I'd love some advice please!

[Hattie95]

I was diagnosed with Crohn's of the terminal ileum last week and have been started on budesonide. However, the whole time my symptoms have been the worst higher up, underneath the lower part of my ribs. I also have pain and cramping lower down, where the ulcers were found in the colonoscopy but not as bad as higher up. My question is whether I should have more testing done to see if there's anything higher up, where most of the pain is? I read that budesonide only works lower down so perhaps it is a good idea, because if there's more ulcers in my duodenum or somewhere else then the budesonide won't work. I'm due to see my new GI in less than two weeks. Thoughts of what to do???
Thank in advance for your help!!

 

[24601]

Have you ever had an MRI or an upper endoscopy? It's best practice for a GI to do these tests at or soon after diagnosis to see if any other parts of your bowel are affected by inflammation. A colonoscopy will only look at your colon and terminal ileum so it can't tell you about the rest of your bowel and otherwise your doctor is just guessing and treating you as one of the more common presentation of Crohn's.

I understand your concern and it's definitely valid - I was treated with budesonide and pentasa and I have disease in my jejunum so these just weren't appropriate meds for me.

If you've had the tests done before then your new GI may be able to review the earlier tests but they may also want to repeat them. It's definitely a question that should be answered.

Best of luck

 

[Hattie95]

No, I've never had either of them, just two ultrasounds, a CT scan and a colonoscopy. During the CT scan then found large portions of my ileum higher up were inflamed but then just seemed to ignore it later on! Ok that's great to hear, I think I'll definitely tell him about it when I see him and ask for an upper endoscopy at least. I think the budesonide is starting to work a bit on the pain lower down but it has obviously done nothing for the pain higher up!
Thank you so much for your advice, I was worried it was just me being stupid but it sounds like you are in the same boat in terms of where the pain is located! Have a great day

 

[lenny]

When they suspected my son of having Crohn's, they scoped him from both ends.

 

[24601]

I think an upper endoscopy sounds sensible since you've never had one but with the inflammation higher in the ileum I would want an MRI done - the upper endoscopy won't reach as far as the ileum so the only way to "see" that part of your bowel is with imaging or the camera pill.

And it's better to image first to make sure there are no strictures where the camera pill (if this test were to follow) wouldn't get stuck. I've never had the camera pill because I've had so many strictures! And I'd choose an MRI over CT to minimize radiation exposure.

Let us know how you go with the new GI!

 

[Hattie95]

Ok great! I moved my appointment forwards to this Monday and I'll definitely ask for more imaging and perhaps an upper endoscopy. From the location of the pain and how I feel the food moving there when I first eat in the morning I think it might be in my duodenum but I'd definitely want him to check. The pain and cramping there is getting worse and worse. One piece of good news is that the budesonide is definitely working on the inflation in my terminal ileum, the pain is less and my bowel movements are less frequent! So I just hope I can change to a med that will help the entire inflammation!

Thanks so much for your help and advice!