The best I can tell you is to be the squeaky wheel.

You are on some good meds. I don't know how long you've been on them, but assuming it's been at least 6mos to a year...they are clearly not working for you. Flares are going to come and go, The goal has to be to manage the disease, to prevent any advancement AND to control your pain (so that you can get on with your life).

If you are having that much pain, the plan isn't working. Make your regular GI take another look. The most difficult thing with IBD is the curse of knowledge. The docs think they know where things stand and tend to not want to look any further. In my humble experience, the kind of pain you are describing sounds like a stricture. Strictures can be very difficult to locate. In our case, an MRE is the ONLY thing that does the trick...well that and pill camera studies. The pill cameras work because the cameras keep getting stuck and then the docs say "oh, he has a really bad stricture." At least with an MRE the docs don't have to go in and remove the imaging device surgically. (LOL)

Then again, what if the pain is being caused by something outside of the digestive tract??? I know one person who was having terrible pain and it turned-out to be the gallbladder. The point is, that when you are in pain...you need someone who is willing to look at you as a whole person...not just a Crohn's patient.

Good luck to you! Let us know how it goes.

That is good advice from vtfamily, go back and ask for more tests to make sure there isn't something else going on with your intestinal tract. If the pain is out of the ordinary then I would start with the assumption that something is wrong and you have not found it yet. If you and you GI exhaust all thoughts and tests from a Crohns and GI standpoint then go see your GP and have them start looking at everything else that is not IBD related.

The worst that happens is you go and complain to everyone and they find nothing and the pain goes away when you manage to get the flare down. As long as you are respectful and don't try and come off like I know more than you do, in presenting your information to your doctors they should be ok to work with you and if they aren't find new doctors. In my opinion doctors are a dime a dozen now a days, good doctors are what you need to spend the time to find.

Lastly don't be afraid to try alternatives to modern medicine many people write off homeopathic and natural remedies as some sort idealistic hippy thing. There are many things in those areas that have merit and studies to back them up you just have to do your homework.

Hope you find the cause or something to help with the pain soon

Imuran could this be the problem have you ever noticed if your symptoms start within the hour after you take this. just saying CR

I would go to the E.R first and then ask about a Pain Specialist. People who do not have this disease do not realize how horrid it is.

Also, something my pharmacist told me: That one needs to break the cycle of pain, 'cause when you don', the pain leads to depression and that makes the pain worse.

I notice I have more pain when I don't exercise... Keep yourself moving - stretching - what-ever you can do - do it - and remember to drink a good amount of water. I hate pain meds they make me sick - I love my Jacuzzi - the best investment ever!

Two points mentioned are important...

1) figuring out specifically what's causing the pain, ie strictures, gut spasms, something besides Crohn's etc. Because where there is on GI issue, there can be others. etc.

2) exercise is an important component in this disease, as rough as it may seem to try to exercise. It helps mentally to deal with the pain, and I think it's a good distraction from the pain. Yoga, walking, particularly outdoors, etc can really help.

But first... definitely address the cause. I just saw my GI doc for a check up yesterday. We spent a half hour talking about some other things going on with my health and barely touched on my UC specifically. So there's something to the whole person approach.

you listed 3 strong immune suppressors + steroids. perhaps you are over-medicated, and the pain is a side effect?
You should not have to live in so much pain, if you feel going to the ER for some IV pain relief would help, do it. even if it is only for a few hours, some relief from the pain would allow you to rest and heal.
I highly recommend deep breathing, meditation, relaxation, yoga, mindfulness. etc for pain relief - it may not take the pain away completely, but it works well to reduce the pain. Talk to an expert in alternative pain therapy to learn some techniques. I was a skeptic, but these things can have amazing results. The key is having an awareness of the pain, and delivering oxygen to the parts that need it by focused deep breathing and movements & relaxation to promote circulation & healing. It may sound flaky, but give it a try, there is nothing to lose, and no negative side effects.

thanks everyone for your comments. I did go back to my GI doctor and he thinks that I have irritable bowel on top of my crohns and that is whats causing my pain and nausea. He said that there is nothing he can do to help me and I guess I just have to live with it. After hearing this news I was not happy because I am to sick to be able to just live with the problem. I can't even leave my house because I go to the bathroom so much and i'm in so much pain I just curl up in a ball and cry. I decided to check out the Mayo Clinic in Minnesota to see if they can help me or possibly figure out whats causing this. I'm still not convinced its irritable bowel even though the colonoscopy showed that I only had mild active crohns at the moment.

I'd do the same and get a second opinion for sure.