I am 5 weeks post j-pouch surgery (#1 step) and I am still having constant pain on my back, buttocks and down my legs. It is constant and severe requiring narcotics every 4 hours. It almost feels like nerve pain. It is really debilitating. I have had all kinds of tests and everything came back normal as far as the pouch (no abscess, fistula, etc). I feel like the drs. think I am a "baby" and that I am just healing. Anyone else with this kind of pain (almost like nerve pain down back and legs, constant and severe)? Did it get better with time? Help!

Hi Pat,
It is so interesting and puzzling to me at the same time the number of complaints I`ve read about the back pain and down the legs.I have also experienced exactly what you are describing but mine is on and off and tends to switch from one side to the other that is to say down one leg then at other times the other one.It has never occured in both legs at the same time,I don`t know what I would do if it did!!!.The pain is unbelievable like you say.I`ve gone to several doctors about it with no results.Finally I got to see a Dr.Goldstein who deals in this area of pain.He did x-rays,cat scans and a MRI.It came back that I have degenerative disk disease in the 3rd and fourth lower lumbar vertebrea(sp).The disk is shaped like a horseshoe instead of being round like it should be.This is pressing on the nerves on either side of my spine when I am having my pain episodes.He said it is not to the point of needing surgery but in time it might.But seeing posts such as yours and other ones I`ve read it makes me wonder if in deed it has to do with the jpouch and not what I was told.I really don`t remember getting the kind of pain I`ve had in my back and dowm my legs prior to jpouch surgery.So I wonder if there is a corrolation between what we describe with the pain and all and the jpouch.Maybe they should a study about it.Good luck with your situation.
P.S.I forgot to mention that I am on Oxycontin for another pain problem and it does not do anything for my back pain when it happens.I have to get a kind of muscle relaxer,Volterin,to help me with the pain.

Patricia, I had severe back pain for six weeks that would sometimes radiate down my butt to my legs but was mostly confined to my back. I could relieve it by lying down, but if I stood for even 5 minutes I was in intense pain. My doc said more than likely it was because of all of the awkward positions I was put in during the surgery which lasted 5-6 hours. I also took pain meds (not every 4 hours, but a couple a day) and had massages 3 different times. The massage therapist kept saying my back muscles were super tight. After 6 weeks the pain began to decrease and now it never hurts.

I had severe back pain right after surgery which was also attributed to the akward position of the body during surgery. The back pain was far more painful than the incisional pain as I recall. My surgeon put me on a very serious anti-inflammatory that was administered throught the IV. I don't recall the name of the drug but I do recall that it is a drug you can only safely take for 3 days. At the time I thought it might be a tad overkill but now in hindsight I am happy to not have suffered with that particular back pain in recovery.

Sue

I had my original surgery in 2002 and suffered from the exact pain you are describing for about a year after my surgery. Again I was told and do believe it was from the surgery, mine was 9 hours as I had laproscropic and before surgery did have back pain on and off. After about six months post surgery and the surgeon could not find any reason for the pain I went to a chiropractor and massage therapist. Finally got relieve after about 3 months of frequent visits to them. Again after step 2 of surgery I had the back and leg pain return. I to this day continue with therapy as I do have a disk problem as well. I guess the time on the operating table has a lot to do with pain after if you have any spine problems. There is alot of pressure put on the spine during surgery. Please know that it will get better with time although you may need to seek some sort of therapy. Best of luck.

Patricia,
I suffered the same pain you did after shoulder surgery which was only two hours. The dr was surprised that I thought it could be as a result of the position during surgery. These postings here just validate my thoughts btw. The pain was so very bad at times and would actually awaken me frequently during the evening and I would have to get up and walk since lying down was more painful. It went away after about 6 months. I had physical therapy for awhile but in the end I believe it was just time that healed. I would take hot baths, ice and take an occasional anti-inflammatory. Hope you feel better soon.

I also had horrible pain in my hips and down my legs. It got worse as I weaned off of steroids after my first surgery. My doctor placed me on Celebrex after telling me that it should go away within a year. I took Celebrex for four months (which was like a miracle for me and took away 90% of the pain), and when I stopped taking it the pain was almost gone.

My doctor was right... by my year anniversary, there was no more pain. And today I jog and have no problems.

-Nicole

I have been suffering from the same pains and have been diagnosesed with either siatic nerve pinch of displace hip joint...either way it hurts like hell....I have been seeing a chiro and he says that it is related to the removal of the colon and the body compensating for missing organs???? as well as the creation of the pouch. all I know is that I want to take a hammer to my hip every night...I can barely get to sleep or fine a comfortable position. If someone tells me that it will go away after a year I will be thrilled!
Sharon

I had a subtotal colectomy. No pouch. I have been experiencing these back and leg pains since the surgery in 2001. They are finally telling me after 7 years that it could be from where the colon was removed, it is attached to the nerves in your back. My pain is more in the T-spine area, which they say is one of the areas that it is attached. My legs hurt like I have ran a mile. Pretty scary that the medical profession does not know this, and they act like we are crazy experiencing these things. I am just glad to know that there are others, and that confirms for sure my feelings. Unfortunately, they have told me that there isn't anything that they can do about the pain. Thanks for posting your info....

Ive had the same for 8 years easy. Very painful on certain days and especially stressful ones.
I am hoping it is my KP or scar tissue. I am going in for surgery for either an Ileo or temp, disconnect from the KP. I think with me having Crohns, that is is an autoimmune disease and my immune system is causing the pain. Not a Dr., but I have heard others had these issues and they went away with their pouch being removed.
No ONE knows, so I will pray your pain will go away soon!

My back/buttocks/leg pain was caused by a disk problem, as well. Several times the pain was so intense I couldn't stand straight up at all. The only relief I got was from having an epidural (I think that's what it was) which totally relieved the pain. A series of two of them about two weeks apart left me pain free for a year and a half. Then I repeated the treatment when the pain became unbearable again. I've done this three times. Physical therapy and message also helped but the injections worked more quickly for me.