Can you have Crohn's with good stools?

[Chris_k]

My 5 yo has what might be Crohn's. His problem had always been incomplete elimination leading to bowel impaction. We treated his inflammation with steroids. We are currently treating with antibiotics. He was doing great for a couple of months but lately has no appetite and bloating is back. But unlike before treatment, he is having 2 formed bowel movements each day. I don't know if this means the inflammation is back or if there is something else going on. Anyone else experience this?

 

[Catherine]

The answer is yes. My daughter has no bowel symptoms.

 

[Chris_k]

If no bowel symptoms, then how do you know how she's doing, when she's in remission/not?

 

[Catherine]

Her symptoms are severe pain, weight loss and anaemia. We watch faecal calprotecton and hemoglobin levels

 

[Chris_k]

We have done calprotectin, and always comes up normal. Other inflammatory markers have also come up ok for us. But folks here have told me you can have Crohn's with normal markers. Our haemoglobin is also ok, but ferritin is low without supplementation. He so far has not complained of pain (except this morning for about 15 seconds).

Can you have Crohn's with no pain, no inflammation markers, normal stools?

 

[Catherine]

I would say yes but why are you thinking Crohn's?

 

[Chris_k]

He had a scope. He had inflammation. One doctor said maybe Crohn's. Another said no. We are having a hard time gauging what's going on 'inside'. So many things can cause poor appetite. In the past, it has been due to his bowels being stuffed full of poop, but it is really hard to imagine how this could be the case after a long period of 2 formed bowel movements each day. I know, anything is possible, but this would be very discouraging if he's got IBD but no way of knowing if he does. We might as well be shooting in the dark.

 

[Catherine]

Have they done a MRI or MRE? My daughter has Crohn is the small bowel approximately 10cm higher that a colonscopy can reach.

At dx chronic inflammation was present on colonscopy but she gi believe Crohn's was cause of her low iron which was present in blood test for 4 years earlier.

When did your son stop steroids?

 

[Chris_k]

No we have not done an MRI. I don't know what an MRE is. He stopped the steroids about 3-4 weeks ago. But prior to stopping them, he was on a super low dose (just 1.5 mg entocort daily). The steroids had helped him for the first 10 days and after that did not do much. It wasn't until we added in the antibiotics that he really improved, but apparently that did not last. It is a recurring theme with this child--whatever helps doesn't last. We actually had our longest run of good days with the antibiotics compared to anything else.

 

[Catherine]

Sorry I had to go out.

Entocort, this is a steroid which best in the small bowel.

MRE is a special type of MRI. We have only had MRI with contrast done.

Have you had a immune work up done?

Paging Malgrave and Dancemom who both have kids with immune issues.

 

[Chris_k]

We have not had an immune work up done, but we know that he has a completely dysregulated immune system. He is so chronically ill that he never mounts an immune response to any infection. What sort of testing would you recommend for immune status?

If Entocort works best in the small bowel, are you suggesting that he may still have inflammation in the large bowel? Again, my question is how would we know?

I really appreciate your answers and further questions. I do not mean to come across as argumentative. I think we are really shooting in the dark--if we can't even tell if he's improving or not on a protocol, how can we know what to do?

 

[Catherine]

But prior to stopping them, he was on a super low dose (just 1.5 mg entocort daily). .

I am not sure this would be a low dose. As I believe the maintenance dose for adult is 3mg. Your son is 5. How much does he weight? What was the starting dose and how long was he on that dose?

 

[Catherine]

We have not had an immune work up done, but we know that he has a completely dysregulated immune system. He is so chronically ill that he never mounts an immune response to any infection. What sort of testing would you recommend for immune status?

I can't answer your immune questions. That why I paged the parents I did.

 

[Catherine]

If Entocort works best in the small bowel, are you suggesting that he may still have inflammation in the large bowel? Again, my question is how would we know?

The reason I made the comment was that found it interesting that your GI picked a drug design to work best in the small bowel. I can't answer your question sorry.

I have just look up, it works in the end of small bowel and right of large bowel. It side effects are less that prednisone.

 

[Chris_k]

His initial dose of Entocort was 6mg. He was on that for 3 weeks. Then 3 mg for 3-4 weeks. Then 1.5 mg for 2 weeks.

 

[DanceMom]

An initial immune workup would probably include immunoglobulin levels (IgG, IgM, IgA) and vaccine titers (pneumovax, tetanus). Your GI or even Pedi could request these.

 

[Mehita]

I think in the world of pediatric Crohn's, anything is possible. My son always suffered from constipation as opposed to diarrhea. There are many kids on the Forum who are asymptomatic, which makes it incredibly hard to monitor them and only scopes or MRE's can show whats really going on inside. Other kids have have perfect labs, yet feel miserable.

I'm going to tag a few more people for help: my little penguin, jmrogers4, crohnsinct, clash.

Has he been tested for Celiac?

 

[crohnsinct]

No! You do NOT need diarrhea to have Crohn's. I have one daughter who did and one who tended toward constipation.

We aren't sure about my older daughter and labs but my younger one returns perfectly normal blood biomarkers but does show elevation in FCP. FCP is a much more reliable biomarker for most people but it isn't perfect.

All this said, there are a myriad of GI disorders, issues, diseases etc. It could take a very long time to get a dx. Keep pushing and trust your mommy instinct.

Mehita raises one reasonable culprit and Catherine is right about an MRE to look at the small bowel. Until you look at both the large and small, you really can't totally rule out Crohn's.

 

[Jmrogers4]

My son was having one normal bm per day and was in a massive flare at the time. Pretty much totally asymptomatic his only issue was growth. MRE showed high levels of inflammation all through the small intestine and FCP was slightly elevated. Labs were perfectly normal.

 

[my little penguin]

Ds is another constipation crohns kiddo
Almost always normal bloodwork but tons of objective symptoms they docs could see
That he was flaring
Good luck

 

[Maya142]

My daughter also was constipated when she was diagnosed. FC was high but not as high as you hear with most Crohn's kids. Her inflammatory markers were otherwise completely normal. She had abdominal pain and weight loss as symptoms.

Have you considered getting a second opinion? Boston Children's, CHOP and the Children's Hospital of Pittsburgh are currently the top 3 hospitals for GI disorders.

 

[Jenn]

Jumping in to say Yes too. My son had no bowel or pain symptoms, dx after fistula and abscess, also growth failure.

Agree that you need to do an MRI or fecal-cal and get a dx. In the meantime, you could try probiotics and/or a stool softener. Push lots of water and fruit juice, except for constipating banana or milk.

Good luck!

 

[CarolinAlaska]

Since your child is better on antibiotics, it makes me wonder about SIBO (small bowel bacterial overgrowth). My daughter was recently tested and diagnosed with this. It has many similar symptoms as Crohn's or IBS. It is treated with antibiotics, but can frequently return.

 

[Farmwife]

Sorry late to this thread but I have a now 6 year old that dx at 3.
She also never fits into a box. Nothing shows on her labs or still test.
Her scopes are the only thing that shows her true disease.
It's very frustrating and still after all this time their still
remains some questions about what my dd truly has.:voodoo:

I hope you get answers soon.