Second opinion on biopsy report back, please help me understand it.

[Jane and Nick]

Good morning friends,
Nick is 11 years old and newly diagnosed, we live in Malaysia but are a British family.
The doctor sent out for a second opinion on the scope biopsies and I would like some help deciphering the report.

First report.

A. Gastric Antrum biopsy : Mild chronic active gastritis
B. Colon biopsy : Mild to moderate acute colitis with focal cryptitis
C. Duodenum biopsy :Mild non specific duodenitis. No villus atrophy

Second report.

A. Mild chronic active gastritis.
B. the appearance are suggestive of inflammatory bowl disease, favour Crohn's.
C. Mild chronic duodentitis.

So my very knowledgable buddies what do you think ?
We are on a weaning dose of prednisolone down to 25mg and two 500mg tabs of Salofalk. Still got loose bloody stools and we are ten days of 30mg pred and now 4 days of 25mg pred.
Also have blood results, will see the doc on Sat if bleeding hasn't stopped. Nick has developed a throat infection and cough could be a bug but paranoid it's a reaction from the meds.
Jane

 

[Tesscorm]

Hi Jane,

I'm sure there will be better informed opinions coming! :redface: but, of what I know...

gastritis - inflammation in the stomach, both mention chronic which I understand to mean that it has been there for some time (but, I'm not sure how they determine it is chronic opposed to acute)
colitis - inflammation in the colon. Acute, again, my understanding, is that this means more recent inflammation. Don't know what focal cryptitis means.
Duodenum - the first part of the small intestine when moving from the stomach towards the small intestine (next part would be jejenum, then ileum - all parts of the small intestine). Villi are finger-like 'structures' (for lack of a better word) that line the small intestine - 'no villus atrophy' I think would be that the chronic inflammation has not damaged the villi.

Please note that scopes cannot reach very far into the small intestine. Not sure if your son has had these done but to see if there is inflammation in the small intestine, other imaging tests must be done - MRE, capsule endoscopy (pillcam), CT scan, small bowel follow thru (SBFT), ultrasound (but I don't believe an u/s provides as clear a picture as an MRE).

I apologize if this has already been discussed but, do look into exclusive Enteral Nutrition if the bleeding doesn't stop. It has comparable success rates as steroids at inducing remission but with NO side effects. However, I believe it may be more effective for small bowel disease but may still have a positive impact on the large bowel/colon (ie my son had crohns in his duodenum, some patches in his large colon and in his terminal ileum - EN cleared the inflammation in all areas EXCEPT the ileum!)

Hope that helps! :ghug:

 

[Jane and Nick]

Thank you so much Tesscorm for the lay mans explanation. I am doing so much reading and I think I am actually beginning to kind of understand things. How ever this disease seems so unpredictable that you seem to have to fly by the seat of your PANTS (ha, ha). We were back to the doc today and they have taken him off the Salofalk and put him back to 30 pred for one week, she thinks the Salofalk are giving him the reaction, oh and antibiotics. Then we will begin the wean, I will talk about the EN with her on Thursday, it sounds really great but so scared to do it as he is super picky, but if it works it works. Oh and we are going to do the pill cam in the next couple of weeks.
Take care
Jane

 

[Tesscorm]

I hope the pillcam gives you some definitive answers!!

Re the EN... while not a great solution (but none are!), if he's a picky eater and absolutely refuses to drink the shakes, he can use an NG tube to ingest all of the formula. It can be inserted and left in for a number of weeks. There are quite a few kids who have done it this way... farmwife, izzi'smom, carolinalaska, and I know there's lots more... just drawing a blank right now. My son ingested his formula overnight, so I don't have first hand experience in this but I know that formula can also be given during the day to alleviate hunger and is even mobile (pump and formula go into a knapsack???)

You'll find more info in this thread... http://www.crohnsforum.com/showthread.php?t=36345

Good luck!!!

 

[CarolinAlaska]

Yes, EN can be done via NG tube that stays in, NG just at night that he inserts and removes, or can be drank, if you find the right formula (this has been a little tricky for us, but we have found something that she tolerates and can drink when put in the right combination). It is scary at first, but really, what have you got to lose? It is good nutrition and will help him gain weight, etc, all the while allowing your son to heal. If drinking it doesn't work, he can go to the tube... Hope it works out!

 

[my little penguin]

We did EEN for DS at age 7.
He drank 7-8 shakes of peptamen jr orally every day for 9 weeks.
Then we switched to en plus food
Two years later he still drinks
2-3 peptamen jr a day plus food and will continue until
Puberty is finished .

I will say the first week was rough
He cried - I cried
I plugged his nose through the first handful of shakes while he sipped them by a straw
It took forever to drink one.
Now he can drink one in five minutes if needed.
Good luck
Also ask about an acid reducer for his stomach - gastris/duodenum

 

[Jane and Nick]

Has any one else watched their child go from exhausted to manic then relaxed to hyper all in one hour ?
Nick felt well enough to go for a play date which included the movies and a bite to eat afterwards then back to the friends house were lots of wrestling and nerd gun battles ensued. I am completely thrilled that he could go, but when I picked him up he fell to sleep in the car, woke him, because normally if he gets 20 mins nap we are up all night, but since coming home he has run the whole gamet of emotions. So, no scary bloody d but I am not sure what is worse? He is chatting away about all sorts of things then saying he is hungry but not really hungry tired but not sleepy, hugging me and checking that I am OK every ten mins....will be sleeping in his room again tonight. I feel responsible for giving him these drugs that change him so drastically. I don't know how you have all coped so well? My hubby is not doing great either, very scared his cancer is taking control. If I didn't have people who have no one else but me, I am not sure what I would do.

 

[Twiggy930]

Prednisone definitely made my son swing wildly from exhaustion to super hyped up and talking a mile a minute. I'd take some of the super hyped up this week... :yrolleyes: He evened out quickly once he was off of it. Glad to hear he fun at his play date.

So sorry to hear that your husband is struggling. My heart goes out to you. :hang:

 

[Jane and Nick]

Twiggy, thank you. I appreciate your experience and that you are willing to share and help us out, when Nick plummets It makes me scared but when he is hyper it makes me happier, I know it's not normal, but I would rather have manic. WOW how did we all get to this stage? Choosing which emotion we would prefer, I used to joke that I was always easily pleased but I don't want to be happy about stuff that's so not OK.
Thank you for getting back to me. He just went to bed but has been up twice to kiss me good night. Hope your little guy gets a boost and feels more energetic.

 

[my little penguin]

Yep same here
Pred is a drug we love to hate.
It works very well....BUT
Mood swings were just some of the fun
It gets better when they get off the drug
Until then we did lots and lots of tv -
Hugs

 

[CarolinAlaska]

I know how you and your husband feel. Until he stabilizes and you see him at a good place for a couple weeks without many symptoms, you'll ride this rollercoaster wondering where it will go next. I can't imagine going through this stress while trying to fight for your own life and/or care for a sick spouse. My heart goes out to you. Try to take care of yourself, Jane, the stress will shorten your own life too and your family needs you whole and healthy!

 

[DustyKat]

Sorry I am late to this Jane.

I just wanted to add what the difference is in appearance between acute and chronic inflammation:

Acute - the tissue would have boggy, oedematous appearance.

Chronic - the tissue would have a leathery, thickened appearance due to scarring.

@Tess - I have been read/ing quite a bit about EEN and some of the newer research suggests that EEN is just as effective for large bowel as it is for small bowel. The one thing that EEN doesn't appear to have much success in is UC.

Dusty. xxx

 

[Aussie]

Hi Jane, doesn't sound like the biopsies are that definitive. Sometimes to takes a while for new IBD to develop the architectural changes necessary for diagnosis. If its been a few weeks or more since the first lot of biopsies, why not repeat colonic biopsies and see if you can get a definite answer.

Best wishes.

 

[Jane and Nick]

Hi Dusty,
Thank you for your input. So it is better to be acute than chronic ?

Nick is doing very well at the moment and we are down to 25mg on the pred. We have no obvious blood 1-2 bm's per day. His eye pain has gone and apart from the mood swings and moon face he seems to be much better,we will be seeing the GI on Thursday and try and reduce to 20 mg.

OK now for the silly question, I am wondering if the diagnosis is correct ? I have had several people tell me bloody d can be caused by many things and as he didn't have any other symptoms could it be wrong ? Am I just in denial ? When they did the scopes and biopsies the report also had stool direct smear for E. Histolytica? result was, negative or not seen, also his CRP is stated as negative. I didn't see any other tests on his stool sample. Do you know if the inflammation and state of his intestines could be caused by anything else ? So many questions and so much second guessing. Is there a definitive test for IBD or one that proves its almost certainly IBD ? I know, I must sound crazy, but this is just all so overwhelming at times.

I have just found a more detailed version of his report, it states.

7 fragments of large bowl mucosa are seen with musculararis mucosa and sub mucosa. The crypt architecture is mildly distorted, and lamina infiltrated by a mild tot moderate intensity lymphoplasmacytic inflammation. Mucosal erosions are present, and pus cells are seen, scattered diffusely, but preferentially aggregated in foci of ulceration. Occasional crypt abscesses are noted. Looses nodular lymphoid aggregates are seen in the lamina, lacking secondary germinal centres. Granulomata are absent.

PHEW!I could do with google translate ! It sounds DREADFUL, so I have probably answered my own question, I am in denial.
If any one wants a stab at deciphering the above, please feel free. Any and all help is wonderful and truly appreciated.

 

[my little penguin]

Hugs
It is hard in the beginning
Btdt many times over
No one test.
As far as pathology reports some will not check the CD
Box unless there is a certain type of granuloma present.

Never easy

 

[ChampsMom]

Jane,

With my son - inflammation markers were never high - even when he was at his sickest and lost over 20 lbs, his numbers were barely out of the normal range. When they scoped him (both endo/colon) there were ulcers in his upper GI track and slight inflammation in the large intestines at the terminal ilieum. Diagnoses: Crohn's. :eek2: I was floored...

I think the fact that every child presents differently causes confusion on what it is... I have asked myself on many occassions if he really has Crohn's - but it's little things: inability to process nutrients, migraines, constipation, this, that and the other thing... :yrolleyes:

I'm glad to hear he's doing better!!

 

[DustyKat]

Hey Jane,

Acute inflammation is better because you have the opportunity to heal the mucosa before permanent damage has set in. The changes seen with chronic inflammation can be irreparable if scar tissue has formed and can lead to surgery if obstructive symptoms present themselves.

Scar tissue cannot be treated with medication.

Unfortunately the presentations of IBD are so varied. It is not uncommon, particularly in children, to have no abnormal results, including the inflammatory markers (CRP & ESR) or faecal calprotectin.

My daughter's presenting symptoms were not classic of Crohn's so IBD wasn't on the radar and she was never scoped. Her bloods consistently returned normal results, including CRP and ESR and her imaging also returned normal results. That imaging (Abdominal CT Scan) was done one week before emergency surgery and the damage they found to the bowel certainly didn't occur in a week! Her bowel had perforated and infarcted so the inflammation was present for quite some time.
My son's bloods on the other hand shows absolutely everything, even before he feels it! His pathology however doesn't support a diagnosis of Crohn's and that pathology is from both his scope and his resected bowel. The reason being an absence of granuloma's but he surely does have Crohn's.
Yeah, so two kids, exactly the same disease and location but totally different clinical presentation and investigative results.

I will tag Aussie into your question regarding the more detailed version of the scope report.

Dusty. xxx

 

[Aussie]

Hi Dusty and Jane, the more detailed report is a lot more convincing for inflammatory bowel disease. Essentially you can have a lot of different causes for colitis (inflammation of the colon), more common with infection, which tends to be a self limiting event. Any colitis will give you features of inflammation like increased white cells in the gut wall, inflammation of the crypts (cryptitis) and crypt abscesses, however, when you start seeing architectural distortion (the crypts look abnormal), then you are likely dealing with IBD, this can take a number of weeks to occur, so sometimes you can biopsy too early and miss early IBD and put it down to an infection.

Best wishes.

 

[Jane and Nick]

Thank you Dusty and Aussie,
Guess the denial stops and the lets do the best we can to prevent further damage kicks in. This forum is a WONDERFUL thing, especially as I have no other support or knowledgeable medics to rely on. IBD is so rare in this part of the world. The docs learned about it during medical school and many trained in Europe/Australia but very rarely do they see it. I will have to become my own expert and I feel with the help of my new support family I can try and make this work.
Thanks again.
Jane

 

[crashnclay]

My son is 10 and has Crohn's im not sure how you feel about Remicade as a treatment but it has worked wonders for my son. He doesnt take any pills we go every two months for an iv infusion. just an opinion please dont get mad at me anything that will help others im happy to help god bless Mandy