Pain management

[karlyg]

Hello all. I'm very stressed out right now and am hoping you might be able to offer some advice. My GI doctor has been prescribing me pain medication for my Crohn's pain for years - nothing "hardcore" except when I'm in the hospital, but he gives me Tylenol with codeine and I've been on it for a while. Normally, I don't need to take it much, but when I'm flaring, like now, I take 1-2 (usually just 1 and maybe 2 once a day) every 4 hours. I know constipation is often a concern but with 5-10 movements a day, this isn't really the case right now. Anyway, my GI has been getting more and more hesitant about prescribing me the meds. To make matters worse, at my family's Thanksgiving dinner, my brand new bottle of pills somehow went missing (I know this sounds incredibly sketchy, but we did have a pill addict present and I can't help thinking it may have been her since they were out in the open). I told my doctor what happened and he is now even more hesitant to give me anything. I have enough meds to get me through the next few days but then I am worried I'll be on my own. Of course, the stress doesn't help with the pain or anything else. I really feel like I need some pain medication to be able to make it through the day, work, perform basic functions of being a human being, and stay outbid the hospital. Does anyone here have any experience with this kind of thing? Anyone go to a pain management specialist or anything? I am just really scared because I don't want to be labelled a pill popper (even though with all the meds I have to take I'm sure I'd qualify!) or be blacklisted or something. I understand doctors need to be careful for themselves and their patients, but I also gotta live! Help!!!

 

[karlyg]

Brief update - got the name and number of a pain management doc in my area and will be calling tomorrow. A little concerned after looking at his website and seeing he mostly specializes in spinal pain and fibromyalgia type things, but I am going in with an open mind. My GI doc also called and told me he will make sure I have enough pain meds to keep things under control until I see the pain doc. I'm hoping a team approach may be what I need to get and keep my chronic pain under control. Here's hoping!

 

[ekay03]

Hello Karyg, I would say I am in a similar situation as as you. accept it is my gp that prescribes pain meds. I have another stuff going on that causes a lot of pain. He write it for that specifically, but the pain meds help my tummy more than anything else and they make it so I feel able to get out of bed in the morning and take part in life. I am sure you have learned your lesson, but I just want to touch on the pill theft. Dont ever leave pain pills out. pets children thieves, who knows what could happen. Yes it sucks to have to hide stuff in your own home, but it is better than getting robbed! I haven't needed pain management yet (hope never!) but I have heard of crohns patients going to them. We are not the norm you know. Most docs don't like to prescribe pain meds to crohns patients, They say it can cause bad things to happen in the bowels. If your symptoms change you know to contact your doc right away. One more thing, you are right in your concerns of being labeled a "drug addict" easy to pigeon hole a person that takes narcotics daily. But don't let effect how you feel about yourself. There is NOTHING wrong with you wanting to live your life comfortably! I hope all goes well at pain management.
Erin

 

[KWalker]

Hey CarlyG. Can I ask what type of Tylenol you're taking? I know you said with codeine but they start at Tylenol1, and I think they stop at Tylenol3. I've never heard of anything higher. Anyways, I find these are VERY mild pain killers. I have taken up to 3 at a time, every 4 hours and still havent found exact relief. Tylenol contains acetaminophen (sp?) and you can take up to 1000mg every 4 hours without having to worry about OD'ing or liver problems and each Tylenol3 contains 300mg. 3x300=900. So you're still in the safe range. Obviously as you drop in number with Tylenol, the lower mg rating they have.

I believe, (but dont quote me) that 3-4 T1's equal one T3, and two T2's equal one T3. Depending on where you are, you can actually get T1's over the counter at your local pharmacy and you DO NOT need a prescription. Just explain to the pharmacist and they will give them to you. The reason they cant put them on the shelf is because of the codeine. This way, if your doctor wouldnt give you a refill, this is an option for you.

Personally, I would try to get percosettes, but keep them out of sight of the suspected pill popper. Percosettes are pretty strong and when I take two of them I don't feel a thing, but usually get pretty spacey. You can take 2 of those every 4 hours as well. I've never tried 3 because I've been good with two.

Wow, I bet I sound like the pill popper now lol. I just have a lot of experience with pain and a good friend of mine is a nurse that knows a fair share about this stuff.

 

[stevereds]

sorry to hear you lost your pain pill bottle...not good. You should always keep them in a safe place..espec if you suspect someone might abuse them etc. you really need them for your crohn's pain etc. be careful and treat them like gold.

My Dr. gives me vicodin es and sometimes percocet 10's for pain.. but it isnt for tummy pain, it's for painful abcess fistula's I have. And they do help the pain though.

 

[karlyg]

Thanks for your input everyone. I agree it was a bad move to have the pills out, especially with people over. I left them out because I knew I'd need them and wanted to avoid the dreaded searching through my bagillions of other pill bottles in front of people to get to them. But I learned my lesson!
I take Tylenol #3's, 1-2 every 4 hours. I've been on stronger meds but mainly when my flare ups came coinciding with kidney stones or just for a few days or week after getting out of the hospital. I prefer the "weaker" meds, obviously, as long as they help get me through the day so that I can still function.
Thankfully, my GI was good enough to give me a new prescription and I just picked that up, so I should be ok until I get sorted with pain management. Feeling more hopeful today and less stressed about the whole thing. Thank you for helping to calm me down!

 

[jaggartini]

My GI has always said I cannot take anything with Codeine (or Ibuprofen) as it can affect the bowel even more. He has prescribed me di-gesics which has paracetamol and something else in it other than codeine which is much less strenuous on the bowel and assists with pain.

My recent hospital stay the ICU gave me Morphine which my GI got so cross with them as it's too harsh on the bowel. Maybe check with your Doc.

 

[karlyg]

My GI seems to be of the opinion that if I don't get constipated then the codeine is ok, but I just need to be sure to only use it when I really need it. I've been in the hospital before on morphine and gotten stopped up, which can become a vicious cycle because then it causes more pain. But, as I'm going at least six or seven times a day right now (sorry of tmi) he says it's ok for me to take the meds to get through the day. Good input, though.

 

[karlyg]

Have pain management appt on Monday. Looking forward to seeing what he has to say. Who knows - maybe he'll have some new ideas. Gotta have an open mind!

 

[ekay03]

karlygsuper duper good luck to you!!!

 

[karlyg]

Thank you!!!

 

[Jenny06xx]

Pain and pain meds are a massive issue for me I'm glad this was posted !

I started 8 years ago on immodium for undiagnosed constant diarrhoea and ended up on 14 a day to still be hit and miss .
My gi then gave me codeine phosphate 30mg 1 twice a day for diarrhoea ( didn't have pain at this time )
Gradually I started needing more and was taking 8 a day for the diarrhoea plus the severe pain , my gi was an utter arsehole an never gave a damn as long as I was controlling the diarrhoea he would see me every 6 months ! ( I was left for 6 years at thus dose. )
My pain also started getting worse , I think they no longer did the job because I was so used to them , so without advice I made the effort to cut down, only take minimum dosage an try really hard to not take them if possible .
I got them down to 4 a day an that never touched my pain just firmed up my stools so I only had diarrhoea once or twice every morning .

Then came 2010 !! Huge pain , uncontrollable diarrhoea , up to 8 codeine a day nothing helped me , long hospital stay and finally crohns was diagnosed !!!
I'd suffered sooooo long it was a relief to have a diagnosis although an awful one lol
I was then given pred plus lots of other meds but for pain swapped to tramadol 100mg 4x a day .

I found it amazing for the pain but still had diarrhea so was put on tramadol and codeine 30mg 4x a day .
Then tramadol just stopped working , I would take 4 at a time to deal with the pain an so kept putting my script in early , all the while my gp knew all this as I think I cried at every visit !
Finally he switched me to dihydrocodeine continuous release 60mg 2x a day and instant dhc 30mg 4x a day and I got relief at last !

Now Ive been upped to 120 mg cr 2 x a day an still at 4 x 30 mg instant release a day .

It's awful how much I have to take to manage but without it I would never leave the house ! Plus I can't just not take them as I will go into withdrawals , it's a horrible way to live but at least I'm living is all I can say , my kids need their mum to get up in the morning an be there for them constantly , take them to school , cook , clean , take them out u name it !

Do any of you have to take as much as me to function ?
There must b another way but as yet I haven't found it
So sorry about this long post !!!
Jen xx

 

[branvan]

I have a great GI that knows me very well, plus my wife is a pharmacist (and my GI knows this). For a long time (6 years maybe), I never used narcotics but also never got any real pain control.

Then one day, from a suggestion from my wife, I asked my GI if I could use hydromorphone when I have severe pain. He prescribed it in the injectable form, which is very strong and acts very quickly. I have never been to the ER since as I am able to control the pain myself.

I am very careful not to let the syringes and hydromorphone vials where someone could find them. I inject 1ml (so 2 mg) when the pain is very high. I use insulin syringes for this, which is much less painful the the bigger needles (so 1cc, 8 mm long needle, 30 gauge).

This has saved my countless trips to the ER over the years. But good luck finding a doctor who will prescribe it.

For more manageable pain, I use bentyl or buscopan.

Good luck to all with your pain management.

 

[emilyallison07]

I have a great GI that knows me very well, plus my wife is a pharmacist (and my GI knows this). For a long time (6 years maybe), I never used narcotics but also never got any real pain control.

Then one day, from a suggestion from my wife, I asked my GI if I could use hydromorphone when I have severe pain. He prescribed it in the injectable form, which is very strong and acts very quickly. I have never been to the ER since as I am able to control the pain myself.

I am very careful not to let the syringes and hydromorphone vials where someone could find them. I inject 1ml (so 2 mg) when the pain is very high. I use insulin syringes for this, which is much less painful the the bigger needles (so 1cc, 8 mm long needle, 30 gauge).

This has saved my countless trips to the ER over the years. But good luck finding a doctor who will prescribe it.

For more manageable pain, I use bentyl or buscopan.

Good luck to all with your pain management.

Is hydromorphone like Morphine? It sounds like it works the same way. I see a pain management dr who prescribes me Norco and something called Butrans patches. I feel like I might as well be putting a post-it note on my body with the Butrans but the Norco helps. I'm fearful of addiction, constipation and it doesn't really work very fast. I'm going to look up hydromorphone but any additional information would be great. I'm only 25 and my pain management Dr. looks like he's my age and we always discuss addiction and how it is a path that neither of of us want to accidentally go down. He says I'm young and he hoped we can move past the necessity but he's very understanding. He might be willing to prescribe something different. I don't know that I could give myself shots either. I never was able to do my own Humira injections.