Narcotic Bowel Syndrome Please anyone

[ivgirl]

Has anyone else suffered from this? I was on high doses of pain killers for a back problem. Then my stomach gave out. I was told to ween off by 10 percent a week.The pain was insane. Then I still have my back pain too. I cannot get through the day without something for pain so my stomach has never really healed.I am now only taking one pain pill a day but my stomach has never been the same. They gave me a colonoscopy and I think that did something.My tolerance to pain meds was so high that the meds they give you for that didn't touch me so I screamed the whole way through.(360 MG OF OXYCODONE PLUS A MORHPINE BREAKTHOUGH)  can u believe it.!!!!!! Now I take 30 mg of morphine along with gabbapentin.Now I have Lupus SLE.Along with that they said That I contracted hep c from a tattoo. I have no life no energy. Before this I could handle my regular morning cramps because they always went away right after I went but now I feel like I am loosing control. My stool is pencil thin. I'm afraid, I just want my bowels to go back to the cramping in the morning that I could handle. I think I need my cramps for my stomach to work.the gi dr gave me domperadone and omeprazole but it is not good.I have found very little on line about this condition. I was very strong before working installing vinyl siding and had a wonderful life making good money.Sorry for the babble.

[fntn]

There are several osmotic treatments that you can use. I have used Miralax for many years without any issues, as have other friends of mine. If you need the pain therapy due to the real pain you are enduring, please keep in mind that you do have options wrt NBS. Btw, I have been on high dosages as well, all without any problems, once I used osmotic treatments.

[chezbo]

What are osmotic treatments. I tried miralax but didn't phase me. I take linzess daily and go daily but the gut pains never go away anymore. It's so terrible. take care

[mosler]

I've been on narcotics for 2 years for chronic pain & I developed NBS in addition to my other problems.  My primary physician had me get off the narcotics ( yes it's really hard but worth it).  The end result of this is I can't take any kind of pain reliever for anything ( not allowed to take NSAIDS either).  So, while that sounds unacceptable, my overall pain level is much better than when on the drugs.  My abdominal pain was as bad as having a gall stone attack.  All this just to say with NBS, if you insist on taking narcotics, you're going to make your life worse & worse.  Some people's intestinal pain sensors become hyperactivated from narcotics.  If you're one of them, the only relief is to stop.

[KARLADJ4U]

You're correct about that, because I have chronic Gastroparesis, complicated by Colon Cancer and was put on high doses of Opiods and I was miserable! My stomach is just getting somewhat normal after cold-turkey all Narcotics and I've been babying my stomach for months but I can see a difference! All of you have helped me so much and I hope we all get our normal G.I. function back soon!

[ivgirl]

i hope you are out there too.There seems to be alot more NBS suffering than when I first started with this over 3 years ago I am not going into too much about my physical because with NBS it just doesn't seem to matter what kind of crazy thing we have. Try to say on track with the bowel routine. I know it can be hard to do.I take lax a day or miralax everyday at night. Every single time I awaken I have severe stomach pain that does not go away until after a bm.I also take cascara and magnalox. I use candy ginger for stomach upset which is alot.Works great for nausea.What is one to do when in chronic pain. They had to give me an injections daily called narloxone the pain was so bad. It is usually reserved for people who are dying.500$a script. This was when my pain meds were much higher dose. They have come out with a new drug now its like oxy wrapped in narloxone cant remember what it was called but it made me feel like I was withdrawing times 20.Also get pain on top of head just like you its crazy and the doc thinks we are too sometimes which doesn't help.They say that to me too about the methadone but i only use 5 percs a day to help me copeand methadone is a narcotic too. I also take an acid reflux metrocloprimde which is supposed to help move gas and stool plaqunel for the lupus and sometiems gabbapentin for nerve pain but the gabba does little.I also have IBS which is why it is so painful in the mornings (the only time I can go.I have used so many things and your right it is no way to live. If you hear of anything or start to feel better I would love to hear you are I sure hope we all can get back to life soon take care Hope you guys are still out there. Take good care as you can

[Picb1967]

nothing helped me complete abstinence from any opiod or meds of any kind for approx 7-9 months little phenergan there or apain med here in ER when ill and I statred right back at square one with my NBS I stopped even over the counter drugs. Changed my diet to no junk fruits and vegetables with chicken and fish. Nothin fried except on great occassion after 9 months of still experiencing these symptoms I could tell they were finally leaving one little pill or other drug can totally restart the vicious circle and restart the problem. Now back to normal all over after 10months.

[chezbo]

I am so glad for you. Take care

[katydid711]

I have no idea if you're even still listed on here and will get this reply but I was reading your posts re: NBS and felt such a kindred spirit with you. I'm 35 and have Crohn's Disease. Two years ago I was put on oxycontin and percocet post-op but also my Internal Med doc decided to keep me on them because I've been complaining of abdominal pain for 2yrs. I swear that I have a stricture but with my surgical history no one will go in and specifically go get it. During my other surgeries abdominally they say they've looked around and didn't see a stricture, but I've had them before and the pain is exactly the same and in the same place. It's frustrating because no one will do anything about it.
At any rate, I take 60mgs of oxy every 8hrs and then 5-325mg percocets up to (6) tabs/day. I just had the first round of surgery for dental implants last week so now I'm on dilaudid at 4mg-6mg 4x/day on top of the oxy and percs.
My issue is that my GI docs all say 'get off the narcs and switch to Methadone', but my Internal Med doc wants me to stay with what I know because otherwise I'll have to go through the hospitalization for withdrawal. I hate having NBS because I get complacent and don't take the lactulose regularly and like today I'm sitting here with a belly that is looking as though I'm 5 months prego after taking 18 tablespoons (3 capfuls) of lactulose and to no avail. I still haven't gone!! I'm pushing fluids like there's no tomorrow and all I'm doing is making my gut more and more bloated, rolling and loud noise making.
Since your post have you had any resolution to your NBS issues, pain issues, etc???
It just ***** all-around and I'm not sure which path is the right path to use. I see so many posts from people who live with using lactulose, miralax, Mag Citrate or enemas. It's no way to live when you have kids and used to have energy. I used to run marathons up to 2yrs ago and then my Crohn's got the best of me, and now the narcotics have the best of me and seem to control every aspect of my day.
Thanks for sharing your experience and I hope you're still around to answer :-)  
You can email me at: ***@**** as well.
Thanks.
-Kate

[chezbo]

Thanks for your response Kate. No change in NBS. It is literally sucking the life out of me and now I am also in constant pain for 3 failed back surgeries(FBS) and 3 level. I read a lot of people are taking the meds they need and I am so happy for all. My pain Drs have cut and cut and cut to meet the DEA guidelines of 90mg equivalents of morphine which isn't much. I was taking close to what you are taking and now they have me at 5-10mg percocets a day. Dosen't help my chronic pain. Please keep writing as this is the only site I have had anyone respond and to talk to. Thanks Randy

[johnsgrlpeg]

Hopefully this will help.. I have been on fentanyl for 10 years now.  I have had 3 fusions from cspine to L spine.  My back is really bad, then all the sudden last year i started taking nexium twice a day and that wasn't helping my stomach it would hurt terribly when i would eat and then throughtout the rest of the day it would ache under chest bone in middle of stomache.  I also take percocets, neurotin, triazolam, zanaflex etc.  I got really sick in February of this year.  I couldn't eat without hurting to the point of vomiting especially after eating, nauseaed all day everyday and when I would stand I would feel wierd and my heart would start to race terrible and this got to the point I couldn't take it, I couldn't get out of bed with feeling like i would pass out.  It was terrible.  After many trips to dr's and hospital er, I was finally admitted on June 10, I was in for two weeks sick as dog.  I honestly thought I may have cancer.  Then after colonoscopy, ct scans, ultra sounds, light down into stomache and heart monitors and many many blood test, they decided I needed gallbladder out, however after it was removed no better just got worse, eventually I was diagnosed with NBS.  And just so you know, my situation is very unusual I cannot be taken off fentanyl period can't get out of bed without patches or meds.  My back is real bad, and I need two more plates in cspine and 1 in lspine, so they were giving me on top of all other meds I take dilaudid every three hours through IV.  This is what I know, meds made me worse much worse, this is what I done when I got home, it was bad but I decided after several more er visits for iv and nausea med that I had to come off of some of the med to stop some of this, so I took myself off everything but patches cold turkey, I honestly could not take that pain anymore, at that level.. It has made it tolerable, but you need to know this, I am off to Florida for my back surgeries and then once complete i have to come off the patch because it is doing most of the damage to my small intestine.  My food does not move down will not digest, which is why i get so sick and then because of meds I cannot use restroom at all.  This is what I take that makes it liveable for time being.  Amitiza (which moves food down) twice daily before I eat, it does work sometimes not quickly but it will move food.  I also take nexium twice daily 40mg each.  I also take 2 scoops of myralax to help with restroom and I also take sienna which is stool softner 2 to 4 pills morning and night.  This is the only way I can eat, and go to restroom.  It does work.  It's aggreviating but it keeps your pain where you can tolerate it.  And this is very important for me anyway, Phenegram have to have nausea medicine, or it want work.  I am constantly sick this helps greatly.  I am sorry this is so long, but hopefully this will help you.  And if I can give you more help let me know, I understand exactly what your going through and it's not anything I would wish on my worst enemy.

[chezbo]

My situation is somewhat identical. I have NBS and I can"t believe there is only 4 of us. My life is a nightmare. Can't go anywhere, can't stand, gut pain is horrendous makes me forget at times all my back issues. The literature about NBS says you can get it due to rapid increases in meds and due to new DEA guidelines we where cut very rapidly and that's when I got it along with so many others at my pain mgt. No Dr even tells me anything to do, or to try, eat or not eat. It is driving me insane. Anybody found anything that helps. I take linzess and am cut down to 5-10mg Percocet, way down from where I was. Any advice would be greatly appreciated.

[chezbo]

My situation is somewhat identical. I have NBS and I can"t believe there is only 4 of us. My life is a nightmare. Can't go anywhere, can't stand, gut pain is horrendous makes me forget at times all my back issues. The literature about NBS says you can get it due to rapid increases in meds and due to new DEA guidelines we where cut very rapidly and that's when I got it along with so many others at my pain mgt. No Dr even tells me anything to do, or to try, eat or not eat. It is driving me insane. Anybody found anything that helps. I take linzess and am cut down to 5-10mg Percocet, way down from where I was. Any advice would be greatly appreciated.