know, I wanted a double mastectomy with no reconstruction. My breast surgeon told me the hospital policy is not to remove a healthy breast unless BRCA + which I am not. I wanted to go flat and he told me why "I needed to have some kind of reconstruction." He called the plastic surgeon to see me right away, and I soon found myself out of the equation. Normally that would have been the red flag that sent me off seeking another opinion, but I was in shock at having cancer again after 15 1/2 years, so I just went along with "their" plans for me. I have no doubt that DIEP is a great option for those with an already great body, but that is not me! I am old, 67, and obese. I have had an ugly body for as long as I can remember, although with clothes on, I don't look too bad, I always wear long sleeves to cover up my left arm which is double the size of my right arm due to lymphedema. The only part of my body I ever liked were my breasts, and while I wanted to keep them at any cost in 2003 when first diagnosed, in 2019, I wanted them gone.

I was pressured into having DIEP surgery. I am still unsure why I had to have my bellybutton relocated, as only doctors see it, and it is quite hideous looking, even after 18 months. My problem is not only do I hate my "new" body, but it causes me a lot of pain and discomfort. I constantly feel bloated on top (some refer to theirs as a "muffin top") and have constant pain on the right side on the abdominal incision. I thought I had a hernia, but couldn't even get my PS to look at it. So, I saw the NP at my PCP's office and she listened to me and set me up to have an ultrasound. That was inconclusive so today I had a CT scan. I already got the report, "completely negative." No hernia, no reason for the pain. I can't imagine living with the bloating and pain for the rest of my life, but I don't know what to do other than lose weight.

Has anyone else had problems with this surgery? I have to lose weight anyway, but I am hoping someone out there had similar issues and weight loss helped relieve their pain and bloating. I had been doing well with my diet when the pandemic hit. I put on about 15 pounds working from home. Not exactly helping my situation. Now I am back at work in a school, so good chance I will eventually get Covid. I do what I can to protect myself and I am certainly not going to "throw in the towel." Obviously, being home wasn't good for me either. Maybe I am grasping at straws here, but I am out of ideas and living like this the rest of my life just isn't an option. Has anyone done specific exercises to help with this?

For now I am committed to diet and exercise but if anyone has any suggestions I would appreciate hearing them. Also, any suggestions for the mental health part of it. I have immersed myself in work to "not think" about how bad I look or feel, but it doesn't always help. I started listening to music again which helps a little. I may start meditation again. It would really help if I knew for sure that I would feel much better after shedding weight and firming up.

I would love to hear from other "muffin toppers" feeling the same.

MinusTwo

Mavrick'sMom - sorry I haven't been there or done that, but I'm sorry about your results. Thinking of you. Hope someone else comes along with better feedback.

Mavericksmom

Thanks Minus! I don’t know what is going on with me. My doctor called and told me to try the gluten free diet. I am ok doing that but this morning when I tried to eat breakfast, I couldn’t as my abdomen hurts too much. I hate throwing out food but I simply can’t eat it. I was having gluten free oatmeal. It tastes fine, but after a few mouthfuls I got bloated. Maybe I just have a sensitive stomach made worse by the surgery? It has gradually gotten worse each month. Anyway I decided to listen to my body, not force myself to eat anything and maybe things will calm down.Otherwise I feel fine so if things don’t settle down after a few weeks I will call my doctor and ask for advice

marie914

I am thinking of you and hoping you get somebody on here that has had diep to respond to you. praying for you

Ekojio

Hey..

I am only 4 weeks out (Wednesday) so not much input on how long pain may last.. I have an open incision below belly button right now about 3 inches or so long that im putting dressings on and stuff.. but where my incision is healed and is a scar now I feel tightness at random. Kind of feels like my body is cut in half which it kind of was.. and the muffin top areas I feel pain on left side. It has been hard for me to lay on left side as the drain is finally out on that side. I thought was from the drain hole but its definitely coming from my muffin tops. I am hoping they can reduce them a little as I've read they are called dog ears and are part of making you look more proportional on a phase 2 surgery. Is that what may be causing you pain maybe? The "dog ears" extended out too far? I also am not small so I had muffin tops before but the way they are now makes me so out of proportion its crazy. I keep hearing its swelling it will go down but I haven't noticed a change. I'm 30, and again not tiny.. ive lost 10 pounds from pre surgery weight but probably cause i havent been eating much and hospital and rehab had strict diets. Would be nice to have a diet buddy once I can get money to get food of course. .. and exercise is sleeping unless I have to go out or if I have energy to go for a small walk. Anyways, hope you are doing well.. we are kind of neighbors. Not too far from each other.

Mavericksmom

ekogio, your comments were interesting! You were put on strict diets before and after the surgery? No one said anything to me about diet other than eat a lot of protein after surgery.

I am sorry you are having problems with your incision! I had trouble with the skin on my new breast healing due to radiation burns the first time I had cancer. I think all the focus on the reconstructed breast caused my doctors to ignore or “blow off" my concern for the abdominal incision.

I decided to see a local gastroenterologist. Honestly, with hernia ruled out, I am not expecting much. I think I eat too much at one time, but I already eat small portions so maybe it is my expectations that are out of wack? I don't think I am bothered by gluten but I did stop eating bread and other foods with gluten in them. I hope to at least get some advice from the doctor but my track record with gastroenterologist hasn't been great. They all seem consumed with doing endoscopes, especially those who have a part ownership of the endoscopy center. I saw a gastroenterologist at the cancer center where I had my surgery, my MO wanted me to see her. The nurse was so nice, the doctor was so mean! All she wanted to do was a colonoscopy and she wanted me to have a pic line put in first due to my bad veins! She also refused to even look at my incision or feel the area which I thought was a hernia. I said no to the colonoscopy

Ekojio

Hello

Yes, hospital put me on a microsurgery diet which basically is just no caffeine or chocolate. But I was sent to rehab at a nursing home after a week at hospital and stayed there for another week and a half and their food just was bland. No salt, seasoning, nothing. I didnt have diet restrictions there, that is just how nursing homes cook their food (usually). Not all nursing homes as i have worked at a few with good food. But also, 3 meals a day whereas at home it is hard for me to eat 2 meals a day and now especially with barely any food left in fridge, no food stamps and waiting on TDI. But yea.. rehab i got weighed when I got there and was 266. Pre surgery i was 255. Now 245. So hey, that's good.

And with these type of surgeries hernias as so common i am surprised they just won't check for you! My PS told me I had one prior to surgery which he fixed during my DIEP which is part of the reason my surgery was 15.5 hours, along with 2 blood vessels in left boob not wanting to connect. But definitely push for them to check hernia. Especially being overweight its more common too. I was hoping I wouldn't get another one after they just fixed one because of my weight. Lol

Other than that, how you doing? It's cool to talk to someone who is so far out. How long was it before you were back to your regular self? My doctor gave me 8 weeks for TDI (temporary disability insurance) but I think will be longer. TdI goes for 30 weeks or so if need be I think it said but said anything over to apply for SSI but I dont think I'm taking it that far.

NancyHB

Mavericksmom, I’m so sorry to read of your struggles after surgery. Mine was 4 years ago and while only unilateral, I remember many of the feelings and issues you describe and will say, for me, it has gotten better over the years. In particular the tightness was difficult, and I often felt full after only a few bites of food. The “hernia feeling” on my right lower abdomen - checked it out a couple of times and nothing there. Fast-forward to today - the tight feeling is gone, I can eat more with less fullness (although too-big a meal still makes me uncomfortable), and no more hernia-feeling. I’m at a point where frankly, I forget I’ve had surgery.

One thing I’ve learned over the years - my PS won’t investigate anything not specific to the surgery I’ve already had. I ended up with a nasty superbug infection right after surgery that landed me back in the hospital for a week; never saw my PS once (though I considered it surgery-related) because it was an infectious-disease specialty. When I had the hernia-feeling and wanted to check it out my PS suggested my PCP because if it was a hernia it wasn't something he would repair (it's more of a general surgery and not plastics-related). Now, I pretty much start with my PCP for everything and he’ll tell me who to contact for follow-up.

I hope you start feeling better soon.

Mavericksmom

Nancy, THANK YOU!!!!! OMG your post was exactly what I wanted (and needed) to hear! I think you were helpful to Ekojio too!

Yes, my PS wanted nothing to do with the possible hernia or anything else I asked, I was always referred to the PCP. The PS nurse asked me to let them know what my PCP finds out, but I won't. I won't ever see the PS again anyway.

Glad to hear it got better. I am still going to the gastroenterologist, but I have other questions for her unrelated to my surgery issues so it is for information only.

Did you have a bulge where you suspected a hernia from the surgery? I have a large one, just on the right side. The tests all indicated no hernia so I have to believe that.

Thanks again, must leave for work now.

SOOOO Thankful for your post!!!!!