My story

[TKx]

Just turned 50yrs old a few days ago, diagnosed with Crohn's only months ago, but had it for over a decade apparently.
Third colonoscopy found 12 ulcers and one almost hole in wall all in terminal ileum.
Did this 3rd one out of cycle because "thickened terminal ileum" was noted on imaging during kidney stone issues. ER doc pointed it out as a potentially bigger problem than this 7mm stone.
My first colonoscopy was in 2009 while still active duty military, right before I retired. Never received copies of those records, but curiously researched and found the records in military archives. When I got them in the mail one note stated issues with terminal ileum, but I was never told anything about it. Just to come back in 5 years. I was suffering with this issue at that time, but was more concerned/focused on colon cancer at that time because my mother passed away from it at age 54 in 2003. I just always toughed it out, while buckled over in grueling pain almost daily. Don't ask me why. I don't know.
So anyhow I started Humira and Imuran a few months back. Not really seeing any changes. Constant issues every day and night.
So here I am seeing everyone else's experiences.

 

[Scipio]

Welcome. If you have been on Humira and Imuran for several months and are still not getting any relief then the therapy is probably not working very well. It may be time to think about changing medications.

Are you being treated by a gastroenterologist? One with an interest and expertise in IBD? I suggest you discuss with your doctor about whether it is time to try different medication in the hope of a better outcome.

 

[TKx]

I was given 10 refills of the Humira so that equals 10 months of injections but there wasn't a follow up appointment made so I'm going to call and see if I can get in earlier to address it. It is with a gastro doc who seems quite in depth with IBD knowledge.
I appreciate you confirming my suspicions that I should be seeing some relief by now. Since I'm still a rookie at this mess, it's nice to get some sanity check feedback on where I should be.

 

[TKx]

It's 3:30am and I'm currently going through a flare up. I'm sure it's mental but it seems every time I go through one of these it's the worst one ever.
My doctor is going to have me swallow a camera pill and get some photos since it seems the Humira and Imuran are not having the results they are supposed to. Just waiting for the Tricare authorization to be approved. I'll see where we go from here.

 

[Adam1971]

Hi there. Sorry to hear you are having such a rough go of it right now. I think it is good that your doc is pursuing more investigation of the problem. I am curious why the choice of a pill cam over imaging like CT when it's known in your case that the terminal ileum is where your crohns has been located in the past. Does the doctor suspect problems in other places? In my case, 8 years ago, the failure of humira was related to scar tissue and narrowing/thickening that couldn't be fixed with meds. What does your doctor think might be going on?

 

[TKx]

It seems the doc has no issue doing another CT scan, but that he wanted to try a different view first to see if he can see something else. One option was another colonoscopy, but he wanted to wait on that because this cam pill may see different things (I guess).
I'm still waiting on Tricare approval though, so nothing has happened yet. Tricare has no problem approving another CT scan with contrast so he may still go that route no matter what.
He seems to be thinking there is something else also going on besides what he found and it sounds like he will want to switch my meds no matter what.