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Narcotic bowel syndrome and Crohns

I've had Crohns for over 46 years (I feel so old!) I was diagnosed in 1970, had my first surgery in 1973. Since that time, I have had uncontrollable diarrhea, pain, nausea, fistulas, fissures, 6 major bowel resections, chronic abdominal pain and many other ailments. I would not touch any narcotics for years..I have had 14 addicts in my life and I've spent 28 years in Ala-non. They scared the hell out of me. However, as time has gone on and my disease has only gotten worse.(It recently spread to my stomach.) I had to stop working and go on disability. I had to have surgery on my foot. I happened to notice that when I was on pain meds, I did not have as much diarrhea. I told my Crohns dr and she explained that Vicodin slows the gut down so she put me on Vicodin. I have been on the same amount for about 15 years. I work with a pain doctor who I really like, He doesn't make me take anything higher than Vicodin. I have never abused my drugs. I take 4 Vicodin everyday. I do not get high, besides the fact that I can get actually get out of the house because the Vicodin slows my gut, I do not even feel sleepy. He has prescribed Liquid morphine for me to take when the pain gets really bad but I rarely use it. Its there to keep me out the ER. My frustration is this...if I do not take Vicodin, I don't leave my house because I can't get out the the bathroom. I have not had a formed poop for 48 years! No wait, I take that back. The only time I have had a semi formed poop was when I was in the hospital on heavy meds. Go figure. My GI tells me to stop taking the Vicodin. He says that all my symptoms are because I have a narcotic gut. I find this very hard to believe. I have been on every Crohns drug available,just finished taking Entyvio and it kinda put me in remission. I hated taking that drug, it was a nightmare.
How can I stop taking the one drug that gives me some quality of life? I still have diarrhea and I have pain...tell me what your experience is..what do you all think? I am confused. thank you all so very much..
 
A diagnosis of narcotic bowel syndrome must include all of the following:

Chronic or frequently recurring abdominal pain(b) that is treated with acute high-dose or chronic narcotics
The nature and intensity of the pain is not explained by a current or previous GI diagnosis(c)

Two or more of the following:
The pain worsens or incompletely resolves with continued or escalating dosages of narcotics
There is marked worsening of pain when the narcotic dose wanes and improvement when narcotics are re-instituted (soar and crash)
There is a progression of the frequency, duration, and intensity of pain episodes

(a) Criteria fulfilled for the last 3 months with symptom onset at least 6 months before diagnosis.

(b) Pain must occur most days.

(c) A patient may have a structural diagnosis (eg, inflammatory bowel disease, chronic pancreatitis), but the character or activity of the disease process is not sufficient to explain the pain.

From: https://www.iffgd.org/other-disorders/narcotic-bowel-syndrome.html

You really don't fit any of these categories since not only have you never increased your use of Vicodin, but you were in severe pain prior to beginning Vicodin. Opiates are prescribed by doctors to reduce diarrhea, which is what you are doing. I have no idea why your GI is even contemplating this diagnosis. Is he a new GI? His "new diagnosis" might be a result of new regulations for prescribing opiates, but you work with a pain management doctor (and you are a member of Ala-non) so you aren't remotely at risk of developing a problem. One of the problems with the opiate crisis is that lax monitoring got us to where we are, and new very strict laws might also result in needless suffering; we need a balanced approach.

To sum it up, then, you have crohn's, you've been in pain almost your entire life, and you take Vicodin to help prevent diarrhea. I think your GI is nuts.
 
Thank you so much for taking the time to give me a well researched response. I am very grateful. I have been seeing this doctor for about 15 years. I have always felt it was his "go to" answer whenever we hit a road block. Whenever he goes into his "you have a narcotic bowel" speech, I feel like I am the one causing my own illness. He says the reason I have diarrhea is because I take Vicodin that causes my bowel not to empty properly. He recently ordered a bowel emptying study. I always feel so shamed after I meet with him. When I was on Entyvio, I had such a horrible response, I had to take 100mg Benedryl to combat the IV infusion reaction I was having. I wanted to desperately continue this drug in hopes that I would achieve remission. The benedryl made me sick as a dog, I hate that damn drug but it kept my symptoms at bay. I did not achieve 100% remission as hoped but when I met with him, he yelled that he had never ordered 100mg of benedryl in his entire time as a physician. Again, I wondered what was wrong with me and I felt really put down. Like I was a drug addict..If he only knew how sick I got from that awful benedryl!! But again, it was like the Vicodin...I felt put down because he made me feel like I was doing something wrong. I was just trying to get thru the infusions...since my first surgery, my bowel has never emptied properly.
I really like him but at the last appt he brought in a psychiatrist! I admit since I had to give up my dog due to being sick all the time, I was a little depressed but the phychiatrist was there to talk about dealing with my pain with yoga, body work, massage. Geez...I told her I lived in SF while I was working F/T and I could afford all of that stuff, been there, done everything I could afford. I told her I would be happy to go to yoga, have massages and body work if she'd like to pay for it..I live on disability. Again..subtle message, there is something wrong with me cause I take narcotics.
I cant tell you how much I appreciate your reply. I think its time to get a new GI...you know whats funny? The GI I had in SF wanted me to go on extended release morphine. He said, it will slow down your gut enough and maybe help with the pain...clearly he did not think I had a narcotic gut..he felt I would be helped my taking more. I said no.
 
I'm so sorry your GI treats you this way. A good doctor is supposed to be a partner as you (both) figure out what is wrong and determine what remedies to try--with any issue or illness. It honestly sounds as if he doesn't want to have to treat you because your case is not responsive to many medications. I also don't understand how he can diagnose you with narcotic bowel when you aren't constipated. I'm sorry you'll have to find a new GI; switching physicians can be a difficult process. My GP and I aren't quite in sync about my issues but I am hoping that will improve. I am also really shocked that he would bring a psychiatrist to your appointment. That is completely inappropriate. Just because he can't see what is going on inside you doesn't mean you aren't suffering. So many crohn's patients have normal blood work and imaging and find out things are still very bad on the inside. I wish you the very best. Perhaps your pain management doctor can suggest a new practice for you.
 

Bufford

Well-known member
As patients we are the real victims of the new war waged by politicians invading our medicine cabinets. The patients are the ones who lose when our doctors are not willing to prescribe the pain meds we use as tools to control the scourge with in.
I have had run ins with doctors unwilling to prescribe and I have fired them literally. I tend to remain in control when I am in the doctor's office, and the doctors I have now work with me rather than try to do the nanny thing. I find that percocet which is similar to viocodin to work very well to both firm up my BMs and to provide a reasonable quality of life. I take two daily, and it takes away the pain and allows me to have a clear mind. I have been doing this for over 15 years.
During that time my GI retired and I went for several months without any percocet and life was miserable. Watery BMs returned, the pain made life miserable and the nights were terrible.
Persistence on my part and with a new family doctor she connected me with a pain management doctor, and I went back on percocet then my life became reasonable again.
 
This so true. I have had Crohns for over 46 years. I have been disbelieved even as a teenager struggling to grow up, let alone deal with my pain. Since then, I have been called an addict, drug seeker, you name it. So on top of everything else we have to deal with..now I'm told I have this narcotic gut and I should get off of the narcotics! As you read, I am hardly an addict or even drug seeker..but when I am flaring, I hurt and seek relief. Several appt ago, this doctor said, Look, let's just accept you'll be on pain meds for the rest of your life. Like you, narcotics in doses that fit my size, weight..I'm 5'3", 110...is my lifeline! Even with narcotics I still have awful diarrhea but I've had it most of my life starting at 14!! Now at 59, you'd think I could deal with it but I gotta have a darn life! I do not get high from taking Vicodin..It's like all the others meds I take, no effect at all. But it does slow my gut a bit and for that I am grateful.
Do you have chronic pain? I've had 6-7 bowel resections...of course my gut is screwed up, for heavens sake.
I really appreciate your response...this is a tough subject for us all...
hugs to you and your tummy..
 
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