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Waves of pain - how to manage?

Just found this sub-forum. Describes my situation completely. ALL I have is extra intestinal manifestations. I am currently on budesonide - 2 1/2 weeks now. Not sure what the GI doc has in store for me afterwards but am looking for a new one as current one is not very communicative and is rather abrupt. I have not been "officially" diagnosed with Crohn's but she is pretty convinced that is the case (small ulcers in terminal ileum).

Anyhoo, the budesonide was working for a while. Now it seems to be loosing it's punch. I have been having waves of pain off and on and getting closer together now for 3 days except when I sleep. I get a break without and then wham, it is back. Pain is focused in upper back, lungs, chest, ribs, diaphragm, throat, etc. Hard to describe exactly what it feels like but pressure, lots of pressure is the closest I can come.

What can I do to manage this pain? And when should I get concerned versus just dealing with it? As I said, I'm looking for a new doctor for a second opinion and perhaps someone who will actually talk to me and discuss my situation versus throwing sound bites at me. But the medical system moves slowly and odds are I will not be able to get in to see someone new for a couple of weeks. In the meantime I'm trying to be 'brave' but it is hard to know what to do or how to act. I feel like if I knew for certain that it was Crohn's and that pain is just a fact of life I could get in better shape psychologically and suck it up. For now I find myself going through waves of fear and anxiety as the waves of pain hit. Sorry for the long post but I honestly don't know what to do and feel very isolated.
Hi. You might want to consider the ER. It will depend on if it is a diagnosis of Crohn's disease or not what kind of treatment they consider. I hope you can get in to see another doctor soon and get some relief. Let us know how you are.
I agree with an ER visit to get pain relief. You should not suffer with pain on top of your fears and anxiety. Pain also intensifies everything you're feeling. I can't speak to your symptoms, agree that a second opinion/better suited to your needs doctor is appropriate. You have to advocate for your health and change providers when you're not getting the attention you need. Best of luck .