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Seeking DIEP recovery stories

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  • Dlphnsgl
    Dlphnsgl Member Posts: 11
    edited August 2021
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    Hi Crystal, I just had DMX w/DIEP flap on 7/6. I haven't had LE (fingers crossed I don't get it either), but I am feeling the same fullness you are experiencing. As whatjusthappened stated, I too have been doing some massaging to reduce a few hard knots in some of the breasts near the breast/sternum area which is also still painful for me. The PS said this is normal due to the extensive surgery they do but it's been some of my most discomfort. It's getting better each day and I just started PT last week which seemed to aggravate it more again but I know it will hopefully help reduce/eliminate these as well. I've had to wear compression shorts/pants as well as bra since my surgery. My PS stated he wanted me to wear 4-6 weeks post surgery. I've been able to take the bra off at night but the shorts I've had to keep on 24/7. I wasn't used to wearing anything but undies and light t-shirt during the night so that's been a lil awkward. Like whatjusthappened also said she experienced I also have some of the sensations like I need to pull down my bra too.

    Digezy how are you doing? It's been a month for you now. How are you healing? My son ended up staying with me 2 days after I got home but since then I've been on my own. It was tough at times but I'm doing well considering. I just listened to my body. If was/am tired...I rested. I don't push myself and ended up putting everything I needed at counter level which helped post surgery. I put everything back last week (3 wks post).

    For others that have had this type of surgery, one place that's also felt foreign and some strange pains is around my middle belly on both sides of my new belly button. How long does this last? It's been still numb there but at one point I had some really deep pains, esp on right side because I favor that side getting in/out of chairs and bed. I've been trying to do better at sleeping on the left side of the bed and in a recliner which has helped. I'm also a side sleeper so sleeping on my back has been causing me to have back pains. I use a heating pad for it as well as Ibuprofen which seems to help a lot. Can't wait to sleep on my side again!! Soon!

    4 weeks post surgery now so each day is better and better. I will be having 2nd phase surgery in 3-6 months depending on my healing where they will 'fine tune' the symmetry. I had nipple sparing with my DIEP flap so hopefully if they maintain healthy recovery, I won't need any additional surgeries.

    Wishing you all the best,

    ~Teri

  • sharon0706
    sharon0706 Member Posts: 80
    edited August 2021
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    Hi all. I am almost eight weeks out from DIEP. I am doing pretty well, I think. Starting to get a sense of what my breasts look like without all the swelling. Trying to be disciplined about doing PT at home.

    My phase 2 is scheduled for 12/28, which is only because I have hit my insurance deductible for the year and wanted to get it done in 2021. Otherwise, I think I would wait a little longer to give my body some time to recover from all of this.

    Happy to say that I have had no complications. One breast is at least one cup size smaller. I don't mind the smaller part, but I would like them to be a little more symmetrical. My new favorite bra is from soma -- enbliss wireless. I'm still wearing soft pull-on pants. I have dog ears on both hips, one bigger than the other. The skin is sensitive.

    I scheduled the oophorectomy to be at the same time as Phase 2.

    My breasts are still pretty hard and sometimes cool to the touch -- but they *both* are. Sometimes in the middle of the night when anxiety is peaking I worry that it's necrosis. But then I try to tell myself that they both pretty much feel the same, and that the chances of necrosis happening in the same way in both breasts seems unlikely.

    I must admit I do like the flatter stomach! I've been trying to be very thoughtful about what I put in my mouth so I can keep the belly flat. Not always easy. Ride now I am trying to ride out a serious sugar craving. I'm still wearing a binder when I go for walks, and sometimes at the end of the day.

    My PS told me to massage the abdominal incision with oil for 15 minutes three times a day. I'd say I probably do it twice a day.

    Almost one year since my diagnosis. I am still taking ativan to sleep at night and trying not to give myself a hard time about it.

    take care,

    Sharon

  • lrobbins17
    lrobbins17 Member Posts: 6
    edited August 2021
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    I’m scheduled for diep flap surgery on 9/1. I live alone and my son lives overseas and my daughter lives serval hours drive and has a son with autism so neither can really help me. I have a friend dropping me off at the hospital then my daughter will pick me up upon my release and bring me home. I’m sad I won’t have anyone at the hospital to visit but will get over it. My question is do I need anyone with me after I get home from the hospital? I plan to have everything set up as much as possible.

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited August 2021
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    lrobbins17, I'm so sorry that you will have to go through the recovery period without help. I think it's doable depending on how your surgery goes, whether or not there are complications, etc. Most insurance companies will pay for a home health nurse to help with drains, check incisions, etc. Have you checked into that?

    You have the right idea about setting up everything ahead of time. Nothing you have to reach for. The tasks I needed help with initially were going to the bathroom and showering, so if you can get a shower seat, walker, etc. that might help. There are some others on this thread who have gone through recovery with little help, and hopefully they will chime in with some good tips.

    Wishing you a successful surgery and recovery!

  • lrobbins17
    lrobbins17 Member Posts: 6
    edited August 2021
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    Thank you! The posts have been very helpful.

  • abigailj
    abigailj Member Posts: 101
    edited August 2021
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    Hi Lrobbins17 - I stayed in hospital 5 days (I was 62, not very fit at the time I had nipple sparing BMX with immediate DIEP recon). In addition to speaking with the social worker to maximize the home care you can get, along with assistance devices like walker, etc as I described in earlier posts, I encourage you to stay as long as possible in hospital as you can, provided COVID isn’t too bad in your area. I also recommend good quality, healthy frozen meals if possible (I used BistroMD - not cheap but worth it to me as much husband doesn’t cook). Although he was available to help I really did not need much assistance once I was home, got around with walker ok and spent most of my time in my recliner. If you don’t have a recliner (electric one would be ideal) consider renting one.

    Hope all goes well and you heal quickly!

    Abigai

  • lrobbins17
    lrobbins17 Member Posts: 6
    edited August 2021
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    Thank you so much for the info. I going to ask my doctor to keep me as long as possible in the hospital. I will look into the chair and get a walker. We are the same age so it great to hear from you.

  • Limonia
    Limonia Member Posts: 5
    edited August 2021
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    Hi,


    tomorrow will be a week that I will have been discharged from hospital. my surgery was on the previous monday, and I was discharged Friday. I had TE removal (multiple years after having them in!) and DIEP reconstruction. That definitely was a proper amt of time for me to be in the hospital - I would not have felt comfortable being discharged earlier. Basically until Tuesday 6 PM they checked all my vitals and with dopler every hour, then after that, every 4 hours. ongoing meds, etc, had me up walking around nursing station. do try to stay as long as possible. I did not overcook for myself in advance as I find that stressful. however i did make and freeze bone broth and a lentil stew (multiple) which I froze. everything else can be ordered in - groceries, etc. Try to arrange nursecare to check the drains before you leave and arrange homecare - they can help you with some personal care, laundry, etc...if you have people around you who ask if you need help - say yes and give them a list of what you need :-)

  • waves2stars
    waves2stars Member Posts: 128
    edited August 2021
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    So what are the exact types of thing you need help with the first week? Like many said showering or using the toilet. Is that because of sitting then getting up to stand? Are there other reasons? Would having handicap bathroom bars help, or not really

  • trishyla
    trishyla Member Posts: 698
    edited August 2021
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    No on the bars, Wavestostars. You can't use your arms at all. Or your abdominal muscles. So you need help getting up, sitting or laying down and reaching for things.

    The only large muscles you can use at that point are your thighs. I tell people to build them up as much as possible before surgery. It really does help, especially when getting off the toilet.

    You also need someone to help you strip the drains. It's too awkward to do yourself with such limited use of your arms.

    There's a couple of threads specifically for those who had DIEP flap. Great info on them.

    Glad to hear you're doing so well, Limonia. It's a big surgery, but totally worth it. I'd do it again in a heartbeat.

    Trish

  • sharon0706
    sharon0706 Member Posts: 80
    edited August 2021
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    Welcome Waves2Stars! So sorry that you are going through this. I am 10 weeks post-op and while it is a big recovery, I had no complications and have no regrets.

    As you probably know, it's nice to have food prepped in the first week, and to have someone else do chores while you just stay still and heal.

    You may have already heard that it's helpful to get a grabber to pick things up.

    I did my own drains. It's not fun but it's temporary. The best tip I got from a visiting nurse is to do them while sitting down.

    Take care and good luck,
    Sharon
  • Dlphnsgl
    Dlphnsgl Member Posts: 11
    edited September 2021
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    Hi LRobbins. As Abigai & Limonia suggested...stay in the hospital as long as you can! Limonia described a lot of post surgery in hospital stuff you go thru...it's a lot! Plus when you get home you have to care for your drains and I had to give myself shots for 5 days to ensure no blood clot risks. You're so tired and whoozy due to the pain and pain meds. My son had to work late nights so I was only able to have him with me for about a day and 1/2 so I made the doctor push out my hospital day for another full day. I was in for 3 days. They wanted to send me home later the next day because I had nerve blocks. I was not comfortable doing that. I had my son get me a shower chair but I didn't have a walker. I really wanted it but I did ok without it. I have an office chair with wheels with a high back that I used that the 1st week after I got home which worked great cuz if I got too sore or tired I'd just sit in it. Caution though because of the wheels!! For me the worse parts were the drains. Now it's PT!!

    Waves2Stars - I did my own drains ok, it was a lil rough but got used to it. You don't want to reach higher than chest level so put everything at your waist level. Getting on/off the toilet was a struggle so I used my desk chair as noted above. It worked really well because I didn't have a lot of space in front of the toilet so it was stable & then once I was up I could use it as a guide.

    Sharon0706 - Like you I'm about 8 weeks out from my DIEP as well. I'm same spot with insurance met as well but I'm going to hold off getting refinement 2nd surgery. I'm just not ready to handle another surgery this year. You're a brave one! I have a few hard spots too but PT is getting them smaller & smaller due to the massaging she does. But I tell ya...I'm SO over having my breasts touched & out!! ;-) They just feel so foreign though and probably will for awhile. They are pretty close to same size but not exactly and they were able to save my nipples and those are low on the breasts. I'll just be sooooo happy to sleep on my sides again!! I'm getting there but not fully yet!

    Best of luck to you all & speedy recoveries!

    ~Dlphnsgl

  • Joanapple
    Joanapple Member Posts: 1
    edited September 2021
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    Ihad a DIEP flap surgery on July 14th to correct a failed mastectomy implant which was done 8 years ago.

    Fortunately I'm not dealing with cancer, but I've had several unexpected, distressing complications from the surgery - an infection which required removal of my tissue expander and surgery to remove a large hematoma. And just yesterday, after a week of whitish/yellowish/brownish discharge, my surgeon said I have fat necrosis which is leaking through the stitches. He opened a section of the stitches and squeezed some of the fat out. I'm now left with an open wound which I need to pack 3 times a day for several weeks. I'm very worried.

    My doctor is at Stanford, a well respected institution, and I'm shocked that I'm having all these problems. I don't smoke and was in excellent physical shape going into the surgery, although I did have radiation which I know can be problematic

    Also my doctor said I can resume all physical activities including heavy cardio, weights, yoga, etc. I'm an exercise junkie and as much as I need to get back to my routine, it seems odd to sweat and exercise at high intensity with an open wound.

    Has anyone else had a similar experience? And what would you do regarding exercise?

    Any input would be much appreciated.

  • OCDAmy
    OCDAmy Member Posts: 289
    edited September 2021
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    I took care of the drains myself. I was able to get up from the toilet by myself as well. You’ll need help with meals, washing your hair (and drying). No lifting or bending over. Sleeping and resting in a power recliner or adjustable bed makes getting up and down much easier. Best of luck.

  • waves2stars
    waves2stars Member Posts: 128
    edited September 2021
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    Any updates suggestions on what types or brands of girdles to wear during recovery? I have the binder, but PS said I could switch to girdle when I’m ready. Is spankx not enough pressure? Is this for waist “training” or compression to keep fluids from accumulating?

    Also, sometimes I read to get a bra for “shaping.” Does that imply I could cause my new foob to be flat from athletic bras

  • abigailj
    abigailj Member Posts: 101
    edited September 2021
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    Hi Wave2Stars - I switched from the hellish binder to jockey brand ‘shapewear’ - cheaper than name brand spanx and sufficient compression. My PS said firm support but not ultra tight. I normally take a medium in clothes sized small/medium/large and bought size large for this girdle-like thing. All worked out fine. For bra, I worse a jockey cotton sports bra with gauze at the incision lines under recon breasts but went back my pre-surgery Bali wire free regular bras after around 4 months as I recall.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited September 2021
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    My sister had DIEP flap surgery last Oct. She was in surgery 15 hours which was alarming to us, but her recovery was very manageable. Her surgeon gave her a nerve blocker so she had minimal post op pain and managed it w OTC pain meds.She was pretty tired for about 2 weeks but found this recovery much easier than post mastectomy pain. She has done well with no real issues and will be having nipple tattooing after the new year (covid allowing).

  • GalleySlave
    GalleySlave Member Posts: 17
    edited October 2021
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    MaryJV- How long after your BMX did you have the first reconstruction surgery?

    If I understand you, you did not have to have tissue expanders, which appeals to me. But trying to recover from reconstruction and mastectomy surgeries simultaneously does not. So that’s why I am wondering about the delay.

    Thank you.

  • abigailj
    abigailj Member Posts: 101
    edited October 2021
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    hi Galleyslave - my BS recommended having the DIEP recon immediately for best aesthetic results - so I had a single, very long surgery that was a BMX with immediate DIEP recon and am very glad I did that. There is no need for tissue expanders or anything but a lot of women have some revision/refinement procedures. I had the extra flap skin removed 2-3 weeks after my initial surgery- I had skin/nipple sparing and everything survived so didn’t need that ‘insurance’ extra skin. I also had some wound healing complications at the abdominal incision (62, former smoker at the time) that required a 2nd outpatient procedure around 3 weeks. I’m finally getting around to having fat grafting to smooth out a small divot in mid-November. did not need rads or chemo so guidance could be different if that’s part of your treatment. Wishing you the best.


  • fhny2012
    fhny2012 Member Posts: 6
    edited October 2021
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    Hello -- I am about ten years out from my initial diagnosis (TNBN, did a bilateral mastectomy followed by TEs, chemo, implant reconstruction, radiation). Dealing with capsular contracture and discomfort and just over having something that feels "foreign" in my body. I had a consult with Dr. Lerman at Lenox Hill (NYC) who said I'm a good candidate for DIEP reconstruction. The idea of having no implants and just natural tissue sounds amazing, as does the idea of not needing future surgeries. I'm nervous about the recovery though -- am 40, non-smoker, fit-ish. Does anyone have any experience with this type of situation or Dr. Lerman? Thank you!

  • jrnj
    jrnj Member Posts: 407
    edited November 2021
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    Hi fhny2012, how is it going, have you scheduled surgery? The recovery was brutal, but I didn't have any complications. In the hospital for 6 days, and in bed another week. While I'm not thrilled with my flat pancakes, I am glad I don't have implants. I have no discomfort, they feel great. I'll probably go for phase 2 next year. I went with a local Dr. instead of a cancer center, which I am kind of regretting, but can't look back now. I was uncomfortable going into the city for surgery because my husband is not very supportive.

  • NicInTexas
    NicInTexas Member Posts: 18
    edited November 2021
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    Hi there,

    I just wanted to post my DIEP recovery details on this thread in hopes that it will help someone. I am 3 weeks and 1 day post-op. I had a BMX w/DIEP. This was required because I had BC 8 years ago and had radiation. The surgeons were of the opinion that an implant would likely fail on my radiated side. I can choose to have implants added once I'm healed if I need more volume, but I'm not excited by the thought of more surgery to be honest.

    Regarding the actual surgery, it was approximately 7 hours long. I used a PS who specializes in breast reconstruction/DIEP. I spent 4 days total in the hospital (3 in ICU to monitor the flaps). I am very happy I had everything done at once.

    My biggest hurdle through this whole process was dealing with the surgical drains. I went home with 6 drains and didn't have them removed until my 2 week appointment. They were driving me insane, and they limited by movement to the point where I thought it was impacting my recovery. Sad face. Anyhow, all 6 drains were removed at my 2 week visit, so I guess I was lucky. It was a painless process. I actually went back to work from home part time the next day, so to say removing the drains was freeing is an understatement.

    The flaps appear to be doing well, and the incision on my abdomen is healing great. I'm stuck in Spanx for the next month or so, but that's working for me right now.

    My right side is still a little tender - they took extra tissue there as they went back to ensure clear margins. They also took 2 lymph nodes, so that is adding to the tenderness.

    Regarding the items that were critical during my recovery (for anyone in the future reading this):
    • rinse free bath sponges (I almost didn't order these, but they were the most helpful thing while i had the drains in. I could 'bathe' without going through the painful process that was getting in the shower with 6 drains connected. I had never heard of them before, but they worked phenomenally. I ordered the medical grade ones from Amazon. LIFESAVER)
    • wedge pillow for under my legs (still sleeping with this to keep me from rolling over)
    • mastectomy robe with drain pockets (the regular 4 pocket versions can hold 6 drains even though it appears they can't)
    • Spanx for my abdominal incision (I am short-waisted, so the abdominal binder they give you was super-painful bumping into my breasts)
    • maxi-pads without wings to place between the abdominal incision and any clothing/binder/Spanx (what a Godsend - they don't stick!). I also cut one in half to place on top of my breast drain incisions as the day I came home from the hospital, the bra they put me in got stuck to the drain openings. Ouch. I just changed these daily.
    • Miralax and stool softener to take while I was on narcotics - you don't want to have to strain with a big abdominal incision
    • mastectomy pillow has been used every night - it's just so comfortable (I also used this for the ride home)
    • lap belt pillow to protect that incision when riding in a car (I'm still using this when I drive)
    • alcohol wipes and latex gloves for the drain processing
    • really big safety pins for those times when you need to pin your drains
    • button up pajamas and shirts for that period when you can't pull things over your head. I just kept rotating them through the wash. I mean my husband did. lol.


    I am very happy with the DIEP results so far. I didn't really have much choice, but my left side looks almost like it did before surgery. Right side will need a little work, but that will come later. I am better every day and am able to run errands without issue (avoiding lifting heavy things of course).


  • sondraf
    sondraf Member Posts: 1,611
    edited November 2021
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    I wanted to say thank you for the list! I never would have thought about those wash sponges and I am short waisted, so thanks for the Spanx heads up as well.

  • NicInTexas
    NicInTexas Member Posts: 18
    edited November 2021
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    SondraF - you are so welcome. Feel free to ask any specific questions you can think of. Based on your location, I assume you're British (maybe not). I go to England quite regularly but up North - my husband is a Geordie.
  • cathyAA
    cathyAA Member Posts: 3
    edited December 2021
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    I am 4 weeks post delayed bilateral diep surgery. My triceps were incredibly painful after the surgery, kind of numb, sore and stinging. They are slowly getting better. I was also told it was nerve damage that would repair itself. I think that is happening now.

  • dancemom
    dancemom Member Posts: 404
    edited December 2021
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    nicintexas, sondraf pointed me to your list. Just having the removal part first, but this info is great, I have some last min shopping to do! Thanks.

  • NicInTexas
    NicInTexas Member Posts: 18
    edited December 2021
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    Dancemom, sorry you had need of the list, but glad it is helpful. Just an update - I am still better every day. I'd say I'm 95% at 2 months out. The only recent bump in the road has been that one of my internal abdomen sutures got turned around and started poking out (ouch). Apparently, they won't dissolve if they are sticking out, so I had to have the PS remove it in his office (quickest procedure ever). I feel almost like my old self.

    Nic

  • sondraf
    sondraf Member Posts: 1,611
    edited December 2021
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    Chipping in that the Spanx high waisted panties things are AWESOME. I swap into those during the day as they are so comfortable - like wearing half a swimsuit - and my shorter, lighter (cheap) control undies for overnight (because dealing with spanx at a 2 am bathroom call isn't logistically feasible!). I'd highly recommend getting at least one pair of the Spanx, and then a set of cheapies for when you need to wash the others. However, I wouldn't try the Spanx until a few weeks out as (at least for me) there is a bit of contortion to get into them and I dont think I would have had the arm strength a few weeks ago to manage it. But I will have no problem wearing these through the day when I go back to work.

    Im 4.5 weeks out and still recovering nicely, though by the end of the day my back muscles are pretty tired, despite doing easy ab exercises. This feels like the recovery doldrums - do exercises, walk, massage scars (Im using Bio Oil) and while I think Im improving, there is still fatigue end of the day and sitting on a chair working on something for too long isn't really comfortable. So - guess Im about 70%?

  • PandaPoo
    PandaPoo Member Posts: 6
    edited January 2022
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    Hello! I just made the decision to have BMX and DIEP flap. I've been going back and forth and I finally feel like this is the absolute right decision. I'm 5'2, 125 lbs, very flat chested. I'm not a typical DIEP flap candidate but thanks for carrying twins to full term and my love for food I have accumulated enough in my belly for DIEP.

    I'm still waiting for my surgery date. Looks like it'll be early March (which is further out that I have hoped). Now I'm VERY anxious about the long surgery and the recovery. I haven't read through everything in this forum yet. But just wonder what I can do to prepare for the big surgery and the first couple weeks post op. Thank you everyone.

    How long was the surgery for those of you who have BMX and DIEP flap?

    If you have success stories, please share. If you have advice on avoiding complications, please share as well. Again, I'll read through previous posts in this forum, but just anxious to get this post out. THANK YOU!

  • PandaPoo
    PandaPoo Member Posts: 6
    edited January 2022
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    @NiclnTexas I'm so gald that you're healing nicely. And thanks for the lsit - that's so helpful. When did you start wearing Spanx? I assume you bought it before the surgery? Is there specific type of Spanx I should get? (Sorry if these are dumb questions - i'm quite clueless)

    Also thanks for listing Miralax and stool softerner. I think i should start taking it now as I'm always a bit constipated. Thanks again for sharing your experience. I feel very hopeful.