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PostPosted: Sun Oct 17, 2010 9:58 pm 
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Well I am new to this forum but not at all new to suboxone. I've been on sub for almost three years after being on hydrocodone from 17-19 yo and then oxycontin until my senior year of college. No legitimate reason, just got hooked on it.

Same thing happened with the sub, stayed on it for far longer now than I originally intended. For a long time everything was A-ok. Very few side effects to speak of. Somewhat irregular bowel movements, but nothing extraordinary. No hardcore (no pun intended) constipation, no pain passing stool, etc. The worst side effect was being able to fall asleep at night really, really easily:)

Well that all changed this past April. Out of the blue I started getting this dull stomach ache. Not sharp pains, but just this ever-present, CONSTANT (and I mean that in every sense of the word, no break whatsoever), dull pain in my lower abdomen. Went to all the requisite doctors. I was also getting this very slight burning sensation when I would urinate. Again, nothing outrageous, but enough to notice it, barely. Passing stool became more erratic but again, no hardcore constipation. When I would pass it was rocky, but again no pain or blood.

General practitioner, who is aware of my suboxone intake, thought I might have a bladder infection. Put me on bactrim. Horrible mistake, turns out I was allergic. Almost died, 104* fever, the lot. Got referred to a urologist. Put me on another antibiotic, can't remember the name of it. Wasn't a sulfa. No side effects, but no lessening of my problem.

Got referred to a gastroenterologist (sp). Informed him of my suboxone usage immediately. He didn't think it had anything to do with my problem (...). Strangely, he thought I had Crohn's Disease and wanted to do a colonoscopy. With no family history of Crohn's, and no other symptoms of that horrible disease other than stomach pain, I dismissed this guy as a quack and went on my way.

We're three months into the ordeal at this point. Right around this time, I started getting really bad breathing problems. Couldn't catch a deep breath, and anxiety from that made it worse. Stomach pain *subsided* when breathing problems began. Went back to the general doc, who dismissed it as asthma and gave me an inhaler. Inhaler did nothing. Breathing problems gradually went away over the course of a week or so. I had one day where I felt absolutely fine. Next day, stomach pain is back. Lasted another week or so and then mysteriously disappeared...for about 2 weeks. I had 2 weeks of heaven. That was about 3 months ago now. For the last 3 months it's been the same thing. Alternating periods of 24/7 constant dull stomach pain, then switching to 24/7 air hunger and shortness of breath. Rare intermittent periods of good health. Whenever I have stomach pain, I can breathe fine. Whenever I don't, I can't breathe. It's like someone up there is playing a very, very cruel joke.

Just to describe the stomach pain a bit more, it's very generalized, moves around in the lower abdominal area, never becomes severe. When I suck in my gut, it becomes sharper pain. When I lie down and suck in my gut, the pain becomes even more severe and sharper. When I'm having the breathing difficulties, sucking in my stomach does not hurt.

Anti gas (simethicone) does nothing. Ex lax makes me pass after 8 hours or so, but no decrease or increase in pain. I do not take any other medications other than sub. I'm currently on 1 mg in the morning, .5mg in the afternoon and .5mg at night. That's down from 1, 1, and 1 a few months ago.

I'm out of ideas and running out of sanity.

Anyone that can help, please do.


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PostPosted: Mon Oct 18, 2010 6:45 am 
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Hello and welcome to the forum. I'm sorry to hear you've been feeling so ill, but I highly doubt it's got anything to do with the suboxone. I'm not quite sure that there's anyone here who can help you. We have one doc here, but not the kind of doc you need. If it were me I'd see a good internist.

Question: What do you mean by "the same things happened with the sub"? Are you saying you got "hooked" on it? I'm just confused as to what you meant.

I hope you can get some answers soon and start feeling better.

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PostPosted: Mon Oct 18, 2010 7:16 am 
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Obviously I am not a doctor, but I was wondering if maybe you are having anxiety issues?

It sounds ridiculous, since you are experiencing these very real physical symptoms, but I have, in the past, similar experiences that were the result of anxiety....I would feel pains in certain parts of my body, and I would absolutely have trouble breathing. These events always had me convinced that there was something horribly wrong with me, and I would always find out that there was not. These symptoms, for me, always seem to occur when some big change is taking place in my life, which coincides with anxiety, of course. Just a thought...

I don't know that Suboxone could be causing any of it. I know that it causes constipation, which can definitely cause stomach pain, even if you think you are...pooping at regular intervals. If your stool is hard as a rock, then that is some OLD shit, man. You're probably still backed up a bit. As for the breathing issues, opiates are CNS depressants, but I doubt that they would cause shortness of breath to the point where it would interfere with your daily life. Are you on any benzos, or other CNS depressants? I don't know, just taking a stab in the dark here....I would guess anxiety, if you want my personal, uneducated opinion, but only because I've been through something similar.

It could be the Suboxone. Everyone reacts differently to medications. You just never know what side effect one person will experience. I hope that you get this all figured out, and please, BREATHE. You'll be fine:) See someone who specializes in your particular symptoms, and maybe that can set your mind at ease. If you are having anxiety over this, then the symptoms are just going to get worse.

Good luck, and I hope you feel better soon!


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PostPosted: Mon Oct 18, 2010 7:26 am 
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I'm no doctor but it doesn't sound like the sub to me either. I don't know what it is, but I am prettysure it isn't the sub. I would suggest continuing to see a doctor and try sticking to one with a specialty and going back to that person even when their initial suggestion bombed. That is the only way they will figure it out.

Cherie

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PostPosted: Mon Oct 18, 2010 10:32 am 
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Dear Sov,

Do you feel as if you are even a little bit constipated? One thing that you could try would be Miralax which you can buy OTC. It is a powder and you mix a capful with water or juice and take it before bed. It takes 4-5 days for it to start working, but if you persevere and keep taking it you will soon get regulated. It is very gentle and will not increase the abdominal cramping. I have been told that it does not have long-term effects like other laxatives and can be taken on a long-term basis. I have had a ton of GI problems and my gastroenterologist finally told me to take this every night to quote "keep things moving". As someone else said, if you are prone to constipation it is possible that you are still backed up a little. As we all know any opiate as well as Sub can cause this. I have been in the hospital so many times, and I remember one time when I went in I had just gone to the bathroom before I went to the ER and I swore I was fine. When they took an abd. x-ray it showed that my colon was absolutely full! It is not very pleasant to talk about, but the reality is that this can make you miserable. If you don't get any relief from this, I would go back to the GI and have the colonoscopy. Even if you don't have Crohns it can diagnose a myriad of problems within the colon.

As far as the respiratory distress is concerned, that is scary. I can't imagine it being from the Sub after your having been on it for all this time. If it were me, the next time that set in I would go straight to the ER. This way they can evaluate you while it is going on and they might be able to see what is happening. Breathing is very important and not something to fool with!

If I sound too wordy here I am sorry. I was hospitalized over 25 times in 3 years for something that is on the NIH list of rare and undiagnosed diseases. I was so very ill and all the doctors here kept telling me that I was making it up. Two of my doctors discharged me from their care because they thought I was a nut job. I had to go to the Cleveland Clinic to find out what was going on. Once diagnosed, I have been able to control the symptoms. I will just say this: you know your body better than anyone. If you think something is wrong, don't give up until you find someone who can help you!

I hope you find that you are feeling better soon.

~Rossma


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PostPosted: Mon Oct 18, 2010 11:33 am 
I was going to suggest the Miralax also. When my daughter was about 3 she was having all kinds of unexplainable symptoms. I didn't think she was constipated because she was having those "rocky" bowel movements like you described. It turned out she had a lot of constipation in her upper bowel, and went on Miralax for a year or more (it's totally safe, and not absorbed into the body). Once she was treated all of her seemingly unrelated symptoms disappeared. I know it sounds weird, but there are so many nerves in the intestinal track that you can have referred pain anywhere in the body.
If if this approach doesn't work, at least you can rule it out. Don't give up. And congratulations on getting off the pain pills.
Lilly


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PostPosted: Mon Oct 18, 2010 12:16 pm 
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Thanks for the replies all.

The breathing difficulty is pretty strange. It's not that I can't breathe at *all*, it's that my breathing doesn't feel satisfying, like I can't get *enough* breath. I did some investigating and it looks like bloat can cause this condition, known as air hunger. I'm wondering if somehow the GI tract pushes on your diaphragm or something? That guess could be totally wrong and biologically impossible, but I'm wondering if it's something along those lines---GI tract somehow interfering with respiration.

I am indeed constipated, it just doesn't seem that severe to me. I had times on oxy where I had to use a suppository. THAT is what I think of when I think constipated.

However, the upper-GI problems one poster above mentioned makes a lot of sense. If I'm backed up constantly somewhere along the line due to suoer-low motility, then I wonder if that could be causing discomfort. That high up in the tract makes more sense to when put into the context of my on again off again breathing problems.

I just don't understand how this could all come on after 2.5 years of being on sub. WHat do you guys think of my daily dosage? Am I getting low enough to jump off or should I whittle it down to even smaller amounts? I just eliminated my afternoon dosage fairly recently, next one to go would be the night dose, since I'm most 'attached' to the morning dose. It's like my morning cup of coffee. Very bad, life ruining coffee.

I forgot to mention, I've had a full battery of tests. Blood work all checked out as normal. Chest X-Ray for breathing problems, came back normal. I had a lower abdominal and pelvic-MRI, came back normal except for one small thing, a thickening of my bladder wall. Urologist said it could be bladder underdistention, but not to worry about it, it wouldn't be causing any of this. Also had a prostate exam, (at the ripe old age of 24), TWICE I might add, both times both docs said nothing out of the ordinary. Testicular exam yielded nothing out of the ordinary. No prostate or bladder infection.

It's because of all of those negative results that I've begun thinking in earnest that it's the sub. It's a very powerful drug, who the hell knows how it affects me longer-term?

So Miralax huh....and this is OTC I'm assuming? Holistic type thing or just a regular OTC dietery supp? I'll have to check it out.


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PostPosted: Mon Oct 18, 2010 12:59 pm 
Hi Sovereign

I also want to say good job for getting off the pills!

I echo the posters above, it dose not seem like sub would cause breathing problems but colon stuff....yeah, I could see that happening.

I would go get that colonoscopy. It sounds like a rough procedure but I know a few people who have had one and they say it was not too bad. And yeah, Mirilax is over the counter now, it does work well. I take plain old fiber. Just 5 capsules a day and I am very regular. I know that stool gets hard if I don't drink enough water so I take the fiber with a big glass of H2o and it always works.

It sounds like you are on a pretty low dose of sub. I have not tried to stop because I am in NO WAY ready but some people on here jump from a much smaller amount than you are on. I suggest reading the liquified taper method thread on here. I believe its a sticky thread under STOPPING SUBOXONE. It seems like people have sucess with that.

So take care of yourself out there and come back and let us know how you are doing.

Kire


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PostPosted: Mon Oct 18, 2010 1:29 pm 
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It is indeed possible for the colon to be so full that it impinges on the diaphragm. Why don't you give the Miralax a try? It is OTC, but I am prescribed it by my MD so I have a Rx for it and I just pay the co-pay, 5 bucks, for the generic - Glycolax. (BC/BS in NY) Try it for a week and see if you notice any difference, as it does take a few days for your body to start working with it. I would stay away from stimulant laxatives for now as they can increase any abdominal discomfort that you may be having. It is possible that you have chronic low motility in your colon from the opiate use and the Sub, and that it has been getting worse slowly, and that you've just started to notice it.

As far as the breathing goes, if you get to the point where you really feel as if you're not getting enough air, you need to be seen, in my opinion. Make sure that you are not wearing tight-fitting clothing when it happens.

I don't have any advice about stopping the Sub as I have never tried it, but there are many here who know a great deal. My understanding is that it is better to taper slowly.

I hope you feel better.

~Rossma


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PostPosted: Mon Oct 18, 2010 1:45 pm 
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One more thing I forgot to mention...

A few months ago I started eating yogurt (first time in my life I've ever had it, strangely enough). I got hooked on that and was eating 3-4 yogurts a day. After a couple of days I started having very loose bowel movements, and after a couple more days my stomach pain subsided. I've been eating quite a bit of yogurt ever since. My bowels eventually seemed to get used to it though, and I am constipated once again, and the pain and breathing problems came back.


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PostPosted: Mon Oct 18, 2010 2:56 pm 
Rossma - thank you so much for posting about the Glycolax. Now maybe I can have a script called in and use my insurance!


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PostPosted: Mon Oct 18, 2010 11:29 pm 
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Are you eating 'Activia" yogurt?

If not, you should try it. At least get some fiber. You definitely need fiber. I know that after I stopped my opiate of choice, I didn't see any 'new poop' for a while, as gross as that sounds...haha. Your poop is definitely old if it's dark and hard. Sorry to be so graphic. You should absolutely get something that will help you...smooth things out down there and see if you feel better.

I know what you mean about the breathing....it's like there's this little hump you can't get over. it happens to me at night when I am attempting to sleep, and it annoys the shit out of me, but I also happen to be a smoker, so I can assume that my lungs and respiratory system aren't exactly in tip top shape. I can't recall whether or not I have only had this problem when I have been constipated. It also happens to a friend of mine, and she doesn't take any drugs...don't know if she's constipated, though...she's not a smoker, I know that. So I know that it happens to other people. I doubt that there's anything seriously wrong with you, but if you are experiencing enough discomfort from this that it is interfering with your ability to function and be happy, then you should definitely get a colonoscopy and perhaps seek the help of a respiratory therapist.


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PostPosted: Tue Oct 19, 2010 1:58 am 
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Thanks for the replies everyone. I bought some Miralax today, mixed it with OJ and downed it fast enough to not taste it. Reminds me of Elmer's Glue.

I had a bowel movement about 2-3 hours after taking it, don't know if it was coincidence or it went to work that quickly. It was basically liquid. No change in discomfort. I figure I'll give it a full week before I make any judgments. Just because I had one loose stool doesn't mean I'm not still backed up inside.


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PostPosted: Tue Oct 19, 2010 11:47 am 
Usually Miralax takes 2-3 days to kick in, so it was probably a coindidence. But if you keep taking it, even every other day, you should normalize.
Also, I called the docs office and got the OK on the Glycolax. No more spending $20 on Miralax, yay! Thanks rossma!


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PostPosted: Tue Oct 19, 2010 12:22 pm 
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That's great, Lilly! I'm SO glad it helped!

Sov, I would just keep going with the Miralax for at least a week and see if you can get regulated. I am not saying that it will help you as it is hard to know what is going on with you without doing a physical exam. But from what you said, it sure sounds like you are constipated, especially when you said you got regulated with the yogurt and the symptoms stabilized temporarily. I have seen patients who have been so constipated that the liquid stool actually comes out around the hard stool that is in the colon. The patient thinks that they have diarrhea when in fact they are very constipated. Keep in mind that I am not an MD, but I do have a lot of experience with this malady both in myself and in caring for patients who have had it.

Other proactive things that you can do to help yourself without medication are to increase your intake of dietary fiber daily either by eating whole grains and other fiber-rich foods, or taking fiber supplements; drink at least 8, 8-oz glasses of fluids per day (this is good for your bladder too); and increasing your exercise/activity level. Activity promotes peristalsis, whereas inactivity decreases it. If you are not able to get some relief from these interventions, I would consider going back to your GI and having the colonoscopy. You are far too young to be suffering like that. I hope that you are feeling better soon! ~Rossma


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PostPosted: Tue Oct 19, 2010 2:57 pm 
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Sovereign wrote:
I'm out of ideas and running out of sanity.

Anyone that can help, please do.



Um.......

Sovereign wrote:

Got referred to a gastroenterologist (sp). Informed him of my suboxone usage immediately. He didn't think it had anything to do with my problem (...). Strangely, he thought I had Crohn's Disease and wanted to do a colonoscopy. With no family history of Crohn's, and no other symptoms of that horrible disease other than stomach pain, I dismissed this guy as a quack and went on my way.


Maybe you should go ahead with the colonoscopy, if for no other reason than to leave no stone unturned.

Just a thought.


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