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Pain from Crohn's
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An_249952 posted:
I am very frustrated with the care I have received thus far. I feel like my GI doctor is unwilling to try to comprehend the magnitude this disease is having on my life. I am sick all the time and in addition to my Crohns I have a myriad of additional health problems that range from vitamin malabsorption to Pulmonary Sarcoidosis. My stomach hurts daily and when I have a flare up the pain is indescribable. Sometimes the pain is so bad I just want to go to sleep and not wake up. To many that read this my statement may seem extreme but to those who have expirenced the kind of pain I am speaking of they will understand. Now with that said I have no intentions of rolling over and letting this kill me or even having me feel like I would rather die because it's simply not true. I want to live and have a great deal to live for. That is why I have decided to post on here. I never do anything like this because I am a very private person. I am willing and have been from day one to try anything to manage this pain, and when speaking to my doctor's staff they make me seem like a drug addict and I resent that so much it's not funny. I am 40 years old and I can say without a doubt that the only addiction I have ever had was to a man and that didn't end well so I have avoided ever feeling like that ever again. From what I've been told about addiction that was the closest I have ever come to one. So it is beyond my realm of comprehension that most people in the health care community would rather demonize me than help me. I have offered weekly drug testing, picking my pain meds on a weekly basis and I even asked to be referred to a pain management specialists but to no avail. Any suggestions anyone can offer I am at your mercy. As I type now I am having a flare up and my thoughts aren't as cohesive as I would like but from the posts I've read so far I think most of you will understand where I'm coming from.
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annette030 responded:
You GI doctor will naturally only treat the Crohn's Disease or other GI problems, not pulmonary sarcoidosis. That is beyond his specialty. It sounds to me like you have decided that for you, opiates are the only answer. I don't know if that is true or not. If he is of the opinion that you don't need opiates, find a second opinion, if you feel you will never agree.

You might try stating exactly what you cannot do due to the pain you have everyday. The loss of function often works better for someone that just saying I hurt all the time.

Take care, Annette
 
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jamillaquan replied to annette030's response:
Thanks for your reply to my post. I have 3 doctors. A GI for the Crohns, an Internal Medicine doctor for my lungs and a family doctor for some of my other conditions. I have been suffering with crohns for 3 1/2 years. It took them 2 years to diagnose me, and I have been on every type of medication thought to believe to help my condition to no avail. Every medicine worked for a short period of time and I was back at square one. It has been the same with the remicade and my body is no longer responding to the treatment. I definitely tell my doctors more specific details about my pain other than I hurt all the time. That was a general statement I put in my post. I live in a very small town in the south and I have had 4 opinions and not one of them agreed with the other about how to treat me. The one doctor I found that could have helped was 2 hours away from me and wanted me to move. I was posting to maybe hear from someone who suffers from this and can relate to the pain and not pass judgement. Since there is no cure for crohns and the pain is an ongoing I don't know of any other pain relief methods I will go with whatever works. As I stated I'm willing and I have tried everything my doctors ask of me.
 
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annette030 replied to jamillaquan's response:
My cousin's late husband had Crohn's for many years, but he never took opiates for that chronic illness. It is an auto-immune disorder and has no cure that I am aware of.

Again, I would state up front, if you feel opiates are the only choice you have at this point in your life, and the doctor you do have won't give them to you, you may have to change doctors.

When you say the only doctor that "could have helped" you was two hours away, and you are already seeing a family doctor, why cannot he give his recommendation to your family doctor? Your family doctor could have followed up with you, and done whatever needed to be done.

Take care, Annette


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