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Chronic pain w/ Crohn's Disease.
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ConstantPain1984 posted:
Hello, I was diagnosed w/ Crohn's Disease at the end of 06. The docs originally thought it was appendicitis, found a blockage and performed a bowel resection, then two months later, I had to have another surgery due to another blockage. Now over a year later, I am still suffering with severe abdominal pain, I've been on every treatment available to no avail, and haven't been able to hold a full-time job since I originally became sick. My internal med. doctor is weary about pain management and says to talk to my Gastroenteroligist about it, who just tells me that my internal med doctor will have to work with me on my pain. I'm just getting the run around, because *Most* people with Crohn's are perfectly fine with treatment, but my symptoms have never been relieved even though the normal tests don't show a flare-up. How can I get the help I need?? It is almost impossible to get out of bed in the morning, and I have absolutely no energy to even spend time with my family.

Please help... Thanks, jwinchester
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freedom1960 responded:
Tell your PCP this. You won't get pain management from the GI doc. If your GP won't help you with pain meds (they also ALL cause constipation, by the way, so you would need a stool softener at the very least because of your Crown's) have him give you a reference to a pain specialist that uses narcotic pain meds to control pain. Not an anesthesiologist that only does injections because that is NOT what you need. Be forceful but not angry about it. Just tell your doc you can't live this way and even though the Crohn's type of meds help a little, you need more help in the form of medication and ask him what he thinks you should do. I take it the regular NSAIDS and Tylenol routes everybody tried first don't work? I know a few people with Crohn's and one has a narcotic pain management doc. The other one refuses to take them but I think he should because I've seen him in really bad shape from the pain alone. Doctors also think MS doesn't cause pain, but it most certainly does! Maybe your doctors don't realize what kind of pain Crohn's patients deal with? But let your doc know "This is not funny anymore and you need more help." If he won't prescribe you anything tell him to please guide you to a pain management clinic or doctor so you can get some actual relief. And sat it similar to that, only in your own words. Don't ever ask for a narcotic by name. That makes the doctor think you are a seeker. No matter how old you are. I had a pain specialist look at my long hair and judge me and I'm 48 and NOT a drug addict. I was sent to her because my Rheumatologist knew the 6 Norco per day he was prescribing wasn't gettin' it! But she saw my long hair(I'm a rock musician and it's part of the job!) and I smarted off at her when she said Soma was addictive and I said "No they're not!" with conviction because I'd just stopped taking them every day for 3 years or so and I stopped suddenly one day and had absolutely NO WITHDRAW! I don't know why they have all of a sudden come up with this, but Soma(carosiprodol-sp) is not addictive to me. I became dependent on my Norco I've been taking for ten years, but not the Soma, and I know I never would have been because I would have been if it was possible. I'm rambling as I usually do. But talk to tour doctor and if he doesn't get it, ask him to refer you to someone who can help you. You have a right to pain management! Everybody does! Good Luck!

Rick
 
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ConstantPain1984 responded:
Thanks for the advice, I guess I need to be more forceful w/ my Doc. Whenever I'm around them I feel like I'm either demanding too much or forgetting to say something important. My int. med doc said that if I'm still having trouble (and obviously I am), then maybe a Pain Management doc would be able to help. Just curious though, besides meds what other treatments will be explored at pain management clinics? I'm open to just about anything.

Thanks again, jwinchester
 
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freedom1960 responded:
Besides medications, there are lots of other things that help lots of people, like bio-feedback, acupuncture, learning relaxation techniques, etc. I must say I've tried all of these and they didn't do a anything for me. But at the time, like you, I was willing to try anything! Now, these techniques may help you, but they didn't me. Hypnosis is pretty big right now too, but I can't be hypnotized. But my pain management doctor I had at the time insisted I see this psychologist for bio-feedback and all this other stuff that I've mentioned that is very expensive and not covered well with my insurance. She forced me to see this guy, a nice guy but he did me no good, even though it was actually fun. He even said at my first visit: "Well I see Dr. _____ is forcing you to see me." And I said "Yeah, she thinks I'm a drug addict." But when I first saw this pain doctor and she said she wanted me to see this psychologist, I told her I didn't know if my insurance would pay for it. Her reply was "This is not negotiable! You WILL see Dr. _____ or I will take you down real quick!" What a B___h she was! Taking me down quick meant taking me off my Norco I'd been on for 9 years at this point, very quickly! Quick enough to cause severe withdraw, I took it. I was sent to her because my Rheumy was prescribing me 6 Norco per day and he knew that amount wasn't cutting it. But he wasn't comfortable prescribing anything stronger or more than 6 Norco per day and I understood that, from a "DEA" point of view I guess. LOL The first thing I said to this doctor was, besides "Good Morning" was: "Soma is not addictive." That came out because she saw that on my drug list and started scratching it out, telling me I didn't take it anymore because it was too addictive.Add my long hair, and I'm deemed a drug addict. I do admit I was acting funny because I always have panic attacks when seeing a new doctor and I was trying to hide a doosy of a panic attack that day, along with it being a very bad pain day too. So, put that all together and you get a drug addict I guess. I wish you better luck. Finally, after 4 months or so of her "weaning me" off the Norco,I saw my Rheumy. He was always so compassionate, but she had him convinced I was a druggie too. So as I ramble on about being under treated, I can say my new PCP(my old one went to be a "hospitalist") has taken over as my pain specialist and is now giving me the proper drugs. Well, sort of. I am taking a pretty large dose of MS Contin (30mg-twice daily) along with my 5 Norco per day and to be honest, I've never had morphine work well except in the hospital when they put it in my IV. Strange, I think. But since OxyContin is the next step in my pain control, and is no longer generic, I can't afford it so I don't know what's next, but I like the fact that my new PCP is trying.

Now, as for you, don't be TOO forceful with your doctor. That can be just as bad as not being forceful enough. Be more pitiful. LOL I'm sorry but sometimes to get them to understand, you have to be pitiful and I hate to say that because it shouldn't that way. I don't really mean acting, but just be honest and tell him you can't live this way. If he comes up with a drug that is non-narcotic that works,well that's all the better,right? But so many times doctors undertreat pain and I think you are being undertreated. Just remember to never ask for a narcotic by name. They hate it when you've done research and are smart.I don't know why and it's not all of them. My new doctor is OK with intelligence though. I write down everything I want to talk to him about on my computer,and if we don't get to everything because HE'S too busy, I let him keep the notes to read later.I've got a copy at home on my computer anyway! I always keep notes of any questions,suggestions,and so on. Just don't put anything in your notes that you don't want your doc to see.Like: "I don't know if he knows what he's doing?" LOL Good Luck!

Rick
 
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ConstantPain1984 responded:
Thanks for replying!! I've started writing down some notes about what's going on, what makes the pain worse, what Tylenol/NSAIDs do (or don't do) for me, etc. The PM clinic here is pretty new, but I'm hopeful the doc knows what he's doing. It's getting so bad, the only relief I can get is a trip to the ER, but that is only a temporary relief w/ a morphine or demerol injection. The ER docs seem to believe me about the pain, but they can only do so much, then refer me to my reg. doc and the vicious circle continues. I know narcotics aren't a preferred treatment for Crohn's, but since the traditional anti-inflammatory medications, steroids, etc. don't help I really think they need to realize I know that I won't be cured w/ pain meds, but at least I'll have some relief along with the hundreds of other meds they're throwing at me!

I don't wish chronic pain on anyone, but I do think the doctors need a little insight to realize that some people DO hurt all the time, sometimes for no reason (or no reason they can determine).

Thanks again, James
 
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ConstantPain1984 responded:
Hey all,

Just wanted to update. I'm seeing a pain management doctor now, and he is awesome. Since I don't have insurance, he went over the different options, but told me he's going to wait until I can afford the different treatments. He put me on a couple of anti-depressants (I guess they can help pain too) and a month supply of percocet, so at least he's not scared of prescribing pain meds until the cause is figured out.

Thanks for the support,

James
 
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boss302kirk responded:
Hey James, Since you and Rick seem to be in need of some advice, I'm your man. I've suffered for over 27 years now with pancreatitis along with a Crohn's kicker and I've tried every schedule II narcotic there is, until I hit the right one. What you and Rick need to realize is that your doctor is not in the narcotic business... he's in the pain control business. All users, including myself, have to understand that we are searching not for narcotics, but QUALITY OF LIFE!! Contact me at boss302kirk@WebMD and I can advise you on the steps you need to follow to get a proper quality of life, even with narcotics. I love to help people and have the knowledge and compassion to back it up. Be looking forward to hearing from you and Rick. God Bless. boss302kirk@WebMD
 
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boss302kirk responded:
ConstantPain1984, Hello James, check out my reply to this post as I can help you deal with this monster which I also have. You can find me as boss302kirk. Read my profile... you'll find you have nothing to lose and all to gain. Good health brother. boss302kirk
 
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purplebutterflytg responded:
Thanks!!!!! This is GREAT!!! To hear from other Crohn's suffering folks that CAN"T get help for their pain from their doctors. I have requested to go to a pain clinic & my primary still hasn't set it up for me!!! Maybe b/c she doesn't think that I need the help with my EVERYDAY pain. She refuses to write me a presription for any pain medicine. Other wise I wouldn't have to ask to see yet another doctor for pain management. She'll give me Tramadol, but that's it.....and what's the point in taking something that doesn't work for my pain!!!! I'm just like you and have to go to the ER at least twice a month to get temporary pain relief. It shouldn't be that way!!!!! I should be able to communicate to my doctor that I'm in pain & she should do something to help me!!! I sometimes feel like these doctors don't take us seriously about it. She's been my doctor for a long time & I don't want to have to switch doctors b/c of this but that's what I may have to end up doing. Also Crohn's disease is not just a physical illness, but it has certainly taken it's toll on me emotionally. My family & friends have had to suffer as well. I have found myself having social anxiety b/c I have to ALWAYS know where the bathrooms are & yeah I've had a few accidents. That is totally embarrasing!!!!! We've gone from a two income household down to one over all of this and we stand to loose everything unless our "wonderful" government decides to stamp approved on my disability claim soon. This has also affected my marriage in a BIG way. He can't stand to see me in pain and know that there's nothing he can do & every doctor I go to just gives me more pills to take. I'm only 28yrs old & I'm going through all of this and taking more meds than my grandmother did. I also have osteoporosis & osteoarthritis already. This disease has taken over my life!!! I am only asking for some pain relief so that I can have "some" quality of life back. If anyone has any ideas about what I should do....I'm all ears!!!!!

Thanks Everyone!!!! Talisa
 
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kkl05 responded:
James, I also am looking for help for my 16 year old son who has had Crohn's since the age of 8. He suffers from chronic stomach pain and has already missed almost 50 days of school this year. He is an active normal kid. We have great confidence in his pediatric GI however he does gloss over the treatment of pain and has pretty much said my son will have to find a way to cope with it. I feel your frustration and worry about how he will be doing when he is an adult.

Goodluck to you!

Karen
 
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greg8846 responded:
Hi James:

I started out with Ulcerative Colitis in summer of 1978 , from there in 1979 is progressed on to full blown Crohns Disease. I was a Paramedic/Deputy Sheiff, firefighter. I was forced into retirement,you know when you have a severe bout 20-30 bloody bowel movements a day, you become enemic lose 30-40 pounds you don't want to lose this way. listen I have been on Oxycontin,MS Contin, several other shedule two narcotics, you need a good doctor your GI doctor is not going to write you any narcotics, he worried about you obstructing again, i know the pain is terrible, get a new GP and get a new GI doctor then try to find a good pain doctor, i know there hard to find but your pain is real, i don't want you to suffer the way i have, look on living with chronic pain on the pain site your on now.

Let me know what happens Greg Armstrong Emt -P Emt-A Ems Inst Ret
 
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greg8846 responded:
Dear Karen;

I have had full blown Crohns disease since 1979 i was a Paramedic,Deputy Sheriff,Fire fighter for several years i had to retire in 2000 due to health problems rheumatoid arthritis, imflamatory arthritis, i had my leg amputated because of a big screw-up by a doctor spent over 400 days in the hospital. had a severe staff infection which a doctor failed to treat me. I have severe pain all my life your sons pain is very real it needs to be treated properly he has no quality of life , he needs to be treated right,he needs pain medication, his GI doctor is worried he will perforate, get a new general practioner, as well as a well versed pain doctor he needs HELP' Let me know if I can help you, GOOD LUCK.

Greg Armstrong Emt-P/Emt-A/Ems Inst Ret
 
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corlaw responded:
I am sorry to hear of your issues, I have had crohns disease for 20 years since I was 15 years old and I have lived through it, most chrohns patients react best to anti-depressants and antiflammatories, narcotic pain meds are normally a no no, if you have a dr willing to give them to you i would proceed with caution. I like you have had 2 bowel resections and most patients of crohns or ulcerative colitis also have IBS as well which is what is keeping you in bed. If the white blood count shows inflammation normally Flagyl is the antiabiotic they use to treat if WBC count is ok then it the IBS giving you tremendous trouble, I have probably been to ER over 100 times in last 20 years for this awful disease, while fast acting IV narcocits is ok for partial obstructions, abdominal swelling etc.. it is not recommended for home use for the crohns disease because the GI is correct in stating that a perforation or other full blockage that is fatal can happen while taking the pain meds simply because they slow the bowel and the only sign you have of recurrence is pain and you need that message to get to hospital immediately and be checked out. If after blood work, they control the pain the you know it was the IBS, home meds can cover up the warning signs of this sometimes fatal disease. I know that is not what you want to hear but I ahve researched my disease for over 20 years and understand alot of the issues, symptoms, and pain as I have experienced all the meds working, not working, prednisone, etc...

What I would recommend to get your quality of life returned would be get some large info on the disease as you will be living with it the rest of your life, You have to work with your GI and get your disease under control before it begins to control you.

For the first 17 years of my disease, I did not comply with doc orders, the diet, the bloodwork, follow-up appts, I had went years with out a GI doctor and relied solely on ER treatment, take it from someone who knows this is not an option you want to continue.

check your diet and make sure your not eating any no no foods or drinking alot of carbonated beverages. I know that the noratriptilyne and anatriptile work fabulous for the pain of this disease but I had to stop it because of allergic reaction. Many GI's will may prescribe this depending on your doctor. Also which noone told me after bowel resections (because I did not follow up with a GI) your body starts having malabsorption with all three of these disease which in lay terms means your B-12, vitD, and potassium levels will need to monitored at all times. If GI does not ask about this or assumes yours have bben checked maybe you could ask and let him or her know were you are at as a patient. each one is simple to check with blood work, if you are or become deficient in any of these areas your 50-60% of your pain and belly hurt is coming from this, its like running a car while it is missing three of its fluids.... I am currently on B-12 injections every four weeks at my primary and they also have nose spray but I did not like it. I take potassium every day, defiency cause mood disorders and leg pain, cramping etc... vitamin D is what keeps calcium in your body and keeps your bones from crumbling. Thes are all vitmain supplemants that have given me my life back, as for abdominal pain and swelling, looking like I was 6 months pregnant, a probiotic at Walgreens is what my GI prescribed for that it is called ALIGN probiotic, I tried generic because it costs approx 30 dollars a month but it did not work and GI said the others are not developed the same.within 3 days it had taken away all swelling, intestinal gas, and PAIN, I am also on remicade, if your GI recommends this I hope it works for you, it has been godsend for me I hav been in remission for 2 years now.

Not taking care of the disease is what led me here, B-12 defiency gav me perm damag to spinal chord and vitamin def gave me DDD in Cerv and Lumb
 
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corlaw responded:
James, I see you also do not have insurance for all the blood work, meds, and treatment so I would recommend filing for disability, even if your working this will cover you with medicare after your year kicks in they approved my case in 45 days..... with backpay, it will also give you access to medicaid in your state where you would normally not be eligible, I went through major bankruptcy in 2000 for the first surgery and no ins as well as not keeping up with treatment by a GI, please dont make that mistake as I stated earlier, I am young and was your age when I had those insurance issues which have put me here in the pain boards because I have developed new lifetime ailments that you could possibly avoid if you take action now, Crohns is not listed as a disability but the Irritable bowel syndrome that comes with it is, if you ever have questions or anything relating to crohns please feel free to email me because the remicade itself is 22,000 every 6 weeks for infusion at hospital but there are programs available for you to receive free meds and free GI, anything please do not hesitate to email me at Rizvanovicm@yahoo.com, I will try to help any way I can or anyone else on this board with the dreadful disease, questions about disability, doctors, payment for meds or treatment, anything please fell free to email me. If any of this helps you I hope it does help for you to get your life back. Michelle
 
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gailb54 responded:
Hi Greg,

This is Gail and I'm truly hoping to be helpful in telling you that it might help to watch both the dates that posts were first made which are right at the top under the "Subject" line AND check the person's profile by clicking on their username if the post is kind of "old" so that you won't waste your time making a reply to someone who no longer is here. When I was "new" here I finally noticed that I was replying to some people who would never be back and just wasting my time and wanted to keep you from wasting yours. However, your thoughts and information will always have a chance to help someone else, so I don't mean to be rude at all but just helpful. This is just a head's up in case you had not known that yet. Thanks for how willing you are to help others!

Take care! gail


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