Question Abt Daughter's "Crohn's" & Mom's Ileostomy

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Mugzilla

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May 20, 2014
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Hi All!
I posted in May when my daughter became acutely ill spending 2 wks in hosp initially Dx w/Crohn's via endoscopies but biopsies came back neg so docs "back peddled" expecting infection to be culprit. 2 months later, daughter had mouth ulcers and repeat nausea/diarrhea but no bleeding. In the meantime my mom, her grandmother, who was Dx w/UC 3 yrs ago had terrible flares and developed antibodies to Remicade and underwent colectomy now has permanent ileostomy. Her surgeon told me to be aware her condition is genetic and to be aware for myself and my family in the future and with all that just went on with my daughter I unleashed on him. He said just because her biopsies were neg for Crohn's didnt mean she did not have Crohn's. I saw my daughter's GI dr the next day and he said yes that's true, didnt elaborate, left the room, sent in a social worker to talk to us and ordered Prometheus Kit along with normal bloodwork without any explanation. Usually I am much more assertive and had I noticed the order prior to taking her for the bloodwork I'd have been all over it. I wouldn't have settled for yes without more specifics either but I've been sandwiched between the two scenarios and am just full of worry. Can someone help? Why could neg biopsy still be Crohn's? What will Prometheus tell? What can I do to keep my daughter from ending up like my mom? I'm stuffing her full of Monolaurin, b12, d3, probiotics and others in addition to cutting out processed foods, dairy and artificial sweeteners...and popcorn. Thanks for your help, your site is so informative!
 
So sorry to hear of all your family has been through. I don't have much advice to offer, but I do think there are others on this forum who have a working diagnosis of CD, with negative biopsies. It must be so frustrating. I hope you get some solid answers in the near future, and your daughter starts feeling better soon. All the best to your mom too. Take care.
 
Here lies the problem
Biopsies are tiny and crohn's can be patchy .
If the areas look ok macroscopically then the Gi is blindly taking samples and could miss crohn's .

Has she had imaging ( mre ) or pill cam ?
Crohnsinalaska was dx by pill cam biopsies were normal .
There is a very large section of small bowel that can't be reached .

Has she had a fecal caloprotectin stool test?

I can say my youngest has Ibd .
My other child doesn't not but did have gi issues .
Sibilants have a much higher percentage of chance of developing Ibd ( 33%).

The risk is not as high for other family members but I forget the number .

Promethius lab does not tell you if you have crohn's or not it is only suppose to be used to help figure out if the disease is crohn's or uc in the case of indeterminate Ibd.
Even then it's just one tool and is not paid for by most insurances .

Have you tried getting a second opinOn at one of the big pediatric Ibd centers ?

Children's of Philly
Boston childens
Cincinnati children's
Good luck
 
The reason it can still be Crohns with a negative biopsy is because they were probably looking for granulomas with the biopsy and didn't find any. Finding the granulomas is like the gold standard, the problem is that you don't always find granulomas with biopsy but that doesn't mean it isn't Crohns just that they didn't turn up granulomas in the area they biopsies.

The Prometheus test is a blood test that some docs use but doesn't have a high reliability. It is also sometimes used as yet another to to differentiate between UC and CD when there is some questions but it isn't definitive in that area either.

I would suggest finding a children's IBD specialty center with Ped GIs that often deal with kids and IBD. Some of the centers will do a records review on the tests already performed.

I hope you find some answers soon!
 
Sorry MLP we posted at the same time but I agree with all that my little penguin says.
 
I would definitely check if your insurance is going to cover the prometheus test because it is expensive. And our GI doesn't do it because he feels it isn't sufficiently accurate for diagnostic purposes. Obviously your GI feels differently but that's something you could ask about - how accurate is the test?

Without either imaging (MRE or SBFT) or pill cam there is no way that can actually rule out CD in the small bowel. this should have been done at the time she was tentatively diagnosed with CD.

How is her growth? This can be a key indicator of CD.

And, I hate to say it, but if we knew how to prevent CD we would all have done it. There are many different opinions/takes on the role of diet in preventing and treating CD. The main dietary approach that I have seen with kids is to use enteral nutrition (liquid diet) to bring about remission. Another approach that some have tried is the SCD diet. I believe there's an SCD forum on this website you could check out if you are interested in trying a strict dietary approach to treating CD.

Hope it gets resolved soon so you know where you stand.
 
You are ALL AWESOME!!! THANK YOU!!! Makes perfect sense reading your replies...especially explaining the granulomas.
We are currently with a children's hospital and I do think they have followed what most of you have had done. Did xrays, ultrasound, CT scan, MRI, lower & upper endoscopy, liquid diet (bright beginnings soy for a week only), on budesonide, asacol, prevacid, and list of vitamins, probiotics etc. Haven't done fecal caloprotecin or pill cam. I guess I have some serious trust issues or control issues or ocd or I don't know what. I think seeing what could be the start (she is 16) of hers is scary in May and looking at my mom who had hers start at 70 and in only 3 years end with drastic surgery last week in July (in good hands at Mayo Clinic not some quack) makes it hard not to blur them together.
 
I was overwhelmed when they sent Dr, nurse, nutritionist and counselor. I may be forgetting someone - it was like a clown car..but I mean it in a good way.
 
My daughter sees a therapist in the GI clinic (who is SO helpful!!) but never a social worker. She's also seen a nutritionist in the past.

Good luck! Hope they figure it out soon!
 
We always see the GI nurse first, then sometimes a resident (our children's hospital is a teaching hospital), then the GI. We only saw the dietician once, but we could ask to see her at any visit if we have questions. We have not seen a counsellor, but we could request that too, or be referred if the GI deems it necessary. The nurse and GI always ask my son questions directly, which I appreciate.
 
We usually see a student/visiting/etc GI first and then S's regular GI but never a counselor or social worker (not at children's hospital nor with his current adult GI) - although I do believe the IBD clinics do have counselors on staff if necessary.

I think having someone to talk with can be a big help if you/your daughter are ever having a tough time dealing with the diagnosis/symptoms.

At almost every apptmt, once we've reviewed tests, etc., I offer to leave the room so that S can speak privately with GI. Most of the time, S says he has nothing else to add but, I did 'insist' :) when I asked the GI to discuss drinking, drugs, etc. and concerns relating to crohns and meds to S - I left saying that I wanted S to feel comfortable asking any questions he may have had.
 
What a great idea for older kids....teens & young adults especially in high school or going off to college. I've thought about calling the counselor but there really isn't anything anyone can do. I'm sandwiched between my parent and my child...with eerily similar problems....and try not to vent or project in front of or around my daughter, hence the posting :) . I've tried to be vague about the colitis connection and have chosen to focus on complications from blood thinners as being the reason she lost her colon - which is mostly true. She hasn't asked for more details so I just leave it alone. Like talking about the birds and bees. Just what she can handle when she asks. She's a very smart girl though. I may just be kidding myself!

I am very worried about school starting as a teacher and having my daughter resume classes. We missed the whole month of May and had no warning...NONE...she got sick one night and wham, life as we knew it had changed. Two weeks later same story different patient, this time my mom. It doesn't seem like this is the kind of illness you just work into your week. My only experience has been sudden illness-hospital-illness-hospital.
Thank you for your support.
 
Once you get a dx then your on maintence meds and followed closely so you can avoid the hospital setting a lot.
They may do a lot of blood draws /stool samples but it is manageable once it's under control.
 
What an ordeal. MLP & Clash said things best regarding additional testing & the issues with the Prometheus testing. It is crazy that someone has to get 'worse' before sometimes they can do something about it. having someone to talk to for her will help. It is helping my teen. If she doesn't know a peer with UC or CD, Starlight is a great forum to connect others. My kid found the most support through social media.

We have used a family councilor previously to deal with the diagnosis of CD and what life looks like, recommended to us from the hospital when our GI asked for it. We stopped seeing him, but know if we need to we can start again easily. It definitely helped.
 
I know she doesn't know anyone with it...other than what my Mom has gone through (which has been bad) she hasn't seen anyone functioning with any IBD at all either. She doesn't really harp on the details as I do, she either feels well or not. Simple as that. Maybe that's the best way to handle it. I don't know yet. Thank you for the social media suggestions though...I will certainly keep it in mind for her.
 
About 6 months after diagnosis our first treatment failed putting her back in the hospital and the last year she has been in &out of hospital. We are currently in our longest stretch of staying out. It sent my daughter through a bit of depression thinking there would never be a 'normal' that didn't include being sick all the time and hospitalization. Because she didn't know people to compare it to it made her feel worse. The last 4 months she has finally engaged with others her age with CD. It has made a world of difference for her self esteem.
 
I can imagine how hard it is for you and your daughter to separate your mother's and your daughter's experiences. However, crohns is very individual and it seems everyone responds differently to treatments, location of disease, severity, recurrence, etc. My my son was diagnosed, I knew only of my aunt and a friends' daughter with crohns. Both had had very difficult times with lots of pain. At dx, my son had symptoms but they didn't include pain nor bleeding. I also worried that his symptoms would soon mirror my aunt's and friend's daughter. This was not the case. For the most part, once my son began treatment, he has been fine (very small glitches along the way) - no more hospital stays.

So, while it will be difficult to look at your mom and not worry if that's what's coming, try to remember that your daughter has her own diagnosis and will respond in her own way (hopefully, positively and quickly!). :ghug:
 
Those are all very good points to keep in mind and hopefully that will be the case for her. Thank you all for such helpful and supportive replies.
 
sorry late to the thread and you have been given some fantastic advice the only thing I have to add is about the prometheus genetic testing. My son did have this test done, it wasn't so much for diagnosis as he had already been diagnosed but more to get a bigger picture of his disease as he seemed to be hovering right under remission. It tests for the genetic mutations of Crohns/UC so even if the mutations are there it doesn't mean you have either disease and I don't think you can use it alone but only as another piece of the puzzle. I don't know how but our insurance did cover it.
My son regularly deals with the counselor at school, they usually just check in with him and basically develop a relationship so he has someone he is comfortable with if there are issues with disease/school he can go to
 
Hi and welcome. Sorry to gear about your daughter and mother. My son was diagnosed a couple years ago and was put on the 8 week liquid diet through an NG tube. Since then his stomach symptoms have been very mild. The only issue we had was an abscess/fistula that needed surgery, otherwise he keeps well. He is on 6mp for maintenance and apart from some tiredness lives life pretty much normally. Hopefully your daughter will be able to find a med that works well for her. We have never had a counsellor or social worker. My son tends to keep things to himself. I usually sit with him with the lights off before he goes to sleep as this is the time he tends to mention things that are bothering him. My daughter is the same - maybe it's because I can't see their faces in the dark they don't feel as embarrassed to talk
 
Thanks Jacqui! No need to apologize about being "late" to the thread, I'm just so very grateful for any insight. So is Prometheus kit either genetic testing OR testing for IBD specifically UC, CD, and Celiac? I was under the impression the determination of the IBD dx was via genetic markers in the blood work but maybe I am confused. I swear I've read so much lately my eyes are crossing. It could be two entirely different kits for different things but I feel like what I read said the blood work picked up genetic markers or traits for the specific illnesses. Either way I guess the important detail is that it helps narrow down or confirm a diagnosis but isn't enough on its own to determine if one has Crohn's, UC or Celiac. I was told following her colonoscopy and upper endoscopy that it was definitely Crohn's. Doctor went way down treatment road, NG tube, biologics, meeting the team in the next few days, sent nutritionist in, make arrangements as she will be here in the hospital for quite some time so I took a leave of absence from work, etc. and 24 hours later none of the biopsies indicated Crohn's. They figured infection. No infection ever identified. Symptoms have continued - fortunately not to the extent that she had in the hospital - but here we are. Seems an appropriate test to order given the limbo we find ourselves in. Thanks again for your help.
 
Thanks Sascot!
Glad to hear your son is doing well and things are relatively uneventful. It gives me hope. I appreciate your input. Thanks.
 
My son had 2 at the same time Prometheus IBD sgi Diagnostic and Prometheus Crohn's Prgnostic. The diagnostic result comes back with Seology Results, Genetics Results and inflammation results and has boxes that can be check for Pattern Consistent with IBD and under that are three more boxes with the choice of Crohn's Disease, Ulcerative Colitis or inconclusive for Crohn's disease vs. ulcerative colitis after that there is a box for Pattern not consistent with IBD.
There are several different genetic mutations they check for and if I remember right any one of those could mean a possibility of Crohn's and from those if you have a genetic mutation in the nod2 it is much more likely to develop fistulizing stricturing disease which was found on the prognostic test.
If it helps confirm her diagnosis and get you on a plan to feeling well I don't think it could hurt but as others have said I think we are in the minority in getting it paid by insurance.
 
Oh!! I so appreciate the clarification. Thank you! I'm getting ticked off as our Dr said NOTHING about it other than "here are the orders for her blood work, you can use our lab or quest" no oh, by the way I thought it would be a good idea to do this Prometheus kit because it tests for etc... but lets check with your insurance first. That would have been nice. When I looked at the first page of the orders it was the basic, run of the mill stuff we've been doing. Wasn't until I got to the lab and needed the kit I realized there was more going on...
 
Sounds like something of a potential mystery so the SGI test may be helpful in clarifying things.

They can't biopsy the small intestines so she could have CD in the small intestines and the biopsies wouldn't show it.

Do you have a copy of the pathology report?
 
If she's still having symptoms a pill cam may be a good idea. I think there are several members on the adult forum who were diagnosed by pill cam. It's a pretty easy test to do.
We did have to fight our insurance on it, but they eventually covered it.
 

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