Crohns with no ab pain or diarrhea?

[solomo]

My daughter (11) has been going through diagnostic testing to find the cause of bloody, painful bowel movements. 99% of the time she is a fairly healthy, normal child, so imagine my surprise when her scopes came back showing inflammation and slight stricture where her small and large bowel meet. No visible signs in lower colon, but biopsies showed inflammation. MRI was done, showed minimal wall thickening in small intestine that "could" be a result of Crohn's. Here I thought we were going to be dealing with an internal hemorrhoid or fissure and we get a diagnosis of IBD. My biggest question remains... why hasn't she ever suffered from abdominal pain or diarrhea which seems to be the main symptom for most? Her bowel movements are usually 1-3 days apart, so I sometimes worry that she could be constipated. Dr. feels that stool could be irritating the colon as it passes which is causing the pain and blood. Pentasa and 30mg prednisone have been ineffective. Stool culture showed c-diff, so flagyl was taken, but no changes (never showed signs of active c-diff). I thought we were headed to Remicade next, but dr. brought up possibly trying an enema before taking that jump. He realizes administering enemas to an 11 yr old might be difficult, but I'm pretty sure it will be darn near impossible. She'd rather deal with the infusions (not taking into account the possible side effects, etc). And I'm doubting the enema meds effectiveness for her. It would be so much easier if her symptoms were clearer, but I find myself still doubting we are dealing with Crohn's when she isn't exhibiting the ab pain and diarrhea. Has anyone else's child presented in this way? UC was discussed, too, but seeing even the little bit of thickening in the small bowel wall, and the fact that the most irritation was found closer to the small intestine... the dr (who is great, communicates well, and I trust) feels this is more in line with Crohn's. I just don't know if we have enough evidence to start something like Remicade yet (though it sounds promising and I would love for it to take away her symptoms). Your insight is welcome! I appreciate being able to read what has been shared in this forum!

 

[schwooters]

hey, im not a child but when im having a flare i usually dont have pain or diarrhea.
I always have joint pain and feeling very tired.
So its quite possible

 

[my little penguin]

Ds never has diarrhea
Primarily constipation
And barely every bleeds
Kids are a whole different breed

 

[Sascot]

My son did have tummy pain on and off but nothing else, no diarrhoea and he was growing well.

 

[pdx]

For about 3 years, my daughter's symptoms were similar to your daughter's--painful bowel movements, with some blood, which were always attributed to fissures. She took Miralax for years (even though she wasn't really constipated) in an effort to let the "fissures" heal. She also had occasional joint pain, but it wasn't that bad, and always went away eventually. The big red flag that no one noticed, though, was a gradual drop in height and weight percentiles. Over 4 years, she dropped from 95th percentile to 50th percentile in height.

Anyway, when my daughter was 12, she finally started showing more dramatic signs of Crohn's: diarrhea, cramps, nausea, and significant weight loss. It still took about 6 months to get a diagnosis, and she was really sick by then. She ended up in the hospital 3 times, and missed the last 7 months of 7th grade.

It's good that you're thinking about your daughter's diagnosis, but it could just be that your family is lucky and you caught IBD early. If my daughter had been diagnosed when she was 11, she would have been so much better off.

How is your daughter's growth? And has she had a fecal calprotectin test?

Good luck figuring out the best path forward from here. Ironically, the one advantage to having my daughter diagnosed so late was that it made treatment decisions a little easier.

 

[crohnsinct]

I could add to the voices above but I won't bore you with more details. There are plenty of a symptomatic kids here.

As far as treatment goes there us another step and that could be an immunomodulator. Azathioprine or methotrexate.

Pentasa us pretty low level so I am not surprised it isnt working on her disease.

I posted this somewhere else but can't remember...it isn't that remicade is a "big gun" and super powerful drug. It is just the least convenient (although I love it) and very expensive. For some the decision is made for them at dx. My first was that way but with my second we caught the disease so early we had the luxury of time to try other things.

Has een been mentioned? My daughters have great success with that and it could buy you more time.

Is the stricture from scar tissue or inflammation? Structuring disease usually places you in the moderate to severe category to start so really not surprised about the pentasa.

 

[crohnsinct]

I could add to the voices above but I won't bore you with more details. There are plenty of a symptomatic kids here.

As far as treatment goes there us another step and that could be an immunomodulator. Azathioprine or methotrexate.

Pentasa us pretty low level so I am not surprised it isnt working on her disease.

I posted this somewhere else but can't remember...it isn't that remicade is a "big gun" and super powerful drug. It is just the least convenient (although I love it) and very expensive. For some the decision is made for them at dx. My first was that way but with my second we caught the disease so early we had the luxury of time to try other things.

Has een been mentioned? My daughters have great success with that and it could buy you more time.

Is the stricture from scar tissue or inflammation? Structuring disease usually places you in the moderate to severe category to start so really not surprised about the pentasa.

 

[solomo]

Thanks for the replies. Dr. has discussed Imuran - it was tabled because it takes so long to begin relieving symptoms. He said it was an option if the steroids would kick in and carry her until the Imuran would begin working, but they never did (anyone else's kid seem to be steroid resistant from the get go?). Een was also discussed, but because it's difficult to get patients to comply with not eating anything else (and my daughter would probably choose the rectal pain over not eating "real food") we decided to go another route. Because her symptoms are not debilitating at the moment, we do have the benefit of deciding what might work and what wouldn't - though I know that luxury could change abruptly.

pdx, I'm glad you responded because it sounds like you started out the same way we are (btw, we are taking miralax, as well, to help soften bowel movements to lessen irritation). I needed to hear that if we choose to keep being conservative in treating this it can become much more serious. My daughter did noticeably thin out at the beginning of the school year and, though she has always been on the petite side (family genes), she is beginning to lag behind her classmates in size. Not sure if she lost any weight, but she certainly hasn't gained any in several months to a year.

Dr. said the stricture was a combo of current inflammation and some scarring. It was just enough to keep his scope from easily sliding through the space. I saw the picture. It looked angry.

Not sure about the fecal calprotectin test, but if it only tests for inflammation, we're already past that point. We know there is definite inflammation in her gut. Other things that she has experienced that may or may not be random - has occasionally complained of hip and knee aches from a young age (nothing swollen or serious, but enough to slow her walking from time to time). She complains of feeling like there's an eyelash in her eye almost daily, but there's nothing there. And a few months before she started complaining of the rectal pain she had erythema nodosum. She tested positive for strep with a throat swab, then was diagnosed with mono by an infectious disease specialist who was checking her for rheumatic fever due to the untreated strep - so who knows! She didn't have definite symptoms of either, so I wonder if it could have been our first sign of Crohns. I messaged her doctor this morning and told him that if he feels we have enough information to warrant the Remicade infusions, (I think) we're ready to go that route. Instead of just treating the colon, I would rather get ahead of the game, than to end up with something serious like a stricture and extended hospital stay a year or two from now. I still have concerns about the side effects and if it helps, how long will it be effective?

 

[pdx]

Yeah, I think in your position, I would be pushing to start Remicade. My daughter hasn't had any side effects from it. For her, it took a while to start working--almost 6 months--but she's doing really well on it now. She also takes methotrexate once a week; studies have shown that kids take longer to develop antibodies to biologics if they also take an immunomodulator like methotrexate or imuran.

Probably just a coincidence, but when my daughter was 7 years old, she had her first noticeable joint pain, along with a fairly high sed rate. Her doctor did some blood tests, and they came back positive for strep, despite her not having had any symptoms of strep previously. She took antibiotics and was watched for rheumatic fever too. My husband has always felt that the strep was linked somehow to her IBD, either as symptom or trigger.

 

[crohnsinct]

Inflammation that stops a scope from going further is pretty significant.

Given you have considered the "middle of the road" options, I think Remicade is a good bet.

You can't worry about how long it will work. Grab it and love it while it lasts!

My daughter has been on it 4 years and going strong. Other than it making her psoriasis horrendously worse it has been a dream. No other side affects what so ever! No increased infections or otherwise. Risk profile is better than aza and mtx also.

It also took 6 months and a round of EEN to get my daughter to remission but each infusion things got a lot better. My daughter was just steroid dependent so we introduced EEN in order to taper off the steroids and smooth sailing from there.

Good Luck!

 

[Jenn]

same, my son had no pain, no diarrhea, no blood, no typically described symptoms. He had anemia, fatigue, growth failure, and fistula with abscess - the abscess is what led to tests and dx. It can take awhile to find what works. Dig up some of the research for top-down approach for kids near puberty and re-dsicuss with the GI. Good luck!

 

[Maya142]

My kiddo had belly pain and mild constipation. No diarrhea. She did great on Remicade. No side effects except some tiredness after the infusions and not all kids even get that! She didn't mind the infusions - she liked the chance to miss school and watch TV and nap!

Good luck! There is lots of research supporting the early use of Remicade, especially for kids.

 

[CrohnsKidMom]

Welcome! My son was dx'd at age 8. He had abdominal pain, mouth ulcers, daily fevers, anemia, weight loss. No diarrhea, but constipation so. He was initially on prednisone, tried imuran for maintenance but couldn't tolerate it, then placed on methotrexate injections for 2 yrs. It stopped working last spring, so he went to Remicade with a lower, oral MTX dose. He much prefers the Remicade to the weekly MTX injections. Between infusions he can almost forget he has crohns!

 

[Catherine]

DD dx aged 16 year. Anemia, stomach pain. No bowel symptoms.

 

[Jmrogers4]

No diarrhea here, abdominal pain we have had but generally only a long time after inflammation present, if he has abdominal pain he's in a really bad spot. As MLP says with kids you have to through out all the "traditional" symptoms and just go by your child and their symptoms.
My son is currently on remicade and we tried many things before getting there because he didn't seem that bad but he had some pretty severe delayed growth (his only symptom) after about 4 years of trying other things. He grew 10" over the past 2 years he's been on it. We are adjusting the dosage now because we're having some weight issues, I don't think we are done with remicade yet because it has really worked for him and I'm hoping that he can continue on it for a long time but even if it stops working tomorrow I would not trade in the last couple of years because it really was a complete turn around. He went from being one of the shortest kids in his group at 5'1" in 9th grade to currently 5'10.5" and went through about 3 years of puberty in 1 year.
Good luck, welcome and keep us posted

 

[kimmidwife]

Welcome to the forum!
I think you are making the right decision to go ahead and treat with remicade. My daughter also doesn't respond well to steroids but then again she hasn't responded great to a lot of meds. Hoping remicade works great for her!

 

[Pilgrim]

My daughter is also an every 2-3 days kid for bm's. Around here anyway, it seems normal for the Crohn's kids.
I also think Remicade is the right road for your daughter. Enema? With disease in the Terminal ileum? Doesn't make sense to me but I'm not a GI in real life, lol.
We went to Humira (similar biologic but by injection) and have been seeing very good results.

 

[crohnsinct]

Pilgrim! Lol not a real gi! Me either but my guess is the enema is for the rectum. We almost did that for o when we were having trouble getting her rectal disease under control but then een fixed it

 

[Pilgrim]

Makes sense CIC!
EEN is great, and I guess it's worth saying that even if you think there's no way your kid can do it, it might be worth a try anyway. It gives the push to remission a great edge and really is a help keeping a kid in remission once there along with the meds when used at 50% or so.
It's so tough making the initial decisions and reworking until something works. Hope it happens quickly.

 

[shay84]

My daughter didn't have stomach cramps or pain what I notice with her that when she pooped it really stink yes poop stinks but hers was at another level . Also her symptoms presented in her vaginal area that's why it was just so weird the fistula was causing inflammation in her vagina and her rectum had skin tags which I thought was hemorrhoids.Nobody new what was wrong but because of the skin tags I was concerned that maybe she wasn't wiping properly maybe bringing bacteria to the front causing infection but when I took her to the GI and I was explaining to the doctor and I mentioned her vaginal inflammation the doctor took 1 look and diagnosed her immediately she sent me to the ER and she was admitted they did a MRI and started her on I.V antibiotics immediately. And the test confirmed tge doctors diagnoses