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Crohn's Disease Forum » Parents of Kids with IBD » Update in case info is useful to others


06-17-2014, 08:57 PM   #1
Brian'sMom
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Update in case info is useful to others

We had appt on June 11th. At first I was disappointed because his SED went up from 41 to 47 and his CRP went up from 1.6 to 2.1. And he was very anemic. I was like What the?!!! We do 8 shots a month and We did an ileostomy... what more can this disease take?

Well, today we got back the rest of the labs... KC finally does fecal calprotectin. It was taken from his bag (so small bowel only) and it was "17"!!!!!!!!! they warned me it coud be high, but not to panic if it was-so happy! They did not think it would be that low!... His Vit D is low... Vit B series normal. So the doc is happy. Says the inflammation is most likely from the large bowel that was so diseased. They feel like with more time of complete rest...it should heal. We just gotta hope for that! (Not sure why the sed and crp went up... but he has had some allergies and also 5 tiny canker sores in his mouth). I forgot to ask about a mouth rinse since the ulcers aren't going away. At the appt the GI didn't seem concerned with them.

Just wanted to mention it in case anyone is using our case for info... like I'm watching the Stelara kids!!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
06-17-2014, 09:16 PM   #2
Maya142
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Great news! I hope the ESR and CRP go down soon!
I'm also watching the Stelara kids it's next for M!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-18-2014, 01:39 AM   #3
Patricia56
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Glad you are seeing progress at last. My heart hurts when I think of all your kiddo has been through. May things only continue to improve.
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
06-18-2014, 07:14 AM   #4
Johnnysmom
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Sounds like things are on the right track. It sure does take time for things to heal. I will keep my fingers crossed you see some major healing soon!! Hang in there mom
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Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
06-18-2014, 08:01 AM   #5
Tesscorm
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^^ditto^^ on needing time to heal all. It does sound like he's beginning to improve!

Hope you (and he) are past the worst of it and you see only more improvement!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-18-2014, 08:15 AM   #6
Mehita
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How's he feeling overall? I hope things improve over time. Rome wasn't built in a day. Hang in there!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-18-2014, 08:19 AM   #7
happyballerina
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That is great news, congratulations!
I hope you don't mind that I ask a question that is slightly off topic, but I am really interested to know - I understood from your post that he has an ileostomy but he also never lost any part of his bowel? Was that done just temporarily so that any stool bypasses the colon and doesn't irritate it/make it work further, which would allow it to rest and heal? If that is the case, I didn't know that they did that, as I've only read of stomas after some part of the bowel is removed, but it makes sense. Thanks and sorry again for the OT question
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21 years old

Dx IBD August 22, 2014
Dx Crohn's Disease September 10, 2014

Current IBD meds: Entocort, Humira
Past IBD meds: Rowasa

Future doctor
06-18-2014, 08:34 AM   #8
Brian'sMom
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Mehita, He is feeling good. No pain. He has even said that if the stoma is permanent he wouldn't care... He says that now-after a couple years of really bad pain. He said this is the first time he has had no pain.

Happyballerina, It's not off topic at all! That's why we are on this forum I think.. to share and help each other. His ileostomy is called a "loop ileostomy" They went to a healthy part of his small bowel above his terminal ileum and they bring out a loop of his intestine. they cut it... but not all the way thru. Then its sewed to his abdomen. So he has 2 openings to his stoma. One is the stool... the other just has occasional mucus. They do this type if they want to someday reconnect easily. So his large bowel is in there too. Just hanging out! He does have occasional feelings of urgency with what he calls his "real butt" - but only watery mucus comes out. This seems to happen once a week. The GI and Colorectal surgeon said this was normal and would get less. The large bowel continues to make mucus. He has to do sphincter exercises to keep that muscle strong since the plan is to reconnect in several years. (Originally this was going to be for 6 mos.. but a colonoscopy the week before surgery made him decide that he wants him to stay this way "Until he's an adult". To let him get past puberty. And he said no medicine would heal that rectum area. He also hoped that in 4-5 years they would have advances in the crohns fight.
06-18-2014, 05:19 PM   #9
kimmidwife
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Glad it sounds like things are moving in the right direction. Hopefully it continues that way!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
06-18-2014, 06:24 PM   #10
AZMOM
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ecstatic about the 17!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!



J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
06-19-2014, 06:05 PM   #11
awmom
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So glad Brian is feeling well.....so admirable how he has handled so much and seems to have a positive outlook! Happy for the fecal cal test result!! You must be feeling great relief!
06-20-2014, 10:57 AM   #12
happyballerina
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Happyballerina, It's not off topic at all! That's why we are on this forum I think.. to share and help each other. His ileostomy is called a "loop ileostomy" They went to a healthy part of his small bowel above his terminal ileum and they bring out a loop of his intestine. they cut it... but not all the way thru. Then its sewed to his abdomen. So he has 2 openings to his stoma. One is the stool... the other just has occasional mucus. They do this type if they want to someday reconnect easily. So his large bowel is in there too. Just hanging out! He does have occasional feelings of urgency with what he calls his "real butt" - but only watery mucus comes out. This seems to happen once a week. The GI and Colorectal surgeon said this was normal and would get less. The large bowel continues to make mucus. He has to do sphincter exercises to keep that muscle strong since the plan is to reconnect in several years. (Originally this was going to be for 6 mos.. but a colonoscopy the week before surgery made him decide that he wants him to stay this way "Until he's an adult". To let him get past puberty. And he said no medicine would heal that rectum area. He also hoped that in 4-5 years they would have advances in the crohns fight.
Thank you for explaining it! I'm actually really interested that you said he has urgency but only watery mucus comes out - this happens to me as well very frequently and I have yet to find out how common it is and what it indicates (I'm undiagnosed right now, but going to the doctor soon). Did he have that problem before the stoma or was it new after he got it? I thought there were foam and suppository steroid medicines for the rectum, but I guess that wouldn't do much for the actual muscle. I really, really appreciate your reply as it's so helpful - at the very least, I know there is *some* hope for me in the form of sphincter exercises
06-23-2014, 09:02 AM   #13
Brian'sMom
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Happyballerina, If there is a lot of watery mucus... then there is a thing called "Diversion Colitis". GI thinks since my son has this only occasionally... its not the case for him. They did mention Rowasa enema's to see if that helps... but so far my son is refusing them since its not that bad. He's done those in the past and my son thinks it didn't do much. But that was before ileostomy. Also, my son didn't have the watery mucus discharge before the ileostomy. This came on a few weeks after surgery
06-30-2014, 09:30 PM   #14
happyballerina
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I've never heard of that, thanks for mentioning; I'll have to look that up. I don't know if I would have it in me to do enemas, so I understand him not wanting to do them. How is he doing btw? I hope still well :-)
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