Healthcare Nightmare

[Dhicks1982]

Hey guys,

I was diaganosed with Chrons back in September of 2011. Shortly after my diagnosis I was hopitalized due to a obstruction and underwent a small bowel resection in October. Since then, I have continued to have pain in my abdomin and I stay nauseated almost constantly. After several ER visits and 15 CAT scans later my Insurance decided I may want to seek a second opinion. They were able to get me in to see the specialist at the Mayo clinic. Immediatly we went to work and scheduled a lot of tests and procedures. The norm, endoscopy and colonoscopy, absorbtion tests and MRI. My Colonoscopy revealed that I had a small area of active chrons.

My doc says that I should not be having the symptoms im having with that small of an area infected. While undergoing these tests which were spread out over a couple of months. I had intermitten visits to the ER with the continued pain and nausea. They begain the normal routine, IV fluids, nausea meds and pain meds via the IV. I would be so drugged that most times I didnt know my name when i left the hospital. The second those meds wore off, like clockwork the symptoms came back. My doctor would change my meds (predisone, remicade) and diet to attempt to avoid any more ER visits. I have been prescribed every narcotic to help the pain and every nausea med there is. Some days are better than others. and for the most part I feel ok, but with no warning i can start to cramp and within 30 min. be in full scale 10 pain and vomiting. Yesterday was the worst day I have expierenced during this whole ordeal.

I went in for my MRI, optimistic this test would reveal something. During the prep I was given the Barium to drink and they started an IV for the contrast. I wasn't able to get through the first bottle of contrast without vomiting. The nurses decided I still had ingested enough to preform the test but after the MRI at there advisement I was wheeled over to the ER. I was just at the same ER less than 24 hours before due to the normal issue. THe nurses said they wanted me seen to make sure i wasn't alergic to the barium or the contrast. I agreed and there I sat getting more fluids, narcotics and benydryl (just in case) .The ER nurse came in and ask me to rate my pain, at that point I said 2-3. She claimed she would check with the doc. to see if she can give me a lil more before she discharges me. In my haze I patiently waited. The Doctor and 2 Nurses then barged in the room and proceeded to advise me that I was addicted to IV pain meds. and they want me to be admitted to a detox program immediatly.

They were trying to get me to set up a POA and allow them to call the social worker to come and have me admitted to one of the facilities. My partner was with me and was able to make sense of what they were saying and I was in and out of it due to my narcotics high. We ultimately decided against it and finally was able to leave the hospital 8 hours after i arrived for a hour long MRI. I now feel so betrayed and upset at the whole situation. I entrust the ER and Doctors with my health. I have Chrons and a plethora of narcotics at home. I certainly am not addicted. I dont have the money to continue to go to the ER for no reason. I have insurance but i still have to pay a portion, which I cant afford already. I am 29 years old and never been sick until I got Chrons. I Dont know what to do or who to trust at this point. Has anyone else been in this situation or a similar problem? if so please share your outcome.

THANKS!:sign0085:

 

[kllyeve]

It seems to be common that those of us suffering from chronic pain with no readily observable cause - broken limb - are often accused of faking being in pain to get pain medication due to an addiction not a real need. You are not the first to face this and won't be the last.

I had many episodes like yours - repetitive partial small bowel obstructions and other than a slight stricture on the barium xray nothing jumps out to say why I had them or why they stopped. I did get to the point where I only had Boost or smoothies as I was afraid to eat and set things off.

I did find taking pain meds as soon as the cramps started headed off the worst of it. My Doctor gave me tramacet to have at home so I could head off the attacks at the pass.

Keep a log of when you take pain meds, how bad the pain is and a log of your ER visits so you can show you are not abusing the drugs.

 

[tots]

Next time if its a male D-r ask him if he would like to pass a kidney stone without pain meds. A female Dr- ask her if she would like the option to have pain meds during labor and delivery!

Usually when you are in pain your BP goes up- that alone would indicate pain. And I dont know of a way to "fake" a high blood pressure!

I know "back in the day" whrn I was 28 and trying to finally get a Dx I was looked at as a "drug" seeker. Throwing up kinda helped that out!!

Good luck and feel better soon. I will be thinking of you!

Lauren
:ghug:

 

[Dhicks1982]

Thanks!

Thanks for the responses, it's nice to know I'm not alone at this. I am in no way a "drug" seeker. As I said I have every narcotic Avalb. Sitting in my medicine cabinet. Most of which I'm allergic to! So they do me no good anyway. Tramadol and dilaudid are the 2 that my body responds well to. I have the GI diary on my iPhone and I keep up with meals, meds, pain etc. through that. But how do I get the ER to understand? Every time it's a dif doctor. I asked my GI doc if we could have a standing order so when I had to go to the ER they knew what to do and not scan me 100 times or just drug me to the point of no return? He declined even though the ER is on the 1st floor and his office on the 2nd of the same building he said "we just don't do that" which is a lie because I have a friend who goes to the same hospital when she has migraines that her meds don't cure to get treatment. They have standing ER orders for what to do for her to avoid head scanning her so much. I just want to get back to my normal life, be productive at work and live without the fear of pain all the time. This has put such a strain on me mentally and physically. Hopefully I will get over this I just am a Lil let down at our healthcare industry.

 

[Judith]

You guys are not alone. I have been there too. My infectious disease specialist actually put "Drug Seeker?" in my chart. I am sure the question was because nothing was working for pain and she had to keep switching me...... then all of my test results came in plus my joints swelled up to the point that my fingers were essentially locked-up. The next page after my test result packet said "NOT drug seeking".

I am thankful she revised my chart but it is disappointing to be questioned in the first place.

To add to Kllyeve's and Tots' points about the broken bone and kidney stone.... at least with this type of pain you know it will eventually end. The most difficult part about chronic pain is that you dont know when it will end.

But have faith, it will.

You are not alone. I "ouch" you back.