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-   -   new to all this pain medicine. some friendly advice needed (http://www.healthboards.com/boards/pain-management/913427-new-all-pain-medicine-some-friendly-advice-needed.html)

bongomatic 08-09-2012 12:49 AM

new to all this pain medicine. some friendly advice needed
 
[B]Hi everyone my name is Daniel. I am 27 years old and 3 years ago I was having very bad pain in the top portion of my stomach, well come to find out I had gall stones and the Dr told me he wanted to take my gall bladder out and needed to run a scope down to see them. Take into consideration I've never been sick or hurt til now. I agreed and he told me there would be a small risk of tearing the opening of my pancreas when the scope passed through, and of course it did. So bad they couldn't get it to heal and it created a psuydocyst on my pancreas. So I was told while I'm under for the gall bladder surgery they would drain the cyst and remove the infected portion of my pancreas come to find out that was about 80% of my pancreas. Anyways this was the worst pain I've ever felt in my life. They started me on 2mg of daludid every hour by iv pump. Well I spent 6 months in the hospital because of this. They finally sent me home on 10/325 hydrocodone. They wouldn't drain the cyst yet because it was to soft. I was told to wait for 3 months and we would try again. I was given 90 10 mg hydrocodone every month. I was taking as it was prescribed 1 every 6 hours as needed. Well this helped for a few weeks so I decided to change doctors and went to my states university hospital and they put me on Norco 10 mg 1 every 4 hours as needed and was scheduled to have another surgery to drain the cyst in 3 more months I was given 120 norcos at this time. They did the surgery and tied the cyst to my intestines and was told to give it a month or 2 and it should go away. Well 9 months later it still hasn't gotten any smaller and the pain meds weren't working as well anymore so they put me percocet 10/325 120 a month been on these about a year now. I don't know if I'm addicted I just know without them I hurt. I feel like total Crap and the cyst still hasn't gone away and I am scared to have another surgery due to the risk of becoming diabetic anyone been through this kind of thing?
[/B]

luvinmusiq 08-09-2012 01:45 AM

Re: new to all this pain medicine. some friendly advice needed
 
[QUOTE=bongomatic;5036539][B]Hi everyone my name is Daniel. I am 27 years old and 3 years ago I was having very bad pain in the top portion of my stomach, well come to find out I had gall stones and the Dr told me he wanted to take my gall bladder out and needed to run a scope down to see them. Take into consideration I've never been sick or hurt til now. I agreed and he told me there would be a small risk of tearing the opening of my pancreas when the scope passed through, and of course it did. So bad they couldn't get it to heal and it created a psuydocyst on my pancreas. So I was told while I'm under for the gall bladder surgery they would drain the cyst and remove the infected portion of my pancreas come to find out that was about 80% of my pancreas. Anyways this was the worst pain I've ever felt in my life. They started me on 2mg of daludid every hour by iv pump. Well I spent 6 months in the hospital because of this. They finally sent me home on 10/325 hydrocodone. They wouldn't drain the cyst yet because it was to soft. I was told to wait for 3 months and we would try again. I was given 90 10 mg hydrocodone every month. I was taking as it was prescribed 1 every 6 hours as needed. Well this helped for a few weeks so I decided to change doctors and went to my states university hospital and they put me on Norco 10 mg 1 every 4 hours as needed and was scheduled to have another surgery to drain the cyst in 3 more months I was given 120 norcos at this time. They did the surgery and tied the cyst to my intestines and was told to give it a month or 2 and it should go away. Well 9 months later it still hasn't gotten any smaller and the pain meds weren't working as well anymore so they put me percocet 10/325 120 a month been on these about a year now. I don't know if I'm addicted I just know without them I hurt. I feel like total Crap and the cyst still hasn't gone away and I am scared to have another surgery due to the risk of becoming diabetic anyone been through this kind of thing?
[/B][/QUOTE]

Welcome to the site Daniel :). You will see that everyone on here is very helpful and understanding. I am so sorry that you are going through the ongoing health issues. I know it can be frustrating but don't give up. you are the one that is suffering not the doctors. I have not had that particular problem before but it was close. I have a auto-immune disease that attacks it's own organs and tissues. A few years ago I ended up in the hospital because I couldn't hold anything down. I would vomit at least 15 times a day. I couldn't drink water without throwing it up. They told me that I had some problems with my pancreas and they figured it was because of my illness. So they put a stent in my pancreas. Later that night my stomach was hurting so bad that I just knew I was dying. The nurse had to page the doctor at around midnight because the 2 mg of dilauded they were giving me every 4 hours was not even helping. The doctor ordered that I take 2mg dilauded every 2 hours. So I know how bad that pain can get. From the way you describe what is going on, I don't think you are addicted. I believe your body is dependent on it. It is a huge difference between the two. As you said, you take your meds as prescribed. For as long as you have been on pain meds this is very common situation. I believe that once you have the surgery and slowing wean you down off your meds, you will be fine. Right now you are in a lot of pain so it is nothing wrong with taking the meds. Taking pain meds can be such a scary thing to people because of the reputation that it holds. But I have always said that the protest people have with pain meds is like the protest with gun control. And the bottom line is it's only harmful and dangerous if it is in the wrong hands. Well is the percocet working? It sounds like they need to put a move on that surgery. I would talk to your doctor and see if there is anyway that you could speed this process up. But as far as you being addicted....you have to understand that when you take those kinds of meds for years you will experience so withdraw symptoms. So when you don't take the meds for so long the body reacts quickly. This is only my opinion as a pain management patient. Everyone on here are pain management patients. Is the doctor prescribing the meds to you a pain management doctor? That is something you may want to look into if they want to wait all this time to do the surgery. Tell that doctor that you need this problem solved. I know that you have probably heard this but pain meds isn't good for the pancreas. It is very common that with pain meds the pancreas can become damaged. Not saying that it's happening to you but It can happen. Sometimes we get so wrapped up in trying to feel better that we tend to forget that the meds can cause quite a few health problems. Also your eating habits may be making the pain worst also. You already had gallstones. Well I hope that you get this surgery soon so you can get on the path in feeling better. Hope that you keep in touch and let us know what is going on. Muah!

bongomatic 08-09-2012 03:25 AM

Re: new to all this pain medicine. some friendly advice needed
 
No the doctor is a GI Doctor. General Surgeon. I have thought about going to see pain management. Without any insurance its really hard to get in to see one here. As most the ones who accept cash arent taking any new patients. I drive 200 miles once a month to see my GI Doctor. They told me if we have to do another surgery is anymore of my pancreas is removed, I will become diabetic. Something I do not look forward to. If I could just reach a steady level of comfort with the help of a narcotic pain med as bad as it can be for me, I kind of would rather do that. They told me I would have to have a insulin pump. The next surgery would be removing the head of my Pancreas as thats the only part left. As I said ive been going through this the last 3 years and sometimes I cant afford to get to my GI doctor and I have to go see random doctors just to get some kind of help. I would love to be able to see 1 doctor who would sit down and listen to what has happen and actually care instead of wanting to just rush me out the door and see the next patient. I havent been able to work at all since I was struck with Pancreatitis, and they deny my for any Disability because of my age and the fact that once my Pysudeocyst is gone I will be fine again, atleast this is what they tell me. I am single with no kids, so Medicade wont accept me. I am almost at the end of my ropes with getting help as far as insurance goes. I hate bouncing from 1 doctor to the other and sometimes when I have no money I have to take trips to the Emergency room because it flares up so bad and radiates to my shoulder to the point where I can not even more my shoulder. Which they say is common in patients with Pancreatitis, I guess a nerve problem or something. All my doctors just rush through me, and when I go see my GI doctor it is always a different doctor in the same office. They dont know my history other than what they ask and the short paragraph the doctor before him left in the notes. They are quick to give me pain meds, but never ask if its helping or how it makes me feel throughout the day or anything. I dont know, I guess im jsut using this forum for a place to vent and I really shouldnt. Just dont know to do anymore.

Prettyinpink81 08-10-2012 11:58 AM

Re: new to all this pain medicine. some friendly advice needed
 
Hi Daniel, I think musiq gave you some excellent advice but I wanted to chime in about not having medicaid. I am on state insurance and its extremely difficult to deal with but it can be done. Each state has different requirements but most states do not require an asset test and base eligibility based on your income. Because you are not working you should be able to get it. The first thing you need to do is gather every doctor/er/hospital bill you have, get a letter from your GI doctor explaining your condition. Reapply and submit everything. If you get denied, contact legal aid and they will help you. Good luck.

tortoisegirl 08-10-2012 08:58 PM

Re: new to all this pain medicine. some friendly advice needed
 
Welcome! So sorry you are struggling. I can relate to struggles with this chronic pain journey. The advice to see what state insurance you may be able to qualify for is a good idea. Also ensure you are getting any other benefits you may qualify for, such as food stamps. Every little bit helps. Some states have their own disability programs too. Make sure you appeal the federal disability claim, as it is normal for them to deny it the first or even second time. You can get an attorney for no up front cost (they only take a percent of your back pay if you win). As far as specific stuff with the pancreas and disability, some of the other forums can probably help you out.

I wonder if you can even find a local primary care physician who would see you in between GI doc visits, prescribe your pain meds, and generally oversee your care and give you more medical stability? I did that for years before going the PM route, and still use my primary doctor to manage my health since I see so many specialists. He prescribes all my meds except my pain meds (the PM doc took those over once I started)...he has been comfortable taking over prescribing anything which a specialist prescribed, as I'm sure a lot of primary doctors would.

That has got to be tough to essentially chose between the chronic pain and diabetes / insulin pump. Plus, is it even guaranteed that the surgery would take away all the pain? I guess it depends on how well your pain can be managed on the meds. 50% pain relief is a good goal for pain management. I'd try your best to start that conversation with the prescribing doctor of how the meds are helping/not helping. Keeping a pain log of your levels throughout the day and what you could and could not do may be more illustrative.

If your dose isn't lasting until the next dose is due that is another thing to mention, etc. If it ends up surgery isn't a good option and there aren't any other feasible treatments for your pain, a long acting pain med may be a better option to give you better and more stable relief. Vicodin or Percocet aren't really good med option to be taking around the clock every day in the long term (both due to the Tylenol and the stability of the relief). You need to have that doctor who listens to your discussion of your pain and your goals to start that discussion though. Hang in there! Best wishes.


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