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Crohn's Disease Forum » Your Story » Who says Crohn's and Opiates don't mix?


03-14-2012, 12:27 PM   #1
goldbrick911
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Who says Crohn's and Opiates don't mix?

I just had to come into this forum to address a thread that I just read. Someone in the forum just stated that intestinal health and opiates don't mix well. My belief is that they were MADE FOR EACH OTHER in my case. Let me explain it.

I am a 63 year old male of western European decent (mostly Irish and German) born in America (Texas). I guess that's in America! I am sure I have one of the 3 most prevalent gene defects associated with Crohn's as I have been tested for Amoloidosis and some protein defects have been verified that relate to Crohn's and these defects. I have had 2 resection surgeries with some large amounts of colon and all of my ileum removed. But, thank goodness, I still don't have a bag. What I do have are all the symptoms of Short Bowel Syndrome, in spades. I have dealt with these symptoms for at least 40 years!! I have a 12cm ribbon stricture and an anal fissure that cause much pain and bowel discharge, if not controlled. I have also been blessed with small nerve ending neuropathy in my feet and hands, which causes sharp pain from time to time. I have worked full time, or tried to, for the last 45 years in 2 primary environments. The first was ~41 years in the IT environment as a Technical Architect/Director. My last 2 years have been spent as a corrections officer in Texas. As such, I work in an environment that is 10 to 20 times the national rate for diseases such as Hepatitis B and C, Tuberculosis, and HIV/AIDS. I cannot afford to take things like Steroids or immune system suppressors; Nothing that affects the inflammatory process or my immune system will be used.

Now let's talk about what Crohn's disease does. I'm sure most of you know this, but for some of you, you are about to learn something. Basically, my immune system attacks my bowels at the blood barrier where my digested food nutrients move into my blood stream for assimilation at the cell level. When my immune system attacks my small bowel mucosa, it creates inflamed and dead mucosa, little open bloody wombs. These wombs are essentially dead special function flesh, which ends up as bloody waste in my stool, which has been nothing but watery for 40 years. I have alternating bouts with red blood cell anemia and B vitamin deficiences, for which I take B12 injections. When these areas of inflammation heal, they deposit scar tissue inward into the bowel. Eventually, these bouts will build up enough scar tissue to produce a full bowel obstruction. That results in emergency surgery. I have had 2 of these.

I have used several medications over the years, with less than satisfactory results. These are Sulfasalazine, Donnatal, Asacol, Pentasa, and Prednisone. Once I started taking opiates for pain and cronic diarrhea, all of that changed. Opiates break down the parastaltic process in the bowels and produces somewhat of a fribulatory process in the bowels which lets food stay in the bowel much longer and absolutely ends up delivering the only assemblance of a firm bowel movement I HAVE EVER KNOWN. Obviously, it also alleviates the pain caused by my ribbon stricture and my anal fissure. It also alleviated most of the pain from the small nerve damage. Most importantly, it breaks the cycle of cronic inflammation which eventually ends up in emergency surgery. For me, it is a miracle drug. I am convinced I would be dead by now without it. Remember, I work in an environment where disease is rampant. Therefore, I won't use anything stronger in the Crohn's medicine chain than the 5ASA medications, which don't work well enough for me.

I am willing, at age 63, to fully accept ANY long term effect that using opiates puts on me, including addition and any wasting process or organ risk negatives that might develop as a result of using opiates for the rest of my life. Luckily, my liver enzymes have always tested good up to this point!

I would love it if a genius concerning Crohn's would come onto this forum and debate me on my position in life and my position with relation to how I am managing this disease and use his/her knowledge to show me how it is more intelligent to take another approach.

Love and kisses - Live long and prosper!!


Goldbrick911
03-14-2012, 12:43 PM   #2
chrisnsteph1022
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No debates from me. Oxycodone is my go-to pain reliever. However, it doesn't seem to make a difference in my bowel movements.
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03-14-2012, 09:07 PM   #3
David
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Hi there and welcome to our little community! Thank you for sharing your story. You've got me curious about the thread that originally brought you here. Can you by chance link me to it?

You mentioned the peripheral neuropathy in your hands due to the B12 deficiency. How often are you taking injections and what was your B12 level the last time you were tested?

Also, you mentioned a "ribbon stricture". I'm familiar with what a stricture is, but not specifically what a ribbon stricture is. Could you please educate us?

As for opiates, there's a time and a place for them. Sounds like you're at that time and place so no debate here

All my best to you.
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03-14-2012, 10:38 PM   #4
handle
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Whatever works for you Goldbrick911!

Opiates certainly assist with pain relief and also, as a consequence of binding to opioid receptors in the gut as well as the brain, disrupt peristalsis (as you stated.) The negative effect for some is that it causes constipation. Clearly in your case that is beneficial.
There is some evidence that opiates do have some immune suppression effects. Dendritic cells, which are part of the innate immune system, display opiate receptors.

Have you considered also using one of the Biologic meds? They do suppress a part of the immune system, but can be highly beneficial to treating the Crohns. Getting the inflammatory process regulated is a good trade off for having some immune modulation. Being in good health, even though taking a Biologic, is considered more beneficial than being in worse health without modulation.

You seem to be comfortable with your management of the illness, so there is no great need to alter your path!

all the best.
03-14-2012, 11:10 PM   #5
Lorimichelle85
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I love when they put me on opiates like oxycodone or dialaudid because Im not in the bathroom 20 times daily... And they help with the pain... I wish my GI doc was a smart as you.. They always say pain medications are horrible for your disease and I just want to scream and tell them then you live with it then!!!! My GI wants me to go to pain management because he refuses to perscribe any narcotic meds... Its the people put that that abuse these drugs and dont even know what pain is that ruin it for the people like us... And also make ER docs look at us as drug seekers.... If they could just live with this disease for 24 hours I think that would change... I really glad to see someone step up and Talk some sense... LOL
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03-14-2012, 11:52 PM   #6
Steven
 
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I've been taking vicodin and it definetly slows down my digestive system.. Seems to help.. I use to have at least 4-5 bm' s a day.. I now only have 1-2 a day.. I'm just not a big fan of how it makes me feel.. Kinda makes my head loopy..
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DX- Crohns Ileitis March 2012
Current Meds-
Humira (adalimumab) - 40mg every 2 weeks
Florastor (Probiotic) - 250mg 2x a day
Ambient (Zolpidem) - 10mg As needed for Insomnia
Vicodin (Hydrocodone) - 7.5/500mg As needed for Pain
Previous Meds-
Flagyl (Metronidazole) - 500mg 3x day
Apriso (Mesalamine) - .375mg 4x day (no effect)
Lialda (Mesalamine) - 1.2g 2x a day (no effect)
03-14-2012, 11:59 PM   #7
tots
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How else but with pain medications can you live through the night? There is NOTHING like it in the world for me! I have had three kids one with no pain meds at all. One c-section no pain meds after surg. I think I am pretty tough but- the cramps I get with Crohns is off the chart. Forget the 1-10 chart. I agree with the post above the ER's do question our real purpose. Usually once they take my blood pressure they know I am in real pain. Can't hide it then!

I am not sure I ever put as much thought into it as goldbrick911 but- I know what I need and it helps as long as I take the lowest dose for me. I don't like feeling the pain meds in my head! I try only 1/2 of one pill at time. For me I dont need to take all the pain away because I think thats an important tool for "us" to listen to our bodies and hopefully know when to seek help.

Good luck!
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03-15-2012, 01:36 AM   #8
kllyeve
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Whatever is going on at the cellular level that is beneficial to some to decrease bowel movements is a bonus. I just don't think we should suffer with pain. Pain robs of us quality of life.

I was prescribed tramacet to help avoid repetitive partial bowel obsructions - when the pain started I took it and relaxed the bowel enough to avoid it from progressing. When the pain of the Crohn's in my termianl ileum, I took it to be able to sleep at night.

I do not understand how any doctor could let us suffer.
03-15-2012, 06:16 AM   #9
goldbrick911
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I see that I may have opened Pandora's box! - But only a little bit. As you can see by my initial post, I wanted some of that. It can end up being good for all of us.

I would, however, like to say a few things to try to get off on the right foot with all of you. First, David - I haven't reviewed the sight tour guide yet, so I will probably be a little slow in getting things right on this sight. But I will get it soon. Also, to all, I do work full time, thank goodness. No posting at work! David - I was looking for approaches taken by medical professionals, on the WEB, to controlling my particular position within our millstone of Crohn's and this sight came up high in one of my Google Chrome searches. Once I landed here I loved what I was reading here compared to what I see on other sights, so I decided to join. I'm a type 'A' so I need some balance in my life and I think this sight may help. I hope I can continue to learn and help in some small way. A "ribbon stricture" is just what some GI doctors call an extensive amount (12cm or about 5 inches in my case) of small bowel that has become inflamed so many times that it has scarred inward to the point of almost obstructing. The actual small bowel is not really the size of a ribbon, it just presents that way under Barium review. That section of the small bowel does become inflexible due to the scar tissue and then digestion becomes painful. Its sort of like filling the tubes with a sausage stuffer and coming to an eye dropper with the rubber piece removed in series with the tube! Ha!-Ha! - Lots of Fun. As for the neuropathy, its not identical to the kind that diabetics get. We still have good blood flow in our peripheries, especially since I have been taking 1 aspirin every morning for 33 years. Mine is because all of my ileum is good, which is where the 'B' complex (including Folic Acid which is B6 I believe) is absorbed. I take a pretty heavy shot (1ml=1000mcg/ml) subcutaneous every weekend. My B12 bloodwork always comes back good now. David - When you can, help me become more effective on this sight in any way you see it needed. Thanks.

Some of you were so grateful that I was such a strong advocate of Opiates. They can be a wonderful tool to manage the violence in our bowels that promotes the scar tissue that leads to obstruction. But, please beware!! Mr. Opium is truly a tool taken from God through the Devil's Workshop! Mr. Opium's negatives are slow and subtle but can be deadly. The first thing I noticed, over time, is thinking I needed more. Don't you believe it! Your body doesn't need more to produce the requirement, your mind just thinks you do. The second thing I noticed is that you start losing muscle tone - a sort of wasting! This is because Mr. Opium wants to fribulate all smooth muscle to a certain degree. A smooth muscle has to make full strokes to maintain its tone, sort of like a piston stroke. So, we should all exercise some. Good exercise will allow us to produce our own endorphins and thus help us from feeling we need so much of Mr. Opium's bombardments. See - It can all work but, like everything else good, it must be managed. Too much of a good thing blah, blah, blah. Believe me. I have had my ups and downs with Mr. Opium over the years, but I am now controlling him the best anyone can. I won't bore you with any more details on him but to tell you he continues to work in other parts of your body while you sleep. His euphoria is a setup. Use him only when needed and tell HIM when we are going to stop! I truly am sorry for that preaching, but he is a double edged sword. I am 63 and am willing to play his game right now.

handle - That is new info. for me and I will be looking into it where I can. Any info. you can provide will be graciously accepted. I admit that I stopped looking at the genetic level when they thought I had Amoloidosis. It scared the daylights out of me. The first blockage in 1973, they thought I had cancer. Pathology came back Crohn's. Hallahlujah! Then the second obstruction. No problem. Hurry up and cut. Then they gave me the 'A' word and said 2 years and I went to my knees. Luckily, it came back negative after 3 bone marrow samples. ALWAYS FUN. Anyway, please help me with any genetic insights you might have. I feel that knowledge is always a soother for me. Also, are you referring to Remicade and the like? Please reply.

To kllyeve, tots, Steven, Lorimichelle85, and chrisnsteph1022 I agree. If we aren't bold enough to demand to be able to have some 'quality of life', then what's the use? Be bold and beat on the table. I don't care how many drug addicts there are out there, FDA. You WILL give me what I need and you WILL also help me manage it! As usual, they try to take control of something that is dangerous and when it gets tough, they want to take the easy way out and throw out the baby with the bath water. Typical worthless bureaucrats.

TO ALL - This is the last time I will dwell on all the details of my life with Crohn's. PROMISE!

As always - Love and Kisses

Live long and prosper


Goldbrick911
03-15-2012, 01:59 PM   #10
SuzInVa
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If we aren't bold enough to demand to be able to have some 'quality of life', then what's the use? Be bold and beat on the table.
Thank you for saying that! I've had leukemia for 15 years, managed fairly successfully with a daily oral chemo. I am VERY new to Crohn's but all of the options my first doctor gave to me are just not workable in my situation. He refused to understand that. So, he's fired and I'm meeting with doc #2 next Wednesday. What I've learned in the past 15 years is that quality of life is everything. If I can't actually live my life the way I want, what's the point? I don't want to do anything that will cause me to just exist. I demand more than that. A lot of people just don't get that, they think you should do anything just to be breathing and be grateful about it but that makes no sense to me. I certainly don't want to die but I don't want to just be existing and breathing either.

Good luck with it all,
Suzanne
03-15-2012, 08:47 PM   #11
goldbrick911
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Well said, sister!!!!!!!!!!!!!!!!!

Love and kisses

Live long and prosper


Goldbrick911
11-30-2017, 12:32 PM   #12
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Opiates get me down to even 1 BM a day. Solid, pain free. I mean the burning hot coals are not only gone, but the rest is fine. The "opioid epidemic" craziness on the news is scaring my doctors. Especially my Pain Management doctor. They won't prescribe more, and what they give me doesn't last very long. I don't use it to get "high". I use it to stop the (expletives) diarrhea, the hot coals above my groin, and the stingers below my ribs. Sometimes it takes "more", and more times less.
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