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I Could Have Died! Surviving SJS/TENS Stevens-Johnson Syndrome

Updated on May 24, 2017
EVERYTHING hurt. Those are painful chemical burns from the inside out. 2 weeks into SJS -  note: (declaration: pictures, story and name are copyright ownership by the author Dan W. Miller The Vanilla Godzilla. You do not have my permission to use.
EVERYTHING hurt. Those are painful chemical burns from the inside out. 2 weeks into SJS - note: (declaration: pictures, story and name are copyright ownership by the author Dan W. Miller The Vanilla Godzilla. You do not have my permission to use. | Source
SJS can cause open sores from popped welts coming from the inside to the surface. Many patients end up in a burn unit.  Children are put in a drug induced coma because of the pain. My sister said I looked like a corpse. (copyright laws apply)
SJS can cause open sores from popped welts coming from the inside to the surface. Many patients end up in a burn unit. Children are put in a drug induced coma because of the pain. My sister said I looked like a corpse. (copyright laws apply) | Source

These start from the INSIDE and show on the outside.

Constant pain for months on end. Recovery, five years later still is ongoing!  (declaration: pictures, story and name are copyright ownership by the author Dan W. Miller The Vanilla Godzilla. You do not have my permission to use.)
Constant pain for months on end. Recovery, five years later still is ongoing! (declaration: pictures, story and name are copyright ownership by the author Dan W. Miller The Vanilla Godzilla. You do not have my permission to use.) | Source

The author writes down his thoughts, fears and the pain he feels the day after leaving the hospital where he nearly died.

Hello. On the 26th of November 2008 I started a horrendous ordeal that nearly killed me. I had a major reaction to medication that was prescribed to me. Sulfa. I just got out of the hospital yesterday (12/5) after eight days of hell. The reaction to the medication is so severe that they have a name for it - Stevens-Johnson Syndrome Disease.

No, it's not contagious but I run the risk of infection daily. Look it up on the Internet. Scary! 1 in 4 die. Blindness is not uncommon. Luckily, so far, the disease stopped short of that. Am I scared? Of course. What's going to happen to me? Will I die later, suddenly as I lay in my condo all alone? Or slowly in pain as my internal organs cannot recover from the scorching they have received? My poor cat cannot understand why I can't pet her.

So Dehydrated

Initially, I was so dehydrated, no one could get any blood out of me and the E. R. staff almost resorted to sticking a (huge) needle into my Inguinal ARTERY (deep in my groin) just to get a blood sample. I had to refuse that one. They finally got some blood from a small vein that I had pointed out to them and I knew would work. I'm a former U.S.N. Hospital Corpsman. I also knew a blood pressure of 40/20 cannot go much lower without cardiac arrest. I'm watching everything the emergency room staff is doing. I've worked in a few of them before. But it's starting to be difficult to stay fully aware.

Much later, five years to be specific, I hear from one of my nurses that the staff did not know exactly what was wrong with me and an official diagnosis was not made for over twenty four hours. Staff at shift change briefings just refer to me as "The Red Guy." I've also noticed on subsequent visits to that second story ward, the corner room I occupied is a sort of "dying room." Patients of ALS Lou Gehrig's disease and severe compromised breathing with limited life expectancy are alone in there.

Learning To Live With It

Right now over 75% of my body is blistered just like a burn victim. Some blisters have not popped and others have. I have bleeding, open sores all over my face. (I guess I'm growing a beard!) But the worst part is that the inside of my mouth and throat is a peeling and re-peeling bloody mess. My lips are either crusted over with blood or waiting to be sloughed off to bleed and crust over again.

Showering is just excruciating because even water stings like crazy when it touches any affected areas. I've had one painful two minute shower in the hospital. Don't know when I will be able to tolerate another one. The doctors wanted me to get stabilized enough so I could get out of the hospital as quick as possible and avoid any nosocomial infections (infections picked up inside a hospital).

Needless to say eating (yeah, right!) or drinking is a painful effort. Just putting a straw in my mouth causes irritation to the skin, mouth and throat. Any foods with any kind of flavoring or stinging component in it, just send me through the roof. At times it's difficult to move my lips to even speak.

Patients of SJS eventually make a full recovery with very minimal scarring. I'm a very, very long way from that. In fact it looks worse than earlier in it's initial stages but this is part of the disease "running it's course." I had a constant stream of doctors, med students and nursing students documenting my case for their medical journals, thesis and school study material.

Luckily, I received optimal care from the V.A. Hospital in Phoenix. I am a Desert Storm War Era Veteran and never dreamed I would be qualified nor did I know I was eligible to receive the benefits I was entitled to. Thank God, because they saved my life!

Update to "I Could Have Died" Two Years Later

To feel pain is one thing, but when it's your entire body inside and out, is a constant torture. For about six months I could do nothing but live. Just breathe, eat, drink, etc. Open, bleeding blisters were most prevalent on my upper torso. I had some sores below my waist and only one on my private part but not nearly as many as on my back, chest and internal organs. I would just lie on a silk blanket with creams slathered on me.

The next six months was spent learning to walk for about 100 yards without being in too much pain. I was so happy when I could finally lay down in my bed and attempt to sleep after eight months of sleeping sitting up in a lounge chair.

I couldn't eat anything with any flavoring because it would excruciatingly sting the inner open sores in my mouth and esophagus. Vanilla was horrible! It was just bland tapioca and I eventually worked my way up to french toast. My inner lining of my mouth peeled daily for four months and I would spit out blood and skin.

Think of a chemical peel from the inside out. Taking a B.M. was excruciating (chemicals going past open sores, especially around openings like my mouth and anus.) I would just hold on and scream in agony during my daily B.M. for over a year and a half and would be in a fetal position of pain for usually up to three hours. Nearly all of my fingernails and toenails fell off.

Looking Ahead

It's very self-evident I am just not as in as good a shape as I used to be. Lay still for 6 months straight. Muscles will atrophy. I have no feeling at all in the balls of my feet. I had a blister on my foot from walking one day recently but didn't know it until I saw blood on my sock. Toenails and fingernails have this weird split down the middle. My big toenails are a hideous bumpy discolored claw. My skin is just a bit more sensitive all over. On the good side, my sisters noted that my face looked younger. That's what happens when you get an unwanted chemical peel for your mug.

I believe having been in tremendous health before that fateful day in November of 2008 probably helped in my survival and recovery. I was a young man of 50 when this all began. Just glad to be here and able to tell you my story.



Dan W. Miller aka The Vanilla Godzilla ©

Fight Club (1999) This is what happens inside the body of an SJS/TENS victim. A chemical in the drug and the body's mucous membrane system combine to cause excr

Enjoying one of my comedy shows in Phoenix 2012

A normal enough recovery is possible. Three and a half years later (pictured 2012) I'm smiling because I was fulfilling part of my Bucket List wishes as a stand-up comedian hosting and producing my shows.
A normal enough recovery is possible. Three and a half years later (pictured 2012) I'm smiling because I was fulfilling part of my Bucket List wishes as a stand-up comedian hosting and producing my shows. | Source

Living is so much better than dying

Have you ever been really close to dying?

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Thank you for your kind thoughts and comments

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    • Irob profile image

      Irob 5 years ago from St. Charles

      Wow, who prescribed the meds and were you warned of the possible reaction? That stuff is scary, especially when you are counting on a med to help you

    • profile image

      Irob 5 years ago

      I'm allergic to Sulfa drugs. I've had sulfonimides(sp?) for eye infections in the past. I went to an urgent care doctor for a cyst. He insisted I try this new drug (that obviously a drug rep had pushed onto him for compensation purposes) and had me sign a waiver.

      Then after breaking out in hives, I went to the VA Hospital who gave me a steroid and that's when it (literally) blew up inside me.

      Recently, after three years, I went back to my ward in the hospital to thank anyone that had helped to save my life. I found two nurses. The one nurse said, "Oh, I remember you. You were that burned up guy back in the corner room." Then the other nurse remembered and called me by name.

      Thanks for your time reading my posts, "Irob." You are MY fan now.

      ~ D.

    • Raevyn14 profile image

      Raevyn14 4 years ago from Tecumseh, Oklahoma

      I have the disease, I was diagnosed 3 days ago and I know it was the power of prayer that saved my life. I was given steroids and antibotics plus plenty of fluids. I was being looked over by someone who was protecting me. I am still so scared. I was in the ER with my mom and I was crying saying "I'm so scared, I don't wanna die" My mother was there telling me she wasn't going to let me go. She prayed that I would find treatment for this illness and I don't know what I'd do without her. D': I'm so sorry, but this experience was so tramatic for me. I don't want this again, but I know there is no cure for this. I'm still so scared. I know that I'm not alone with going through this, I was in the hospital for 3 days and now I'm out. I had a mild case of SJS

    • profile image

      Gail Likich 3 years ago

      Dan, I started a message to you on this, but, shock... don't know where it went. I was messing with you on f.b. then BAM you disappeared. I told J.P. of the error of my ways and he said he would pass on my message to you. I read up on you and was impressed with you, especially your military service and mainly your handling of SJS. Originally, I thought you were just playing the comedy angle and needed "Friends" and "Followers" to build your audience. Later I realized that is your passion/business. PLEASE contact me either via f.b. or my email: Miss.Gail99@yahoo.com. God speed, Gail

      BTW: It was REALLY hard to get in contact with you...

    • Writer Fox profile image

      Writer Fox 3 years ago from the wadi near the little river

      What a horrible experience you went through. This reminds me of Job in the Bible and his skin sores. You look so great now it's hard to imagine that you ever looked like the other photo. Voted up and interesting.

      By the way, thanks for your service in Desert Storm. I wrote a Hub collecting War Poetry which is a big hit on Veterans Day. If you ever write a poem about your war experience, let me know.

    • Dan W Miller profile image
      Author

      Dan W Miller 3 years ago from Southern California now living in Phoenix

      aw thx, "Foxy!" Kind of like a chemical peel (and painful chemical burns) from the inside out. Mainly second degree burns.

      This is how I began my stand-up comedy, show producing/hosting, begun facebook, writing and winning an award for my internet comedy as voted on by the facebook community after my nearly year of recovery.

      Google "Monsterburg," my name or nickname. Started all this after 50 years old, 5 years ago (including the almost dying part.)

    • fpherj48 profile image

      Paula 3 years ago from Beautiful Upstate New York

      I am basically speechless and I think there's some sympathetic-phantom pain going on! (Power of suggestion) You POOR baby......just to think of this horrendous ordeal, is too much for this mother of 4 adult sons!

      An allergic reaction?? Incredible. I'm off to google this outrageous syndrome. Stay healthy, Dan! UP++

    • Dan W Miller profile image
      Author

      Dan W Miller 3 years ago from Southern California now living in Phoenix

      I AM SO pain-tolerant. Root canal, no shots. Hurt? Yup. Not too bad. THIS... this SJS was a burn through and through nearly all over. OY! No lining of mouth, butt (tmi, sorry) X4 mos. - 1/4 die and 1/8 of survivors either technically or actually go blind! Attacked entire mucous membrane system. GREAT recovery, though in nearly all survivors. Just given Sulfa drug and BOOM x100 allergy reaction. Could be any drug to any one else. Ahem... Meanwhile uh you look quite "healthy," my dear! :)

    • profile image

      Gail Likich 3 years ago

      Wow. I read your article before and was moved. I just saw the picture of you with the sores, making your recovery even more remarkable. I've had my share of infirmaries, including shingles near my eyes which freaked me out. This was one of the many after effects of radiation treatment for cancer, notwithstanding those received during treatment. By the grace of God, we've both recovered. God speed, Gail

    • Dan W Miller profile image
      Author

      Dan W Miller 3 years ago from Southern California now living in Phoenix

      Google some horror pictures sometime on the internet.

      I feel bad for the little kids, who can also get it because the pain is usually too hard to bear for them.

    • profile image

      allura 3 years ago

      I try to avoid medications nowadays. I always try to avoid processed food and try so hard to strengthen my immune system. This is so traumatic. I am glad you have survive this.

    • Dan W Miller profile image
      Author

      Dan W Miller 3 years ago from Southern California now living in Phoenix

      I rarely take a Tylenol, allura. Healthy as a horse my entire life. Always the oldest guy on my men's baseball, softball and basketball league teams.

      But take a drug (that you might not even KNOW you have an allergy to) and BAM it (SJS/TENS) can hit you like NO OTHER allergic reaction can AND it could kill you.

      That's how the NBA's Manute Bol (tallest player ever in the league at the time at 7'7") died. Kidney failure from the SJS literally burning up his insides.

      Take care, folks...

    • profile image

      Laura 3 years ago

      I was diagnosed on January 25th. I was on my 8th day of Bactrim. My case was mild compared to yours. I am curious to life after sjs and can't find much info. I have recovered well with the exception of my eyes and mouth. I am still being treated for inflammation to my eyes and my mouth is still not completely healed. The ambulance personnel that transferred me to the burn unit at LSU Medical Center told me that they had transported a lady there twice with sjs. Can you get this again??? That scares me. This illness was hell on earth! God bless you!

    • profile image

      John Ca 3 years ago

      I had TENs in 2002 - I still suffer from the after-effects.

      SJS can be had multiple times

      My doctors said that if I get TENs again, I will die.

      Search Facebook for Stevens Johnson - there's a lot of support out there!

    • profile image

      Bridget Stout 3 years ago

      Hi Dan, I am so glad you lived through it. I was asked, the first and most severe "episode" in November of 2004, if I'd had a chemical peel for the holidays! "God no!", I said... ''anyone who would do this voluntarily is nuts''! But yes, although I look younger than my years, I feel so much older. It takes such a tole on the energy, just keeping up with the maintenance of the many issues involved.

      I have had SJS 4 times since the first episode, which was the worst. But all of them are bad. I pray that you NEVER have another reaction!

      God bless you and keep you well from this day forward.

      Love and prayers going your way. Bridget

    • Dan W Miller profile image
      Author

      Dan W Miller 3 years ago from Southern California now living in Phoenix

      Bridget, Thank you. Very informative because I have never spoken to anyone that has had more than their one episode.

      Oh, my dear! I am a strong-willed, pain tolerant MAN and the thought of experiencing another living hell three more times makes me shudder and I believe I would just give up.

      You are my new hero! We need to stay in touch. Please find me virtually anywhere on other social media sites.

      I have just recently realized I'm making an impact on SJS victims, friends and their family,

      Thank you, thank you and bless you.

      ~ D

    • Dan W Miller profile image
      Author

      Dan W Miller 3 years ago from Southern California now living in Phoenix

      I want to personally thank HubPages.com, all of you that have read this article/hub and especially those that have commented, given me faith in my abilities as, at least a decent writer/author because I have some good news.

      This hub, as of late, has been in and out of the Google search Top 5 for 'SJS' behind Wikipedia.org, .emedicine.org., Mayo Clinic, YouTube and the official SJS Support site.

      I know I am a bitter pill to swallow, at times, but the lessons learned, the nice writers/authors that continue to guide me through this trial and error experience have been invaluable.

      Now I understand most of the site's "workings."

      This hub is #2 world-wide and #1 nationally in Google search for "surviving sjs." I still come in the TOP 20 in all more common engines like 'SJS,' 'Stevens-Johnson Syndrome.'

      Let me state further this is NOT an advertisement of my hub but a gracious testimonial and example of how you've been a driving force helping me along.

      I can tell someone an easy way to find me was to type in "I Could Have Died" but this new way is even less letters/characters... and we all know the less specific, the more traffic has been through our work. "Traffic" on the "cyber highway" is a good thing in this case compared to on "the freeway."

      Tonight I say, "BRAVO" to all I have mentioned on this comment box because any success attributed to me, you have been actively involved prior to my path's beginning.

      ~ D.

    • profile image

      Shawn 3 years ago

      Dan,

      I praise you for your strength to go through your ordeal. I have met a few victims of SJS/TEN and it is heartbreaking to witness. As a law student, I hope you took legal action to help with some of your suffering. Can SJS happen to anyone? And from what I understand, most all medications have a risk of causing SJS/TEN?

      I hope you are doing well, Dan.

    • Dan W Miller profile image
      Author

      Dan W Miller 2 years ago from Southern California now living in Phoenix

      Thank you, Shawn. Don't know if anyone is really at fault. ANYONE can contract SJS from almost any drug. Mostly from an antibiotic, anti-seizure and many times acetaminophen. That's why so many kids get it because they haven't been exposed to many drugs yet.

    • Penny G profile image

      Penny Godfirnon 2 years ago from Southern Iowa

      Add Your Comment…Gosh, I feel so lucky. I had a severe reaction to sulfa when I was pregnant . That son is now 25 and has severe mental illness. I wonder many times if this was the cause. They gave me shots over and over. It could not compare to your nightmare. I hope you will never suffer this again. Blessings to you.

    • Dan W Miller profile image
      Author

      Dan W Miller 2 years ago from Southern California now living in Phoenix

      First of all, thank you for reading my hub and responding, Penny. That article gets hits on it constantly.

      I wonder what the shots were that they gave you. Sulfa made me break out in blisters and "hive-like" bubbles. But they were not painful. Then I was given Prednisone to combat them and, I tell you, I felt an explosion occurring inside of me instantly. I guess the combination of the two threw me into full-fledged SJS.

      25 years ago, I doubt there was even a clear-cut choice how to cure it. I later found out from my nurse, the hospital had no idea what was wrong with me for a full 24 hours in 2008. They just referred to me as, "The Red Guy."

    • profile image

      j. vargas 2 years ago

      I'm a fellow survivor of SJS / TEN and I have it in a very rare chronic form. I have had it three times since I was 8 years old and now am 15 years old and going into my fourth time having it. Every time I've had it I have only hung on by a thread. maybe I'll beat it again. It makes me happy to read other survivors stories. Good luck, and great passage!

    • colorfulone profile image

      Susie Lehto 2 years ago from Minnesota

      My sister was prescribed Sulfa (Bactrim DS) for a urinary tract infection and had no ill side-effects. She was on 2 a day for 5 days. She had a lot of gas after, and ate sauerkraut and yogurt to restore the normal flora in the GI tract. She did her research on Sulfa and found a that many people have ill effects.

      I am sorry to read that you had such horrible symptoms, and am very glad that you made it through a near death experience. Sharing and voting. (BTW, thank you for serving in the armed forces.)

    • ptosis profile image

      ptosis 2 years ago from Arizona

      HOLY SHIT! Looking up google images of skin pro problems is painful to even look at. I am SO glad you are better. My little skin rash (gone now) don't seem so bad in comparison

    • profile image

      ChrisslaR 2 years ago

      That's I'd so horrible! I'm so sorry you had to experience that. With a disease that severe, it's hard to imagine that many props love. You are a very strong person.

    • Besarien profile image

      Besarien 2 years ago

      I am so sorry this happened to you but am deeply moved by your inspiring recovery and the courage with which you share your experiences. I have no doubt your story will help other sufferers and inform the public about SJS. On an unrelated note, thank you for your service to our country.

    • Marisa Wright profile image

      Marisa Wright 2 years ago from Sydney

      I was astonished to read this Hub. I've taken Bactrim multiple times for UTI's and never even dreamed it could do something like this! I haven't been prescribed it for years, so maybe doctors are more aware of the risks? I'm so glad you made it through.

    • Dan W Miller profile image
      Author

      Dan W Miller 2 years ago from Southern California now living in Phoenix

      You are all too kind and sympathetic. Thank you.

      I am nearly a freak of nature when it comes to pain tolerance. HOWEVER when my entire body stung, burned, ached and the goal for the day was to get my B.M. over with because I would curl into a fetal position and feel excrusiating pain two hours prior and two hours afterwards for months on end, I wondered if there would be any end in sight!

    • peachpurple profile image

      peachy 23 months ago from Home Sweet Home

      this is a horrible disease, worst than chicken pox. luckily you had survived the ordeal

    • Dan W Miller profile image
      Author

      Dan W Miller 23 months ago from Southern California now living in Phoenix

      Chicken pox is about 1/10th compared to it. All my nails fell off, my entire day was spent centered around taking a painful BM for about 8 months. That picture is my skin "exploding" from the inside out. THEN the psychological scars are devastating.

      Thank you, "peachy."

    • profile image

      RSD RAGE 22 months ago

      FIRST SORRY FOR ALL CAPS I CANT DO THIS OTHERWISE.BI READ UR STORY. HEARTBRWAKIN INDEED. I HAV 2TWIN BROTHER. AND ONE PASSED AWAY LAST YEAR AND THE OTHER TWIN HAS BEEN DIAGNOSED WITH SJS. MY BRO WHO PASSED HAD SORES AS WELL. NOW IM TWO YRS YOUNGER THAN THEM BUT I THINK I MAY HAV IT. MY BROTHER DOESNT HAV ON FACE OR MOUTH OR NECK. QHICH I READ WAS WERE IT BEGINS RASH WISE. THE PROBLEM IS THAT I AM NOT SURE IF HIS DIAGNOSIS IS CORRECT ON THE SURVIVIN TWIN. ALSO BROTHER QHO PASSED WAS TO BAD SHAPE WENT TO HOSPITAL AND STAYED FOR A MONTH AND PASSED AWAY. IN 2008 I WAS DIAGNOSED WITH RSD AND I HAV SIMILAR SORES. BUT RSD CAUSES SORES AS WELL. DO U KNOW IF SJS IS HEREDITARY OR NOT. PLZ RESPOND ASAP. ALSO CAN U HELP ME SET UP FOR HUBPAGES OR HOW DO I START ONE FOR RSD. WHICH IS A 42ON MCGILL SCALE FOR CLASSIFACTION OF ALL ILLNESS AND DISEAES IN AMERICA POSSIBLY THE WHOLE MEDICAL WORLD. IDK. BUT I NEED TO RAISE AWARENESS ABOUT RSD CUZ THERE IS NO CURE AND MANY MANY SOLDIERS GET IT. ITS FROM ANY TRAUMA TO UR BODY AND UR BODY CANT TAKE IT. U CAN GOOGLE RSD PHOTOS AND IT GIVS THE WHOLE EDIOLOGY AND PICS. AFTER CIVIL WAR SOLDIERS WHO HAD IT HAV PASSED. ALOT NEVER DiagonosiSED AT ALL ITS RARE THEY SAY BUT DAILY PEOPLE ARE DIAGONISISED WIT IT. IM SORRY FOR HQVIN SJS AS I CAN RELATE ESP. THE MENTAL SIDE OF IT. I HAV PTSD OCD AND PANIC ANXIETY DISORDER ALL FROM THIS ILLNESS. IT HAS 88% SUICIDE RATE AS WELL ONLY DISEASE TO EVER SCORE OVER 40. ITS. 0~ 50. 0 ur a picture of health... 50 UR DEAD. SO 42 IS ONLY 8 STEPS FROM DEATH. PANCREATIC CANCER SCORE IS 37. SO NOT TO DOWN PLAY UR VERY SERIOUS CONDITION AND U WILL ALWAYS BE IN MY PRAYERS FOR LIFE. OTHER SOLDIERS NEEED TO SEE IF TUEY HAV IT. U MUST TREAT RSD IN THE FIRST 3~6 MONTHS OF CONTRACTIN IT OR ITS OVER. NOT FROM TIME DIAGONOSIS WAS. THANK U TO ANY AND ALL WHO HAV TOOK TIME TO READ BOUT RSD. GOD BLESS US ALL AND BLESS AND PROTWCT ALL SOLDIERS WHO ARE AND HAV FOUGHT OUR WARS. PEACE LUV HAPPINESS AND PLEASANT EMOTIONS ALWAYS TO ALL ♡♡♡

    • Dan W Miller profile image
      Author

      Dan W Miller 21 months ago from Southern California now living in Phoenix

      That was very nice and in my case, the least said the better. You said it all. Thank you sincerely.

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