crohns patients who take xr/cr pain medications

Hello all!. I'm writing an informative piece of information that my doctor and I discovered or came up with last week. I have taken every CR medication known to man such as oxycontin, mscontin and Opana. I am a Crohn's patient with a severe case. I have had more surgeries than I can remember and lost count at 10. My pain has been out of control for at least 8 months now. My medication regimen included Remicade or Humira with one of the above following medications and Dilaudid IR 8mg. My pain has been at a high of a 9 on nearly everyday so recently I gave up and felt I could no longer take the pain. Well my mother and wife found another PM Doctor that is rated in the top 10% in the nation and the top 1% of the state of Texas. To top it off he is a very young doctor in his 40's. Anyway I met with him along with my wife and explained my situation along with providing all of my documentation regarding my past surgeries and testing. I told him that I was getting zero relief from the XR/CR medications and only getting relief from the 8mg Dilaudid Instant Release. I had been seeing another pain doctor that was just getting me by so he thought and said that he was already giving me alot of medixine for my pain and would not go up on it. This new PM Doc told me that he believed that my body was not processing the XR/CR Medication as a normal person would because of the Crohns disease. He went into further detail and the mechanics of how the digestive system processes the XR pain meds vs the IR meds. He told me that he wanted to prescribe me  the fentanyl transdermal patch as this would bypass the stomach/digestive tract. To make a long story short he has given me the 75mcg patch, 8mg dilaudid ir every 4 hours as needed, along with fentora; a wafer made of fentanyl that is used for pain. it is 400 mcg. He told me that the fentora could be used for emergencies when my pain becomes extreme 8 or 9, to keep me from having to go to the emergency room. This doctor has so far been a god send and it is no wonder he is rated as such.

 

In conclusion it never crossed my mind that my problem was the xr pain meds and the way my stomach digested or processed them. My advice for anyone with crohns is to keep this information in the back of your mind if it's not working out with you taking the Xr medications.

I had a similar conversation with my former PM clinic. They understood that because pain medications are absorbed in the bowel and I have less bowel and what I have remaining is not functioning well I was probably not getting much of what they were prescribing. However, they were unwilling to change my regimen. I had surgery soon afterward and my surgeon wanted me to go to a different PM clinic. That clinic doesn't use ANY narcotics for Crohn's pain and only wanted to treat me with anti-depressants which I react badly too. I am now left with no pain management and a surgery that didn't help the problem. I don't want to be on pain medication on a daily basis, but I also would like to live my life without having to be in pain on a daily basis.

It sounds like you have found a winner of a doctor.

Vicky, at the moment I am muddling through, but not happily. My GI would prefer I not be on any strong narcotics. He has given me some tramadol, but frankly it is like taking tic tacs. If things don't start turning around soon I will have to do something, but I don't know what. The pain clinic I was at, was clearly out of their element and only wanted to treat back injuries. The one I just went to (surgeon and GI recommended) was the only one at my hospital and they aren't even covered by my insurance, let alone the fact that they only use anti-depressants. I know the Pain Clinic at the Boston hospital I go to doesn't RX any narcotics and will only do alternative treatments, so that sort of leaves me up the proverbial creek. Eventually I will have to figure this out because I am sick of living like this, but my PollyAnna attitude refuses to admit that the doctors just might not find an answer to what is going on and my situation might be permanent!

Doctors and nurses don't take pain nearly seriously enough.

I was lucky with my recent hospital admission. After groaning my way through A&E and then groaning my way through another night, I was attached to a morphine drip after that, which, for me, worked. (Plus hardly having anything to eat for the first few days then going on an exclusively liquid diet probably also helped.) But an old lady I was sharing a ward with was in pain nearly the whole time, and all the nurses kept on offering was useless paracetamol. Eventually I tried to get one of them to give her something stronger, who agreed to l morphine, but the old lady refused it on the grounds it was addictive =/ ... Think eventually she did take it, but not enough of it to stop the pain.

Anyway, because she was old, because she was stoical and a non-complainer, her time in hospital was made vastly more miserable by being in pain. As with nutrition, it seems like pain management is at the bottom of the barrel, priority-wise, in hospitals. I suspect it's 'cos decent pain management is actually not easy: it requires a personalised treatment plan, doesn't necessarily work first time, and so on. The nurses and doctors on the wards don't have the time for that type of subtlety.

Sorry if that was a ramble; brain is scrambled at the moment, to be honest.

Sadly, the only reason I have meds for pain is because my GYN prescribed them to me after I told her that my pain level increased so much with my period. If not for that, my GI would let me suffer.

I do understand GI's being hesitant to prescribe pain meds to patients who do not have active disease, but it's absurd that you have to beg and plead for pain relief when things are bad. I can't count the number of times I've been treated like I was a drug seeker in the ER when I was there for an obstruction. I've been completely lucid, reading a book (to distract myself from the pain) after being given meds, and have had nurses roll their eyes or ignore my request for more pain meds.

Oh, and striped, my surgeon has UC so should know how much pain CD can cause, but the strongest med he will prescribe is lortab (even after surgery). You'd think living a day in the life would cause them to be more empathetic, but sometimes that's not the case.

well personally i have had so many surgeries inside my genitalia and rectum that it has caused extreme nerve damage and having a bowel movement puts me at a pain level of a 9 most times, plus i have a ruptured disk pressing on the s1 nerve root that has also caused permanent damage. my pm doc said that i should consider a pain pump in the future unless we can get my pain under control with these medications.

I think they like to start off with small amount and see how you get on with them. I'm lucky as my GP is handling my pain meds and we have been working at trying to find something that helps the pain, leaves me able to function and go to work (ie not doped up) and still has the codeine to slow bowel down. Currently on 300mg gagapentin, oxycodone 5mg every 6 hours and 30mg amitriptyline at night. I could take the oxys every 4 hours but have tried to stick at 6 hours. She gave me 2 weeks worth and see her tomorrow to review the doseage, think I'm going to suggest restarting the fentanyl patch as it did give me good cover but 12mg not high enough and when I increased it up it reacted badly with the codeine and made me feel drunk as hell, cheap for a night out! :) but hopefully with the stronger oxys (was on co-codamol and tramadol) which I process before the 6 hours and having the fentanyl for constant pain relief that doesn't have to go through my digestive system. Want to try and avoid taking the pain meds every 4 hours if I can and need to increase the gabapentin as well. Hoping this combo gives me enough pain cover so I can get back to work.

I understand ALL of this!
I've had Drs tell me that Crohns doesn't "hurt enough" for actual pain medication.
He actually told me he believed I was just drug seeking. He said he'd been in practice "long enough" to "know" when someone is in "real" pain.

Wow.
He is no longer my dr. I'm lucky to have found the dr I have now.
I basically told "god" listen- you need to guide me to the right dr!
And I found him.

Crohns is absolutely horrible. I also have the arthritis component so, I'm in pain 24/7- my meds I take just keep me functional.
If I did not have my current regimen I would be bedridden and dehydrated.

I've worked in the medical field for years and I actually start a new job at a pain clinic on Wednesday! I'm really excited for the job.
I'm also VERY curious to learn and see how they deal with crohns people.
It sucks being sick all the time....and on top of it trying to fight any dr to believe your pain is just such hell.

My suggestion would be to keep looking until you find a dr that will actually meet your needs...we all know this is easier said than done.
But if your dr will not listen to you-
Time to find someone that will!

Drs are such a trip. It's like umm hey...I'm paying you and they still act like the authority.....we pay for their service!
Don't give up.
If you are being treated poorly that dr does not deserve your money.
If a plumber came to fix your toilet and did not- you would never call that plumber again nor would you want to pay him for the job he/she did not do!
Good luck to you all...
It's been a long hard road to find someone that listens...
But, I found him. Even though I'm medicated I'm still sitting here just in so much pain....thank god I at least can take the edge off and function in the world.
God bless