has anyone ever had a doc tell them their chrons pain is not crohns pain but caps?

Hi,

I have been in a full on flare since 11/2. They put me on 40mg of pred taper and tripled my asacol. Last Tuesday night I had the equivalent pain level of my chrons flare sideache 10/10 and went and saw the GI on Wed after popping 10 mg of oxycontin every 4 hours till I saw her.

They did a small bowel CT scan with contrast and did a panel of blood work. They said that the inflammation is down with my crohns shown by the CT and i guess something called markers were at "0" and that the pain I was feeling was NOT related to my crohns but due to chronic abdominal pain syndrome due to my appendectomy scar when I had my appendix taken out when I was 19. (I am now 39) The reason why I went to the GI was because when I normally go on pred, the pain level bumps down after a couple of days and I'm set for the duration of the taper. I have no idea why it spiked up like that

They want to give me a cortisone shot into my abdomen this upcoming week to see if that makes the pain go down. I don't really want to do it but I also don't want to be taking oxycontin and getting addicted to it so I agreed. However, I do not feel that is the issue. I have had constant side pain in that area since I was diagnosed in 2007. Whenever I flare, I can tell i flare because my side pain jumps from a normal 4-5/10 to a 9-10/10. I think they just want to quit trying to find the cause. I normally do not get the standard crohns symptoms when I flare: no diarreah (I'm normally C so my body shuts down and nothing comes out for days even with miralax or laxatives), no vomiting, don't have fever, don't have blood in stool. I just have excruciating pain, am extremely fatigued, and feel "off." if a colonoscopy didn't show my lesions, I would doubt i even have crohns because I get treated like a nut job. i guess I'm just a weirdo!

Has a) your side pain due to crohns ever been told that it wasn't crohns related anymore? or... have any of you had a pain in your body that isn't due to anything they can find and you just have to suck up and deal with it? I have always believed that pain is because of something wrong so technically someone should find out what is causing the pain not MASK it with pain killers or cortisone. c) Does crohn's make our nerves misfire?

I just don't know what to believe anymore. 0_o Help?

thank you for the tip ivy. will put it on there right now. =D

BTW, "chronic abdominal pain syndrome" is basically like the same pain as IBS/IBD but the person does not exhibit the bowel issues that the IBS/IBD people have. I looked at my GI like she was crazy when she told me this. I do give her props however, because she said she consulted 4 other GI's and they were the ones that told her about it and told her to refer me to a pain management clinic. I remember when I was first diagnosed, one of the surgeons and I were arguing because he wanted to open me up because he believed a part of my appendix was still there. I told him (at the time I was 35) that if that were true, wouldn't it have showed up years before? When they did the CT, it did show there was no appendix there so I felt validated for sticking to my guns. this time however, I am at a loss.

Erm, yeah. The oil suggestion is definitely misplaced. Thanks for that, Malakai.

This is what I get for posting first thing in the morning, while muddled.

@gumby 44--the only thing I can think of is that a couple of weeks ago before thanksgiving I ate a 1/2 piece of sweet potato pie and 12oz of potato leek soup and wound up pooping 12x (which for me is abnormal) so I went back on the low residue diet. Maybe all the pooping re-inflamed something down there? I was hungry and desperate and thought I could sneak it in. lol I have been going to the bathroom more than normal since Nov 2 (4x day instead of 3-4x a week) and sometimes my abdomen by the middle of my ribcage hurts after I eat and my belly looks 6 months pregnant so something is not right.

that sharp side pain kills me tho especially when i eat so that is why it makes me mad they keep telling me it's not crohns related. the only reason why I haven't lost 50 million pounds this time is because i can eat when I take the pain killers. When I first got sick, I just didn't eat and I couldn't take vicodin because it made me nauseus. Now, they gave me ondansetron for the nausea so the narcs are tolerable.

NO test is 100%, and knowing full well that I have crohn's (because mine was diagnosed through surgery) I have had tons of tests come back normal. It's possible for tests to not show what's going on. CTs are like taking a loaf of bread and slicing it, then looking at the slices. The problem is, there are small gaps in the slices, so things can be missed. Have you had an MRI with barium? They are being used far more and show a lot more detail than CTs, and also don't have the risk of radiation.

I'd say to maybe get a second opinion, but maybe seeing a pain management doctor will help. If the shot doesn't help, I'd keep pushing to figure out what is causing the pain.

I hope you find some relief soon.

(p.s. I despise that because you're not underweight doctors assume it can't be your crohn's causing the problems. From years of steroids and other meds, I'm overweight so doctors assume you're fine...annoying)

Malaki,
I've had a number of CT scans, MRIs and the awful enterocolonography and all were normal at the time that colonoscopies would show inflammation. Definitely, there is a reason for this pain but they are missing it.
Why don't you ask for a push endoscopy? May be there is some sort of inflammation hiding in the intestines. My doc preferred it over a pill cam as it enabled him to take biopsies from the small bowel.
Take care!