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Hi everybody. I had my J-Pouch manufactured in sept '02. with the takedown in december of that year. and apart from some minor flare ups, Ive been doing relatively well for 18 years. but about two years ago, things started getting bad, Pouchitis wouldn't go away so they changed my diagnosis from Colitis to Crohns. things got worse and I developed Perineal Fistulas. which HURT. I had two Seton Surgeries to repair them in the last year. anyway at every step along the way. each time I was WAY under prescribed pain meds. when I complained I was treated like a dope fiend. and the Docs it seems all just wanna cover their asses. I have been on and off Opiate pain meds for years, and have never had any addiction problems. Im just fortunate I guess. I dont have any sort of addictive gene or whatever. Im just not predisposed. Ive even been physically addicted to the opiates, but as soon as the pain stopped I went through withdrawal and dealt with it, and it wasn't an issue for me. My heart goes out to people who struggle with this. I know its very real, and I have no intention to belittle their suffering. But sometimes I need pain meds that aren't over the counter, and wish that I was considered responsible enough to make those decisions for myself. 

Anyway. I cant be alone here. what do you folks do for relief. I recently discovered Kratom, as it was very helpful in easing the symptoms of opiate withdrawal. But I think it may be CAUSING flare ups. has any had any experience with it?

 

Last edited by Cwyoming
Original Post

yeah, I have been through 12+ surgeries and 2 jpouches. I get pains all the time, probably adhesion pain, but I cannot ever get any kind of pain meds. I did have a short stint with pain management in the past and they were only giving me 5mg oxycodone qty 30 a month. I actually needed 10mg to even take the edge off most times. So I had to ration those pills. Some days I would not take if pain wasn't horrible just to have more for the bad days. Then I had to go down to main campus every month and get urine test and questioned like crazy to make sure I wasn't abusing. It was ridiculolus and I just stopped going and I just try and deal with the pain.. I shouldn't have to, and this is BS. I had no issues ever coming off of those pils aor the ton of pain meds they had no problem pumping into me while in the hospital.. I do not have an addictive personality either so it hasn't been an issue for me. I am seeing pain management again for my lower back pain as well as PT. I go back next month for a followup so I am going to talk to doc about if any chance I can go back on something. Maybe ask about Tramadol?? I really don't know too much about it.... is it easier to get prescribed??

@Safado posted:

 my Dr. says he prefers it for me since it's not as strong as other narcotics at least when it comes to how it affects my transit time in my bowels. 

Safado makes an important but often overlooked point on the impact of narcotics on transit times. Morphine caused my lieus after my colectomy. A few years ago, a friend and client of mine was taking oxycodone after a very serious two level anterior cervical discectomy surgery. I warned the client about the constipating effect of these medications.  The client, who has UC, told me, "I have UC and can't get constipated." 3 weeks later he texted me from the emergency room where he had to have a manual stool removal performed due to severe constipation. I believe the procedure is called manual fecal disimpaction. He said it was the worst pain of his life and that they "got medieval on my ass" (a play on the famous Ving Rhames line from Pulp Fiction). He learned a painful lesson on what narcotic pain meds do to your GI tract. It has a serious effect on motility which most people don't really understand until it happens to them. I kind of saw it coming after I spent Thanksgiving with him the week before and he was slurring his words throughout the day.

Last edited by CTBarrister

I had my J-pouch surgery 10 years ago.  I do suffer with  great pain now and then   I do take a half of a oxycodone.  That seems to help me get thru the night.  I never take it during the day.  There are some nights that I just can't take the pain.   I don't abuse it.  I can go thru weeks with out taking any.  I always try to eat what agrees with me.   I take many vitamins.  I haven't been able to gain weight because of my eating.  I am used to it now.  I was l30 lbs.  now I am 94 lbs and can't get passed that number   It used to bother me, it is what it is.  I am lucky that I am here.  Every now and then I go for the stretching in hospital.  It has changed my life somewhat.  I am happy that I can enjoy my family.  I always try to be upbeat.  My problems are mostly at night because of what I may be eating that just doesn't agree with me.  Sometimes I can eat the same thing and it doesn't bother me.   I still can't figure it out. I wish everyone well and I am also lucky and thankful to everyone that helped me thru this surgery   I found this sight on my own.  It saved my sanity after I came home from surgery.  Thank you again to all

 

 

 

 

 

 

 

 

 

 

 

As an alternative can you find maybe a doctor that would work in conjunction with your MD to prescribe CBD. My doctor said she couldn’t prescribe it, however,  to go to a very reputable place that sells it on my own, and get the kind that does not make you stoned.

It might be a safer alternative if you can’t get the pain medication.  It has helped so many people who I met at the pain management clinic.I’m just throwing it out there. Maybe it would be worth a try. 

@FRH posted:

As an alternative can you find maybe a doctor that would work in conjunction with your MD to prescribe CBD. My doctor said she couldn’t prescribe it, however,  to go to a very reputable place that sells it on my own, and get the kind that does not make you stoned.

It might be a safer alternative if you can’t get the pain medication.  It has helped so many people who I met at the pain management clinic.I’m just throwing it out there. Maybe it would be worth a try. 

You don't need a prescription for CBD, you can buy it anywhere.... Just make sure its a reputable company and not somewhere like Walmart or a grocery store... Unfortunately even a high dose of it did not help me any

@GraceB posted:

I had my J-pouch surgery 10 years ago.  I do suffer with  great pain now and then   I do take a half of a oxycodone.  That seems to help me get thru the night.  I never take it during the day.  There are some nights that I just can't take the pain.   I don't abuse it.  I can go thru weeks with out taking any.  I always try to eat what agrees with me.   I take many vitamins.  I haven't been able to gain weight because of my eating.  I am used to it now.  I was l30 lbs.  now I am 94 lbs and can't get passed that number   It used to bother me, it is what it is.  I am lucky that I am here.  Every now and then I go for the stretching in hospital.  It has changed my life somewhat.  I am happy that I can enjoy my family.  I always try to be upbeat.  My problems are mostly at night because of what I may be eating that just doesn't agree with me.  Sometimes I can eat the same thing and it doesn't bother me.   I still can't figure it out. I wish everyone well and I am also lucky and thankful to everyone that helped me thru this surgery   I found this sight on my own.  It saved my sanity after I came home from surgery.  Thank you again to all

 

 

 

 

 

 

 

 

 

 

 

@GraceB - I feel like you are describing exactly how I feel. I lost about 50 lbs. from my ostomy and j-pouch take down surgeries and after eight years I've only managed to gain back about 10 lbs. I'd love to gain some more weight but I can't eat enough so I've just accepted that this is how life is now. It still bothers me sometimes but I am lucky to be alive, be with my family, and be well enough to work. 

Some days things I eat don't bother me and then another day the same food does bother me. Just when I think I have it figured out some new problem pops up. It's nuts. Anyway, just thought I'd share because your post helped remind me that I'm not alone. 

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