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Crohn's Disease Forum » Parents of Kids with IBD » Another flare symptom or 'normal'


03-23-2015, 05:07 AM   #1
Ands
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Another flare symptom or 'normal'

DS is obviously flaring, or at least this is what we believe, however bloods all normal so docs not 100% sure.

However he will have been on exclusive modulen for two weeks tomorrow, apart from day one of diet he has had no BM which I believe is normal, however last week he broke out in throat and mouth ulcers which are very painful. Apart from the Modulen he is having a steriod mouth wash three times aday, plus he was started on Codeine on Friday to help with the pain.

He then tells us last night that his bottom is sore but he didn't want to say anything, he's 13 and it's all quite embarrassing. Over the last two nights apparently he's woken up and changed underware as he's had a slight discharge from behind. Could this all be to do with the flare do you think? Should I get back on to docs or wait and see what happens? Apart from General soreness and a few ulcers on diagnoses he's had no trouble in this department before, so all new to us!

He's been off school for the majority of the last 5 weeks, his fatigue is horrendous.

Any guideance would be much appreciated.

Thanks. Xxx
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Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
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Multi Vitamin
Omeprazole 10mg
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03-23-2015, 12:51 PM   #2
CarolinAlaska
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I'd definitely let the docs know. They get a little caught up in labs and forget to look at the whole patient sometimes. Those are three major "flare symptoms" in my book.
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Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-23-2015, 05:24 PM   #3
Farmwife
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I agree, let the docs know!
Poor kid, at 13 to let your parents know your bottom hurts must tell you ..................
IT REALY HURTS!
That much fatigue has to be for a reason.
Grace always has normal labs.
We have to go by symptoms, not labs for her.

HUGS
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03-23-2015, 08:26 PM   #4
Crohns08
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I'd get him checked ASAP. Blood work doesn't tell the whole story and I would get a CT with contrast. Discharge has the possibility of an abscess. In the interim I would have him soak in a hot bath - as hot as he can stand - it can help with numbing the rectal pain and if it is an abscess to help drain it.
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03-23-2015, 08:33 PM   #5
my little penguin
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Ct scans typically are not done on kids due to the high amount of radiation
Most opt for Mre for kiddos .
DS has had a lot of rectal pain with leakage before
His was caused by protalgia /proctitis and rectal prolapse .

Maybe get imaging
I know for DS bloodwork is almost always normal
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03-23-2015, 09:12 PM   #6
SupportiveMom
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Just agreeing with others. Sounds like a flare is brewing. Blood work isn't always the indicator. I would avoid the CT scan if you can. An MRE gives better results anyways. D gets mucus when a flare is starting, right before she gets blood in her stool. I would tell the docs.
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03-24-2015, 05:47 AM   #7
Ands
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Well poor chap just done massive BM, he was obviously blocked up. Screamed in pain and some blood in toilet but stool was too dark to tell. Waiting on call back from IBD Nurse. Just want him well and back at school, 5th week at home.... X
03-24-2015, 06:07 AM   #8
CarolinAlaska
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Poor kid! I hope they can figure this out quickly!
03-24-2015, 09:27 AM   #9
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Sorry he is struggling. Hope the nurse gets back to you soon. It would be worth asking her to look at his bottom since he probably won't want you doing it. He might have a fistula like my son had - daily discharge can be a sign. Hope they can help
03-25-2015, 10:54 AM   #10
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DS had discharge coming out his bum. He had an internal abscess with a fistula connecting his rectum. The abscess was draining through the fistula, through his rectum and out his bottom. It got quite serious and infected within a week and he was admitted for four days (IV antibiotics, follow by a PICC line and abx at home).

The doctor was able to feel the abscess, which was painful, and then an ultrasound was used to see the fistula.

If his condition changes for the worse I wouldn't hesitate to take him to the ER. At one point we were testing for sepsis! Scary.

Keep us posted...
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03-25-2015, 11:14 AM   #11
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He took Senna syrup last night and nothing today.... No pain though either! Think we are going to leave it again over night and then get him checked in the morning. I must admit I'm slightly confused as to whether he should be having BM's on Modulen but then he was (stopped two weeks ago) taking high dose of iron tablets and now also on Codeine for pain. His poor bowels probably don't know what they are meant to be doing!!! IBD nurse phoned back and suggested constipation! This was before massive BM, which does sort of indicate that! Thanks for advice everyone... I guess like everyone it is one day at a time... x
03-25-2015, 11:14 AM   #12
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My daughter is another one who has absolutely normal blood work. I would try for imaging if blood work isn't helpful.
Really hope you hear from the IBD nurse soon
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03-25-2015, 12:09 PM   #13
DanceMom
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Have him check his bottom to see if the skin looks red/inflamed. A had a "sore bottom" with discharge and it turned out to be a strep B infection. Pretty easily treated with antibiotics.
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03-25-2015, 12:35 PM   #14
my little penguin
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Dancemom typically red inflamed rectal area in crohns is due to something brewing crohns wise ( rectal prolapse , protoctis, abscess, fissures etc..)

I hope your Ibd nurse can give you some answers soon so he can feel better
I know for DS rectal inflammation is the hardest to get a handle on .
Good luck
03-25-2015, 01:33 PM   #15
DanceMom
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Could be MLP.....or could be an infection. If the area appears red/inflamed a swab wouldn't be out of the question.
03-25-2015, 01:41 PM   #16
Ands
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He did let me check, it was red and very sore. We'll get it checked tomorrow. Thanks everyone. X
03-25-2015, 02:08 PM   #17
Maya142
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DanceMom: are infections common in kids who don't have an immune deficiency? Just wondering because my daughter has a sore, red bottom which she told me about today (of course, she didn't mention it when we saw her GI earlier this week teenagers!).

Or is it more likely to be Crohn's related?

Sorry Ands, didn't mean to derail this thread. Hope your son feels better soon. We are doing sitz baths for my daughter and that seems to help.
03-25-2015, 02:16 PM   #18
DanceMom
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Infections of any sort are common with an immune deficiency, but perianal strep infections are fairly common for kids in general. A was swabbed even when we believed she had Crohn's.

I'm not saying it is an infection....I'm saying it could be (and if so it should be easy to treat).
03-25-2015, 02:18 PM   #19
my little penguin
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Maya
In normal kids - general only 5% have perianal strep

http://www.ncbi.nlm.nih.gov/m/pubmed/16209362/

See above
03-25-2015, 02:24 PM   #20
Maya142
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Thanks, will take her to the pediatrician if it gets worse.
03-25-2015, 03:28 PM   #21
DanceMom
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MLP - Sometimes I feel like you're just out to prove me wrong, but that's okay. Your article studied Swiss children almost 14 years ago and claims that group a strep is frequently overlooked and psd was frequent in the kids they studied. So again, infection is always a possibility - IBD or not. Besides, you said yourself it was common......

http://www.crohnsforum.com/showthread.php?t=70075

Last edited by DanceMom; 03-25-2015 at 03:53 PM.
03-25-2015, 09:11 PM   #22
my little penguin
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Honestly - I try to stick to the honcode whenever I try to answer an posts were others ask numbers ( how common ...success rate of remicade etc...)
https://www.healthonnet.org/HONcode/Conduct.html

It is what more stringent sites with medical advisors require
The principles of quoting and citing a source are generally recommended here
( seen them before not sure where )
Anyways when maya asked how commons googled it to see what the percent actually was .
The paper I cited was one of the first few that came up on google with any numbers

I have done a similar thing on many posts where there is a reputable source to back up what is being asked .

It's what I do for myself /posters /readers to have information and sources to review so they can discuss things with their providers if they want


I do stress try to do
If I am posting in a hurry - that may not happen
03-26-2015, 03:19 AM   #23
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I do agree that a swab might be a good idea. My son had to have this done a few times - there might be a cream specific to what's happening that will help quicker
03-26-2015, 08:25 PM   #24
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Ands,
Did you take your son in today and get him checked? I would also be worried about a possible fistula or abscess.
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04-05-2015, 02:16 AM   #25
DustyKat
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How is your lad doing Ands?

Any clear cut answers?

Dusty. xxx
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04-05-2015, 03:21 AM   #26
Ands
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Thanks for asking... He's doing OKAY. Mouth has now healed up, it was codeine that had backed him up, so added lactulose to the Senna so things moving again. He's had one more BM with blood but as long as BM's liquid then he is OK.

He's half way through modulen now, so just hoping when he reintroduces food everything is alright. We will be asking if he needs to try long term medication again, as he's not been on anything since last August and he's just been plodding on.

He's obviously getting better but frustrated that no where near full energy yet, trying to build him back slowly. We would love to get him back to school after the Easter Hols. We have appt with GI on the 15th so not long now....

He is a star not complaining about being on Modulen over Easter!

Xxxx
04-05-2015, 06:17 AM   #27
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Thanks for the update Ands.

I so hope things keep heading into positive territory and he is soon back at school, bless him.

Good luck with the appointment!

Dusty . xxx
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