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chadj162

Joined
Jun 3, 2016
Messages
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I have crohns disease and am in the middle of a terrible flare. I'm in a very annoying amount of pain (~5-6 on pain scale).

I cannot take prednisone or encort, and I just started on a new clinical trial...it won't help for a couple of months at best.

I've been looking into pain management as an option since my GI won't give me pain medication. However the first 2 family doctors both denied my request, the 3rd just gave me a anti-depressant and told me to come back in two weeks.

I'm lost at what to do. I can't work, I can't enjoy activities. Do I have any options? I am beyond miserable and am losing hope.
 
United states, north carolina

ronroush7 said:
I would go to the ER. Please let us know how you are.
Click to expand...

I have tried once, they just gave me a shot of dilauded and sent me home :(. I begged to be admitted for a few days and they refused. Ugh. I need pain management clinic so bad...
 
I asked because there are lots of folks on here from other countries than the US and I don't know how the system works elsewhere. I would definitely go to the ER. I go every month or so when my home pain meds don't work. IV pain meds work to "reset" my pain threshold. ERs are somewhat familiar with Crohn's and can be very helpful to folks with pain management AND referrals. Especially if you let them know you are struggling with anyone giving you help with that. They also tend to send me home with some to tide me over, but as my PCP is good with home pain meds and keeping me stocked (and monitoring me), I don't usually let them.
 
Thanks for the replys. I have one appointment on monday with my pcp, if he denies my referral request I think I'll just head to the ER and get one from them?
 
Ok. But also, don't be a hero. If you need pain relief before then (because it sounds like it's pretty tenacious pain), don't hesitate to go in over the weekend. Please. I know that constant persistent pain makes me a little crazy.
 
Also for my insurance I need the referral to come from my pcp...otherwise its 300$ a visit :(


Maybe a recommendation from the ER would get him to give me one? Sigh I'm not sure, everyone seems to leave me hanging.

Thank you guys for your fast responses! I had no idea such a caring community was here!

Definitely be staying here for the long haul.
 
Do you think getting the referral from the ER would put pressure on the doc to give me one? I've gotten 3 no's so far from Pcps/my gi :(. Pretty disheartening. Seems like no one cares if you are suffering anymore.
 
I think that the ER visit for the pain might jolt them to the seriousness of your discomfort. That's what I would hope. Make sense?
 
ronroush7 said:
That is a shame to be treated like that. I would try to get s referral from the ER.
Click to expand...



At least the referral from the ER could be utilized to reopen the conversation with your PCP regarding a referral or with your GI regarding pain management. That way, PCP referral would be better insurance-wise.
 
Well small update since you guys wanted to know. I came in for my Monday appointment....he refilled my tramadol which was nice of him even though it just takes the edge off....and upped my anti depressant. He said "we aren't ready for pain management just yet". I'm so frustrated <_<.

Should I seek a new PCP? The pain isn't bad enough for a er visit but it's bad enough to be miserable... any ideas?
 
What's the closest city or at least bigger town? You might have better luck in a more metropolitan area? I can't believe you're not even getting a pain mgmt referral from anyone. So frustrating, Chad. I'm so sorry.
 
jennyredsox said:
What's the closest city or at least bigger town? You might have better luck in a more metropolitan area? I can't believe you're not even getting a pain mgmt referral from anyone. So frustrating, Chad. I'm so sorry.
Click to expand...

Very frustrating :( . Thank you jenny for your advice and following the thread, I really appreciate it. Asheville, NC is the next largest town near me...around 100k people maybe I will have better luck there. I'll schedule an appointment now with someone.

Thanks for the advice you guys <3.
 
Well I decided to stick with him and give the Tramadol a try, it hasn't really helped the pain and has made my depression/anxiety worse and I get irrationally angry. I'm going to make another appointment with him and ask if there's anything else we can try....I've been on pretty much every med out there....tramadol/hydrocodone/oxycodone/dilauded/morphine/etc and I know what works best but it sucks you can't tell them that. Oxycodone was the only one that didn't put me to sleep and didnt **** up my head. If he refuses to try something besides tramadol I guess I will have to demand a referral.


Something else I forgot to mention....I was getting oxycodone a couple months ago from my pcp doctor, and I had trouble sticking to the dosage he gave me...so I had a few early refills. The last script he gave me he lowered the amount even though the pain was still there and I was growing tolerance to the med....long story short there was a miscommunication about how many I was allowed to take and he cut me off cold turkey and put "narcotic abuse" in my file. I will gladly do random pill counts/urine tests/w/e to prove I'm not abusing them. I have no desire to.

It was somewhat true and somewhat not true, I struggle with anxiety/severe depression and it made me feel better and made the pain go away.

This is why I want a pain doctor....because I know how strict they are and I can't **** up or I will be dropped.

I wish I had mentioned this earlier because I'm not sure how it effects my situation. I mean I have proof I am in pain...(colonoscopies clearly show moderate+ activity/ulcers) but I'm not sure if they will say too bad because I ****** up once.

Sorry for posting again, my anxiety has me overthinking everything! Looking for reassurance/advice.
 
chadj162 said:
Well I decided to stick with him and give the Tramadol a try, it hasn't really helped the pain and has made my depression/anxiety worse and I get irrationally angry. I'm going to make another appointment with him and ask if there's anything else we can try....I've been on pretty much every med out there....tramadol/hydrocodone/oxycodone/dilauded/morphine/etc and I know what works best but it sucks you can't tell them that. Oxycodone was the only one that didn't put me to sleep and didnt **** up my head. If he refuses to try something besides tramadol I guess I will have to demand a referral.


Something else I forgot to mention....I was getting oxycodone a couple months ago from my pcp doctor, and I had trouble sticking to the dosage he gave me...so I had a few early refills. The last script he gave me he lowered the amount even though the pain was still there and I was growing tolerance to the med....long story short there was a miscommunication about how many I was allowed to take and he cut me off cold turkey and put "narcotic abuse" in my file. I will gladly do random pill counts/urine tests/w/e to prove I'm not abusing them. I have no desire to.

It was somewhat true and somewhat not true, I struggle with anxiety/severe depression and it made me feel better and made the pain go away.

This is why I want a pain doctor....because I know how strict they are and I can't **** up or I will be dropped.

I wish I had mentioned this earlier because I'm not sure how it effects my situation. I mean I have proof I am in pain...(colonoscopies clearly show moderate+ activity/ulcers) but I'm not sure if they will say too bad because I ****** up once.

Sorry for posting again, my anxiety has me overthinking everything! Looking for reassurance/advice.
Click to expand...

Listen, I appreciate your honesty. Now for some of my own...

I have been sober from alcohol for nearly 24 years. I had surgery to remove some of my small intestine due to crohns in Jan 2011 and had been on (and continued to be prescribed) opiates for the pain before and after the surgery. In Oct 2012, I admitted that I had been using hydrocodone and oxycodone not as prescribed, telling myself that I was "staying ahead of the pain" when what I was seeking (some of the time) was the side effects. I was getting them from multiple sources and eventually I ended up in detox

I also struggle with clinical depression and those meds worked like an antidepressant for me. They kept me awake, made me more talkative, allowed me to do things that I couldn't normally do. Don't get me wrong, I was in a lot of physical pain, but that wasn't the only reason I "needed" the opiates

I still have a lot of pain. I still take opiates. I am on a contract with my pcp that she is the only one I get them from. I have prescriptions for tramadol (30 at a time) which I have to take with zofran (I get 15 at a time). If the tramadol doesn't work, I take hydrocodone (I get 20 at a time). If that doesn't help the pain, I go to the ER for IV Dilauded (plus IV zofran). They know me there and their computer system is connected to my pcp's system. I have a personal support system and keep in contact with those folks regularly about my prescriptions. I take urine tests to ensure I am taking what I am prescribed and not selling them, and I talk with my doctor regularly about my state of mind.

The fact is, I have lots of pain with no current solution other than to treat the symptoms. My past behavior does not make me ineligible or undeserving of relief. It only means that I have to be careful and accountable.

I am going to say it again and I want you to take it to heart: you deserve relief. You deserve to not be in pain. You deserve a reliable level of care.
 
ronroush7 said:
Hope you get help soon.
Click to expand...

Thanks :).

jennyredsox said:
Listen, I appreciate your honesty. Now for some of my own...

I have been sober from alcohol for nearly 24 years. I had surgery to remove some of my small intestine due to crohns in Jan 2011 and had been on (and continued to be prescribed) opiates for the pain before and after the surgery. In Oct 2012, I admitted that I had been using hydrocodone and oxycodone not as prescribed, telling myself that I was "staying ahead of the pain" when what I was seeking (some of the time) was the side effects. I was getting them from multiple sources and eventually I ended up in detox

I also struggle with clinical depression and those meds worked like an antidepressant for me. They kept me awake, made me more talkative, allowed me to do things that I couldn't normally do. Don't get me wrong, I was in a lot of physical pain, but that wasn't the only reason I "needed" the opiates

I still have a lot of pain. I still take opiates. I am on a contract with my pcp that she is the only one I get them from. I have prescriptions for tramadol (30 at a time) which I have to take with zofran (I get 15 at a time). If the tramadol doesn't work, I take hydrocodone (I get 20 at a time). If that doesn't help the pain, I go to the ER for IV Dilauded (plus IV zofran). They know me there and their computer system is connected to my pcp's system. I have a personal support system and keep in contact with those folks regularly about my prescriptions. I take urine tests to ensure I am taking what I am prescribed and not selling them, and I talk with my doctor regularly about my state of mind.

The fact is, I have lots of pain with no current solution other than to treat the symptoms. My past behavior does not make me ineligible or undeserving of relief. It only means that I have to be careful and accountable.

I am going to say it again and I want you to take it to heart: you deserve relief. You deserve to not be in pain. You deserve a reliable level of care.
Click to expand...

Wow I appreciate you revealing your story, it sounded just like me. It gave me energy, more social, happy, felt like the best anti-depressant ever that takes away the pain! like who wouldn't enjoy those side effects :p. It made me feel like I feel like I should feel.

I am glad you found a doctor that will help you still, and your story gives me hope. I really do appreciate you sharing that with me, I'm sure that wasn't easy to do.

You've been so responsive and helpful in this thread. I don't know how to show you my appreciation but just know you've done a lot for my mental state of mind.

Thanks again.
 
I don't mind. Opiates are a slippery slope and it doesn't take much for it to all become unmanageable. I hoped you would get a message of hope from that. Because I have felt like a loser and that I'd ****** up enough that no one would help me. But someone will. We are not alone. Just keep trying. And be willing to try what he asks for now. Use the tramadol long enough that you can honestly say you gave it a shot. And then ask him "now what?"
 
So I went in again saying the tramadol doesn't work and it was making me sick....So he gave me some Tylenol 3's 30mg 3 times a day. This barley touches the pain as well :( . I'm guessing I just need to do the same thing...wait 2 weeks and say it doesn't work?
 
ronroush7 said:
Go for a second opinion.
Click to expand...

Hmmm this seems to be the first doctor even half listening, I think he will eventually prescribe stronger painkillers its just a process I suppose.

Dr's seem to rarely prescribe painkillers where I'm at when they don't know who you are. Or at least that's been my perception.
 

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