What now?

[Kayla92]

My fiancee was diagnosed with crohn's disease towards the end of last year. He finally went to get his X'Rays done last week. We received a letter yesterday stating that his X-Rays came back completely normal. Does anyone know what this means? Is it really crohn's disease?

 

[Rebecca85]

Not necessarily, X rays are good for looking at bones but not so good for looking at soft tissue (ie bowel). Did he have any contrast to drink or injected? Because without contrast an X-ray is pretty useless for Crohn's!

 

[Rebecca85]

It could also mean that the treatment is working, and his bowels look normal because there is no inflammation or scarring.

 

[shazz]

I was told xrays are only done for IBD to check for obstructions and blockages. They can also show up really bad inflammation but not much else I think.
I only had 1 xray before i had Remicade but that was to check for chest problems.

Have you received another appointment with the gastro doc to discuss next steps? I would chase them up. Don't let it go.

Xxxxxxxxxx

 

[Kayla92]

I set up an appointment, earliest we could get in is May 8th... He did have a contrast to drink. Which did NOT sit well with his stomach what so ever. I'm not sure if it was an X-Ray or if it was an MRI. The letter we received just said that everything was normal, there was nothing abnormal about the images they took.

 

[shazz]

Thanks for getting back.
Sounds like an mri. I had 2 of those. Very noisy!!
Although it may seem a way off the date for the appointment will soon come around. It would be a good idea to start making a list of questions you both have. What now, any more tests, that kind of thing. It does work. I do it even now. When you get in the room your mind goes blank and you forget everything you were going to say and ask!
Really wish you both well and hope they can get your fiancee sorted.
A few times I had scans and tests but because they had pumped me full of meds nothing showed up. It might be worth mentioning that as well.
Xxxxxxxxxx

 

[Kayla92]

Thank you so much Shazz. I will be unable to make this appointment with him due to the fact I will be traveling for work that week. I have a list of questions I want him to ask... Hopefully we can get this thing figured out and get him in remission....

 

[shazz]

You are most welcome hun.
If i think of aanything else useful I will post.
Please let us know how he gets on.

Xxxxx

 

[Crohnsnewbie]

x-rays looked fine for me..............it was the CAT scan that showed I had Crohns disease.....inflammation of my intestines, later they took more tests and found out it was crohns for sure!

 

[AbdoAlien]

My xrays and CTs were all normal, for me to get diagnosed I had to have a colonoscopy with biopsies done... word of advice, just because his Xrays are normal doesn't mean there is no crohns....sometimes it can take a lot of different tests before one gets diagnosed, which is very frustrating for the patient. Keep on the docs to get a definite diagnosis for what is wrong!! Good luck to you and your fiance!!

 

[Kayla92]

He had the colonoscopy first... He was diagnosed from the colonoscopy thaat he has Crohn's Disease. Everyone I seem to talk to, has the X-Rays and CT's done before the colonoscopy...

 

[Rebecca85]

Possibly they wanted to see how far the disease spread (a colonoscopy can only view the large intestine and a tiny bit of the small).

 

[Jennifer 02]

Hi, Kayla.

I had a colonoscopy done prior to any other tests and that is how I was first diagnosed (10 years ago). I have maintained on Pentasa and have been fortunate up until now to not have any issues. I recently had a colonoscopy that showed ulcers throughout my colon, so an MRI (yes, they are loud:ylol. was done to see if I have any narrowing as well. I will be starting Imuran for certain and maybe Remicade if there is narrowing.
It sounds as though your fiancées MRI was normal from the paperwork! That's great news! Hopefully he can maintain on a drug that doesn't have so many side effects as the ones I will be starting. Good luck to both of you!

 

[Kayla92]

Jennifer, I hope everything goes well for you as well. This drug that he is on now, has it's ups and downs. More downs than ups, unfortunately. I am hoping that when he goes in for his next appointment, they can put him on something along with the Entocort, that will make his days easier to bare.