Pain Meds & Chrohns (My experience)

I was diagnosed with Chronhs about this time last year, even though I have had my problem now for 6 years. My diagnosis is not a "slam dunk" according to my GI Doctor, but he said there is too much evidence to suggest otherwise.

Out of all the medications I have been on (Pentasa, Imuran, Entocort, Humira, Methotrexate) Nothing seems to be really working. However....

I know for a fact that pain meds work for me. They take away any pain in my gut, and I do not have to worry about making it to a bathroom at all. But of course when the medicine wears off, symptoms come back.

I know that pain meds work because when I had my wisdom teeth pulled I was given 5mg Percocet. Not only did it help me with the teeth being pulled, but it helped with my chrohns symptoms. Even after I no longer needed it for my mouth, I continued to finish off the prescription because of the benefits to my gut, and during that time I had my life back.

I have brought this up to my GI. He said all that would do is mask the problem, not treat it. Which I do agree with.

My Primary Care Doctor (Family Doctor) which I never brought this up to, wont even prescribe me a real sleeping med. By that I mean she just keeps giving me very cheap anti depressant meds that can also help with sleep. But they don't work for me sleeping. She is afraid to give me any that has anything narcotic in it because of how it can become habit forming (Addicted). I also agree with that.

But, if something like a pain med would help me with my symptoms long enough to where I can get a full time job, get real health insurance (Don't ask) and to continue to find another, more safe way to treat my symptoms, why not give it to me ? Not only would I be able to get back to work. But I would be able have my life back.

What are your takes on this ?

If you are in the US, they just won't do it, unless you've just had something major. With the painkillers, the DEA is really cracking down, and they all think you're an addict looking for a fix, or that you'll become one.

Sleeping pills have some strange side effects, and many doctors and drug manufacturers have been sued. The ones that don't have side effects are considered dangerous because they suppress breathing.

Miss Underestimated said:

If you are in the US, they just won't do it, unless you've just had something major. With the painkillers, the DEA is really cracking down, and they all think you're an addict looking for a fix, or that you'll become one.

Sleeping pills have some strange side effects, and many doctors and drug manufacturers have been sued. The ones that don't have side effects are considered dangerous because they suppress breathing.

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I am in the U.S.

I agree with the part you said that they think your a drug addict if you ask for them. Where I live, the town is full of all kinds of junkies. All the Doctors here know this. That is what makes it so hard to even mention that they helped with my chronhs symptoms because they will think that I just want them to get a fix.

I think it depends on your doctor. I have not yet been dx, still going through all the motions. But I have other health issues, one being interstitial cystitis which is a disabling severely painful bladder disease. I myself am not able to tolerate pain meds let alone any type of meds as I have reactions, but I know quite a few others who have interstitial cystitis and they are on daily pain meds just to get through each day. You would have to see a pain specialist in order to do this.

There is alot of controversy with doctors and their reluctence to prescribe pain meds. They say they are worried about addicition, but I do not think this is true. They have to fill out a buttload of papers whenever they prescribe pain meds, especially on a regular basis. It is more of a pain in the butt for them with all the paper work so they rather just not give out the scripts.

I also hate that whole "addict" label. It is has been researched and researched and it was found that people that take pain meds for pain do not become addicts. It is the people that take pain meds to get high that become addicts. The only bad thing about taking them on a regular basis for pain is that they do have a tendency to stop working and the dose needs to be frequently upped or other drugs then need to be tried since the longer your on a pain med, that med may stop working for you.

If you are in severe pain, then I would see a pain specialist as they are the ones that will be able to help you, not your GI doc or regular primary care doc.

Shryock86 said:

I was diagnosed with Chronhs about this time last year, even though I have had my problem now for 6 years. My diagnosis is not a "slam dunk" according to my GI Doctor, but he said there is too much evidence to suggest otherwise.

Out of all the medications I have been on (Pentasa, Imuran, Entocort, Humira, Methotrexate) Nothing seems to be really working. However....

I know for a fact that pain meds work for me. They take away any pain in my gut, and I do not have to worry about making it to a bathroom at all. But of course when the medicine wears off, symptoms come back.

I know that pain meds work because when I had my wisdom teeth pulled I was given 5mg Percocet. Not only did it help me with the teeth being pulled, but it helped with my chrohns symptoms. Even after I no longer needed it for my mouth, I continued to finish off the prescription because of the benefits to my gut, and during that time I had my life back.

I have brought this up to my GI. He said all that would do is mask the problem, not treat it. Which I do agree with.

My Primary Care Doctor (Family Doctor) which I never brought this up to, wont even prescribe me a real sleeping med. By that I mean she just keeps giving me very cheap anti depressant meds that can also help with sleep. But they don't work for me sleeping. She is afraid to give me any that has anything narcotic in it because of how it can become habit forming (Addicted). I also agree with that.

But, if something like a pain med would help me with my symptoms long enough to where I can get a full time job, get real health insurance (Don't ask) and to continue to find another, more safe way to treat my symptoms, why not give it to me ? Not only would I be able to get back to work. But I would be able have my life back.

What are your takes on this ?

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Your doctors, like previously mentioned, don't want to prescribe strong pain meds, like percocets, because they are habit forming. With you not having a clear cut DX, that just adds to their theory that you may just want a 'fix'(although I know that is not true in your case).

Their are side effects that can happen with longterm use of things like oxycodone. You will have withdrawls if you use them frequently & then try to 'taper' off. Also, how would you KNOW your in pain if you are constantly taking pain killers? That is something I don't understand, chronic illness or not, if you need something to take away the pain, that's fine but constantly using things like hydrocodone makes no sense as those are supposed to be break through medications. Ask your doctor about things like Tramadol. It isn't a narcotic & you can take it every few hours to get ahead of the pain.


I have been flaring for a LONG time now & my doctors/family beg me to take my pain medication. Even when in the ER with blockages, infections etc. caused by Crohn's I don't beg for pain medications. It hurts like heck but I do recognize the risks involved. My GI prescribes me Lortab 5's & it can take 2 months for me to finish out a bottle of 20 lortabs.


I hope you feel better & that one of your doctors prescribes you a 'maintenance' pain med & even a breakthrough med like hydrocodone so you can function. Your doctors are in the frame of mind that: You need to treat the actual condition, not the pain. They don't think you are a drug seeker, they are being rational *HUGS*!

Keepingfaith said:

Your doctors, like previously mentioned, don't want to prescribe strong pain meds, like percocets, because they are habit forming. With you not having a clear cut DX, that just adds to their theory that you may just want a 'fix'(although I know that is not true in your case).

Their are side effects that can happen with longterm use of things like oxycodone. You will have withdrawls if you use them frequently & then try to 'taper' off. Also, how would you KNOW your in pain if you are constantly taking pain killers? That is something I don't understand, chronic illness or not, if you need something to take away the pain, that's fine but constantly using things like hydrocodone makes no sense as those are supposed to be break through medications. Ask your doctor about things like Tramadol. It isn't a narcotic & you can take it every few hours to get ahead of the pain.


I have been flaring for a LONG time now & my doctors/family beg me to take my pain medication. Even when in the ER with blockages, infections etc. caused by Crohn's I don't beg for pain medications. It hurts like heck but I do recognize the risks involved. My GI prescribes me Lortab 5's & it can take 2 months for me to finish out a bottle of 20 lortabs.


I hope you feel better & that one of your doctors prescribes you a 'maintenance' pain med & even a breakthrough med like hydrocodone so you can function. Your doctors are in the frame of mind that: You need to treat the actual condition, not the pain. They don't think you are a drug seeker, they are being rational *HUGS*!

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Well if I were to be prescribed pain meds for my chrohns symptoms, it wouldn't be necessarily for "pain" as whatever is in them helps to take away my symptoms. Even though I do have abdominal pain sometimes because of the chrohns. But I would only take it as needed. For example. Lets say I had a job and one morning my symptoms are so bad that I cant make it into work. Take a pain med and boom, once it takes affect I feel better. Again I know it would not treat the condition, but maybe it would help with me being able to get back to work and can be a temporary thing until they can get my symptoms under control with the right medicine.

It's beyond a long shot. But I guess I could bring it up with my Primary Care Doctor.

Like keeping faith posted, tramadol is not a controlled substance. However, usually if you suggest the med you want, they get even more suspicious.

If you ask for it, act like you don't know anything except that you heard there are some medicines for pain that aren't addictive.

Also Tramadol is not so strong that it would mask anything really serious.

No one is going to give you something like Percocet long term because it's a very strong pain killer and can be addictive. Not to mention that while it may take care of the pain, most narcotic level pain killers have a long list of side effects to your digestive system and internal organs. I think if you read about these drugs, you will understand why they won't give them to you long term.

My NP and GP wont give me pain meds either. I have ongoing Rx for Tylenol 3 which help with the pain......except on really bad days. I get 75 pills that i can refill once a month. Usually takes me 2 months to go through 75 pills so they know i am not abusing them. I totally agree if somoene could give me something so i can function normally everyday, i could go find another job and do ecerything i want to do. But on the days when the T3 dont work i stay in bed.

my drs said same thing, painkillers: they dont treat the symptoms only mask the problem. But i am ok with that on a temp basis until we can get going on the symptoms......but they didnt agree. So i get to suffer as well and try and take tylenol and T3 when i need ......i do understand why they wont but at the same time for a short term answer, itw ould be nice to not have pain.

My GI gives me percocet/oxycodone whenever I ask for it. I'm still on the bottle of 60 I got in January. I was only take a couple a week, but have taken 3-4/day the past few days due to bulging discs/sciatica.

My Crohn's specialist prescribes me codeine on a regular basis to help with pain but also to help bung me up to reduce bathroom trips- i live in the UK & doctors here are quite good at understanding the need for pain relief with severe conditions so im pretty lucky. ive been takinv pain relief for over 10 years & im not addicted because i dont abuse it.
It's always worth asking to see if they could prescribe you something to help. Good luck

I understand the frustration of not getting adequate pain relief when you need it. My GI doc knows I am having an active flare and he says he wont prescribe any pain meds for fear of addiction. I feel that he is not treating my pain and I am considering a new GI doc. It stinks that people who abuse the drug ruin it for those that actually need it.

haakjess said:

I understand the frustration of not getting adequate pain relief when you need it. My GI doc knows I am having an active flare and he says he wont prescribe any pain meds for fear of addiction. I feel that he is not treating my pain and I am considering a new GI doc. It stinks that people who abuse the drug ruin it for those that actually need it.

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Thats really unfair! I wouldnt have been able to cope for the past 10 years without pain relief. Get a new doc one that can actually understand the need for pain relief for those who really need it. Good luck to you both.

haakjess said:

I understand the frustration of not getting adequate pain relief when you need it. My GI doc knows I am having an active flare and he says he wont prescribe any pain meds for fear of addiction. I feel that he is not treating my pain and I am considering a new GI doc. It stinks that people who abuse the drug ruin it for those that actually need it.

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I know to feeling mine will prescribe percocet but says I need something stronger, because he cant get my pain under control. I have many new ulcers that are extremely flared and a stricture that is closing off, so I do need it, but fear they look at me like an addict but I do not abuse it, so those druggies ruin it for us all lol:ack:

I'd like to chime in on this one from the doc standpoint, because it's a very improtant topic.

99% of the world's Dilaudid is consumed in the US. about 75% of narcotics in general are consumed in the US. Are patients in other countries in more pain? hardly. Overuse of narcotics is a huge problem in the US, and I can gaurantee you almost every doc, myself included, has either had a patient die, or end up in the hospital because of misuse of Narcotics. narcotics can create dependence sometimes very quickly, within a matter of days, without the patient even realizing it. In addition, tolerance develops very quickly as well. This says nothing about the incredible side effect profile of narcotics including itching, all the anticholinergic effects, cardiac effects, respiratory depression and central nervous system effects.

Narcotics are for VERY SHORT TERM USE. The one exception is the extended release medications for things like cancer related pain.

While it is true that other classes of painkillers (NSAIDs) cannot be used in IBDers, there are other ways to control pain which are really underutilized. - lidoderm, nerve blocks, and oh, by the way, steroids. Sure, none of these is perfect, and have their own effects, but they are options in certain settings.

It boggles the mind that people fear putting lialda in their system but whine like crazy when the doc doesn't give them one of the most dangerous susbtances on earth. There is a reason narcotics are controlled and MD prescription habits are closely watched.

No doc wants to see any patient in pain, but I would actually run really fast from any doc that throws narcotics at patients. Yes, they have use, and should be used. But VERY carefully.

It amazes me that we as IBDers look for every out of the box modality to treat our disease, but with pain, it's the exact opposite. Just give me the narcs. Not interested in other options. I don't get it.

baistuff said:

It amazes me that we as IBDers look for every out of the box modality to treat our disease, but with pain, it's the exact opposite. Just give me the narcs. Not interested in other options. I don't get it.

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Because that's what pain does to people.

I completely agree with your post... now, while I'm not in pain. When I'm in pain I just want the pain to end.

After my last surgery (an emergency surgery, so no plans beforehand), I woke up with an IV that gave me Oxycodone when I pressed a button. A pain specialist came and told me to push it all the time, that I mustn't even wait until I felt pain, push it at the slightest discomfort. When a few days later they took it away, the withdrawal was the worst part of that hospital stay (which, besides the surgery included sepsis and all sorts of other complications). I wished they'd just let me go through the pain. I've been through other surgeries with no opiates. But I think while you are actually in the midst of pain, really severe pain where all you can think about is wanting the pain to end, you don't make the same decision that you would when the pain isn't there.

So, yes, doctors have to be the ones making the right decision (which wouldn't always be no opiates, I think, as you say, in some circumstances it's right to use them), but your comment about people with Crohn's acting differently when it comes to pain - well, that's a generalisation, I'm sure not all Crohn's patients act the same way on this, but I don't find it at all surprising if many of them do want opiates whilst being prepared to try various options when it comes to other symptoms.

(Edit: I'm not entirely sure about the definitions of "opiates", "narcotics", etc., so sorry if I've used any incorrectly, but I think you know the types of medications I'm referring to.)

UnXmas,

No one should have to be post op and in pain. You were on a PCA pump (patient controlled analgesia) which is very good in letting the patient get meds without having to wait, but which are also set to max out at certain doses/times for safety. We usually use them for a day post op and then quickly wean it, convert to long acting orals with short acting for breakthrough, and quikcly wean from there. To just "push a button" for 3 days, then stop cold turkey is insane.

My point about other modalities is that pain should not be part of the treatment plan only when it is happening. We all have our plan for diarrhea, other symptoms. We see dieticians, nutritionists, naturopaths, but how many have seen pain management specialists? How many have a treatment plan for pain set up for the next flare? Especially since NSAIDs are off limits, IBDers need a PROACTIVE plan for pain management just like we do for other aspects of this disease. To wait until doubled over in an ER is suboptimal on so many levels. Beyond the obvious need to control pain, pain revs up the sympathetic nervous system including gut motility and can worsen other symptoms of IBD. Very important to include pain control in the overall treatment plan.

Baistuff:
"It boggles the mind that people fear putting lialda in their system but whine like crazy when the doc doesn't give them one of the most dangerous susbtances on earth. There is a reason narcotics are controlled and MD prescription habits are closely watched"

For me, I had resisted the biologics (not lialda) because I was told that I'd have to be on them for the rest of my life, and when I researched them, I found out about the serious side effects which include rare cancers, lupus, leukemia, and general lowered immunity to everything. I don't take these effects lightly at all and its upsetting to me to think about having to be on these meds forever.

However, when I'm offered a narcotic for any reason (post op for example, or in the ER) I will absolutely take it because A) I'm in so much pain and I need it and B) These are meds to be used for the short term and they don't pose the same side effects as the biologics do. I know I won't be on them for the rest of my life.

I was not opposed to being on Pentasa when I was on it because it was a mild drug with very few side effects that I could dig up. But unfortunately, it did not help my condition.

Tzvia,

I have personally seen more people die or suffer significant problems (like getting fired from a job, arrested etc...) much more from narcotics than biologics.

My point is that the same scrutiny we use to analyze biologics or other meds we should use with narcotics. They absolutely play a role in pain control can and should be used in acute settings (post op for sure) BUT they need to be monitored VERY carefully. They are dangerous dangerous drugs from many standpoints. I can't tell you how many people walk into my office or the ER and say "I twisted my ankle playing basketball, I need percocet." NO YOU DON'T.

Docs have been trained to look at narcotics with VERY careful scrutiny. Hell, they are controlled by the DEA, and our prescribing practices are monitored very closely.

Pentasa can cause renal failure and pancreatitis BTW. ANY drug is potentially dangerous.

I hope you are doing well!

For me, I'd still much rather take a short-term narcotic (not talking about addictive use) than be on a long term med for my Crohn's since most of them have nasty side effects.

I am doing well right now! Had surgery 5 weeks ago and I feel GREAT for the first time in years. Right now, I am med-free, and I'm doing a colonscopy in a few months. If colonoscopy is clear, I can stay med-free (but be closely monitored) If I have ulcers/inflammation....I guess I will have to go on a medicine.

The one addictive med i have an RX for is xanax. I haven't taken any in weeks, but it did help me when my pain was so so severe. The pain would get so bad and them I'd start to panic, this making the pain much worse. The xanax helped me to relax, which seemed to reduce the level of pain and also allow me to sleep. The doc perscribed 30 pills, which i used very sparingly and I still have like half of the bottle.