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Crohn's Disease Forum » Treatment » Long term usage of opiates


 
06-01-2013, 08:37 AM   #1
geraldherrin
 
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Long term usage of opiates

I am a crohns patient of longstanding ('91). The usual antidiarrhea meds are ineffective. Only Morphine Sulfate IR 30mg QID controls both abdominal pain and diarrhea. Tincture of opium also is of some benefit. What are the long term consequences of this? There has been no increase of usage in the past year. I am also on Humira. And I have not been hospitalized in over a year: a record. For over ten years I had had 25 admissions and have had four small bowel resections. I have actually been able to gain and hold weight. Things seem good. Should I be concerned, worried, or simply go with it. My gastroenterologist seems reluctant about prescribing the MS. Any advice, suggestions, comments would be appreciated. Note: these drugs do not turn me into a drooling wreck. I take grad level philosophy classes and if you can read Hegel then you are quite functional, I think.
Thanks, Gerald Herrin
06-10-2013, 10:05 PM   #2
Jennifer
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Hi geraldherrin, sorry for the late reply. How long have you been taking Humira? Did you start it before or after you started treating the pain and diarrhea with opiates? The only down side I can think of other than severe constipation and dependency (you'll have to taper off of it once you decide to come off it as you will have withdrawals if you stop cold turkey) is its masking symptoms. Its important to know how you're really feeling yet its also good to keep having regular testing done. So with pain, anti diarrhea and anti nausea meds I get concerned that people go to those rather than checking in with their doctor to find the exact cause and treat the underlying issue. I'm fine with helping minimize symptoms as needed but its important to treat the underlying issue so you don't have more problems (another resection) later on. This is why I asked how long you've been on Humira because if you've been on it for a while then you shouldn't still be dealing with constant pain and diarrhea to the point where only opiates help.

Keep us posted on how you're doing.

Edit: Do you know if you have or are close to having Short Bowel Syndrome because you've had so many resections already? If you do have it then likely the diarrhea wont stop its the pain I'm concerned about.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
06-11-2013, 05:53 AM   #3
geraldherrin
 
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I have been on Humira for about a year. I know that I have strictures and probably adhesions. My doctor will not allow me to take more than three MSIR in a 24 hour period. Quality of life declines with increased diarrhea and I always have some pain with any eating of any kind. Usually mild. Occasionally worse. But no signs of blockage and, believe me, constipation is NOT a problem. Short Bowel Syndrome is a potential problem if I undergo yet another surgery. I pray that does not happen.
06-11-2013, 01:33 PM   #4
geraldherrin
 
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I probably should add that I am well aware that opiates can mask symptoms. But MS is the single, most effective drug to reduce diarrhea and abdominal pain that I have available to me. With lower dosages, there is less response. I do not like incontinence. I do not like tethered to a bathroom. The past year, I was not hospitalized, gained weight, less pain, general improvement. Now, to go back to TID doses, I face greater discomfort. For the first time in ten years, I was not hospitalized. That is why I am feeling demoralized with reduced meds. I know what obstruction feels like. By experience. But I prefer feeling better, even if it takes QID doses of MSIR 30mg to do it. To me, the risk and benefit seem obvious. I would change gastroenterologists if I could. This week I intend to discuss this with my PCP. Wish me luck as I pray that all with crohns do well and escape this dreadful disease. Thanks for listening.
06-13-2013, 04:29 AM   #5
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I think if it works for you, you shouldn't worry too much about taking it, as long as you're careful. I take codeine on a long-term basis, which I guess is similar to what you're asking about, just on a smaller scale. I don't know all that much about morphine as the only times I've taken it have been for very short periods in hospital following surgery, but I believe the side effects for different opiates are similar, so hopefully the problems Iíve found out about for my use of codeine will apply to the morphine youíre taking.

The biggest potential problems for are addiction and tolerance. I don't believe I'm psychologically addicted to codeine as once every few months or so I taper myself off it and spend a week off it to reassure myself that I can do it. I once went ďcold turkeyĒ, which I was able to do, though I did feel quite flu-like and was unusually upset and tearful for a few days. I am more tolerant than when I first started taking it Ė the first time it gave me a minor ďhighĒ feeling, which Iíve never experienced since. The pain relief is the same for me even after taking it for over a year, however, so I donít have to keep increasing the dose.

There are other risks and side effects as you know Ė e.g. nausea, drowsiness, constipation Ė that could also pose a problem for someone taking opiates, especially drowsiness as it can mean that itís not safe for you to drive, and you shouldnít drink alcohol when on opiates.

Iím not sure if itís the same with what youíre taking, but the few times Iíve had morphine Iíve been extremely uninhibited Ė I donít drink alcohol, but my experiences while on morphine felt very much like how people describe being drunk. I can make a complete idiot of myself and come out with all sorts of slightly inappropriate things. In hospital, the nurses and my family know itís due to the drug so it doesnít matter and it's funny, but I donít think I could ever take it while trying to function in normal life for this reason!

So I would say the main signs that might suggest itís not good for you would be: if you find yourself nervous about the idea of having to stop taking it; if youíre having to increase the dose to get it to work; or if it is interfering with your ability to go about your life safely and appropriately.

If there are long term health risks, my doctor hasnít mentioned them in relation to codeine. I think opiates can be used safely long term, but whether it's suitable depends on the individual.

Last edited by UnXmas; 06-13-2013 at 10:49 AM.
06-13-2013, 07:31 AM   #6
geraldherrin
 
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I appreciate the response. Morphine doesn't effect my mood or cognition. I never "feel" high or drunk even on 120 mg po in a 24 hr period. What I have found is that I can live an almost normal life at that dosage with diarrhea and pain at tolerable levels. Reduce it and my symptoms increase. So, yes, I feel nervous about not taking it. I'm sure I've developed a tolerance. But the amount of drug required has not increased. It dismays me that my doctor is willing to allow me greater discomfort in order to fix the amount of MSIR to his comfort level. I am to discuss the matter with my PCP today; I don't expect miracles. Just a little understanding would be nice.
06-13-2013, 10:55 AM   #7
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How long has this doctor been prescribing the med for you? You may benefit from seeing a pain specialist. They are more comfortable working with pain meds in general, and have the facilities to manage long term patient compliance. I have had crohn's for over 20 years. I was addicted to pain killers, so I know the pitfalls. What you are saying is logical to me. If you don't have addictive tendencies, and you are careful, it's possible to do. My opinion, as an addict, is that morphine sulfate didn't trigger any addictive response when taken in pill form for pain (no high). This is different from morphine iv after surgery. I had such a fear of pain that I was terrified of not having more or enough pain medication, and I don't like having "unnecessary" pain either. I like to be in control, and doctors don't always work on the same time-scale as normal people. I don't know if any of this helps you. Good luck.

Last edited by darster; 06-13-2013 at 11:00 AM. Reason: added more
06-13-2013, 10:57 AM   #8
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I appreciate the response. Morphine doesn't effect my mood or cognition. I never "feel" high or drunk even on 120 mg po in a 24 hr period. What I have found is that I can live an almost normal life at that dosage with diarrhea and pain at tolerable levels. Reduce it and my symptoms increase. So, yes, I feel nervous about not taking it. I'm sure I've developed a tolerance. But the amount of drug required has not increased. It dismays me that my doctor is willing to allow me greater discomfort in order to fix the amount of MSIR to his comfort level. I am to discuss the matter with my PCP today; I don't expect miracles. Just a little understanding would be nice.
It sounds like it's working for you. Feeling nervous about stopping it because of symptoms returning isn't the same as addiction. However, doctors have to cover themselves - if you were to become addicted, your doctor would be responsible, so perhaps you can understand his reluctance. Doctors often work to set ground rules which don't allow much freedom to adjust to an individual's circumstances. But I take it he's been prescribing it up until now - has he told you he's not going to continue prescribing it? If he does, he should at least offer you alternative treatments to try.
06-13-2013, 12:15 PM   #9
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I think for discussion purposes morphine should be treated like any other drug. Then the questions are, how does morphine help with Crohn's, specifically with inflation, how does it help to increase a patient's quality of life, what are the side effects short term and long term and what are the alternatives to it?

I have no experience with morphine sulfate. What I read on the internet is that it is mostly prescribed for people with severe pain during flares of Crohn's. I am not sure if it is intended to help with the inflammation and thus with diarrhea.

Personally, I'd say that taking something for the pain on a constant basis, which might also help with diarrhea should only be a plan if this actually leads to remission and a decrease of any inflammation (which is the reason for the diarrhea and pain in the first place). If the morphine does not help with the actual problem (inflammation), I think it is quite risky to mask the problem long-term by using morphine.

Your doctor could probably be swayed with some evidence that morphine sulphate (similar to e.g. marijuana) not only treats the pain, but also helps with inflammation. Not sure if there are any articles etc. on that topic out there.
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06-13-2013, 05:07 PM   #10
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My doctor has continued the morphine but has added tincture of opium for evening and night control of symptoms. This seems, to me, reasonable. I have been on both for over three years now. I do fear pain, especially if I think it unnecessary. I have pain with every meal. I believe the Humira has controlled further major flares (last one at 33,000 feet on a passenger plane). Am I in "remission"? I don't know. But if I am not in hospital, and tolerating the diarrhea and pain, I can deal with that. Thanks to all who responded.
06-14-2013, 06:24 PM   #11
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Hello!
So, I know my two cents here isn't going to be liked. I'd venture a guess that if you have low-grade pain every time you eat, whatever you're taking for your crohn's isn't working that well and you and your doc should try other treatments. I was doing something very similar to you with quality-of-life and painkiller use stuff. It ended up being that I wasn't paying close enough attention to my strictures and I perforated, leading to two surgeries and two abscesses and an anastomotic leak in the past three months. It was miserable. I would just ask you - as a philosophy student - to question whether the MS is *actually helping your crohn's,* or if it is simply helping you get by day to day, because there is a difference. Have you tried medical marijuana? I know some kids who claim to be able to read Hegel better high. It's also seemed to help some with D. I also saw a GI today who said she's seeing a trend with patients in their 20s - managing our illnesses (often involving painkillers) but not being that proactive about treating them, if you see what I mean here. She said she's seeing a bunch of young people with old strictures perforating. If your inflammation markers are decreasing and all lab results point towards an improvement, then I guess you aren't really hurting yourself. I just am sounding like a worrier because I wouldn't want to see someone end up in the position I got myself into with similar stuff. I hope something gets you where you want to be. xx
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06-14-2013, 08:35 PM   #12
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I appreciate your reply. It is thoughtful and addresses my concerns. Yes, the MS gets me though the day and makes living tolerable. I would like to try medical marijuana but I do not live in an area where that is an option. I am sceptical that Hegel would make any more sense high. I'm working on Wittgenstein now. Lab results suggest stable condition. But I wish that I dd not have to eat. I'll try the MS and tincture of opium combination and see how it goes. Wish me luck. With crohns and Wittgenstein.
06-14-2013, 09:35 PM   #13
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I take hydrocodone prescribed by pain management for my crohns pain. My GI does not like me on this med because of the so called rebound pain with narcotics on the gut. When I get in so much pain and take hydrocodone more scheduled I sometimes wonder if my pain gets worse due to this rebound effect. Have you heard about this?
06-14-2013, 11:45 PM   #14
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I take hydrocodone prescribed by pain management for my crohns pain. My GI does not like me on this med because of the so called rebound pain with narcotics on the gut. When I get in so much pain and take hydrocodone more scheduled I sometimes wonder if my pain gets worse due to this rebound effect. Have you heard about this?
I really don't believe rebound pain comes from opiates, but this is just my opinion. Now getting off opiates for some people causes a whole new set of pains. Like being unable to sleep, body aches like flu symptoms. Etc... Same thing happened to me from going off an antidepressant, even when I tapered. Still suffering so my PCP is making me return to a different one as it helps prevent stress and stress cause more flares. Vicious cycle. I say, do what works for you while you can. If the time comes when it causes problems , deal with those then. But many people live on opiates their entire life and it is just fine. It's when they go off them that their bodies fall apart.
06-15-2013, 02:30 AM   #15
Jennifer
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I say, do what works for you while you can. If the time comes when it causes problems , deal with those then.
While I understand the importance of living a better quality life and that pain medications can manage symptoms, in the end that's all they're doing. As mentioned by acc929, its very likely that it could lead to a perforated bowel and more surgery. Dealing with something like that is life threatening so I wouldn't advise to wait and deal with that problem if it comes (which hopefully it never will geraldherrin).

Keep up with testing geraldherrin to make sure that things aren't getting to a dangerous point. As long as you're stable and not getting worse I don't see pain management as a bad thing at all. I also understand that you're doing much better now than you have been in the past which is wonderful, again, just stay on top of testing (having regular scopes done and blood work etc) to make sure all is well inside.
06-15-2013, 04:42 AM   #16
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I think the problem with worrying that painkillers are masking symptoms is that sometimes that's the only option. It can be very difficult to find successful treatments and get Crohn's into remission or heal a particular complication, and a lot of life can pass you by while you're trying to do so. If you're having regular tests to assess whether you are masking something serious, sometimes using painkillers for a while to improve quality of life is the best option. Ideally you don't want to be on painkillers long-term (though that goes for a lot of Crohn's meds too), but if painkillers make the difference between being functional and non-functional, and if you're taking care to identify and address the exact cause of the pain as much as you can, why struggle on in pain hoping for a remission that doesn't come?
06-15-2013, 05:50 AM   #17
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I think the problem with worrying that painkillers are masking symptoms is that sometimes that's the only option. It can be very difficult to find successful treatments and get Crohn's into remission or heal a particular complication, and a lot of life can pass you by while you're trying to do so. If you're having regular tests to assess whether you are masking something serious, sometimes using painkillers for a while to improve quality of life is the best option. Ideally you don't want to be on painkillers long-term (though that goes for a lot of Crohn's meds too), but if painkillers make the difference between being functional and non-functional, and if you're taking care to identify and address the exact cause of the pain as much as you can, why struggle on in pain hoping for a remission that doesn't come?
Not saying this is wrong, but somehow it sounds like drivinga car with engine troubles, but instead of trying to get the engine fixed, you put earplugs in your ears so you don't hear the screaching and gurgling noises of the malfunctioning engines.
06-15-2013, 06:54 AM   #18
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While I understand the importance of living a better quality life and that pain medications can manage symptoms, in the end that's all they're doing. As mentioned by acc929, its very likely that it could lead to a perforated bowel and more surgery. Dealing with something like that is life threatening so I wouldn't advise to wait and deal with that problem if it comes (which hopefully it never will geraldherrin).

Keep up with testing geraldherrin to make sure that things aren't getting to a dangerous point. As long as you're stable and not getting worse I don't see pain management as a bad thing at all. I also understand that you're doing much better now than you have been in the past which is wonderful, again, just stay on top of testing (having regular scopes done and blood work etc) to make sure all is well inside.
I do agree with keeping up on testing too!
06-15-2013, 06:56 AM   #19
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But like unxmas said, why not use whatever means you have to have somewhat of a normal life?
06-15-2013, 08:29 AM   #20
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I certainly agree that we with crohns need to closely monitor ourselves. But I feel that we are sometimes stigmatized because the ONLY drugs that control diarrhea and pain together happens to be morphine and other opiates. At a hospital once when I was traveling, they thought I was a drug seeker until they saw the CT of the abdomen. At that point, everything changed. I wish I did not have to take these drugs. But the blunt fact is that I need them, that I must take them, probably for the rest of my life. I am probably in " remission" because I have no new obstructions. I want to keep it that way. By the way, I also suffer from anxiety and panic attacks. Yet another gift from crohns. Thanks to all and interesting comments.
06-15-2013, 10:09 AM   #21
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gerald, azathioprin helps me keep in remission which means I have no pain and no diarrhea. Same for many people who are on remicade or humira or cimzia. So I think the statements that morphine is the only drug that controls diarrhea and pain together is correct.

On the topic of remission, clinically that means a. no elevated inflammation markers in your blood tests (CPR etc.), b. no symptoms as in no diarrhea, pain, cramping, nausea, c. no tiredness or fatigue. And this state has lasted at least for the last 6 months or so.

You of course do not have to defend your decision of use of morphine sulfate. The only reason some people (me included) might be skeptical is because morphine is not a standard drug to treat Crohn's. If it were and were working much better than biologics or immunosuppressives or a combination of those, I would be the first to use morphine. But you cannot exclude that it merely suppresses your pain while you have constant inflammation that leads to scaring and potentially surgery. And that would be dangerous and problematic.
06-15-2013, 10:24 AM   #22
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Alex. You're very lucky to have found a drug that put and keeps you in remission. Not all of us have had the same good fortune yet. As you can see, the poster (gerald? i gather?) is taking humira. I think what he likely meant is that, for him, the only drug that controls his symptoms is MS. I don't think he is claiming that it necessarily *treats his Crohn's disease,* and I don't think he's portrayed it as ideal to have to take it at all. Given that pain medication is such a touchy topic out in the world already, I don't think we need any added judgment or condescension in a community of people trying to find solutions to the problem of suboptimal health.
06-15-2013, 11:43 AM   #23
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Acc, I completely agree. I did not want to judge him at all. Quite on the contary. What I tried to say is that it is important to consider the consequences of using morphine, which potentially could be severe (constant inflammation despite humira, which however stays untreated because morphine masks it). Humira is not the last resort for Crohn's. You could combine it with immunosuppressives. You could change the dosage. You can change your diet. You can add stress relief, vitamin and other supplements, sport and many other things that help to put you in remission. For many years I had problems despite taking aza. Aza didn't put me in remission, it just helped me to get there. If I had taken pain meds, I might never have had the incentive to actually find the right mix of Crohn's management measures for me.

What I am trying to say is that the morphine might just mean that gerarld gives up to actually get the inflammation under control. And that would not be good.
06-15-2013, 12:22 PM   #24
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Is there any evidence that diet, stress relief, vitamins, supplements or sport actually put Crohn's into remission? They may not carry the same risks, but they don't stand any better chance of putting Crohn's into remission than opiates do. You can end up spending a lot of time, money and energy (or at least I did) on non-medical treatments and not get anywhere at all.
06-15-2013, 01:30 PM   #25
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In response to Alex, I guess I would say that the Humira has prevented further inflammatory damage. But without MS or tincture of opium (which are only anti-diarrheals effective for me), my weight would collapse back to 130ibs, and 20 plus bowel movements in a 24 hr period. Thus MS IR 30mg has given me my life back. I now weigh 165 pounds, perhaps eight bowel movements in a 24 hr period. And I have stayed home, out of hospital. I should add that when on Remicade, I developed multi-drug resistant TB, bilateral pulmonary emboli, and nearly died. I am quite happy to take MSIR and tincture of opium and smile at those who disapprove. And I'm reading Wittgenstein this summer and taken an advanced philosophy course this fall. That sounds good to me. Has anyone ever tried bulk increasing meds to their diet in order to try to have more normal stools? Has it helped? This has recently been suggested to me?
06-15-2013, 01:40 PM   #26
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Just to clarify, I know diet, exercise, etc. have other health benefits, but with Crohn's they only work at the level of symptoms, the same as painkillers, they don't actually target the disease or inflammation, except in the case of vitamins or supplements to counter specific deficiencies which may have resulted from Crohn's.

For some people, non-medical treatments just don't help. For some people, painkillers don't help either, or they cause addiction or other side effects that make them inappropriate. But in some cases painkillers can be very efficient. It may well make sense to try more conservative treatments first, but you can spend a lot of time trying every medication, diet, and alternative treatment claimed to help with Crohn's, and trying to adopt every piece of healthy living advice you come across (though many of them contradict others, and many take weeks or months before they're supposed to take effect), but again, you may be suffering needlessly in the mean time - time when you may need to control your pain in order to manage to go to work and keep your job, or control your diarrhoea so you can get out of the house and have a social life.

I found the process of trying and failing at all sorts of treatments very wearing. At some point, if you're lucky enough to have found something that controls your symptoms, you'd want to make use of it rather than continuing searching indefinitely for something that will treat the cause. Morphine isn't something that would work for me long term because its effects on my mood and self-control are too great. But if I could use it without adverse effects, I wouldn't refrain from doing so just because it was only masking symptoms.
06-15-2013, 06:21 PM   #27
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I mean, if transit time is your issue, which it sounds like it sort of is, then I would say that morphine is actually a decent solution given that you are fine with it and you're on humira. In terms of diets, I sort of disagree with unxmas. I think *some* people have great reactions to taking certain foods out (I took out gluten and felt miles better for a month; binged on it one day and got obstructed the next, not kidding). If you're into the leaky gut theory then there is some kind of documentation of this, if not proof. It's also just not sensible to think that diet *doesn't* affect a GI condition (or any other condition, for that matter, given the amount of our immune and neuro systems that really reside in our gut). That being said, in terms of bulk and transit time, I eat gluten free bread and bananas to slow it down when I feel the need. Sometimes I feel like it works, sometimes I don't. I'm post-op so I'm all weird right now, also. But yeah. Bananas and rice (my toast is rice-flour-based, better than gluten especially if you don't know if you have a sensitivity). Have you tried any diet changes or probiotics? I see an enormous difference in my aforementioned weird-post-op-ness and what's happening down there when I take a probiotic (with my antibiotics) regularly. Never thought it would have been that helpful but it has been. I think what some people are also forgetting is that you said you've had four resections. To have issues with transit time after that is likely pretty natural, but still perhaps not necessarily common due to the number of surgeries, and so it could require an equally unorthodox solution.
06-15-2013, 07:27 PM   #28
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Certainly not forgotten acc929. That's actually the biggest problem unfortunately. Its very likely that the pain is simply from the scar tissue from the surgeries themselves. That can't be treated with medication at all yet I wouldn't opt for another resection unless it were needed to prevent an obstruction or perforation. More and more surgery leads to short bowel syndrome and then its just nothing but diarrhea and vitamin deficiencies (do your have your vitamin levels tested regularly geraldherrin to see if you need supplements? Scar tissue doesn't absorb nutrients either) yet the surgeries alone could have caused geraldherrin to have constant diarrhea to begin with. So if its a case of scar tissue and diarrhea caused by all those surgeries then it makes sense to treat the symptoms with whatever helps and as mentioned, the only real issue with the opiates would be constipation (which you don't have an issue with clearly) and to watch out for addiction (although I did read somewhere about men possibly dealing with Erectile Dysfunction when using opiates, here's one study that mentions it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2951625/). Other than those I haven't read anything that states it can cause any other harm. As long as you're able to function (driving is a main concern as well as mentioned) then it shouldn't be an issue.

Have you talked to your doctor about having a strictureplasty done geraldherrin? What sections were removed? Just some of the small bowel, none of the large intestine at all or the cecum, ileocecal valve (removal of this can cause permanent diarrhea in many patients)? Do you know how much in total was removed already?

As for bulking up the stool, acc929 is right on again. What she's talking about is the BRAT diet (bananas, rice, applesauce and toast). It doesn't have to strictly be those four items but its basically bland starchy foods.

As for the pain after eating due to strictures, have you tried softer foods in general? Making soups and stews into smaller soft pieces (be sure to drink the broth as much of the nutrients are in there) can help to reduce the pain along with smaller and more frequent meals.
06-15-2013, 07:33 PM   #29
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°BRAT! THANK YOU Jennifer I knew it was a B- something!! I was thinking BANGS, which I realize now has to do with French and adjectives that go before nouns. I knew something sounded off there. It was driving me nuts. I even tried googling. Flagyl sucks it's making me dumb. Word on the liquid-y stuff, too. It's not sustainable but the month pre-op when I was on enteral nutrition was the first month in years with manageable pain. Boost Plus is your friend! Still drinking it post-op I think the prebiotic fibres might help the maltodextrin from wreaking havoc, which I think makes it different from Ensure?
06-15-2013, 07:35 PM   #30
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LOL, you practically spelled it out too. Just left out the A for applesauce. :P
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