Still Experiencing Pain After 7 Surgeries 3 Years Ago

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,

Kathy/nini

NiNi53 said...
Hello Daniel m my poor dear boy...



Kathy/nini

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.

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!

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.