Colonoscopy this morning...results.

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My son just had his first set of scopes done. Dr. said they saw some inflamation and an ulcer but biopsy results will be another week. In meantime he said we need an MRE, which he said is critical, and we need to see pediatrician to rule out any other latent diseases in case we need to start treatment. So, although there is nothing 'official' yet, sure seems like this is what dr thinks it is.

See f pediatrician on wed and Friday and MRE is scheduled for oct 11th.

I just want a diagnosis already, something is not right and I feel like every day waiting for tests and results is a day he's not being treated...
 
This is the hardest part. But they won't start treatment until they know for sure what the problem is. It is so hard to see your child in pain, I know! Those biopsy results shouldn't take too long and hopefully it will confirm their working dx. in the meantime, it's great that they're doing all the testing they can. Hang in there, once treatment begins I hope you see a quick improvement!
 
Hang in there. You seem in the right track for getting answers. I remember at that stage having such a mix of anxiety combined with anticipated relief at finally getting an answer for my mysterious symptoms that I'd had for 7 years. Best of luck to you and your son.
 
I'm sorry the colonoscopy was not normal. Things will be hectic until you get testing out of the way. If you have questions about the MRE, feel free to ask. Many of our kids had that test.

I strongly suggest checking for immunity to Hepatitis B, varicella and possible measles, mumps and rubella. Many kids are not immune to Hepatitis B. Our dr also checked for latent Hepatits B and a PPD. Also, ask about a flu shot in advance of treatment. If your child needs immunosuppressing drugs in the future, some vaccines (live) cannot be given and the other vaccines may not be as effective. I am having my younger child's levels checked the next time she needs bloodwork just in case she needs meds in the future.
 
Ah, yes, the learned art of patience. You will wait for dr calls, nurse call backs, wait for lab results, wait in waiting rooms, wait outside bathrooms. You'll get used to it. It's the worst part of this disease - waiting, especially when they're feeling so miserable.

Quite honestly, I think you're on a fast track to dx if it's IBD. There are some poor kiddos who suffer for months and years before a dr gets on the right path. Kudos to you for pushing and your dr for listening!

I'm sorry the scopes seem to be pointing to IBD, though at this point I think it might be worse if they didn't, know what I mean? Then you'd be starting over with something else.

Have you done any research on meds? Any questions?
 
I know it is hard to wait but an MRE is a really good idea. Our 1st colonoscopy showed UC, the biopsy said Crohn's. It was the MRE that made that final determination of Crohn's. In the beginning of the disease it won't effect treatment of how your son will be looked after, but down the road it will make a big difference if meds don't respond the way they should, etc. The MRE helped us immensely.

Stay positive. Answers hopefully will come soon.
 
SupportiveMom- going through something similar. What specifically indicated Crohn's on the biopsies?

Agree about the MRE and it also indicated your GI is providing current diagnostics by choosing it. How old is your child, worried mama?
 
Momtotwo - Granulomas are usually what checks the box for Crohn's, even though only less than half (30% I think) of all people with Crohn's have them (weird, right?!).

Hang in there, worriedmama! Thinking of you!
 
Thank you everybody. My son is 12, but I think he's prob had something going on for a while. He never had diarrhea issues until recently, which was kind of a red flag that something bigger was going on. Once I started reading up on it, I realized his mouth sores, cracked mouth corners were also symptoms, although no dr had ever put it together. Until now. He also hasn't grown, at all, in over 2 years, but we had been seeing an endo for that, ran a million tests, other than crohns, and came up empty....it all makes sense now. I even called my endo about the sore mouth and asked her if there could be any link, she did not think so!! I wish we had figured it out sooner, but without the diarrhea, I guess nobody ever suspected IBD, Crohns, etc... My son is not currently in pain and seems ok otherwise, so that's good, but I'm worried for the future, I want his insides to heal before he starts to feel awful and I want to see him grow...I know you can all relate.

We have not talked treatment yet, without official diagnosis, but I have read up. I'm sure I'll have many more Qs on that. Dr. Briefly mentioned remicade, it seems to be a good choice from what I've read so far.
 
The technicians report that did the biopsy stated crohn's based upon the scraping they did during the time of the scope. The GI said based upon her view of the scope she saw UC. When the biopsy came back with something different than what she saw she sent us for the MRE. The MRE showed inflammation in the small bowel & esophagus, therefore giving a crohn's diagnosis. My kid was very sick when she was diagnosed so it made things harder to determine I believe.

To confuse the matter worse our 2nd MRE showed no inflammation in small bowel or esophagus. When our new doc (2nd opinion before surgery) looked at the last 2 years of tests & results it made her question the 1st MRE as a potential false positive. She pulled the slides herself (was done at her hospital) and it clearly shows Crohn's.

The only time that it has ever really made a difference in the treatment of my kid is right now when surgery is what is next. Everything we have done is done on both people with UC or CD. We have tried some meds only typically working for UC, and some CD. For a bit we got hung up on the name. My kid has not been a typical case.

I have a call into my insurance to determine if they will pay for the promethus test to determine if it is UC or CD, but I don't take much stock in the test. http://www.crohnsforum.com/showthread.php?t=33535 If they aren't going to pay for it, I am not doing it and the surgeon will see 1st hand if she could ever be considered for a resection and not permanent ostomy. Even if for some bizarre reason she has no inflammation in her small bowel there is no guarantee it is ever all reversed.

This stuff is probably something you will never have to deal with and don't think too far down the road. If I was to go back to where you are now with my kid's diagnosis I would tell myself to focus on the meds, what does what & why to make a clear informed choice. I had to jump onto Remicade very quickly. I wouldn't change doing it but wish I had time to be informed more.
 
Sending my support worriedmama! You are right that 'not growing' is a big red flag that something is wrong. I sure hope you get on a healing path soon. A dermatologist helped a bunch with the oral crohn's. So sorry your son is going thru this. Hugs
 
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