Still Experiencing Pain After 7 Surgeries 3 Years Ago

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New Member

Date Joined Nov 2011
Total Posts : 3
   Posted 11/18/2011 12:39 AM (GMT -6)   
Hey all, name's Daniel. My story goes a little something like this.

When I was a freshman in high school, I started to notice that some thing was wrong with well... my tush. I started to experience some discomfort until one night I woke up with the most agonizing pain I've ever felt in my entire life (at the time). And this was a constant pain. It kept me up for 5 nights in a row. I don't think I slept more than 10 hours that whole week. Then one day, the pain has hit it's peak, and just as suddenly as it appeared, it disappeared... Until my Mom noticed that I was bleeding from my tush.

Well, one thing lead to another and sure enough I had to under go 5 surgeries in 1.5 years. Basically what has happened when I was in the womb was that in the upper-portion of my tush, particularly my cleft, my skin formed "back wards." Instead of forming from the inside-out, it formed from the outside-in. So I had dozens if not hundreds of hair follicles underneath the surface of my skin and a cavity formed and got filled with infectious fluids. It got so bad that after my 5th operation and 2nd doctor/surgeon, I was transferred over to another doctor, more specifically a plastic surgeon. By then I had 3 large cavities and a wound that was so infectious that every day the nurse that came to my house to change my dressing was able to measure in several millimeters and sometimes even centimeters the wound's expansion.

So what my 3rd surgeon finally decided to do was to, well... for simplicity sake... took an ice-scream scooper and scooped EVERYTHING out from my cleft area, and replaced all the muscle and tissue there with muscle and tissue from my lower back. And ever since then, I've experienced pain from my tush up to my lower back. Only... I'm not sure if I can call it acute pain, or chronic pain.

I know the differences between acute pain, and chronic pain... but this pain seems to be a mixture of both. When I have pain there, it's a powerful, dull pain. Not like a sharp shooting pain, but it just flat out hurts sometimes to the point where I can't even really breathe correctly and to sit down is out of the question. Even walking/running or hell even laying down on my back/side hurts. The only thing I would be able to do is just lay as still as I could on my stomach. But this usually only lasts for about 30 minutes, 1 hour tops. By then the pain would ebb away and I would hardly feel anything there at all. And sometimes I can go for a few days without experiencing any kind of pain but then it would just return with a vengeance.

I've tried aspirin, Icy/Hot, heating pads, ice bags, massagers, hot showers, hot baths, and "waiting it out." Well... It's been almost 3 years now since my last surgery and the pain isn't getting any better. So I don't know if this is something I should bring up with my doctor, or something that I should just maybe tough out and accept that it might just be a fact of life now. One friend suggested that I ask if I could be given a very small dose of prescription pain killers for when it does flare up. Only... when I was going through all those surgeries, I was on a lot of pain killers. And one day after a very bad dressing change, my nurse, God bless her, tried to see if she could get me some more pain killers because I ran out. When a 17 year old boy is biting down on a pillow, crying, that usually means there's A LOT of pain. She managed to get some doctor at some hospital on the phone I could talk to only he then just turned right around and said that I'm nothing more than a junkie looking to get more "candy." After that, I've been very, very wary of asking/taking for pain medication. And I'm not so sure if I would like to rely on pain medication to stem the pain.

But... at the same time, I'm not so sure If I'm up to living like this for the rest of my life. So I'm hoping that by talking about it here I can maybe get some feedback on this issue and hear what else other people have to say or have done to cope with their pain.

Hope to hear back from a few good people soon.


Veteran Member

Date Joined Mar 2011
Total Posts : 816
   Posted 11/18/2011 2:01 AM (GMT -6)   
Hello Daniel m my poor dear boy, I read stories like yours and I want to shout from the mountain top, how bad does it have to get for us to be treated like human beings.  I am so angry about what you are going thru, say next time the dressing gets changed, take it directly to you doctors office, then, I think I better stop because I going to go somewhere that will not make the forum anyway.  But you get my drift, dont you?
I am sure at the age of what maybe mid 20's this is how you want to spend your life, first and asap, find yourself another pm doctor, one who understands the oath "first do no harm", I realize I have quoted that many times since I became a member in March 2011, but honestly, this is so far beyond even anything I have heard over this time, and all I knew before becoming a member.  This is inhumane, its...... I ran out of words to try and explain how very angry I feel about the way you are not being treated, I am at a loss for words, and my children will tell you, I am never at a loss for words.
Ok back to somethings that you may want to do to get the help you need.  Try and find a pm doctor who has compassion, empathy, at least a little common sense, someone that maybe you can find out about before you make an appt to see him/her.  Try getting in touch with the AMA, go thru your yellow pages, sadly I know doing all this work is going to be very difficult for you, I pray you have some help from your family.  How many records do you need explaining something that I am sure is somewhat uncomfortable for you to speak about, I guess by this time you must be used to explaining it.
I happen to be having a bout of insomnia, its 2:51am here in Maryland, and now I know I wont sleep because I am so aggitated about what horrors you are going thru.  I am very glad you found this hw forum, at least know that you are surrounded by people who do have compassion and empathy for you, sadly thats just not enough.  Since I am not sure where you live, in the US or elsewhere, if you are in the US, you have rights as a human being to be treated with respect, not be accused of being a junkie.
I want to scream.  As of right now you are being made to feel that being dependent on meds is a terrible thing, again do diabetics get accused of overusing there meds, how about people with high blood pressure, and an entire world out there that does not have to continually defend the meds they take so they may have some quality of life.
Ok I guess I have ranted enough for now, please I am sure many more cp patients on this forum will have some good advice for you.  I am glad you found us.
Good luck, and bless you, I will be praying for you,
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Regular Member

Date Joined Jan 2011
Total Posts : 373
   Posted 11/18/2011 2:21 AM (GMT -6)   
It is both fascinating and frustrating to read your post. First off, I relate to your "problem, I had to have 8 surgeries to reconstruct my tush..i remember it being referenced to a "gaping hole", the infections, the measuring .. I ended up with an ostomy bag, so first,you are lucky to have not had that happen and second, it is fascinating to me that this brilliant doctor used your back muscles ..wonder if they could do that for me..mmn, but third I am afraid the pain may here to stay, at least for now ..I know mine is..I understand that dull ache sooo well! If you are concerned about addiction try one of the non-addictive ones, I know neurontin has been successful for me although I do need more to function, but Daniel, I'm a mess and a little older but give it a shot.. maybe it will work for you..good luck daniel, will be thinking of you, Leslie...
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

Post Edited (Lasardo) : 11/18/2011 1:30:19 AM (GMT-7)

New Member

Date Joined Nov 2011
Total Posts : 3
   Posted 11/18/2011 3:52 AM (GMT -6)   
NiNi53 said...
Hello Daniel m my poor dear boy...


Thanks for your kind words Kathy. Real quick, I know what it's like to have insomnia. (Talking about this on another forum believe it or not...I'm a medical mess what can I say? :P) After I was given a clean bill of health by Junior Year, 2nd Semester, 2 weeks before I was to start my Senior year of high school, I had my first epileptic episode and was put on a medication (2nd kind) that sometimes causes slight insomnia. Go figure it's 2:21am here now (Colorado)

Er, guess I didn't feel like spilling out every detail about my ordeal. This all started back in '06 and wasn't resolved fully until '09. I had a total of 7 surgeries between '06 and '08, 6 of those surgeries landing smack-dab in the middle of school. The first 2 were a total failure and if anything, those 2 were border-line torture if not inhumane. Luckily for me that doctor got called away to California to become Chief of Surgeon. I was then pointed to another doctor who specialized a little more in cases like me and through Doctor #2 I through 3 surgeries. Now don't get me wrong, he had every good intention, but when ever he would think he got it all, through the notes of my nurses that visited my home (they were awesome, I actually kind of miss them) they would see that the wound was more extensive than they thought. By the time I had my 3rd operation with Doc #2, he looked at me seriously and said that this was out of his reach and he referred me to Doc #3 who was a plastic surgeon. Doc #3 was stone-hard set on getting me back to "normal" (as if I ever was normal haha) and couldn't believe what the other 2 doctors did to me. His surgery, the 6th one, may have been the most drastic but it finally brought my infectious wound under control. By November of 08' I was for the most part out of the woods. I just needed to go through one last "touch up" surgery because there was just a stubborn little hole that didn't want to close on it's own. By about Feb of '09 I was given a complete bill of health but by then the damage was already done.

As for the whole pain killer issue, when I broke down like that, my nurse, a fiery lady, got in touch with a doctor that was on call at the time who could talk to me over the phone about filling in a new order for my pain medication since my doctor/surgeon was out of town for the rest of the week. When he asked me why I needed it, I guess he didn't believe me that I needed it simply for a dressing change. He said in a fairly rude tone, "Well I can't help you kid!" and hung up on me. He then turned around and called my nurse (she was at her office during all of this) and said that he couldn't help me and that I was probably just a junkie looking to get some more "candy." She almost lost it herself and was actually thinking about reporting that doctor. Anyways~

I'm 19 now, yet I feel as though I might as well be in my mid 20's if not 30's. My social life for the most part was shot to hell because I spent almost every waking hour trying to catch up with my school work. I should have failed my Junior year and definitely my Senior year but luckily there were quite a few teachers who had very large hearts. One teacher I had, I had her for my Economics class. I didn't do a single home work assignment and didn't turn in half my essays/projects yet she still passed me with a C. Anyways~

One issue I have with all of this is the fact that I have yet to tell my parents. My mother means well, but she's always seen me as her little baby. I understand where mothers are coming from, but she's stifling to the point where she cries when I mention moving out. She was close to becoming an emotional wreck when my bout of surgeries was coming to an end, and I'd hate to see how she would react if I tell her about this ever lasting pain.

Second issue I have is that Id on't really have a primary care doctor. Technically I do but it's more an "Office" than an actual doctor. Any time I go there, I always see a new doctor. I can't even remember the last time I saw my "Primary" Doctor in person. One doctor I see every 6 months (I have to take a daily injection of steroids for the fact that I lack a pituitary gland) knows more about me than any other doctor I've ever had. And he's a very caring doctor but my next appointment with him isn't until mid January but I suppose that if I've waited 3 years to talk to anyone about this, I can wait 2 more months.

And finally, insurance. Since my Dad was sent home from his tour in the Middle East early due to medical reasons, I no longer have military health insurance (aka Tricare). And while I have Medicaid, more and more doctors are no longer accepting Medicaid. Not only that but, to be honest, I'm not even sure what for doctor I should be looking for. Be it a doctor that specializes in pain problems or just any general Primary Care doctor.

Almost 3am... Should probably hit the sack. Oh speaking of which, when ever the medication induces it's insomnia effect on me, I usually just take a couple Tylenol PMs. Knock me out for a good 8 hours. Wake up slightly groggy but I'd rather wake up slightly groggy and counter it with a big ol' cup of coffee (black please, none of that 10-pounds of sugar, 20 gallons of milk and 3oz of coffee crap from starbucks...) than stumbling around the whole day in a half daze.

New Member

Date Joined Nov 2011
Total Posts : 3
   Posted 11/18/2011 4:02 AM (GMT -6)   
Lasardo said...
It is both fascinating and frustrating to read your post.

good luck daniel, will be thinking of you, Leslie...

The thought of having a ostomy bag makes me shudder. No offense ): I had 3 drainage tubes in place 3 separate times and each of them made me shudder almost 24/7. I cried when I saw that drainage tube sticking out of me for the first time...

And if it wasn't for that drastic operation I might have actually ended up in your shoes. At one point, before the drastic operation, one nurse one day actually asked me a very peculiar question. He asked me if when he placed the cotton swab into the wound, if it felt like it went up my er...butt. I said yeah and he said that it was because it actually went right up against my anus. Helloooooo horse-pill sized anti-biotics...

As for transferring the muscle tissues, personally, I'm not so sure if I would recommend it. At first, my lower back was extremely sensitive to touch. When ever anyone tried to touch it there (particularly nurses when they wanted to change the dressings) I would literally arch my back inward as far as I phsycally could because it was so sensitive. It wasn't so much painful, but it was still extremely sensitive. Now every once in a while I get a dull pain there, and it actually feels rather tight, like literally. They had to fold my skin over itself so it would cover the hole and so when ever I try to bend down it would actually be a little bit of a pain because of how tight it is.

As for the neurontin, this is the first time I'm hearing about it. I'll have to look this up tomorrow (well...more like later on today hehe) when I'm more awake.

Veteran Member

Date Joined Jun 2009
Total Posts : 974
   Posted 11/18/2011 5:46 AM (GMT -6)   
Sorry to hear of all your medical issues. Just thought I'd pop in to let you know that neurontin or gabapentin the generic form is for nerve pain which may actually help your situation if the pain is from nerve entrapment. Also, there is ultram or the generic form tramadol which is a non-narcotic pain reliever for moderate to severe pain. I use both and the tramadol does help me if I take it along with tylenol but I have alot of issues with inflammation. Both of these drugs are very inexpensive even without insurance if you get the generic forms which I do. Also, your doctors shouldn't have such an issue with prescribing these. The tramadol did take a few weeks to get used to the side effects, felt like I was speeding, but after that I don't feel any effects.

Hope one of these may help you out!

DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3 & L-3/4, fibromyalgia, polymyalgia rheumatica

Veteran Member

Date Joined Mar 2011
Total Posts : 816
   Posted 11/18/2011 1:50 PM (GMT -6)   
Hi Daniel, Kathy/nini here, I finally fell asleep at about 5am, just after I ordered a movie to watch, (thats what is called buzzard luck) frankly, I dont care about wasting 2.99 for a movie and then sleeping through it, the fact that I slept was enough for me.
I am certainly not a doctor, but have seen many over the years, I suggest a Pain Management Doctor/Clinic, try to find a doctor though as the very word clinic send shivers down the spineless people who regulate, well are supposed to regulate the clinics.  So try to find a pm doctor, I cannot imagine any pm doctor who cares about her/his patients refusing you help.  I do hope that nurse called the AMA about the doctor who told you he couldnt help you kid.  Sadly I cannot call him what I would like to, but use your imagination.
You are so young to have to live like this, and as much as you would like to strike out on your own, I as a mother understand her worries, also dont you think you will need help now and again.  Maybe a roomate instead of just you living totally on your own, sorry thats the mom in me.  Your story really motivated me to start a letter writing campaign to all elected officials out there.  Also, your local newspaper might be interested in how badly you are being treated, like not being treated for your pain at all.  Elected officials and doctors do not like to see there names in the paper attached to the kind of treatment you have not been given.
Hang in there young man, we all have to fight for our rights, and the sooner the better, (can you tell I am an old hippie), I have marched up and down Constitution Ave. since I was 18, along time ago.
Good luck, keep coming back to this forum, its great and everyone will have some ideas for you.
Please take care,
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Regular Member

Date Joined Jul 2011
Total Posts : 101
   Posted 11/19/2011 12:11 AM (GMT -6)   
Hi Daniel.  I am so sorry for all the pain you have gone through.  And of all things to have pain from...your tush.  We all have one, so there's no need to be embarrassed, if you are...but I probably would be.  I totally agree with Kathy/Nini.  She has your back, that's for sure.  So be sure and listen to what that wise woman has to say.  Daniel, bless your heart...I, too, am just dumbfounded and so ANGRY at that doctor for calling you a junky who wants his candy.  What a poor excuse for a "doctor".  I guess Kathy said it all, though, so I won't elaborate.  But I just wanted to say I am here for you, too.  There are lots of folks on this site who will give you good advice.  I don't think it would be wrong for you to get a referral to a good pain management doctor...maybe you can refer yourself without a primary, but ask someone at the clinic.  You NEED some relief.  You NEED to be treated like a human being.  And you sound like a very wise person, beyond your years.  Please seek out a pain management doctor.  They don't just pass out pills, but they also do procedures to get you comfortable.  Then if the PM feels like you need to be referred to another specialist, maybe it will work out for you.  Have you had a GI consult?  I'm sure that was probably one of your first doctors.  I do hope they get this thing under control for you, Daniel.  When I was in nursing, we always ordered "sitz baths" for patients with hemmhoroid surgery.  They would sit in a basin of warm water mixed with some vinegar or saline or some soothing med.  Sometimes magnesium or something called Domeboro powder.  I know you can't sit in that 24/7 but it would sure feel soothing.  I just remember it from after giving birth...very soothing.
Daniel, don't give up.  You are so young and you have to take care of yourself.  I don't blame your Mom either for being tearful...I'd be the same with my kids.  No matter how old you are, you are still Momma's baby.  But do keep her in the loop, Daniel.  She deserves that, and so do you.  You need her support.  So please talk with her and let her in on what's going on with you.  I think you will feel better.  Come here often and you will meet lots of great folks with good advice.  Again, I'm so sorry for this pain your dealing with. I hope it gets better soon.
DDD, 3 bulging lumbar discs, bone spurs, facet joint arthrosis/sclerosis, osteoarthritis, possible fibromyalgia (my dr's are telling me that I "most likely" have fibro but won't actually diagnose it...)
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