My sons surgery story 1/27/2011

Discussion in 'Pilonidal Discussions' started by Texasmom, Jan 27, 2011.

  1. Texasmom

    Texasmom Helpful

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    My 16 year old son came to me a couple weeks with 2 holes right in his butt crack that was draining blood and pus, I had never seen anything like it. I found a colon rectal surgeon and he was able to get in us in the next day. Come to find out he had it for 2 months and just figured it would go away. ughh kids! Anyway he never really had any pain just the stinky messy drainage, dont know how I missed that but anyway... Doc immed said he had a pilonidal cyst and it had to be removed, he made it sound like no big deal, briefly explained the packing and made it sound like it would be a small ordeal. Yesterday morning he had his cyst extraction with the open wound healing..packing..all that fun stuff. The doc came out after and told us it was bigger then he thought and it went all the way down to the tail bone. About an hour 1/2 later we were headed home. He still has little pain so I guess we have been lucky so far BUT this morning when we went to change the packing I almost passed out when we removed the bandages, I was shocked at the size of this thing. The incision starts at the top of his butt crack and goes almost all the way down to the anus. When my husband pulled his cheeks apart he looked at me white as a ghost and I just couldnt believe they sent us home like this. I could see deep down inside and I dont see how he could possibly sit for any prolonged amount of time in the near future. (even though the doc seems he should be just fine to go back to school on Monday?? really?? I feel so bad for him, I am praying this heals soon and we can put it behind us ..no pun intended [​IMG]
     
  2. Hound

    Hound Very Helpful

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    Hi Texas Mom

    Really sorry to hear that your son has had such a rotten time. This is a terrible illness that has a massive effect on quality of life. It is good, though, to hear that he same to you and you went for some real help.

    When I learnt I had this illness I looked at all the treatments, and I must admit that seeing pictures and videos of open excision wounds made me feel sick, somehow it seems wrong as we expect hospitals to stitch us up and we are told that open wounds need closing right? But it does seem a fairly normal way of treating it. Living with an open wound in your butt is something lots of people are doing while they heal. It doesn't make it any less unpleasant of course.

    One thing I will say is keep him hydrated, give him plenty of protein as the body needs tonnes to build new tissue (whey protein shakes used by gym goers are perfect) and make sure he doesn't get back to normal activities too soon. As a family, take the medical advice and decide for yourselves what is best for his recovery.

    Sending my best wishes to all three of you, do let us know how his recovery progresses.
     
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  3. LLLady

    LLLady New Member

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    Hello
    I know what your going through but I knew it was gonna be bad.
    My 19 year son just had this done and from the sound of it your sons is the same as my sons was
    The Dr. said it was the biggest, deepest one he's seen in 20 years of doing this. My son had his Surgery on Dec 21 and he is almost completely
    healed and His Dr. can not believe it. (He is amazed) those are his own words, My secret to getting him healed quickly is Wheat grass 2 oz everyday after eating, I get it at Jamba Juice
    freshly made I wait, Get it without the orange and tell them you do not want it rinsed, Citrus hampers it's affect and rinsing, waters it down.
    Also my son was able to sit 3 days after Surgery. I started him on the wheat grass the day we left the Hospital.
    You see I used wheat grass on my Husband after he had colon resection Surgery due to Colon cancer and he almost has no scare and healed amazing fast also.
    Good luck to you n your son.
    If you need any help, Please contact me anytime.

    Lady
     
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  4. Texasmom

    Texasmom Helpful

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    Thank you for replying. It helps to know others are dealing with this. I too looked at some pretty grewsome pics and videos and I was so worried but my hubby told me "those are the rare cases so you shouldnt worry", also the doc was so passive about the whole thing I guess I just wasnt as informed and prepared to deal with this as I should have been. I will try the whey protein shakes, he already drinks those anyway so he's used to it. I will update on his progress for sure, I think it helps me. :)
     
  5. Texasmom

    Texasmom Helpful

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    Wow , that is so great to hear that he is almost healed! I will def try the wheat grass, sounds like it really helps. How long was your son out of commision? I just dont see how he could possibly go all day sitting down at school but what choice do we have? He cant be out for 2 months. I ended up calling the surgeon today and took him in to his office. I guess I just panicked but he said we did the packing fine. He just said to take it out in the shower which we didnt do. What makes it extra fun is my son is 6"3 and 215 pounds so this is no little boy. So far today he is doing fine. After I put him through another dr appt today I took him to get lunch. He wanted fries from here..drink from here..etc.. haha. I think I deserved it. He's been a champ..the kid hasnt complained one time through all of this. I will def contact you with questions..thank you so much!
     
  6. PiloPop

    PiloPop Helpful

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    Hi Texasmom,

    Sorry to hear that your son's doctor was so passive about the surgery. I haven't had surgery yet, but I decided almost immediately to seek a second opinion when the surgeon I saw on Monday flippantly told me that I 'just needed to have the excision surgery'. I was hoping to just have it lanced again and move on with my life but he refused. When I told the nurse and the doctor that I needed to think about it because I knew all about the extended recovery period, they thought I was crazy. Clearly I was in pain which is why I went to them in the first place but there was no way I was going to schedule a surgery right then and there without consulting my wife and employer first. They didn't give me any other options which just reinforced my resolve to look elsewhere.

    Thanks to the Doctor Hall of Fame section on this website, I was able to get an appointment for a consultation with an experienced colorectal surgeon nearby that is well versed in all of the different surgical treatment options available. Taking two weeks off of work unpaid (no short term disability insurance) is not an option for me right now and it still floors me how casual they were in discussing this surgery with me. If I hadn't done my research ahead of time, I would've agreed to surgery without even a basic understanding of what it is involved with the recovery. The medical establisment really needs to start doing a better job of explaining the recovery process since it's the family members who end up providing most of the postop care.

    I hope your son's recovery is going well and wish you and your family all of the best.
     
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  7. Texasmom

    Texasmom Helpful

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    looking back I def think I should have gotten a second opinion. I just didnt think it was goin to be this bad. I feel so guilty he has to go through this long recovery and maybe it could have been avoided, I dont know. He is doing as well as expected but is very worried about his first BM as am I. :(
     
  8. mom of 3

    mom of 3 Helpful

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    My 15 year old daughter dealt with this craziness the last six months of 2010. She was lanced in July, 1st open excision 8/11/10 (didn't heal right), and 2nd open excision 10/27/10. Her last excision was much larger than the first. When I read your story, it reminded me of how I felt when I saw my daughter's open wound for the first time after her 2nd surgery. I was really upset too, because it seemed so barbaric to me. My sister had this same surgery 32 years ago, and they stitched her up. I had never heard of leaving it open to heal from the bottom up; I was so upset that I told my husband that if she ends up having a 3rd surgery, that we were not doing this again. That was before I found this website and learned that this was normal. I'M SO THANKFUL FOR THIS SITE! I was always one to nearly pass out at the sight of blood. I was the one who changed her packing every day twice a day for both of her surgeries, and I now can say that it doesn't bother me. I was unsure if I could even do it, but I knew it was just something I had to do. You do whatever you have to do when it comes to you kids.

    Anyway, I know you're concerned about him going back to school and sitting all day. Just so you have something to compare to my daughter's wound was about 3.50"long 2.50"deep 2.25"wide - it was down to the bone. It does sound like you son's might be bigger which could make a difference. Her surgery was on a Wednesday, and she went back to school the following Tues. I'm not kidding when I say that she never missed a beat. She was in marching band, and she was able to continue with that. Actually, between both surgeries she ended up dealing with an open wound the whole marching band season. I know band doesn't sound too hard, but she had practice 3 days a week in the hot sun and games on Fridays, and band competitions on Saturdays. She did not complain one bit. I asked her about sitting in class all day at school, and she said she was just fine. I will say though, she stayed on her pain pills in the beginning, which I would say made a difference for her getting through the day at school.

    Another thing we did for about the first week after her surgery is we learned quickly to have her take a pain pill before we changed her packing. It seemed to help it not hurt so bad when we changed it.

    After her 2nd surgery, it took her 9 wks. and 2 days for her wound to totally close, which was 12/31/10. I have to admit, it was wonderful starting a new year with that behind us. I know all you want is for this to hurry and heal. We hate to see our kids go through such an ordeal, but I have to tell you she handled this whole thing much better than I did. She seriously was pretty nonchalant about the whole thing. As for me, it was constantly at the forefront of my mind and a lot of worrying in the beginning until I finally realized I just needed to put it in God's hands (which is what I should have done at the beginning).

    To help with BMs, she took a stool softener; she never had trouble with this, so it must've helped. Also, I got her protein shakes to drink and protein bars to try and get in extra protein since this was important for her healing process.

    Sorry this was lengthy, but I hope it's helpful.
     
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  9. Texasmom

    Texasmom Helpful

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    I asked the dr about stool softeners and he was like "no, he will be fine" ?? On friday I will get him something for sure ..also going to try the protein shakes and another poster suggested Wheat Grass shots so Im going to try that too. I so appreciate all of the kind words and advice Im getting here, it is helping me so much to deal with this and be able to re-assure my son that all will be ok. I also have a 13 year old daughter and just got home from her basketball game to find him in alot of pain :( My husband doesnt want to give him a lot of drugs even though they prescribed him plenty and thats what its for! He said one vicodan should be enough but I think for his size he really needs two. I totally agree , you do what you have to do for your kids and Im sure after the shock wears off we will be able to deal with this better. Thats awesome she healed so quickly! It gives me some relief to hear these stories of wounds as big of not bigger then his and they healed fine. Thank you for sharing your story, I will keep everyone posted on his progess.
     
  10. LLLady

    LLLady New Member

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    My son's Surgery site is very close to his anus and
    he was afraid of going to the bathroom, It was a little painful the first time he did but everything was fine,
    I just made sure he ate some fruits and veggies everyday which he is not big on.
    As for sitting My son's Doctor recommend he set on something soft for the first few weeks
    since that area tends to spread on a hard surface and makes for longer healing.
    Also I don't know if your Dr has advised you to shave the area near his Surgery site form top to bottom as close as you get ( Carefully )
    Which I have been doing for my son, The Dr. wants us to keep that area free from hair, I will see if he will let me take a picture of his Surgery site.
    I'm here you all, I'm glad I can help <3
     
  11. Texasmom

    Texasmom Helpful

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    I mentioned to my son about takin a pic, he looked at me like I was out of my mind and said NO WAY! I cant blame him but I just thought if I could share this journey with someone else maybe it could better prepare them for what is coming. My husband came up with the idea today that we could take one of those backpacks..the ones with the string straps and fill it with pillow stuffing then he could just carry his pillow around like a regular backpack at school. Or find a small pillow to fit in there. We did shave his butt when we got home, which I had no idea was so hairy omg.
     
  12. LLLady

    LLLady New Member

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    That sounds like a good idea with the backpack[​IMG]
    Haha! When I asked my son If I could take a picture after his Surgery,
    He was like No way but now that it's almost healed
    Hes like go ahead just don't show my face, I will get one tomorrow
     
  13. Texasmom

    Texasmom Helpful

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    ya probably 24 hours after his surgery was not the best time to ask haha. My husband and I are watching a movie and they showed the girls bare bottem...he looked at me and said its just not the same anymore...at least we can try to find some humor :)
     
  14. mom of 3

    mom of 3 Helpful

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    After my daughter's 2nd surgery I wanted to keep track of her healing process by taking pictures of her wound. It was so large, and I didn't know how long this journey was going to be, but I wanted to have something to look at to see how far she had come. I started a file with all the insurance papers and doctor bills, and I thought it would be a good idea to keep the pictures in there. Keep in mind we have a digital camera, so I printed them out at our home, so no one else had to see the pics.

    Believe me, my daughter was like your son; she didn't want me taking pics of her rearend, but I assured her they were for our eyes only. She agreed to let me, so about every week to ten days I took a picture of her wound. Also, I wanted her to see how things were coming along, but she wouldn't look at the pics until she healed completely.

    Just a thought.
     
  15. Texasmom

    Texasmom Helpful

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    Thats true, I hadnt thought of it that way. He has no idea how bad it really is and that would be a good way to keep track of the healing. I will see if I can get him on board with it.
     
  16. Texasmom

    Texasmom Helpful

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    Well we have changed the packing a few more times and I think we are getting a little more used to it although I have not actually done it yet but I "assisted" I think my time is coming soon though. Hubby is getting more comfortable with it and of course my son is really being so brave. 48 hours post-op and he is starting to be in some pain. I gave him 2 vicodan today and that seemed to help. He has been drinking lots of water but he still has not had a BM yet. Im not sure if hes just scared or what but I wonder if thats normal? He's really worried about going to school on Monday and how he will be able to bare it all day. I went to the school today and talked to the counselor, she is going to talk to his teachers in case he needs to leave suddenly or has a problem. I feel so bad he hs to deal with this , being 16 is hard enough :(
     
  17. Texasmom

    Texasmom Helpful

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    Im so frustrated! Everyone seems to think he should be fine to go to school now. He is still taking pain killers every 6 hours and struggles to sit for a short period of time, how the heck would be able to sit all day in a wood chair?? He's no baby and hardly ever complains, he seems to have a high tolerance for pain so if he is saying it hurts too much then I'm sure it does. It hasnt even been a week and everyone is acting like he should be fine now :(
     
  18. vballGuy

    vballGuy New Member

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    If the excision did in fact go all the way down to the tailbone, there is no way in my mind that your son would be completely pain-free after only a few days. I had a minor open excision (according to my surgeon), and I didn't feel ok to start sitting again until approximately 2 weeks after the surgery. It took about a month to feel "back to normal", and approximately 2 months to be completely healed. I would let your son take it easy until he feels well enough to go back to school.

    Best of luck.
     
  19. Texasmom

    Texasmom Helpful

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    The doc said after the surgery it was much larger then what he had thought and his words were it went almost to the bone. I beleive it because I see it everyday..yuck! Today is the worst day so far for pain and today was the day everyone wanted him to go back. He got me up at 5am for more pain meds and I knew there was no way he could go and I doubt he will be able to go the rest of the week at least. I think Im going to call the school and doc and tell them I am going to keep him home the rest of the week.
     
  20. mom of 3

    mom of 3 Helpful

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    I know I told you in my earlier post how quickly my daughter went back to school after her surgery, but that might not be for everyone. From what I can tell by reading on this forum, that was rather quickly (six days). Most people on here take at least 2-3 weeks and some even longer before they go back to work/school. As I said before, she was still on pain meds when she went bacbut she said she was doing fine. I worried myself about her sitting all day (especially in a hard seat), and if she would have complained one bit, I would have kept her home. My daughter's surgery also went clear to her tailbone, so I was very surprised how quickly she was able to return. Every person's body is different, and you know your sone better than anyone else. I'm sure he'll let you know when he thinks he can give it a try. I definitely wouldn't push it!

    Surely his teachers are willing to work with him by doing as much work at home as he feels up to.

    Keep us posted on how he's doing. I've said some prayers for him, but I've also prayed for you since I can relate to how you feel. All I longed for was the day for her wound to completely close. Of course, since it was her 2nd surgery, I stressed over whether it was going to heal right this time. I know it doesn't feel like it right now, but you will get through this, and life will return to normal.
     

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