I had my second surgery about 5 weeks ago. My first surgery I had my colon removed, my most recent I had my rectum removed along with my joking created. My takedown surgery will be at the end of February or early march. My Surgeon told me my due to regulations from DEA and what not he will have to cut me off. I'm still in pain, stitches steal pussing and healing, can't really drive etc. I have had family members mention going to a pain clinic as many people do when there surgerons can no longer prescribe pain meds. I don't see the whole point in stopping the pain meds if I'll be right back on them within a month? Does anyone have experience with a pain clinic ? Like what info I would have to show or tell them what documents I may need etc. I'm going to tell my surgeon I'd prefer to not go to a pain clinic but if that is my only choice I will have too. Please provide any information about a pain clinic and how it works. I don't need to be lectured about my pain or surgery I know I should feel better but since my last surgery I spent 3 weeks in the hospital, so I had complications. Thank you!
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.
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.
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.
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.
I'm not a weed smoker but does that truly work for the pain? I'd rather do that at nighttime after work since that is when symptoms are the worst then live on pain meds that don't work...
The weed works. You can get a pill version on line. It is legal in all 50 states. I just saw a story about it onCBS news last week. You are lucky you live in the south where you do have some plain clinics. I live in NJ and the we do not. I looked far and wide for one. There was only one and they were not taking new patients. My son ended up on a fentinal patch for three months and it helped. Then he had too many side effects and decided to get himself off of them. The issue here in the US is that these drugs are a gateway to addiction. And the DEA is trying to fix the issue in a global fashion. I had DEA asking me and the pharmacy all kinds of questions. I had to bring in my son's surgical records so the pharmacy could give to DEA. It was a pain but I really didn't care what they wanted as long has my son got the medication. There is a lot of controversy with these medications but we need need them but getting addicted is a major problem.
Thank you. Any idea of the proper website/company for the pill form? Might you have a link. I could see a lot of false companies out there.
Good explanation Karen.
As for opioids.
Needing and wanting are two different things.
As for weed. I think if you get caught in a state that it's illegal in. It's still illegal. And as for its effectiveness for pain. I don't think it's there. It acts like a placebo. If you think it will work. It will. It has other relaxing properties also. Not totally against that. Lol.
Marinol is one form of prescription cannabinoid. Use for pain is off label (at least for now). http://www.marinol.com There are studies that show it can help reduce the need/dose of pain meds.
It is highly regulated too. If you see one that is not prescription, it is not kosher. If you are in a legal cannabis state, you need to buy from a licensed distributor.
I saw on CBS news, I believe Dr. max Gomaz did the story about the cannibas. But I did see it on the news. If I figure it. Out, I will post it.
Just a update for those wondering about a pain clinic. I got my doctor to refer me to one, had all of my medical history (surgerys, medication,X-rays, hospitilizations, etc) sent over. I will start seeing a doctor in the pain management office next week! Lucky that Georgia has these. If anyone is curious if there state has one just google "pain clinic (your state) or pain management with your state and city and many will pop up. Hopefully all goes well and I have a good doctor. Also JEFFS MOM!!! Out of curiousity I googled "pain management clinics in New Jersey and tons of them came up, they just may be worded differently such as "chronic pain management of New Jersey" or "New Jersey pain consultants" and even "New Jersey pain management". I just thought I'd share this with you in case your son does in fact still experience pain from the dreadful surgeries! there are pain clinics in every state, they just have different names
I had my surgeries in 2007, with complications including obstructions and a pelvic abscess. I suffered with the painful, burning multiple bowel movements for 6 or 8 months. I tried Lomotil but it gave me gas, which meant more trips to the bathroom since I couldn't pass gas without passing liquid stool.
At some point, I was prescribed some oxycodone 5mg for pain and I noticed that it also slowed my gut down and reduced the frequency of BMs without giving me gas. After much testing by various GI specialists, with no conclusions or recommendations other than going back to the ostomy, I went to a rheumatologist. Not unusual, as they are experts in autoimmune disease. He immediately prescribed oxycodone up to 4 times per day, and a fentanyl patch to provide continuity. This reduced my BMs to a more manageable 12 to 14 times per 24 hours. By increasing the time food stays in my system, it reduced the undigested food and stomach acids coming out, which reduced the pain and irritation in the pouch and cuff. I continued to apply Calmoseptine after BMs for years, to reduce the burning sensation after a BM.
This allowed me to return to work (I was a nurse). It wasn't perfect; the oxycodone blood level goes up and down over 3 to 4 hours, but it was a vast improvement in both comfort and health.
I never had any problem obtaining these narcotics. My rheumatologist does not prescribe Oxycontin because he thinks it's too addictive, but he never questioned my use of what he prescribed. Over the years, as tolerance built, we would increase the dose slowly, but I never took large amounts. I don't even like the "high" effect of narcotics. By the time I retired, I was using a 25mg Fentanyl patch every 2 days and oxycodone 5mg about 4 times per day. Slowly, over the years, my body adjusted and I could do away with the Calmoseptine. I was generally more comfortable. Many foods that never bothered me before the surgery had to be eliminated, but I think everyone has different food sensitivities and you'll figure out yours.
I also started taking Metamucil twice a day in as little water as possible after breakfast and dinner. That helped to slow transit time and firm up the stool a little bit.
After I retired, I decided to see if I could get by without the narcotics. I slowly reduced them over about 3 or 4 months. It was unpleasant but bearable. After a few days without any narcotics, my bowel function settled down to about 10 bowel movements per 24 hours, with no more dysfunction than when I was on the narcotics.
This is my first time on this blog and I haven't seen any other posts about using narcotics to control bowel function after colectomy with J-pouch. My experience is that it allowed me to continue to work, gave me a reasonable quality of life, and allowed my digestive system the relief it needed to slowly adjust over a long period of time. Clearly, I was not an addict since I never liked the feeling when we initially increased my dose, and I got off of them as soon as I was physically able. I think any provider who does not consider opiates, with their profound "side-effect" of slowing bowel motility, as a feasible treatment option for patients with extreme discomfort and dysfunction due to J-pouch surgery is failing as a medical provider.
I am 64 years old and 10 years since surgery.
codeine also slows my BM's, unfortunately I haven't gotten lucky enough to find any doctors who would openly prescribe it for that purpose l... maybe after my takedown..
Codeine is the most constipating of the narcotics, so it may be the most effective for you at slowing your bowel. I couldn't take it because it made me nauseous. But if you can tolerate it, it could be very helpful.
I know we're in a time when prescription narcotics are coming under close scrutiny, but they are still used regularly to treat patients. I never had any of my doctors question my need for them or their usefulness in my treatment. I live in Seattle; maybe this is a more enlightened place when it comes to respecting patient needs. But I would certainly seek out another provider if my doctor refused to try a potentially beneficial treatment just because it was an opiate.
The classic opiate to slow the gut is deodorized tincture of opium. It can be hard to get a prescription, and hard to get a prescription filled, but it's extremely effective.