My story and Advice Needed

[matthewsg1]

I was diagnose with Crohn’s Disease my freshman week of college in 2002 after waking up one morning and immediately passing out when I attempted to get out of bed. When I came to and went to the restroom I was passing nothing, but blood. After two weeks in the hospital and seven blood transfusions I was diagnosed with Crohn’s Disease. Eleven years later I am still having reoccurring problems with my Crohn’s and recently spent from Dec 24, 2012 to Jan. 26, 2013 in the hospital. While there I had several blood transfusions, platelet transfusions and a baseball sized abscess removed from my liver.

Since my latest release from the hospital it seems my doctors have my meds balanced and I feel better than I have in several years. The only problem I currently have is something I have been battling for about three years. About once every two or three months I get this pain that starts it the pit of my stomach. It starts as a dull aching and within an hour intensifies into a severe throbbing pain with waves of intense stabbing pain that radiates out my back. Usually the only way to get the pain to stop is to go the ER and get a shot of dilaudid. My doctor has conducted every test imaginable and cannot find anything that should be causing the pain. No ulcers, no gall stones, nothing. As of now my doctor is calling it Crohn’s related pain.

What is strange I can go to the ER with the most intense pain I have ever felt and be given one shot of dilaudid and the pain immediately goes away and does not come back. This is great, but I cannot afford to keep going to the ER every two or three months. On one visit to the ER the doctor gave me two oxycodone pills and told me to take them when it occurred again and see if they would treat the pain. About two months later the pain came back and I took the oxycodone and the pain was gone within about two hours. I informed my Crohn’s doctor of this and asked for a prescription to save money on ER visits but he is hesitant on giving me one.

Has anyone else every experienced a pain similar to this. If so was your doctor able to diagnose and treat it? I would love to be able to put an end to it for good.

 

[nogutsnoglory]

I have not been in remission so I don't have the same experience. It sounds like you would be well off with pain killers on hand so you can avoid the ER. Can you explain to the doctor that this happens infrequently and you only need one prescription. You won't be abusing it. He could give you as few as 5 pills if he is reluctant.

 

[Jim (POPS)]

I just went to the doctor today in regards to pain. We had a long talk about pain meds. and I came away with this. I will be taking pain meds. I really don't want to take then because they are/will be addictive. (I took them for over 5 year and got hooked 5-6 Norco a day)

At this point I have a differant outlook on pain meds. Take them ONLY as needed.

As the Dr. said, (I'm 62 years old.) You can set around in pain and not have a good quality of life or take them and have a much better quality of life. SO, I also had a conversation about him not "pulling the cartep" out from under me if I've been on them for a while. We had a good talk ALL about the pain meds so I feel beter about taking them at this point.

If I were you I would have a heart to heart talk to your Dr, or change Dr's. With crohns it's all about the quality of life. Thats the truth. All the Dr's can do is treat the sympton's.

I hope things will work out for you. It is no fun being in pain and know you have to go to the ER to get treated.

Jim (POPS)

 

[Traumanurse]

The Dilaudid works for the pain because it slows down the bowel. Sounds to me like when this is happening Mathew your bowel is spasming. Dilaudid is a great drug for exactly that.

The oral narcotics do the same thing, just not as fast, and can be taken effectively if not overdone. Sounds to me like Pops has his figured out.

I haven't taken narcs for 11 years because of dependence on them with Crohns back then, but I found I could take a couple last week after obstruction, and did just fine.

I think balance is the key.

 

[723crossroads]

I think people with addictive personalities are the ones that get addicted. I was on painpills after I had lower back surgery for 3 months and then just stopped.
Then again when I had cancer and after the surgery. I quit taking them again. Now that I have arthritis and fibromyalgia and degeneration in my spine there are days I need one. I take one when I need one and that is it. My Dr. never once gave me a hard time about a refill. I guess because he knows all my conditions. But if you use them just when you need them, you will be fine.

 

[mccindy]

It really depends on how they are used. When I had severe back pain my doctor put me on Methadone, which is usually used to treat heroin addicts. It's very addictive and I had to wean off of them over about three months. With medications like Vicoden and Oxycodone, they aren't really addictive, they create a dependency because of how they make you feel. It's best to only use them when needed. If that mindset is used, it's easier to only take them for pain control.
With the methadone, I was so addicted I counted down the time til the next pill. Not because it controlled my pain (it didn't), but because my body was addicted. Weaning off of it was the hardest thing I've had to do in my life. I would never take it again.
I do take Vicoden for pain and only as needed, perhaps 1-3 times per week. I don't have any problems with feeling like I need to take a pill for the pill's sake, just to relieve pain.

 

[matthewsg1]

Thanks for all the responses. The doctor has finaly given me a few oxycodone to have on hand, but I really wish I could find out the cause of the pain to put an end to it. When it occurs I can't work due to having to take pain meds so I am missing work on top of mounting ER bills.

 

[723crossroads]

Glad your Dr. is finally being a good one! Use them and feel better!:ghug:

 

[Astra]

Hiya matthew

This pain could be a stricture, these are caused by either inflammation or scar tissue built up over time. When inflammation hits, the stricture narrows, and can cause an obstruction. The pain is excruciatingly unbelievable!
The pain throbs, ebbs and flows, to a crescendo! It radiates thro to the back too.
You don't say what meds you're on?
A MRI scan will show strictures up in the small bowel and can be treated accordingly with a med regime.
xxx

 

[matthewsg1]

The only medication I am currently on is Remicade every 8 weeks. I was on Remicade every 4 weeks, 150 mg of Imuran, and dexilant, but when the abscess formed my doctor took me off of everything and decreased my Remicade.

 

[matthewsg1]

Also I'm not sure if the pain is a stricture due to the location. It feel like the pain is coming from higher than by bowels more like in my stomach. Also it feels as if the pain is radiating out my back just below my shoulder blades.