Almost Crohn's but not quite??????

[Gainzie]

The journey towards diagnosis continues.
As mentioned before, my 4 yr old son has had problems since he was six months old with perianal abscesses. He recently had further surgery and an endoscopy and colonoscopy which they said was negative...no evidence of crohn's at all. His CRP has ranged from 3 to 7.6.
They took many biopsies and we saw the surgeon yesterday who tried to explain the results. Seemingly the biopsies from the left side of his colon and rectum showed inflammation. Although there was no evidence of granulomas,he said the cells are trying to change into them? He is reluctant to diagnose with crohn's as yet but said if he was pushed, he feels that it is likely. He said that we would just have to wait and see. He suffers regularly with loose stools and stomach pain. We are waiting on an MRI to see if any fistuale are present to determine further surgery. We also see the Gastroenterologist in a few weeks who will give us more info I'm sure. What should we be asking? How should he be monitored?
Thanks again!

 

[Sascot]

Hi again! Sorry to hear that it "might be Crohns". It's always frustrating when you don't have a definate answer. Hope his abcess is doing ok now. We are also waiting for an MRI to check my son's fistula (too much to hope it has magically disappeared :ybiggrin
Not quite sure what you need to be asking - our diagnosis was rather a shock so we had no time to prepare anything. Just make sure you know exactly what the time scale is for things and make sure you know who to phone if you are worried/have a problem. Good luck with the MRI and meeting with the GI!

 

[izzi'smom]

Our gi does our scopes, and I thought inflammation was key in diagnosing inflammatory bowel disease, so i am scratching my head about what to ask...but i am hoping you get some definitive answers soon!

 

[DustyKat]

I'm sorry to hear that you still don't have solid answers.

The presence of granuloma's is very often the gold standard in clinching a diagnosis of Crohn's but they aren't present in everyone. My son doesn't have them and his pathology always returned a comment along these lines...no convincing evidence of Crohn's Disease...but he certainly has it.

I think I would be asking the GI if that is what the reluctance to provide a definitive diagnosis is based on. If so then what else explains the problems your son is having?

If they can't provide a satisfactory answer then i would point out that it isn't all that uncommon not to have granuloma's present in CD so could this be the case with your son?

If still no diagnosis is forthcoming I would ask where we go from here because the current situation is unacceptable and you can't allow your son to go on suffering indefinitely.

Dusty. xxx

 

[Farmwife]

Hi,
Believe it or not our stories are about the same. However, your 4 yr old has had more intervention then my 3 1/2 yr old. Still it's hard to convince a doctor that a mother knows better then them. I think DustyKat is right that you have to push more to get some really answers. I guess I should take my own advice. I hope all goes well.

Farmwife

 

[Patricia56]

I have "met" another family whose child's only symptom of CD was perianal abscesses. So you are not alone if your child ends up with a CD diagnosis.

Sometimes it is more helpful to focus on treatment plan if the doctors are reluctant to settle on a diagnosis. I suggest you prepare for the GI appointment by keeping careful notes of gi-related symptoms like: frequency of bowel movements, anything unusual about them, pain (location, timing like when he poops or after he eats, number on 1-10 scale), fevers, blood or pus in his stool, nausea or vomiting.

In my experience doctors will take you much more seriously if you can walk in with documentation of your child's signs and symptoms with dates, figures, etc. And they find it very useful when they're trying to figure out what's going on.

Treatment plans need to be focused, time-sensitive, with defined end-points or goals. Some people find this memory trick helps when considering changes in treatment:

B - Benefits
R - Risks
A - alternatives
N - Nothing (what happens if you do nothing)
D - Decision

You could use this same idea for framing the conversation with the doctor about diagnosis. What are the benefits of having an IBD diagnosis, risks, etc. The main point being - will it change the treatment plan? If not, then I wouldn't argue I would just focus on the treatment plan.

Finally, I always suggest people consider getting a 2nd opinion at a Pediatric Inflammatory Bowel Clinic, especially if their current doctor is not a pediatric GI or there hasn't been an evaluation by a doctor who specializes in treating IBD. It is not uncommon and your current doctors should be very supportive of you seeking a 2nd opinion. If they are not, then my experience would suggest you should be finding another doctor NOW.

Patricia

 

[Gainzie]

Thanks guys. Will bring up everything you have all suggested when we see the GI dr in two weeks.
Had a quick check of his bottom tonight and he has now developped a small hole where his wound has just healed. about 1mm, relatively deep as it just looks black inside and is leaking pus. This is beginning to drive me crazy! He is on 4 weeks of antiobiotics. Guess I'll need to contact the surgeon tomorrow!!!! Hope we dont get fobbed off for weeks again!

 

[Sascot]

Mmm, sounds like the outside of a fistula. At least if it is leaking pus then the pus won't be building up under the skin and causing another abcess. Just keep phoning if they try to fob you off - Mr Walker's secretary was quite nice if I remember right! Funny enough I will be phoning her tomorrow :lol:. Still not heard about the MRI and Andrew's appointment with Mr Walker is on 16th August so I will need to chase that up.

 

[Gainzie]

Hi Sascot,
Saw GP today and it is another fistula So it looks like he has at least 2 now. If I was you I would call the MRI dept. They phoned me this am and we have an appointment for the 10th. She said it is a 2-3 week wait at the moment and sounds like you have been waiting longer than that so maybe the referral has gone wrong somewhere. Called Mr Walkers sec (as did gp) today but we didnt hear back from him...typical. I am pretty upset and everything just seems to progress so slowly. The risk of further fistulas increases with delay, as has been proven with us so just hoping they get their buts in gear. Will call them again tomorrow.

 

[Sascot]

Hi, that's a shame about the fistula. I will definately phone tomorrow - bad mum I am - I forgot today!! I know it is so frustrating how long everything takes!