Pain Management

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dawn636
Regular Member


Date Joined Aug 2005
Total Posts : 42
   Posted 9/2/2008 2:58 PM (GMT -6)   
What do you guys do about pain? My dr's always pretty much refuse to discuss it and I can't go on like this. Does anyone know a pain management Dr for Crohns pain? All the ones I've called say they don't treat abdominal pain, but I think someone should? PLease help, the bridge looks better and better by the moment ☼

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 9/2/2008 3:27 PM (GMT -6)   
Have you tried specifically asking your doctor for painkillers? It seems to me that a lot of doctors avoid the issue, and then when they are forced to talk about it, they tell you that painkillers just mask the symptoms. My answer to that was, of course it masks the symptoms, that's what I want it do! Try writing down your request and your arguments for pain relief on paper and bringing it in with you. If your doctor is still unwilling to prescribe basic relief, then ask for a referral to a pain management clinic. If he's refusing to do that, I would find another doctor, personally, but you could always check with your insurance company for pain management specialists, sometimes you don't need a referral. good luck, I hope you find the relief you need. I have a doctor who has always been willing to call in a script for Vicodin for me, even though his nurse seems to think he shouldn't!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


dawn636
Regular Member


Date Joined Aug 2005
Total Posts : 42
   Posted 9/2/2008 3:55 PM (GMT -6)   
yes KImberly, thank you for your response. I have asked them straight up for meds, they just make it so hard and are so unwilling, my Primary ends up prescribing for me. Its just that I need someone not afraid to step it up when I get so bad I should be in the hospital.. My issue is that the two things that were working are no longer cutting it and I gotta come up with something else. I don't think that is my job. I have called pain management specialists and asked for referrals from all of my Doctors and I got no answers and like I said before the ones I've found in my "network do not address abdominal pain. I am just blown away when I get those answers. I even called a lawyer once to see if I could sue someone for not addressing my pain and letting me suffer so. Thank you for getting back to me I appreciate it, I gotta go roll around on the floor now and try not to cry, crying always seems to make it worse, thanks again Dawn☼

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/2/2008 6:23 PM (GMT -6)   
Hi Dawn What other meds are you taking for your Cd? How long have you been having that much pain? When mine got really bad I went to emerg. I did get a needle once for pain but the problem was I was having a blockage and needed better care then I was getting at home. If the bridge is looking that good maybe you should be in the hospital or on better meds for your CD. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3926
   Posted 9/2/2008 7:33 PM (GMT -6)   
Ask your primary care giver for a referal (sic) to a pain management clinic. Many will be happy to give it. Most Gastro's are untrained in pain management & often hold old, outdated beliefs about it & our DD. Or go to the ER & get the referal if all else fails..

Sincerely,
Matthew

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3926
   Posted 9/2/2008 7:37 PM (GMT -6)   
OK, sorry about that. Ab pain is pretty difficult to deal with. So many may not treat this. Hmm, maybe you should go to the ER and find out the reason your pain has been getting worse. Is it possible you have a stricture? Unfortunately, surgery may be needed.
On the other hand, several members here use the patches, you might bring that up with SOMEONE. The only advise I can give you now is stay on the phone until you find someone who is willing to help!

Sincerely,
Matthew

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/2/2008 8:51 PM (GMT -6)   
First off you need to know why you are having so much pain. Do you have a stricture, inflammation......, Do you need pain management until the proper meds can take effect, or do you have pain that will be on going and unresponsive to treatment? These are things to consider. I have mild to moderate pain most days, but I have what my doctors consider to be very small areas of ulcerations at the site of my anastomosis. They don't know why I have pain, and so they were unwilling to treat it.

Now I go to a pain management clinic. Because my pain is relatively mild I'm OK with the clinic I go to. They are not as aggressive in treatment as some clinics, but thats OK with me because I just want to take the edge off the pain and function. If my pain level were to increase I would have to seek out a more advanced clinic. So, once again, things to consider when you are asking for a referral. BUT, you deserve to be able to live your life without pain. If your doctors are not willing to treat your pain, then they need to give you a referral to someone who is.

A lot of GI's want to treat the source of the pain, but they seem to forget that while those meds are taking time to work, we still have to live our life and often times that means we are in pain.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


dawn636
Regular Member


Date Joined Aug 2005
Total Posts : 42
   Posted 9/3/2008 6:03 AM (GMT -6)   
Thank you all for your help. I'm just having a flare as the Humira is just not working anymore. I was doing one shot weekly I had to start some pred 30 mg's but as most of you know it takes awhile to reduce the inflammation and in turn calm the pain down. It's just these in between times while waiting for the roids to kick in. It's so crazy how they just ignore my requests for a pain management clinic. I will try putting in calls to the local hospitals to see if they can recommend me somewhere, thank you for that suggestion, I hadn't thought of contacting a hospital before. I'm in upstate NY by the way if anyone knows anyone around that area. I also am concerned because now the Humira's not working and the Dr didn't seem too thrilled about Cimzia, he said the side effects were more dangerous than the Humira, but I have a feeling that's my next step. I just wonder why I cant do the pred at 7 mg's daily seems to work once I drop below that the trouble begins. I feel like its less dangerous than these crazy drugs they want me to take. I can work on keeping bone density if that's the biggest concern. Thank you again all who responded. I wouldn't have made it this far without you guys, thanks Dawn☼

dawn636
Regular Member


Date Joined Aug 2005
Total Posts : 42
   Posted 9/3/2008 6:07 AM (GMT -6)   
Just a quick note, I have asked to be recommended but they seem to have no idea about it, and never have gotten back to me, The looking on my own has only frustrated me as the ones I have found only treat back pain????????? I'm hoping the hospitals have some recommendations. thanks Dawn☼ I'll keep you posted, my thanks ☼

kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 9/3/2008 10:51 AM (GMT -6)   
First - I am so sorry you are in pain. I have been there and it stinks!

Here is what I learned recently from my doc when I was going thru a tremendous amount of pain:

1 - Pain indicates that something is wrong. It is VITAL that you treat the cause of your pain, not just the pain.

2 - According to my doc, studies have shown that there is a higher incidence of perforated bowels and a host of other issues in Crohn's patients who are taking narcotics. While, there are many reasons this may happen, they just have not pinpointed exactly what it is. In the meantime, many docs will not chance it.

3 - One pain med that seems to be safe for Crohn's is Tramadol (Ultram). My doc has recommended using this ONLY as a bridge from when the pain starts to when they figure out what is causing it and when they treat the cause. He does not want me on Tramadol long term. Also, I should use it in conjunction with Tylenol for the maximum benefit

I know that the pain is soooo awful that you are willing to do or take anything...just be careful.

You are in my prayers - please keep us posted :-)
35 year old female - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Immodium, Zoloft, Wellbutrin, Seroquel


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/3/2008 2:26 PM (GMT -6)   
Hi Dawn I know what is like when the meds don't kick in they can only do so much. Have you had x-ray or CT lately ? When the meds didn't work for me I had to have a resection my problem was TI narrowed and nothing but surgery was helping. You could be at that point too. My GI would have kept me on pred. after surgery but the surgeon said I had been on it for a long time and still had narrowing. So it was Imuran and I got a rash from that so no meds for now. I don't know much about pain management programs but definitely keep a watch on what is going on inside because things can get to emergency levels if we msk the pain then it might lead us to bigger problems. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


dawn636
Regular Member


Date Joined Aug 2005
Total Posts : 42
   Posted 9/3/2008 6:22 PM (GMT -6)   
hey guys thanks for your responses. I will be in to see Dr at 4 tomorrow. Im sure I'll have to do some sort of testing and try to figure where to go now that the Humira has failed, God I hate saying that, Thats probably why I'm so bad now I didn't want to admit another failed medecine. To me it feels like the same pain I've had since day one. My tummy is just so aggravated. They have said I'm not a candidate for surgury as the disease is intermittant throughout my whole tract. From what I remember mine is mostly in my stomach although my first Doc thought that was very unusual I usually feel better as the pred takes effect . it just seems to take about 4 weeks on a 30-40 mg daily dose. Like 3 o'clock to 7-8 I want to admit myself to the ER but it subsides to a degree that I can function somewhat with the meds I do have (Darvon) after that but you guys know the minutes seem like hours when it's that kind of pain. I did also request my records sent to the pain mangement place at Albany med, they will review it and see if they can help me. I'm not very optomistic because Ive had records sent to a place before and they denied me. I also have an issue with Tylenol, makes me double over for some reason, and I did try Ultram with absolutely no effect whatsoever .uggggghhhhhh I want to donate myself to science as a guneia pig and try anything available, I'm thinking stem cell therapy might be good for Crohns patients, thanks everyone for all your help, thoughts, support, and prayers Dawn☼

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/3/2008 8:04 PM (GMT -6)   
Hi Dawn I know how discouraging it is when a med fails I felt that way when I came off Rem. hang in there. Maybe your on to something with the stem cells. I really hope the pred. kicks in sooner then soon. Maybe it will heal up some of your skipped spots. How long have you had it in your stomach? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

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