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Post by michellep on Mar 20, 2007 1:59:15 GMT -5
I am 24 years old with Crohn's disease, and suspected Endometriosis. Both of these diseases cause me so much pain and nausea that sometimes I have to go to the emergency room. EVERY SINGLE time I go, they ALWAYS think i'm a drug seeker and actually tell me that! Not to mention, my veins are screwed because of all the steroids I have had to take via IV. I am normally in so much pain and vomiting so much I can hardly talk. I can't take anti-inflammatories which the only next choice is narcotics; and The only nausea medicine that seems to work is Phenergan, also a narcotic. I am just so darn frustrated I could scream. I really hate having to convince people i'm in pain. Even when I get my perscriptions I am afraid to take the amount I really need to stop the pain because i'm afraid theylle think i'm frickin addicted or something. Does anyone else go through this rediculous routine? Sometimes it just makes me so angry, and I end up having to suffer because of it. So, that was my rant and rave. It feels good to get it out. It will feel even better to know that i'm not alone in this. Michelle
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Post by cherry on Mar 20, 2007 5:34:46 GMT -5
Hi michelle, it sounds like you have things pretty bad right now and you're right the last thing you want to have to do (besides stifling your own screams) is convince doctors that you are not making it up! That's the same reason I hate going to get pain meds. Last time I saw the locum he suggested I try paracetamol. What a laugh. Have you tried more natural stuff like peppermint tea or ginger for your nausea? Just to try and break away from all those narcotics. The way you are treated seems very unfair esp when you definitely have Crohn's on top if the suspected endo, and I hope you get some relief soon xx
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Post by akcheryl on Mar 20, 2007 8:36:57 GMT -5
I definitely know what you're going through. I'm deathly allergic to aspirin and all NSAIDS, so I can only take Tylenol (which does nothing), or narcotics for pain. I have migraines and severe neck/back pain (as a result of a serious car accident in 2000), and fibromyalgia (which doesn't help the situation). I also have severe sinus problems (for which I've had two surgeries in 2005 and 2006), which causes very bad sinus headaches. I've basically had a constant headache for the past 6.5 years, which includes debilitating neck/back pain about 3-5 times a week.
I've already gone through years of physical therapy, chiropractic treatment, drug treatment (Vioxx, Bextra, Celebrex, Indomethacin...), massage therapy, etc., but my pain is no better. The last time I went to a dr. about my pain, she acted like I was drug-seeking, which I was not. She wanted me to go back to PT, but I didn't see the point, 1) because if 5 years of PT hasn't helped so far, I don't think anymore is going to do any good, and 2) because I travel so often and it is very difficult for me to keep up with a rigorous PT schedule.
The only thing that really helped my situation was explaining that I don't WANT drugs, I just want the pain to go away. If I could have some nerves in my neck cut, or have a spinal fusion (which they won't do at my age), then I would gladly have it done. She finally ended up giving me a prescription for Amitriptyline, which is an anti-depressant that is sometimes used to treat pain (it somehow changes the way the nerves fire). Unfortunately, I couldn't take it at all because of IVF (although my mom has had success in treating her fibromyalgia pain with it).
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Post by akcheryl on Mar 20, 2007 8:52:03 GMT -5
Oh, and another thing...
I know that drug-seeking is a big problem. (I have known of people who have killed themselves trying to cause injuries that will get them drugs.) However, I've taken Percocet, Darvocet, Hydocodone, etc., and never felt the least bit "high." How many pills are these drug-seekers taking?
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Post by cherry on Mar 20, 2007 15:06:00 GMT -5
It's awful isn't it, that you can be mistaken for people who can get so desperate they will hurt themselves. I have felt absolutely out of it on the opioids i was given initially so I guess it's how your body reacts individually. However I just felt sick and weird so I don't understand how people want to feel like that! It's definitely not fair for docs to assume that knowing you have a potentially agonizing condition, and maybe they should consider how much you're hurting that you seek those levels of pain relief xx
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Post by michellep on Mar 20, 2007 23:54:38 GMT -5
Oh my goodness! I can't believe people would hurt themselves just to get drugs. I yelled at the docotor this last month in the ER because he said I was a drug seeker. I was so dramatic, I said," FINE! don't relieve my pain and just sit here and watch me throw up my intestines, and die from the pain". He gave it to me right after that, but I was so embaressed. When I am in pain like that, I am such a different person. I am going to start a whole knew treatment I am putting together myself. I have been doing a lot of research, and am going to go pure natural for nausea and inflammation. I am going to try acupuncture as well. I am just waiting for my lap to be done on April 9th. I am absolutely terrified for my next period to come. This is the worst month I have had with pain and nausea every single day. I have a feeling in four days when I start, I will be right back in that dam ER. One more month of this torture, then I get some PROOF! Thanks for listening to me whine ladys =)
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Post by kb on Mar 21, 2007 2:44:12 GMT -5
Sounds like your having a rough trot.
I know what its like to have pain and nausea all the time, no fun at all. Hope you get on top of things soon.
Having a bad day myself, and after getting worse and worse all day and tolerating it as i always do, ive eventually been reduced to tears and had to take my drugs.
Its also beyond me why people would want these drugs for pleasure, i hate taking them with a passion, and will only do it when i really need it.
Ive done a fair bit of work in emergency in my past life (pre constant severe pain) and ive seen drug seekers, they are obvious and will generally admit it openly if asked, being quite comfortable with it. But those in pain are just as obvious, ive seen bad treatment of patients in severe pain when it is believed by some they are seeking, its a terrible attitude and the mark of a bad health care professional, the behaviour is inexcusable. Who are they to judge anothers pain, and if they miss the odd seeker, so what, who gives a rats, the person seeking is also in need of help, just a different kind. Judgemental fools. You can never determine anothers pain, its impossible, a good health care professional believes those who claim to be in pain, because most of the time they are.
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Post by michellep on Mar 21, 2007 16:06:48 GMT -5
How can I get the doctors to believe me, once I go to the ER and they think i'm a drug seeker? Can I threaten a law suit or something? I know that sounds a little harsh, but the longer they wait to decide if i'm telling the truth, the worse I get and I literally feel like my body is just going to give out.
I am so humiliated, every single time I go to the ER because I have to say, "no, it's JUST my period." Not one person believes I am in as much pain as I say i'm in ( and to be honest, I think it is quite apparent) Should I get the news involved? It is really that important to me. The amount of suffering I do while I sit there waiting for them to decide what to do, is just too much any human should be able to handle.
(by the way, I was on birth control before. It helped so so much but then we found out that any type of hormones flare up my Crohn's Disease)
I really feel like I need to do something about this. I am not a drug seeker, and have to suffer because that is what they think. Any advice would be wonderful. Thanks =) Michellep
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Post by kb on Mar 21, 2007 22:12:08 GMT -5
Yeah i dunno what u should do, its tricky.
Its awful that ur being treated like that, i guess the best thing u can do is try not to let them get to u (i know easier said than done), try to ignore their opinions and just be forceful and persistent until u get what u need.
The other option may be if u can get a good GP on ur side, one with a surgery with after hours access, maybe get the GP to understand ur situation so it can become known what u need, that way any GP from the surgery if u call them out after hours knows the situation and will give u adequate pain relief without the need of dealing with emergency, more expensive, but maybe more effective (mind u dont know where ur from, not sure if that service is available everywhere).
I guess the other option though more long term is to find a good naturopath who may be able to manage your condition better than it is currently being managed. May even have some ideas to help u cope with the pain until the moronic emergency staff give u that much needed pain relief.
Another idea is to visit a different emergency department, even if u have to travel (if possible), the staff at the one u normally may go to likely know u, and if they already have u marked as a seeker u will have no end of trouble and may be better to use a different hospital.
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Post by ouchy on Mar 21, 2007 22:36:51 GMT -5
Could you call the doctor who performed your lap for endometriosis and request a script from him? I get my Vicodin prescriptions from my gynecologist who did my surgery. But then again, I've also gotten Vicodin prescriptions from another doctor and also a nurse practitioner who both understood the pain w/ endo. Actually, one doctor gave me a prescription for Vicodin before I was diagnosed w/ endo just due to severe cramps that Motrin wouldn't touch.
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Post by michellep on Mar 22, 2007 0:37:20 GMT -5
My lap isn't until April 9th =/ I have an appointment with the pain clinic on April 13th? I think, need to check date. The Gyn I have right now is new, and he will be performing my first lap to try and figure out what the heck is going on.
He has perscribed me 10 Vicodin a month, and Phenergan (nausea) suppositories, as well as pills. My whole problem is, the nausea meds dont work even if I take them before I start because the pain is so bad. It becomes impossible for me to hold any meds down at all. Eventually, after trying every method possible: scolding hot bath, highest heat on heating pad, bf rubbing my pressure points in my lower back, etc....., I feel like I have to go to the ER because I can't take it anymore. I can tell this doc and his nurse thinks i'm a drug seeker. I just can't wait to prove it.
After I heal from my surgery I am going to try accupuncture as well as a complete diet and excercise plan. I have to beat this, because all the docs think i'm a druggy.
By the way, the laast ER doc told me I will most likely always be suspected as a seeker every time because I can't take anti-inflammatories. Some docs are unfamiliar with Crohn's, therefore, automaically assume I just want narcotics.
Can't take birth control, can't take anti-inflammatories, can't take hormones because they flare my Crohn's, and don't want Lupron (those side effects would make me worse off than I already am) I don't know if there is anything anyone can do for me, except a histerectomy. But I want at least one child first. Thanks for the suggestions ladys, It feels so good when someone replies to my posts. This is definitley a great line of support.
Michelle
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Post by kb on Mar 22, 2007 23:50:46 GMT -5
Doc's unfamiliar with Crohns? Wow never realised that, always thought that was one they were well aware of, well they should be.
Ive got a friend with Crohns, also with endometriosis, and i know how much pain she can be in, its terrible that doctors dont recognise it, shameful actually.
I really hope u get on top of this, pain is no fun at all.
((((((((((((((((((((((((michellep)))))))))))))))))))))))))))))
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Post by michellep on Mar 23, 2007 22:01:11 GMT -5
I know! Isn't that rediculous? I have ran into 2 doctors so far that had no idea what the heck Crohn's disease was, and that they admitted it. Both had to go refer to some book in order to make sure I wasn't lying about Crohn's patients unable to take anti-inflammatories. Just sad.
Wow, I thought I was the only one with Crohn's AND Endometriosis. I am so curious how she is manageing the Endo? Both my Gastroenterologist as well as my Gyno are stummped on treatment. Only thing seems to be Lupron, but my body is broken enough! I read about all the nasty side efffects and bone loss, no thank you. If you get a chance, could you ask how she is manageing her pain? Thanks!
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Post by kb on Mar 24, 2007 8:19:12 GMT -5
Shes a friend through my sister, so i dont see her alot unfortunately, though i love her like a sister, would really like to catch up with her again. Maybe thats as good as an excuse as any for me to make the effort to catch up with her.
Last i spoke to her she was getting accupunture for the pain, with some success, she'd discovered that when the pain starts she tenses up and makes the pain worse, so i think it helped with all that. Im not sure what hormone therapy she is on, actually think she might not be on that. She has had a number of laprascopes and had it burnt off, but it never lasts, always comes back.
I will try and find out more for u though.
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Post by michellep on Mar 24, 2007 14:57:53 GMT -5
Could it be possible that my fear is making my pain worse? I know I definitely tense up when i'm in pain. Even the first dose of demerol and phenergan in the hospital doesn't work. Every time I am about to start, I know i'm gonna hurt and I bear down and get ready. Sih' it's so horrible. =( I am going to try Acupuncture right after my first lap.
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