Pain clinic

 I am in the exact same place as you are. I had my take down Oct 19 2016 and I have gotten cut off too. I wasn't taking massive amounts either. Maybe 15 -35 mgs of Oxycontin or hydro -codone a day to help out with the pain and misery of a constant  flow of lava and broken glass coming out of my bottom. Then off for a week then back on for a few days when a flare would come back. Real hit and miss process yet always terrified I would someday be without any pain meds. The detox each time  I came off of them was a bear also. What I have found out this week is  10 mgs of oxy a day does keep me off toilet 30 times a day. It brings it down to 10 times. I'm talking with my Dr. tomorrow about pain management or something.I have to have these narcotics in a small dose to function. I believe a doctor must refer you to the clinic.

 Dont let ANYONE beat you up about," You shouldn't still hurt" or "should be better by now" or what ever. They don't know what is what. Even the doctors don't understand this kind of pain. I've had my J- pouch now for 90 days and going to the bathroom 20-30 times a day re-injures it in alot of ways, and keeps it sore and tender inside and outside. The first year with a j-pouch is a big adjustment period. It's all a process but pain makes it take longer. Hang in there and I'm praying for you. Drew    

   P.S. Don't EVER throw your pain meds away. They are good long after the expiration date also. I did that at first when I didn't need them anymore. Big mistake. Our disease is very unpredictable and you may really need them and cant get any because the D.E.A. is threatening to take everything your doctor owns in a court battle because he was only trying to help you with prescriptions of relief.

Drew, 

have you tried taking Imodium to help thicken up bowel movements? This should help it not be as painful and result in a thicker consistency.. is the takedown painful? I have it at the end of the month so was curious how it works out post op.. I'm sure it's horrible. 

Well I guess I'll find out think week I just don't wanna sound like a junkie asking for more but I have no choice. I was given a relatively weak mg at 5 by my dr anyways, had to take at least 2 to get any relief . And that was every 4-6 hours. If I had been given a stronger mg maybe I wouldn't be using so many pills as I would need less. 

Ok so I don't want to be negative. I do want to tell you my truth and my facts about it all if you want to know.

I'd rather be told straight up than sugar coated haha. Just wondering how the bowel movements return, if the watery stools burns like it would on your skin during a aooliance change, that's why I mentioned taking Imodium . How the pain of this surgery compares to getting your colon and rectum removed. How long you may use the bathroom on yourself before the joking starts to expand and you gain control of it. Basically everything. I'm almost at the finish line I hope and just want to know what to expect

FIRST OF ALL YOUR BODY MAY BE DIFFERENT AND MORE HEALTHY THAN MINE.  Surgery pain not bad. in hospital one day. Liquid diarrhea for last 100 days. Gotta have pain meds at all cost for first 60 days.Beg, borrow ,steal,lie to get them! Lots of burning,gas, itching,first 90 days .  SUICIDE TYPE PAIN.I can control output though. no crapping pants. no accidents. I still wear a diaper at night because of leaks and accidents. Acid is the problem. Colon processed the digestive acids. Small intestines arent designed to and don't want to hold stool so they are always trying to get it out. I dont know how old you are,male or female I think this process is harder on women because of kids or trying to start a family.I'm a 52 year old man who knows of people who had this surgery at 2 and a half years old and 12 years old 23 years old. I couldn't have done it I don't think. So things for me are SLOWLY improving. Acid does burn internally and around anus. Gotta keep it clean I take 3 baths a day to soak. I've had hemorrhoids from hell and mental angist. This disease changes our mental chemistry because of the constant trauma and PTSD. I have heard people who continue to struggle for years and years with blockages, fistulas, infections, pouchitis add infinitum...we are never done. There is no finish line. We just all try to help each other.My life has changed course. What used to be important isn't important anymore. What is important now is trying to be of service. Trying to put more into the stream of life. I pray to the powers that be to try to find meaning and to see the allNess within the illness. Im here with any questions. Good luck and I'll be praying for you. I'll be fishing in Panama when you are in recovery. I've been planning this trip since Feb 5 2016 the day I had my colon removed!

This may be overly simplistic, but after having so many skin problems, I saw a dermatologist who really helped me figure out my skin issues, as I was always raw down there.  It was truly awful, painful.

In addition to the acidity of my output having bad effects on my skin around my anus, I found out that I was allergic to a ton of stuff which was making it worse (things like tomatoes!).  I assume that the allergy thing isn't the norm for most people (although I was shocked at my outcome).  

A very simple suggestion the doc had for me was very helpful.  I put vaseline around my rectum before and after each bowel movement.  It serves as a barrier and doesn't have any long term effects (some barriers that I've purchased seem to have magical properties initially but with using it so frequently, it caused my skin to break down, which made everything 1000% worse - which I didn't think was even possible).

Not sure if the vaseline will help you but it is something to consider.

Good luck!

Yes I use Vasaline alot and Calmoseptine also. Thank you about the allergic reactions to food that is helpful bigtime!

Well I just found out I won't  get any more pain Meds prescribed til my take down in about 4 weeks most likely .. how do I go about asking for a referral to a pain clinic?

Your dr must refer you I believe

 Call the nearest one to  and see what the requirements are.

Call nearest pain clinic to see what the process is

I was told I need a referral. I don't know what to tell my doctor when I ask for a referall. Could my surgeon deny writing a referral?

I doubt they can deny a referral due to the fact I just had my total colectomy and rectum removed along with j pouch creation. I feel like it would be shady to deny and go along the routes of malpractice..but not quite there

I didn't understand 

I don't think they will deny you. Find out tomorrow for sure. Pain management clinic is watched more closely and gets Dr's off hook. 

Here is the story about pain clinics.  There are none!  Unless you have back pain or neck pain, no doctor will take on surgical pain.  Who ever said that the DEA will cut you off is correct.  They best I can suggest is medical weed!  Don't know how to spell, haha!  My son, as many of you know has gone to hell and back with all the complications and issues he has had over the last 30 months.  Getting drugs was extremely difficult.  It was only because of a friend of a friend did someone take him on.  He was recommended for the medical m........ stuff but didn't want it.  He was able to get fentinal patches which helped a little bit.  But trying to get the stuff is darn near impossible thanks to the opioid addiction.  What the DEA doesn't realize is that the pain is real and not everyone has an addictive personality.  Go after McKesson Pharmaceutical and leave the rest of us alone.  Getting medication is getting harder and harder every month.  Good luck and best wishes for a speedy recovery.  This surgery is awful.

Wow. God bless you and your son. 

Jeffs mom, I have friends who have had surgery and after surgery is done and the doctor cuts them off the pain management clinics will continue to treat the pain and try to figure out the cause of the pain other than the obvious time you need to heal. That's how I came across this method. They specialize in pain as well which is why the DEA isn't harassing them as much since it's a norm for them. I have no medical weed in Georgia , but I do smoke it regardless. If it was legal and insurance covered it I'd just smoke for my pain and not need the narcotics. Unfortunately in the world we live in the big pharmacy wants the patients to get addicted it's a billion dollar industry and they have no interest or care for the patients. There only goal is to sell more drugs. 

Any opioid loses its effectiveness quickly.  The longer you do them the more you need to kill the pain.  And to tell you the truth.  They are useless for the pain we have.  I know.  It barely took the edge off when I got out of the hospital.  And I was in 8 weeks total.  In the hospital I was given enough.  I was given oxycotin.  And hydrocodone when I left.  Still had tremendous pain.  Patches too.  

As long as I was in the hospital the pain was under control.  Once I left.  I was in pain constantly.  No pill.  Patch.  Would take it away.  Just time. 

My experience and mine only.  Everyone is different. 

R. 

I just read the whole thread again and I must admit that I am a little lost and confused by some of the stuff...I had my kpouch done in 3 steps...that was after having 2 gracillis muscle grafts (pain that would send Hercules crying to momma) and more rectal surgery than you can ever imagine...plus I have had over a dozen revisions for all sorts of complications including dreaded fissures (hell, hell, hell has no name compared to intubating through a fissure!), a sunk valve that I had to rip open every time I needed to empty my pouch and 6 hernia repairs...(I have missed a few here)....

I have rarely, if ever, stayed on 'real' pain meds past a week or 2 post op (not that they would ever give them to me here)...I got tylenol 3 for 1 week to slow output and survive a bit, then step down to tylenol 2 followed by..."deal with it".

Pain meds do not help when you are running acid through your butt like a faucet...they do not touch that sort of pain...you need to be able to fix the problem that is causing it, not try to mask it. 

You need a 3 sided attack plan...thickening up the stool so that you are not dripping battery acid out your body (fiber chews, and thickening agents), changing up your diet so that you are making less battery acid (remove all sugars including fruits for a week to see if it helps you) and slowing down your bowels so that you are doing all of this less often (codeine, Lomotil, gravol.....).

By the way, Gravol (it goes by other names too but it is just OTC motion sickness medication that you can get in chewable form as well as pill and kids' dosage too)...it is a godsend...it slows your whole system down, makes you very sleepy (could be a problem for you if you are working or driving), somehow reduces the pain and is non-narcotic or addictive (I think)...it is my secret weapon.

You should also be using water not toilet paper to wash up down there...you are going to kill yourself with TP...if you don't have a bidet (and most people do not before this surgery) then get a squirt bottle of a hand held shower attachment...use a very mild, diluted down soap like baby wash, and a very, very, soft towel to dry yourself...it will reduce substantially the level of pain that you are suffering and the insane itching.

I know that this is not a miracle solution to what you are going through and not what you want but it the meantime it may just help you enough to survive without tearing your hair out.

Sharon