Is it all in my head?

I went to the GI on Monday, after having an MRI (looking for primary sclerosing cholangitis-though I wish they had included all of my abdomen and pelvis so they could see if there's anything going on with my crohn's) My bloodwork (specifically my alkaline phosphatates) have been high for 4 months now, and my doctor is making sure they're not missing anything. Thank God the MRI was normal...I couldn't handle another non-curable disease right now.

Anyway, after they called and said the MRI was normal, I asked the nurse to tell my doctor I'm still having a lot of nausea and pain after I eat, and I'm not hungry anymore because of it. They had me come in, and basically told me "there's nothing physically wrong with you". I had a small bowel series done a few months ago after a 2 week stent of pain and nausea and inability to eat, but I was feeling better by the time the test was done. This time, it's been going on for about a month. The nausea starts soon after I eat and the pain hits my right lower abdomen about an hour or so after I eat. This isn't normal for me, and though I am stressed right now, the fact that I'm hurting where my surgeries were concerns me. Basically the physicians assistant told me that all my tests have been normal so there's nothing wrong. Their suggestion (she spoke to my doc earlier knowing that my doc wouldn't be there when I came in) was to double my Effexor and hopefully my stress level would go down and I'd feel all better. I feel like I'm handling the stress well, and I don't feel over anxious about anything right now.

So basically they're saying this is all in my head. I have a hard time believing that. Your alkaline phosphatates can be high from crohn's activity, and they're completely dismissing that fact.

I'm giving it a try and doubling the Effexor, but I'm worried that they're ignoring something, and it will lead to surgery if left untreated.

They also said that Humira works so well that they don't think the crohn's could have become active while on it. I missed 2 doses in January for surgery (not belly surgery) and after that was when things started to change.

What do you think? Could it be all in my head?

I had a scope in December, and everything was fine. All the biopsies came back normal, and she didn't see anything. I realize though, that a lot can change in 8 months though...which is my concern.

Next time I do have to have a scope, I need to find a doc in my area to do it though, since my copay for my doctor doing a scope is $800 (that's why I had it in December, before the copay doubled). If I can get a doctor to do one at the hospital closer to home it's only $200. I still can't really afford that as I'm unemployed and going to school, but my mom said next time I need one, she'll pay for it for me. I'll cross that road when she decides she wants one done on me.

I'm so aware of the fact that NO test is 100% from working in xray, and usually my doctor is good about assuming that maybe something is brewing and not showing, but right now she's being different. It's like they think I'm just whining about things, but right now eating soft foods even hurts, and that's just not right. I tried to explain to her that normally I love eating, but right now, I just don't even want to.

I second that Ivy.

You may also want to inquire about having a pill capsule endoscopy, which should be able to find disease activity hiding out that other tests may miss. A pill cam was what diagnosed my Crohn's after several other tests were inconclusive.

If you have already had 2 resections and been on a TNF inhibitor, then why are you doubting yourself? Humira is not cheap and your insurance would not have given the approval if your diagnosis was not accurate or positive. The same goes with the resections, those surgeries just don't grow on trees to be picked by ever hypocondriac to have. Yes there are other reasons and conditions to have a resection for, but having 2 should give you a little peace of mind that you have Crohn's disease. It is very easy to go and feel this way as when most of us look in the mirror we don't always see the sickly person that you would expect to see with all of the pain that you are experiencing. This is also a daily emotional battle for me and I have been confirmed by biopsy, capsule, scope, and promethius.
When I look in the mirror on a good day I see a well built 29 year old man and not a disabled person. Sometime(please don't take this wrong) I think that it would be easier to have a handicap that was more visible but then I realize what a blessing we have that we can be viewed on some good days as normal people. Society can be cruel and we don't usually have to go through the verbal or staring abuse that some other disabled people do. That is until we get to the point that we have lost all of the weight and people think that we have eating disorders or are drug abusers.
Don't let your doctors get you down. It seems like everytime that I have had to switch to a new G.I. or see a new specialist, I have had to go into the prove I am really as sick as I am syndrome. It is not right and should not be justified by a doctor that we should have to go through this, but it is what it is. You know how you feel and sometimes tests are not always accurate. Have them do the promethius test on you if you really need that peace of mind. While it is not 100%, it is darn near close and will atleast get you going in the right direction. If you for so odd chance don't have Crohn's disease, now is your chance to find out and get treated for the right conditon. Why put these toxic medications in a body that does not need it? Don't ever let a doctor tell you that you are perfectly fine though when you are experiencing pain or are constantly sick. You know your body and you know what you should be feeling like.

I do definitely have crohn's. That's not the question right now. The question is whether or not the symptoms I'm having now are crohn's related, which I think is the case. I went to my PCP today to get the doseage of my prescription for Effexor doubled. He said if it were up to him, he'd prescribe steroids for about a week to see if they make me feel better, but they make me feel so bad (achy joints, unable to sleep, super anxious) so he decided not to try it. He also didn't want to do something like that and go against what my GI was doing. He basically said "we can play their game" and if nothing else, my anxiety will be well under control by changing the effexor dose.

As for the suggestion of a pill cam...my GI has decided in the past it's not a good idea with me. My 2 surgeries were both because of obstructions and I've had so many partial obstructions, so they hesitate to even try a pill cam because the pill could get stuck and require surgery to get it out. It's safer to do a colonoscopy because at least they can't get the scope stuck!

I've had my appendix taken out (it ruptured before my first surgery) so I know that's not the case.

As for my gallbladder, I've had an ultrasound, a nuclear medicine test, and the MRI and none of them indicated that there was anything wrong there. I'm not having any pain in my right upper abdomen, so they don't think that's where the nausea is coming from.

Oh, my dr mentioned small bowel overgrowth, but I just finished taking an antibiotic for a sinus infection, so that would have helped had that been the case. That was her reason for ruling that out....and again today I've started yet another antibiotic for an upper respiratory infection.

They also had me double my prilosec, thinking maybe reflux or excess acid is causing the nausea.

I might add also that I do have some extra weight, so it wouldn't be detrimental for me to lose 20 pounds....though this isn't the way I'd like to lose it!

I guess we'll see in the next few weeks if it is stress causing my symptoms. I know stress can affect your body a lot, but unfortunately I don't think that's the case. I'm willing to try what they said and see what happens though.

By the way, I know so many other people have flares for far more than just a month, and I'm sorry to whine since a month really isn't too long.

Good call "Keeper".  I hadn 't thought of that as a possibility and yet I just took my last Vancomycin for my C-Diff today.  I got tested twice prior, both times negative.  Then I finally tested positive.  Took a 2-week course of Flagyl.  Felt alright for a couple of days and then all my symptoms came back.  Tested positive a 2nd time. This time was on the Vancomycin.  We'll see what happens now that I'm done with that.    So I agree, check for C-diff and the other types of bacterias you can get in your bowel.  Maybe that will shed some light on whats been going on.