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Bloated tummy after DIEP

dannade
dannade Member Posts: 17

Has anyone experienced extreme bloated tummy after DIEP surgery.  It's 8 weeks since my surgery and my tummy is still numb and bloated.  I can't fit into any slacks pre surgery and it is like a watermelon.  This morning it seemed to go down for a couple of hours and then it's back up.  I am active, walk, do housework, etc.  PS says it will take time.  Anyone have experience with this?

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Comments

  • jorja61952
    jorja61952 Member Posts: 23
    edited January 2011

    Hi Dannade



    Is that the reconstruction done using a muscle from your tummy. I THINK that is another term for the procedure I had done 11 years ago. I usually call it a tram flap when I refer to it because that's what my PS called it. Anyway to my surprise I couldn't fit into my slacks either. I was like "hey I thought this was supposed to be like a tummy tuck!". Not sure it lasted that long. But everyone is different as they say. Hope you get more responses to ease your mind. Feel better soon!



    Oh and the numbness was a weird sensation. Took getting used to. Lasted really long and I still have a small area of numbness. At times I was sorry I did it because of all the unexpected pitfalls. But even today I'm happy about my flattish tummy although it's not as flat as it once was. Gets less tight with time and gravity :)

  • dannade
    dannade Member Posts: 17
    edited January 2011

    Jorja.

    Thanks for responding. 

    I didn't have a TRAM flap procedure, which is where they take the muscle and tissue to create a breast.  I had the DIEP procedure where they take a vessel and a flap of skin and tissue, but not muscle to create the breast.  However, the PS did tell me he had to take a knuckle sized pc. of muscle and maybe that's why I'm having all this problem.  I guess sometimes the vessels are attached to muscle and that's why he had to take it, suture it and then suture the opposite side so my tummy would be even, however, my belly button is not centered and I'm hoping that will straighten out when the swelling goes down.

    The numbness is very weird; when I lean against the kitchen counter, it feels like an alien part of my body.

    Thanks for your comment, at least I know it will go down some time.   

  • NatsFan
    NatsFan Member Posts: 1,927
    edited January 2011

    Dannade - if they took any muscle at all, then you ended up having a TRAM, not a DIEP.  Your ps may have started out with the idea of giving you a DIEP, but the minute he took muscle, it turned into a TRAM. 

    But even with a DIEP, I experienced the bloating you talked about.  I went back to work after 6 weeks, but I wore elastic waist velour warm up suits to work for some weeks after my DIEP until I could fit into my normal clothes again. Fortunately my workplace is very casual, so there were no raised eyebrows about my attire.  

  • jorja61952
    jorja61952 Member Posts: 23
    edited February 2011

    Dannade, well now I am educated.  I wondered what the DIEP was all about.  It actually sounds like the other option the PS presented to me.  MY belly button is slightly off center too.  Weird, but I got used to it. Never was a bikini babe anyway!

  • dannade
    dannade Member Posts: 17
    edited February 2011

    natsfan - I'll have to ask PS point blank on Fri. about what you said.  He still took a vessel and attached it which is not part of a TRAM Flap.  He was still calling it a DIEP and that's what the operative report said.  He told me upfront that sometimes he has to take a tiny bit of muscle.  But, that could explain the extreme bloat and for so long.  By mere coincidence, I was laid off in Aug. 09 one week before my diagnosis, so I have not worked since then and had COBRA insurance for everything, so I didn't have to worry about going back to work.  I'm thinking if I went back after 6 weeks, I would have been very tired by the end of the day.  I'll let you know what he says.

     Jorja - I'll get used to my belly button also, not into wearing bikinis, just want to look normal in normal clothes. 

    On another note, PS released lots of scar tissue I had from the prior surgeries and radiation, I went back to pt, but the scar tissue was back after about 4 weeks.  My pt (great lady) is working so hard on it and so am I at home; we are determined to win this time around! 

  • seeay
    seeay Member Posts: 6
    edited February 2011

    hi

    i am one week out of surgery and i am experiencing the same thing. i ts called ileus. google it. it stinks! i was supposed to have diep - but he had to take a bit of muscle so it is considered tram. we're supposed to be as active as possible to get rid of it. so far, this is the worst part of it all! i want a flat - even normal belly!

  • Springtime
    Springtime Member Posts: 3,372
    edited February 2011

    I had DIEP and was swollen and bloated for a while. I would say it took at least 5.5 months for my body to return to the point where I could wear jeans again. Hope this helps.

  • dannade
    dannade Member Posts: 17
    edited February 2011

    Seeay:  I asked my doctor about taking a bit of muscle with the vessel.  He said, most definitely, that it was still DIEP.  That, TRAM flap takes all the muscle in the tummy area with the tissue.  He was rather taken aback that I had heard something like this.  He almost always takes a little muscle to preserve the vessel because if it fails, it's not a good thing.  And, yes, I was so looking forward to a relatively flat tummy.  It seemed the least to ask after all the surgeries and treatment, right?  I'll look up ileus.  The doctor called it something else, can't remember what but I'm sure it has more than one name.

    Springtime:  I am so glad to hear someone else has had tummy bloat for more than a couple of months.  I walk when the weather is nice, which has not been much.  Am now working with an exercise ball and doing crunches as much as I can tolerate.  Trying very hard to watch what I eat, but that's hard, I like my pastries and carbs, but I am really trying.  I see the PS on March 18 which is 5 weeks from the last appt. and he thinks we'll see some improvement by then (more or less challenged me, I think).  Also dealing with seroma or hard tissue on top of the reconstructed breast which he wants to wait to see if my body absorbs it, but I am not thinking it will not happen so he will have to surgically shave it down, uck.

    Thank so much. 

  • shelly56
    shelly56 Member Posts: 142
    edited February 2011

    Dannade:  What date did you have the DIEP?  I had mine Jan. 5th and yes, I still have a noticeable tummy which I hope will flatten out some.  Don't be misled by anyone's idea of the DIEP.  The TRAM is a different procedure, where muscle is not cut and is tunneled up through the chest to form a breast.  My PS said he might have to take a thumbnail size of muscle but after it was over, he took no muscle whatsoever.  I had radiation on one side prior to the DIEP, so that side is definitely a problem and I have to go back in about 2 months to see what our next plan of attack will be.  I hope it turns out positively for you. 

    On another note, my tissues had to be "rescucitated" on the operating table -- did anyone else have that happen?  When I found that out, I was so skeptical about the whole thing.  Another thing that bothered me was taking arteries from under both arms to get a better blood supply.  My arteries were so very tiny according to the CT scan.  And they even said if those weren't sufficient, they could take a large vein from my leg.  That was out definitely not something I would agree to and said that if that was the case, to close me up and forget the surgery.  

    I belive there is much they can do nowadays, but I just maybe didn't have adequate tissue to work with. 

  • dannade
    dannade Member Posts: 17
    edited February 2011

    Shelly,  Thanks for your input.  Yes, I agree, TRAM flap procedure is a whole different thing; I know one woman who specifically had that and was in a nursing home rehab for 3 weeks after surgery.  My doc did say if he had to take a thumb size pc of muscle to preserve the vessel, he would and he did and he told me right away.  I too had radiation on the side reconstructed with the DIEP flap (Dec. 7, 2010).  I already had scar tissue and swelling problems with this side for over a year and was in arm therapy all year.  PS released most of the scar tissue but most is back already.  And, it is very swollen and getting hard on top of the flap (my own skin) and pulling tugging on me.  PS says he will probably need to go in and release some tissue or shave it or some godawful thing if it does not go down by itself in the next few months.  He does not want to do anything until things settle down.  I am imagining it is stitched under there somewhere to give the breast mound lift and shape, but my body does not like it at all.  I am looking forward to a little bit flatter stomach and a breast that does not swell and hurt.  Good healing to us both!

  • mscal02
    mscal02 Member Posts: 167
    edited February 2011

    Shelly: How long after radiation did you have your DIEP?

  • dannade
    dannade Member Posts: 17
    edited February 2011

    mscal02 - that's a good question.  I'll answer for me, but would like to know of others who had radiation.  What was the end of radiation to the DIEP flap surgery?  My radiation ended in March 2010 and surgery was in December 2010.  My original PS wanted to wait one full year, but she did not do DIEP so I went elsewhere (Loyola University Medical Center) who said my skin was soft and healed enough.  But, he did say, radiation is not out of the body for a very long time, sometimes years.

  • mscal02
    mscal02 Member Posts: 167
    edited February 2011

    I completed radiation in April 2010 and I am looking at DIEP in April this year. My PS says that is enough time .

  • CandDsMom
    CandDsMom Member Posts: 68
    edited February 2011

    If any muscle was taken at all (even a postage stamp sized piece) the procedure is a "muscle sparing free TRAM", not a DIEP.



    This is not to be confused with Pedicled TRAM where the entire rectus muscle is taken and flipped up to the chest.



    A DIEP by definition is muscle sparing - so no muscle used at all!



    If a PS tells you that you had a DIEP with a piece of muscle taken, they are not telling you the truth - it is a free TRAM. I have had a free TRAM myself - and I am 100% sure of the difference between Free TRAM and DIEP.



    With regards to the tummy bloating, mine went away after my 2nd PS did an abdominal plication (sewed the 2 rectus muscles together).

  • shelly56
    shelly56 Member Posts: 142
    edited March 2011

    mscal102:  Hi - as to how long I waited from radiation until the DIEP, was 15 months exactly.  Some women even wait 10 years but my PS for my mastectomies said even 3 months was enuf time to wait but I disagree.  I think more like 6 month to at least one year is good.  I hope you have great results. 

  • shelly56
    shelly56 Member Posts: 142
    edited March 2011

    Dannade:  I too have occasional firmness or hard spots on the top of my breasts and when I asked the doc about it he said that is normal and when I felt tugging or sharp pains if I made a stretch movement, he said that's due to the stitches on the "inside" of my chest.  I feel like the bride of Frankenstein still at this point, with all the scarring, but it will get better -- I hope. 

  • thoughts5000
    thoughts5000 Member Posts: 2
    edited March 2011

    I had a pedicle tram but had a lot of problems with bloating. My gastroenterologist recommended yeast pills, and the problem improved very quickly. You can buy them over the counter. The bacteria in your gut can really get unbalanced with all the antibiotics you get to prevent infection.

  • dannade
    dannade Member Posts: 17
    edited March 2011

    CanDsmom - I have had this discussion with my PS about him taking a small pc. of muscle and it not being a DIEP flap procedure.  He totally disagrees and had told me upfront he may have to take a small pc. of muscle but it would still be considered a DIEP procedure.  I think these PS's each have a certain way of doing this procedure and this is his to protect the vessel.  In any case, what was done is done.  Regarding the tummy bloating, I didn't even know you could have a procedure called abdominal plication.  I'm going to look that up.  Thanks for that info.

  • dannade
    dannade Member Posts: 17
    edited March 2011

    Shelly56 - This firmness and hard spot is driving me crazy.  I feel like something is sewn inside of me and it is pulling and pulling and not supposed to be there.  I hope it does not stay this way forever - my breast is so full looking on top and the other side is an implant and they seem so far apart because of the left swollen one pulling to the left.  Horrible tightness under arm.  Yes, I look like I was knifed in some sort of a horror film.  The side that has the implant scar is hardly visible, but it was never so intense looking as this I have now and the tummy stitches, yikes.  I want to enjoy having cancer free breasts, so I'm impatient to have it all settle down which I understand is a common wish.  Let's hope we heal fast before summer!

  • CandDsMom
    CandDsMom Member Posts: 68
    edited March 2011

    Hi Dannade-

    Not to belabor the point (the only reason I am bringing this up again is because there is a lot of misinformation about DIEP/free TRAM/pedicled TRAM out there and I don't want someone researching their options to not have the full information.  From the BCO website:

     http://www.breastcancer.org/treatment/surgery/reconstruction/types/diep.jsp

    DIEP stands for deep inferior epigastric perforator. This is the name of the main blood vessel that runs through the tissue that will be used to reconstruct the breast. In DIEP flap reconstruction, only skin, fat, and blood vessels are removed from the lower belly (the abdomen between the waist and hips). No muscle is removed. This is one of the main differences between the DIEP flap and the TRAM flap--the TRAM flap procedure removes muscle (along with fat, skin and blood vessels) and the DIEP procedure does not.

    Here are a couple more sites with more info:

    http://www.drmarga.com/DIEP.html

    http://www.drmarga.com/free.html

    http://www.breastcenter.com/procedures/diepflap.php

    I did not have my stage 1 done by any of these docs - (it was bungled by my local PS). But, in the interest of full disclosure, I did end up traveling to NOLA to get it fixed up and the abdominal plication was done there. I have some pics on timtam of the difference in the abdomen pre and post plication. It was quite painful I have to say, but definitely worth it.  Good luck with everything.

  • swimangel72
    swimangel72 Member Posts: 142
    edited March 2011

    I also ended up with a muscle-sparing free tram, when I was first promised a "Diep". It wasn't until I got a hold of my operative reports where I read that a "1 inch cuff of muscle was removed" that I realized what happened to me. Doctors can call it what they want - but calling it a Grapefruit don't make it an Orange........read the info on the following link:

    http://www.diepbreastreconstruction.org/

    I ended up with a LOT of bloating after my surgery - my original PS kept calling it "post surgical swelling". Then I ended up with a large abdominal hernia - which he denied, saying instead that "maybe you gained weight" (I had lost weight.) Thanks to my PCP, who ordered a Cat scan, the hernia was discovered. I had to find a special surgeon and new plastic surgeon to repair my abdomen - they used a biologic mesh called Strattice - and also they performed muscle plication. My stomach is very flat now - but it remains very numb and tight. And I still experience bloating......I blame this on INTERNAL fat........sure I lost abdominal fat during my free-tram........but it does nothing with internal fat. Internal fat around your organs will press outward against your muscle causing pressure.........even eating a small meal of pasta or potatoes causes me to feel this pressure increase. I've had to really reduce all carbs - and make my meals much smaller to help. I think of it this way - look at the photos of women after their tram surgeries........we all have LESS stomach - the surface area of the exterior of our stomachs is MUCH less.........but internally we are the same (or even larger if any of us have gained weight).........thus the feeling of bloating.

    Hope this info helps.......one thing is certain............my body is TOTALLY changed since my BC dx and surgery in the Spring of 2008 - and not for the better. Frown

  • shelly56
    shelly56 Member Posts: 142
    edited March 2011

    Dannade - Amen to that sister !!  But I do go back in the summer or fall and plan our next surgery, which should be nothing compared to bilateral DIEP we did.  take it easy

    Shelly

  • dannade
    dannade Member Posts: 17
    edited March 2011

    swimangel - It is really starting to bother me how I feel and the PS says to be more patient - to wait till things settle down and to walk and watch what I eat.  He keeps insisting I had a DIEP procedure. Here's what the operative report says:  Procedure:  Recreation left mastectomy defect 14 x 16 cm and left breast reconstruction utilizing a left free microvascular deep inferior epigastric perforator flap.  

    Does not say TRAM anywhere but the 'left free' probably means muscle sparing fee tram.

    It then says in the description part:  Three good perforators were identified and these were incorporated into a perforator flap.  A small cuff of fascia was incised around the perforators and extgended down inferiorly for exposure of the vessels.   The anterior rectus sheath was reflected medially and laterally and then the dissection of the perforators down through the muscle was undertaken.  A small cuff of muscle was dissected and incorporated with the flap.......

    The muscle was reapproximated with a 2-0 Vicryl suture.......

    And I researched the DIEP procedure for months, read everything about it, researched doctors who did it.  Watched videos about it, etc.  My neighbor is a nurse who personally knows this doctor and his surgical nurse.  He is highly respected and has been doing vascular surgery, primarily Breast Reconstruction for years.  He did tell me upfront that he will not know whether he needs to remove a pc. of muscle till he is in there and wanted me to be aware of that.  When I questioned him about it last month, he said no, it wasn't a TRAM, that would take the whole muscle area.  But, what he didn't say it that it turned into a muscle sparing free tram.  

    When I go see him in 2 weeks, I need to be more firm about how awful I still feel with my tummy,maybe I have a hernia or something.  And the breast isn't doing too well either, very hard and sore and tugging on the upper part.

    I'm not too happy about it all.  That's for sure. 

  • dannade
    dannade Member Posts: 17
    edited March 2011

    candsmom - Read my reply to swimangel.  It sure looks like I had the free tram.  But, he did suture the muscle and I can feel both sides of it every once in awhile.  But the bloat remains and has even gotten worse the last week and lots of lower back pain (which I do get here and there, degenerative disc disease, but I have not had back pain for about 8 months and now it returns).  

    If I had known this would take this long and feel so uncomfortable, maybe I would have had some other procedure like latissimus flap and left the stomach alone. 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited March 2011

    There is definitely a lot of misinformation about the different flap procedures, but CandDsmom did a great job of clearing it up.  You have to remember that making an incision from hip to hip basically cuts the lymphatic system in half, and it takes time to regenerate and efficiently clear away the fluids that accumulate in your tissues. 

    I thought I'd also clear up the matter of an ileus.  This is when your intestines "go to sleep" after surgery and fail to wake up.  It causes impaction of fecal matter, and can be quite dangerous if not attended to.  I had this happen after my stage I DIEP, and after ten days of no bowel movements, ended up going to the ER.  They did a CT scan and discovered that I was impacted all the way to up under my ribs.  I had two soap suds enemas and that relieved the situation. I had tried everything possible at home including a Fleet enema, all to no avail.  I had read that constipation could be an issue and I had begun taking Colace a couple of days prior to surgery, drank warm prune juice in the hospital and lots of water, and yet this happened anyway.  My surgeon's failure to show the slightest concern was really disappointing.  My sister is a nurse, and if not for her, I don't think I would have gone to the hospital so soon---I'm very glad that I had her watching out for me!  I'm still amazed that I wasn't throwing up by the tenth day since I'd been eating full meals the entire time.

  • dannade
    dannade Member Posts: 17
    edited March 2011

    sandyinparadise:  Wow, you had a hard time with the constipation.  That is why I stopped taking the pain meds as soon as I could, used mineral oil and suppositories and a little manual help getting started (ick).  But you do what you got to do.  I am still taking mineral oil almost every other day.  If I don't stay regular, the tummy really bloats and is hard.  It's 3 months now, maybe I'm just taking lots of time to heal and mend.  My PS says all the women are impatient, but he say, he does not see them after about a year, so he guesses they do get better and go on with their lives.

  • swimangel72
    swimangel72 Member Posts: 142
    edited March 2011

    Dannade - I hope your PS will be a good listener and compassionate on your next visit....I will say it took me 5 months to feel "normal" after my first surgery - as normal as you can feel while living with a large abdominal incisional hernia - but as long as I wore a compression undergarment I was OK - walking, even lightly swimming - I felt much better after 5 months. I hope you will too.

  • seeay
    seeay Member Posts: 6
    edited March 2011

    dannade - like you my tummy is soooooooooo bloated! it is the absolute most uncomfortable part of this whole thing (and as you know everything is uncomfortable!) I thought maybe getting a lymphatic masseuse to work out the fluid would help, so I called  few today and they said they wont touch the torso! I don't know what to do - please let me know if you get any good advice. this is so uncomfortable! Thanks!

  • dannade
    dannade Member Posts: 17
    edited March 2011

    Seeay,  I'm over 3-1/2 months out and have not lost 1" on my waist.  Still bloated and numb with sore spots.  I am walking 3-4 times a week and was doing slight crunches which my doctor recommended, but then had some lower back pain (not related, I don't think, I've had this before). Back is better, so will start the crunch exercises again.  I see PS on Friday and maybe there is something else he can do for me.  The problem is that I did lose volume under belly button so the slacks that fit around my waist find their way down under my belly.  I do go to a lymph node physical therapist for my arm (to prevent lymphadema) and now to massage scar tissue.  She is now massaging my scars which includes the tummy; I know she would do lymph massage anywhere if your doctor writes a script.  So, keep trying to find a hospital near you with a good pt department and get your doc to write a script.  Keep in touch; I know I'm getting pretty tired of the tummy bloat.  Where did the flat tummy or sort of that I was led to believe I would have?  I know they said it wasn't a proper tummy tuck, but everyone seems to be enjoying a rather flat tummy.

  • Springtime
    Springtime Member Posts: 3,372
    edited March 2011

    I will second the 5 months to feel more normal. I would say 5 and a half for me.