"I Was In Bed For 14 months Straight With This Disease" | Listen Up | ABC Science
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- Опубликовано: 18 окт 2022
- An ingrown hair at 19 changed Dylan’s life forever. Nine surgeries later, he’s healthier and wiser for the experience. Subscribe to ABC Science RUclips 👉 ab.co/2YFO4Go
BIG THANKS to Dylan @brothersandbooks for sharing his story.
Pilonidal sinus disease is a chronic skin infection that develops in the crease between the buttocks, near the tailbone. The infection is usually caused by ingrown or loose hairs which can become cysts and abscesses.
For more information on pilonidal sinus disease, visit: www.healthdirect.gov.au/pilon...
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I'm recovering from my 2nd surgery right now, and it's been a massive drag. They've pulled out enough hair to make a Furby, from inside my body. Ut was rubbing up against my spinal disc. Going to get laser hair removal from the area after this, but I was embarrassed to talk about this for years. Wishing everyone who has this a ton of luck and know you are not alone
How could you not feel it prior to forming a cyst, like when cleaning yourself etc? Don’t you see or feel a pimple or in-grown hairs first?
@@StrawberryNinjaNibbles He said "but I was embarrassed to talk about this for years", it's like having one of your balls getting bigger or hemorrhoids, many people have problems to talk about those problems to a doctor because of where the problem is.
@@StrawberryNinjaNibblesNo, it happens under the skin.
@@lindaarmstrongjackman9788 ingrown hairs technically happen “under the skin” as well, but you can still feel them and from what I’ve read this starts in a similar fashion
@@spacepirate9882 that makes more sense
I love the men in this comment section sharing their stories and having unity. Being vulnerable can be scary, but sharing these stories help others not feel so alone.
Very inspirational and I wish y'all all the best 💖
High five my fellow RUclips friend! Hopefully it helps someone who is ashamed to drop their pants and ask their doctor, “ why does my crack hurt, bleed or ooze into my boxers doc?”
Not just men that get it though.
Im a woman and i've had this disease since i was 17... 😢 I've had 3 surgeries, multiple multiple lance and drain operations.. it just keeps coming back and im so done with surgery, it has like a 6 month healing process and the wound care hurts SO MUCH..
@@lamppuu1I’m so sorry for this loss in your life. Wishing you peace, safety and love.❤
@@lamppuu1 I just had this surgery 2 weeks ago. I cannot stop screaming when the medic does the dressing on the wound. It is the worst pain I have ever experienced in my life. I am sorry to hear that you had to go through 3 such surgeries. I cannot even in my wildest dream think about getting this done to me ever again. I hope they find a better cure for this disease.
I don´t have this disease but, just one ingrown hair on my calf led to skin cancer. The ingrown hair became a scab that kept falling off and bleeding and never formed a scar. After a few years of observing this, I finally went to a skin specialist, who cut it out, sent it for a biopsy, and told me later after getting the result that it showed I had skin cancer, and that it was all removed now. My calf finally formed a scar from this procedure , and now it´s all good.
Get yourself organic rosehip seed oil and it will diminish the scar, harm free. Rosehip seed oil is nourishing source of vitamin c and shown to reduce burns and scar tissue.
Make sure you keep going back to Dermatologist for skin checks
Was the bleeding part important? I have a small patch of skin that grows on my lip that keeps reappearing.
@@Roddy556 I think so. The abnormal cancerous cells were not allowing the skin to heal naturally. For your own piece of mind, get it checked by a skin specialist.
My son has the same condition. He’s had two surgeries and is now considered cured. I pray others with this syndrome achieve similar success. 🇨🇦🖖🏻🇨🇦
why does this happen
@@thuggoe From what I’ve learned throughout my nursing career, Pilonidal cysts, as they’re known, form due to a “pocket” of loose skin at the lowest part of the spine, right above the cleft in your butt cheeks. Frequently there’s a hair in this pocket. Irritation within the malformation can results in a puss filled cyst. Best way to treat the condition is surgery. Draining the cyst seldom works. Excising it surgically works best, as the whole pocket formation and cyst, once gone, stays gone. Draining the pocket only helps temporarily. If you’ve got a persistent lesion, see your doc and get it removed. There’s a lining, the capsule, which must be removed or the whole thing recurs. That’s why my son needed two surgeries. Once the capsule was gone, his problems were over. Hope this is the info you need. 🇨🇦🖖🏻🇨🇦
Thank you for explaining the condition. From watching the video I thought his hair was growing inside his body and I was kind of horrified. Now it makes sense. @@Momcat_maggiefelinefan
@@Momcat_maggiefelinefanim a 19yars guy from France and i think i got that thing now, it is small and dont hurt that much but has the same reactions as people share over there.... How to say it i need my backs since i work with car and stay sat is a thing i do a loot, but im shy to tell people even though i now how i will end up if not treated right...
@@ankitchoudary7722ankit kon kon se surgery krwa chuke ho aap ? Kahan se ho ? Meri bhi surgery hui aur dobara hogya
My daughter has suffered 4 or 5 surgeries starting around 17. Shes now 20. Her mental health suffered from the deformities of the surgery thinking no one will want her. Breaks my heart! ❤ i spent 2 years constantly packing her wound daily and seeing her pain. She has been free from it for 6mths now. I pray it never comes back. It stole 2 years of her youth at a very impressionable age. Thankyou for putting this story out there.
Hi, im 14 years old, what did your daughter do to cope with the pilonidal cyst mine is severlu infected this is my 3rd time having it and its so painful
@SevenDyone I'm so sorry you are going through this. Have you been to the dr yet? Where are you from? My daughter requires surgery every time it gets to this point. But every case is different.
@@RainbowBabyMumma im from texas, im currently going to a doctor to get it removed i would do anything to get rid of the pain its horrible
@SevenDyone by the sounds of it you definitely need it drained and most likely surgery will be needed.. If its severely infected I hope they have you on strong antibotics and good pain relief. The pain won't go until the infection is cleaned out. However it's a long recover as it will need to heal from the inside out depending on how they want to deal with it. Let me know how you go
@@RainbowBabyMumma i have surgery tommorow and i am really scared. I feel like the surgery will hurt more than the cyst itself i feel like my toosh is going to look wierd 😕
I’m a woman, and I had Pilonidal cyst removed when I was only 17 (it was a very rapid onset inflammation, I had high fever and couldn’t walk, they operated on me 2 hours after diagnosis). My surgeon did and excellent job by removing the cyst and closing the tunnel, I healed very nicely and haven’t had a reoccurring surgery anymore, it’s been 20 years. The only problem is that because of the scar my bum is a bit uneven where the cheeks end 😅 but I’m not flashing it so it’s no biggie. I feel like this guy has an extreme case, I feel so bad for him. He should consider lasering hair off this area, it helps to put hair follicles to rest.
Also female, I had one removed when I was 12.
Same (also female), I had this when I was 16; took 2 operations to completely remove it. So horrible and painful. My sister then also had one at the age of 18. Was told by the doctors it affects people under 30 the most. After over 20 years, the scar from the operations I had has shrunk a lot and barely noticeable.
I’m a female and had one at 16 that I ignored weeping and pain for about 2 years until it fissured through into my rectum. I had one surgery and I’m now 40 and it hasn’t come back.
Same here. I had mine removed back in 2017. Hopefully never again!
@@jacqsprat4645 omg how painful
I'm in tears after watching this, I have this disease from 18 and now I'm 24. I had underwent couple of surgeries and multiple treatments to solve this, but it never goes away! I was a confident, good looking, great dancer back then. I've started to lose hope slowly. My body is not the same, my immune system isn't great, I had to put a surgical pad always near my lower back due to infection, bleeding, it smells badly, it hurts, It eventually will break you mentally and physically . But, I'm not giving up on this. My distraction is business. I have a knack of startups and I find myself happier only there. Good to see there are people who have understood themselves, didn't give up, motivated others and had set an example on this. I'm happy to have come across this. Lots of love to dylan and many out there who are suffering with this! stay healthy, never lose hope
Keep up the great work my friend you’ve got this ❤
I have this, too. I had what they called "Z-plasti" in 98, which is what I believe the guy in the video had, and got a massive infection. Then 11 more procedures until I found a surgeon who's friend, Dr Bascom, had perfected some new technique and had witnessed him doing it, so he tried it on me and it worked. I never had another one. I bet you could find information about it and a surgeon who could perform it with a Google search now. I'm really sorry you're having to deal with this.
Keep up you head I honestly had no idea this was a thing
I have this too. I had 12 or 13 procedures before I found someone who knew how to perform the "Bascom cleft lift". I never had another one. Please look into this. There was no "ultrasound guided simple technique" when I had it. I believe I was the first person to have this procedure performed by anyone other than Dr Bascom or his son. My surgeon was friends with him and had been in the OR and witnessed him performing it. I'm so lucky to have found him when I did. My recovery time was nothing. He also fixed some of the butchery the others left me with. I hope this helps you, man.
What kind of start up??!
I used to perform this surgery while underway in the Navy and doing the dressing changes every day, re-packing the wound, to allow the wound to heal from within and I’d cringe each time because I knew how painful the dressing change was. I hope you heal well and you’re so strong to be facing this with such a positive attitude!
I had surgery, left open to heal, almost 20 years ago (not caused by a hair....I be!ieve a call I had a few years earlier May have caused mine). My husband was shown how to pack and dress it. It didn't hurt at all. Minor discomfort. The tape caused me more pain by causing a reaction on my sensitive skin. That part felt like burns. Tried sensitive paper tape, but it didn't help, so no decided to just do no tape. It took 14 months to heal over.
Fall....a fall I had.
Back in the sixties there was a guy in my bootcamp company (we were all medical holds, me for glasses) there was a great bid guy that had thins problem, he would get puss and blood, on his skivvies, that caused us problems during inspection. I now have a better picture of what he was going trough.
I’m sorry for everyone dealing with this.
Were they expected to work? Don’t see the point of taking sailors with this to sea.
I've owned this for a decade now. In just the last 18 months, I've undergone 8 surgeries. This recent series of procedures has taken a significant toll on me, both mentally and physically. I was bedridden until May. Even though I still require daily dressings, I'm finally able to get out and socialize again. Feel for anyone going through the same - people not understanding why you have daily nurse visits and an open wound for months. Still find this one of the hardest things to explain.
To me it seems like surgery is not the best treatment option.. I've had 3 surgeries and it just keeps coming back.. I've had this problem for over a decade too. Im SURE there's other options than surgery, but no one seems to be looking into it. I have to work a desk job while having the infection because i am so tired of surgeries and the healing process. I have buttpain literally 24/7
If its hair, would IPL treatment help prevent it? IPL after numerous treatments can kill hair roots. That would prevent any hair from digging into the skin.
@@rumblefish9 yes if you did this as soon as hair started to show, you might stop it from starting! The issue is once it’s started, there seems to be no end to the operations to try and resolve it. I’m taking time off operations for now my body needs a break. I still have an open wound from my last operation in January. That’s the hardest part to explain, why they can just stitch it shut.
Hi Steven, happy new year. How are you doing now? Hope all is well.
I wonder if laser hair removal would help?
I saw images on Google, and this condition seems so incredibly painful. I have a friend who had colon-rectal cancer. She lost her rectum, colon, and all her reproductive organs including vagina. They were able to save her bladder. She has a stoma bag, and an incredible loving attitude. Much love to anyone that has survived a life changing surgery.
I have it and it is the absolute worst
What does her surgery have to do with this man’s condition?
@@cellphoneyay I'm genetically predisposed to get it. How are you holding up?
@@mfranck1everything it’s about getting back up and deal with your illness. The psychosocial part of it as he explained this is exactly what he needed to address. By reading about other peoples experiences and coping skills . You can’t change your health, heal your chronic illness but you can learn new coping skills that make it more bearable so you still experience positive feelings etc. Your comment is very rude, no empathy whatsoever
@@mfranck1why bother commenting? Booooo
The problem is that too many surgeons are still performing outdated procedures for this disease (i.e. closed and open midline excisions). In the case of closed excisions, the wound often falls apart due to shearing forces, and the deadspace underneath can lead to reinfection. In the case of open excisions, the wounds often fail to heal - or heal very slowly - because a deep, moist, underated, bacteria-ridden cleft is not a conducive environment to wound healing. The main cause of pilonidal disease is a deep natal cleft - that's why the procedures that change the contour of the natal cleft to make it more shallow and move the incision away from the midline (i.e. the Bascom cleft lift and Karydakis flap) have vastly superior outcomes. A Cochrane analysis (systematic review) found that closed excisions had a 60-70% failure/recurrence rate over 10-20 years, and open excisions had a 30-40% failure rate. In contrast, the Bascom cleft lift and Karydakis flap had a 2-3% recurrence rate. The problem, though, is that you have to find a surgeon that's experienced with the procedure, so it may require travelling. But honestly - try to avoid midline excisions if you can. If you don't have access to a surgeon that does the cleft lift, look into minimally invasive procedures like pit picking, GIPS, or EPSIT.
I had the open one nd it took 1 whole year for it to close, it was annoying but not painful. Hopefully it spent come back. You know why it happens ? Sitting for to long
I had an open excision. I’m 20 years post-op without recurrence. Feeling really lucky to have healed so well, but where I am from you’re hospitalized up until the moment you are completely healed, so I was having daily professional wound treatments with cleaning and ointments by a nurse for 2-3 weeks which I guess helped a lot. I left hospital with a very superficial wound (maybe a couple of mm deep). Not sure how US HCS works but probably they don’t keep you in for weeks to treat you until you’re healed for free.
I had cleft lift surgery 10 years ago, just got lucky while researching and found a doctor that performed this technique only an hour drive. One week recovery and no recurrences.
@@gwills24is the scar visible???
Thank you for sharing this
I had two surgeries for this in my late teens and the shame I felt around where the scarring was and how it affected my fitness was crushing. It took me over a decade to finally accept and talk about it without feeling the need to lie about where it was or what happened. I feel for anyone undergoing or having undergone the same procedures. Similarly it was self help and Buddhism that pulled me out of the dark hole this left me in.
Dylan, I can feel it that you are helping so many people by being this open about something no one wants to talk about. That is such important work, it can save a person’s sanity knowing they are not alone. Bravo! And the book project could be saving sanity/lives, too. I admire how you’ve made the absolute best of a massive challenge in your life by educating and helping others. 👏🏽 ❤️
I’m so sorry for everyone having to deal with this disease. Not only is it probably very difficult to talk about , but also to live day to day with. Thank you for sharing your experiences.
“Nobody wants to talk about butts…” I’ve also had numerous rectal surgeries, and he’s SO right lol :) Glad to see he’s doing well
Every healthcare working has a short list of diagnoses that they consider the “worst” and would hate to experience. Pilonidal sinus disease is at the top of mine, after caring for a patient with it years ago as a CNA. Painful, takes forever to heal, life-altering, and tends to recur.
Prayers for all who suffer from this!!
Love this dude! Because most guys wouldn’t do this! He truly IS EVERY SENSE OF THE WORD HERO! Not just for his service! But for what he is doing now! He coulda gave up! He shoulda gave up! But he didn’t! He turned victim into victor!! And I’m so proud of him! Hope he has many blessings in this life! Such an admirable soul! ❤
I have an emergency surgery in about five hours from now. I also have pilonidal cyst disease and this is my first time. It’s the most excruciating thing I’ve ever dealt with. I’m being put under anesthesia because my doctor couldn’t contemplate trying to drain my cysts or remove the infection with me awake. And then several months hopefully I’ll be going in for the final surgery to have the tunnels removed. My heart goes out to everybody who hast to deal with this because you wake up one day and you’re healthy and the next day you’re an excruciating pain, unable to walk, unable to sit, unable to drive unable to do daily activities.
I hope your surgery was successful and your recovery is going well. ❤ I have never heard of this before. YT is a gold mine of information.
Get laser hair removal. My son had it done and he never had another infection.
@@palace927laser hair removal or the laser surgery to get rid of it ?
My daughter had her first bout at 14 yrs old.She was such a great patient even though she was in agony. Over the years it kept coming back and overall she’s had 9 surgeries. Did you know it’s called Jeep drivers bottom, when in the wartimes the friction of the jeep going over rocky terrain. It’s prevalent in redheads and people with very strong curly hair. My daughter hasn’t had surgery in over ten years but she gets bouts, especially at stressful times. The smell is very strong and so embarrassing for the patient. Two of my sisters also had it, but after surgery it never came back for them. It’s a curse. I remember changing her dressing’s and I was crying for her, it was like a hatchet cut. Poor doll, she never complained, just got on with it. She’s a warrior.
Holding it all in is bad for physical and mental health. There have been studies on the immune system, other body systems, as well as mental health about this. ' It's better out than in.'
Also, if not complaining, other issues can be missed. My child is 'warrior' too. It has lead to late diagnosis of a degenerative disease. There is no cure. Slowing the progression is much more difficult now, and damage has been done. I wish my child had complained like typical children.
Your daughter probably needs to know you can cope if she vocalises what she really feels. It is not fair on her to always be worrying about you, and strong for you, and everyone else, when she is the one enduring the surgeries, etc.
Also, if she is shut down from expressing her pain, discomfort and concerns, she may be depressed.
It takes courage to live through emotions. Your daughter probably needs to feel safe and free to go through her process to help her best heal, and preferably with your support, rather than all she goes through alone not to upset you, and to make you proud of her. 😢
He’s so kind for sharing his story.
Thank you for sharing, Dylan! I have been dealing with this now for over a year. This helps me not feel ashamed of what it is, not feeling alone either.
look up "de-roofing", worked for me, read my post above good luck.
It took me 7 surgeries and a 13 inch scar to get healed. I wouldn't wish it on anyone. Thanks for sharing your story. Hang in there!
Going through this right now man! I hope I get cured… Thanks for making this video…
Hope get well brother
My Husband had this cyst but not reoccurring.
Do you get pains in your legs??
I Hope you get better ❤,🙏
Get laser hair removal. It worked for my son and he never got another infection.
I went thru this in last year of High School, it was the most painful thing I had ever gone through. And the embarrassment was real, I didn't talk to friends about it, and it has had a lasting effect on my life. Mine has never come back, and hope it never does, but good on you for posting this. Thanks,,,
My son had this when he was 19. We brain stormed with some medical personnel and we all agree he should get a laser hair removal in that area. It worked. He never had another infection.
I have a great nephew with the same disease, and he has had laser hair removal around the entire area. That seem to have helped him a lot. I wish you the best of luck in the future with this horrible disease and admire how you’ve come thru it.
I have never heard of that before. Only seen ingrown hairs being removed that are near the surface. This sounds dreadful.
Omg did the laser removal work for him? I have this sadly but I manage to get rid of it before it become a cyst , so I basically get flare ups every now (like a pimple) but I kinda wanna go to the doctors to get it removed permanently , idk what surgery is more better and for it not to look ugly back there lol
@@glolikejaaay Which country do you live in?
I have so much admiration for you. You turned a nightmare into something good for others. I don’t have what you have but I’m disabled. I needed to find a purpose. I had always done volunteer work when I was working in my career. So now I do volunteer work online mentoring others that are overwhelmed and newly diagnosed with what I have. I am housebound. It makes one feel good to help others. And what you’re doing is fabulous. Best wishes to you. Stay healthy if you can (!) and thank you for helping our vets. ~an Army mom
Ive had this for years, where it would come and go away (with oral and ointment antibiotics).
A year ago, during exams (and excessive sitting) it got so bad, i couldnt sit or stand straight. Ive never been in so much pain. My surgeon ended up telling me to get it drained, let it get as small as possible over a couple of months and then get surgery (to minimize the amount of tissue being removed during surgery). I healed completely 6 weeks after surgery by getting the open wound cleaned and packed by a nurse everyday. I got lucky tho, the nurses were telling me some patients with the same surgery had been coming for 9 months and no where near being healed.
This disease is no joke. It was the absolute worst thing ever when it flared up.
That sounds like hell! I hope you’re doing better!
Dylan, you are a class act and an example to others on how to cope with adversity. Big up!
Such courage. This disease is truly crippling. I hope he doesn’t have to suffer anymore.
You are a handsome young man who has been through a lot but look at what you’ve accomplished. I am an elderly woman now but ten years ago I had back surgery and got a severe infection. They had to dig quite deep and it left a hole and awful scars. I don’t mind and am a happy person who appreciates life. You will come out on top of this situation God bless you and the work you do to make life more bearable for others😊
Dylan, thank you for sharing your journey, my dad had this and it was very painful for him to speak about. I am glad you are healing and that you have created something positive from your experience.
Hooray for you young man! You are courageous, brave, and strong mentally and physically and an inspiration for all you have done to help others. There should be more people like you in this world to show you are more than just your “butt” or whatever your scars are.Keep up the good work 😊
What a strong young man! Such an inspiration he is
You have my full empathy as I have a close friend who went through the same experience. I hope that you have been able to gain some degree of psychological and emotional recovery from your nightmare. You did well sharing your experiences on this forum.
Wow, thanks for this video- I’m sure you are helping a lot of people. I love your idea about reading about people who have suffered one thing or another. It’s SO HARD to be alone with stuff like this!!!
I had this for 5 years. Abscess after abscess. I got the cleft lift surgery and it was cured for good.
You are brave for coming forward with your condition. I've never heard of this disease before! Wow!
It is nice to see this video. Going through life threatening illnesses really destroys your confidence and it takes a while and a lot of work to get it back. Some people may never get their confidence back. I am still working on mine. Thank you for sharing.
I was a nurse. Its a very painful disease. Thank you for being open about your journey and for doing something positive that will benefit other people in similar situations.
Prayers for you. It’s good that you’re educating others about your disease.
Hey all. I lived with this disease for 10+ years. 1st surgery was an absolute disaster. They performed a Karidakis Flap. Worst procedure ever, never allow this. After that within a year, recurrence. I refused to have it fixed, lived on antibiotics for years. I was then seen by public health and offered a technique called Z-plasty. Reluctantly I agreed, healing time, 3 weeks. Life was normal after 10+ plus years. 6 years on, no recurrence - it’s like it never existed. Feel what you’re all going through.
This is why you go for the Bascom Cleft lift.
@@ijustateyourrdog no need, its just a small sinus to clean out in idia its a day procedure awake - just need to get the hair and debris out, not a cleft lift of any flap for that matter.
We need to hear more about people like this guy, I stead of the jerks who get all the attention!
im a 23 yr old woman. i had my first cyst flair up at 19 and i had about 4 or 5 since. i cant describe how excruciating the pain was. yesterday i finally got the surgery to get the area removed, it was so embarrassing to get butt surgery but i just hope i never have to have that pain again.
I hope your recovery went well and you're doing ok!
This happened to me in 2016. I have diabetes too. It took a year to heal, and I had to go keto to stop my intake of sugar to starve any infectious bacteria, as I ended up with a bad infection. I will say, going keto and dressing my wound with pharmaceutical grade honey was what caused me to heal up.
EDIT: In the military, the slang for this malady is “Jeep Butt”.
Bless you, man! Praying for your best life ahead. Never surrender.
Im 19 surgeries in, without it reoccurring for 6 years now. So wonderful to hear your successes!!
Omg . So sorry. Thank you for sharing your story and helping
So many people through this difficult journey. Your a strong special
Man , sharing your story. Very impressed in how much you’ve made
Such a positive impact on so many.
You are indeed very brave, but what I love the most is the charity you set up, and what it's doing. I think that's an absolutely fantastic idea - for all genders.
Wasn't even aware this existed, and I have no doubt this helps people with the disease by making it less stigmatized.
Dylan, you are a gift to so many people with this and others suffering from other challenges. I agree that reading is a huge help, especially when one becomes passionate about a particular subject or two. I also spend many hours listening to and playing music. I will keep you in my prayers. Hang in there and seize life with both hands.
I’ve had this surgery twice and I’m kinda upset as off this moment cause it’s come back. The first time (2018)was the worst I couldnt find any comfort trying to sleep, wasn’t able to go to work, couldn’t walk, when I did walk I was walking around with immense lower back pain and I was just very upset with my situation in life. I had the surgery done and got it removed. Second time (2020) wasn’t as bad but surgery left bigger scars. But now recently felt pain in my lower back at work a few nights ago and I knew instantly it was back. I had a look in the mirror and saw a small cyst had formed on my on tailbone so yeah I’m pretty bummed out but already been through the surgeries and I know what’s coming.
Your right about this being a little embarrassing topic to bring up but brings me a little joy that I’m not alone.
And to anyone else suffering from this dumbass disease just stay positive 😂🫡
Thank you for sharing though bro wishing you all the best in life.🤝🏽
Thank you for putting yourself out there It shows that you are a confident person who just wants to help people. This is a very serious disease. I know a guy who's had it (to a lesser degree than yours) and you could always tell when it was swelling back up and was filling up with hairs. I looked up the disease on line and could not believe how much hair can be taken out and the amount of infection/pus that can be building up inside. Can you tell us where we can donate to your charity? If you were my son I would be SO PROUD OF YOU!!!
You can find out more about Dylan's work with Brothers N Books here: brothersnbooks.com/
I’ve been suffering with this disease for 15 years and every time that I had a flair it gets more painful. I’ve tried schedule surgery a few times and it looks like it isn’t covered by insurance and to be honest my impression was that doctors hate dealing with this disease. The 5:38 doctors that I’be been told me I have to exercise, I have to loose weight and so on…… except that they would do something to assist with the excruciating pain. As of right now I have it super infected and can’t wait for it to pop. I’m in bed for 3 days. Sorry for the lengthy complain. Your story is very inspiring. I’m very proud of you young gentleman. Thank you ❤
@@spedupaudios8189 just got my 3rd flare up drained today. The last two times I had it drained I had relief. Today no relief at all still hurts. Now the doctor says it’s a cyst and will require surgery. Everytime it seems to get more worse.
Please do your own research before listening to your local doctor!
Alternative surgeries/procedures: Bascom cleft lift, Karydakis flap, pit picking, GIPS, EPSIT.
The usual surgery (open or closed excision) has a 50% recurrence rate. Unacceptable!
Alternatives (Bascom cleft lift, Karydakis flap) have a 2% recurrence rate.
@@genemccauley2024did you try laser hair removal ?
Hi Dylan. Thank you for sharing your story. My son is 17 and has been going through this for 4 years. He has just has his 3rd surgery. He has missed most school and college but still remains to be the most resilient, strongest person I have ever known.
Your story is very encouraging and helps put the information out there for others to learn from.
Laura
So glad someone is talking about this. I had an infection on my butt and was so embarrassed about it I nearly went into sepsis before ending up in the hospital. After my surgery and recovery I found out the issue I had is very common. All the concerns I had with the doctors were dismissed like "oh we see this all the time" yet I'd never heard of anything like it before and never even considered it to be what I had in the days leading up to being hospitalized.
Admirable story man, good job finding a new focus.
You are so brave! Congratulations on not letting this thing get the better of you.
How awesome of it that he is opening up and sharing his story!! LOVE IT
Apparently you have always had a heroes heart since you were little. And like a true hero, you have risen to the challenge! Well done young man. Well done!
I am impressed with your positive attitude and thoughtfulness of others experiencing hardships in life. Great job!
Poor guys going through this. As a nurse, I've taken care of these patients post op. Best wishes and thanks guys.
Oh my gosh I really do feel for you. A male in my family only had the one operation and he was extremely lucky that it was fixed but I think it’s always on his mind. It’s horrendous and painful and only those that have had it know what it’s really like. Good luck with your future 😊❤
we definitely don't talk about this enough. After 3 surgeries, i hope this time it heals properly. Good luck to anyone with this awful disease.
Good awareness. Hoping you get full recovery!
I feel for you dear man. I know exactly what Pilonidal Sinus is and you sure have had the worst case of this. You have shown what strength you need to try and get through this awful assault on your body. May I wish you all the strength to carry on the fight to keep strong and get through whatever life brings to you. The best of luck to you. ❤
I watched a surgery done once and they cauterized the sinus with a long cauterization tool that looked like a knitting needle after the cutting and removing of the hair so it would scar the inside and not open again.
My heart goes out to you. I completely understand how you feel. I had one when I was 22 in the early 80s. Suffered silently with it for a year. It was so painful but I was too embarrassed to tell anyone. The only reason I went to a doctor and subsequently got surgery is due to my grandmother seeing my underpants in the laundry bin. She dragged me to a doctor and paid for everything as I had no insurance, bless her. I’m 62 now and it never reoccurred. I did have a scare a few years back but luckily it turned out to be nothing.
Good on Dylan for putting himself out there! Brave man who made the best of a tough situation! He then contributed back with the Bros and Books. It is not a disease to be ashamed of, just happens (in general, there are some co risk factors that can be managed, like hygiene, hairiness and getting medical attention early... see the endless RUclips videos from India on this)..but there also some genetic components to the way the hair follicles operates that cannot be helped .. just get medical help early if you are worried about this, do not wait! Dylan is a champ!
I had a cyst removed in 1974. The doctor said it probably started from a fall that happened when I was 8 years old!
this sounds absolutely horrible. ive never heard of this til now, but im so sorry for anyone who experiences this. i experience body dysmorphia and dysphoria and its so hard, and to think of a situation like this would probably cause it is rough. im glad hes able to live his life though.
What a brave young man.
So much more common than people realize. I had an ingrown hair that took 2 surgeries and ended up with a huge beyond a large grapefruit (those really big ones, I forget what they're called) sized chunk out of my butt cheek gone with part of my anus with it! I was so surprised at my body's ability to granulated and regrow that much tissue! That was over 10 years ago and even tho the anus grew back the sphincter never closed. I can live with it. I'm just so glad we live in an age where I, as a woman, don't have to be ashamed to go to my Dr about it.
i had this problem! i had the pain while sitting down. it was horrible! it was a pain i don’t wish on anyone. lucky i haven’t since!
I had that when I was 18, was open for 9 months. I'm 48 now, and it still gives me strife
I can relate to him so much. I went from a young beautiful vivacious girl to a shrek looking beast w Cushings Disease. Basically my tumor was causing my adrenal glands to mass-produce cortisol. Took years to diagnose properly because it is “rare.” But I don’t think it’s so rare! Almost all of us with Cushings are first misdiagnosed with PCOS, just a heads up! I feel that every woman with a PCOS diagnosis should have initial Cushings Disease testing (cortisol, ACTH, etc) just to rule it out. Would save many lives!!!!!
Well done for bringing this little known illness to the fore...all the best to all who suffer
I watched this and then started bawling. My son had his first pilonidal cyst when he was 14 and I remember being horrified/shocked at how huge the open surgical wound was. You could have laid a banana entirely inside the wound! We had NOT been warned that it would look like that. The next three years was a blur/nightmare of constant cleaning/packing of wounds, *shaving his butt cheeks,* surgeries and pain. We literally lost track of how many surgeries he had - it was either four or five. He ended up having a Limburg flap surgery which finally solved the problem but has left his poor bum looking misshapen and weird. His beautiful wife doesn't seem to mind!
His whole high school period was ruined by this disease. He missed SO much school and often, when I'd finally make him go back, he'd call me in a panic from the office because his butt was bleeding and needed to come home. His surgeon was nice to our faces but he NEVER explained that these cysts will often recur through no fault of our own. My boy joined the Army and he had to submit all his medical records from his procedures in order to get a medical waiver to join, and we read the notes the surgeon wrote. He was so AWFUL to us - implied that my boy had disgusting hygiene and that I was a bad mother. I was so enraged and humiliated! Again, blaming me/us for a CHRONIC, RECURRING DISEASE. And I wonder if HE had ever tried keeping a hairy teenage boy's butt crack area surgically pristine for months on end.
I'm so glad I saw this video and these comments. I really had no idea that it often IS a chronic disease and the fact that it came back so many times does NOT mean I'm a bad mother or my son is somehow dirty or gross. Hugs to all of you!
What a nightmare! Shame on your “doctor.” What a blessing you have been through your sons illness. ❤
❤ blessings to you and your family my friend I am glad the video bought you solace
You have nothing to be ashamed of, this is a debilitating disease that is common among some people and in most cases there’s nothing you can do without surgery and invasive procedures! Usually it is normal hair falling out and working it’s way into a open pore, which also happens to hairdressers and others who work with hair! It can damage a hairdresser’s hands so much they will never be able to work again 😢
Having had recent surgery I can tell you that surgeons are in a league of their own in regards of their ego and entitlement! They think everyone else is stupid and they know everything, and when they don’t know what they are talking about they will just wing it because ‘we can’t think they’re stupid’ 😂😂😂
Congratulations on doing the hard work on healing your son and proving them all wrong 🫶
I suffered with this for about 7 months.
It was the worst time of my life.
I had a surgery, where they cut it open, cleaned it out, filled it with glue then sealed the wound.
Thankfully it never came back.
Really sorry to hear of people suffering much much longer than I did.
So very sorry you had to go through so much. I pray for you, happiness, good health and true love. Blessings. ✨️✨️✨️✨️✨️✨️✨️
I've had 2 surgeries I also suffer from hydtagenitis surpitiva. I have heard these are related. Blessings to you brother and anyone who suffers from this.
I love this so much. I’m a woman, I also have had a medical condition after having my first baby. I share that embarrassing story with new moms so they know what to expect or watch out for.
so so sorry for the pain you endured!😢😢😢
you are a champion and a great guy who wishes to pay forward to others your experiences, respect, and I hope your journey in the future is hopeful and less stressful for your body
His efforts are so awesome!
Had mine from 2011-2020. 20 surgeries later and my scar has reopened last week 😓😭 I don’t wish this on anyone. It’s terrible and the most painful thing to deal with..
Im a female. I have had this issue when I was young and it usually went away with antibiotics. Unfortunately when i was 29 the pain came back and antibiotics would not help. I had to go in for surgery. It was the worst pain i had been through my whole life! I could not walk properly for 2 months. Four months later it came back and i had another surgery. I had to go through the whole process again. Painkillers, dressing and packing. Three months later it came back! But this time i had the section of my butt crack removed that kept getting infected. So far it has not returned. I had small holes in my butt crack where the hair would keep getting trapped and infected. If you have holes in your butt crack please keep monitoring it. Please don't be embarrassed about this issue. You are not alone. 💜
U said monitor the holes, but then what?
@@someonespecia1 monitoring them as if you start feeling any tenderness in that area, difficulty sitting down or walking or if that area is getting warm. This means an abscess is starting to develop. If that is the case go to the doctors as soon as possible and get antibiotics.
@@Idontknowho. As a young female suffering from this first time Thank you so much for sharing your story😥 It's only the 2nd day for me and I have already been seen by a doctor and prescribed antibiotics but I'm hoping that alone will relieve the pain
@@electroskates2434 no worries 🙂I'm glad I helped in some way. I do hope you get better soon. 💜
Thanks for sharing. Awesome story and come back. Wish you every success in life🙏
I was a listed AFL hopeful back in 99 ,whom after enduring a season of injury& health related issues, was struck down with this disorder with 4 games to go, Docs weren't sure how bad it was and gave me antibiotics to try and settle it down... Needless to say it didn't go away and the pain and anxiety it caused over the remainder of season was overwhelming!..... I saw an independent Doc whom advised surgery Wich I went through ASAP, without the club ever knowing (to my knowledge)!
I remember being called into my season exit meeting with the coach & management, 2 days after surgery.
I was unfortunately delisted , but at the time it was the furthest thing from my mind! I was 20 yrs old an my mother had to dress this festering open wound at the top of my ass-crack for the next 6 weeks!! And apart from her and the doc , nobody ever new about it.......But I will never forget!! Thankfully mine wasn't as bad as this example! Thanks for sharing brother 🙏🏽!
did you shave before? shaving usually makes it worse, since it leaves sharp edges
Props to mom
This disease is beyond painful and horrific! You have been so brave ❤
Thank you for sharing your story and helping others
I suffered with hemorrhoids for months so bad that I had to quit my job and couldn’t get out of bed , and no one my age could understand because I’m a male and I’m 21 so I completely understand this guys pain is probably terrible I hope anyone going through these type of things a good recovery
Idk how ive never heard of such a thing. Im so sorry to thos affected. Its incredible how bodies can fend off some things but not others. 😢
I’ve had surgery for this. 1st surgery failed and wouldn’t heal. Had to have an additional surgery by a plastic surgeon. I was in bed for basically 6 months. I don’t wish this upon anyone.
Thanks for sharing this. My son is dealing with this and it means alot to have you talk about the reality of it.
What a gorgeous human. Never letting his disease wear him down
Thanks Dylan for your story,I was a nurse and saw pilonidal sinus disease often.
This disease has always fascinated me, thank you for sharing your story.
Hey folks, this currently happening to my father. It has been 7 months, 2 surgery’s later and his still not well, we are going back to the doctors tomorrow to see them again😢 hopefully we will get positive news.
Cant imagine how difficult it had to have been to open up about it, but how awesome you were able to and best of all have something great come out of it like a community that can relate and support each other through a shared love of stories. 🤘🏼👏🏼
I've had the samething and had multiple surgery's! It's been crazy, but it's been 4 years and I'm still good! Thanks for sharing.
Brother, I want to appreciate you for your time and sincerely and decision to educate us about this phenomenon. It feels to me like a rare one surely because people do not speak up about it. But for some reasons I always have a bad feeling when I see hair growth vitamins to be swallowed and the bad feeling is what if the hair start growing inward instead of outward. I didn't even know there was a condition like what you explained. Thanks again and I pray that this healing is complete so that you can be free and enjoy good health for the rest of your long life. ❤