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Crohn's Disease Forum » Parents of Kids with IBD » Back from camp & feeling worse


08-17-2014, 10:00 PM   #1
SupportiveMom
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Back from camp & feeling worse

D had an AMAZING time at camp Got2Go. She met other kids with UC & CD I hope become life long friends. While at camp she started getting bad headaches and guess what came back?! Blood in the stool! Ugh we've seen worse but we have gone a month without blood. Now she is back to middle of the night wake ups again. Could it be adding the Mezevant? Now that we have 2 GI's who do I call & tell about the new symptoms? Do i call them both and let them know about new symptoms? We see the referral team on the 26th. Do I just cross my fingers this is not a start of the bad direction we are headed? I hate this...
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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08-17-2014, 10:03 PM   #2
kimmidwife
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I would definitely call not wait. Probably call them both.
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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.
08-17-2014, 10:08 PM   #3
SupportiveMom
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She came home Friday night. I was hoping being home 2 days would regulate her. No such luck. At first I thought she might have caught c diff at camp. It is definitely not c diff. For once I almost wish it was c diff versus what the regular blood means.
08-17-2014, 11:04 PM   #4
Clash
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I would go ahead and call both. Hugs!
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-18-2014, 05:11 AM   #5
Sascot
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No harm in calling, then they can decide what to do next. Glad she had a good time at camp
08-18-2014, 07:00 AM   #6
my little penguin
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Let us know what the docs say.
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DS - -Crohn's -Stelara
08-18-2014, 07:30 AM   #7
SupportiveMom
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Voicemails have been made. Now the waiting game begins. Since we are seeing the SickKids docs in 8 days I'm guessing she will want to wait until then. She isn't rapidly losing weight or blood at every trip so I know there is no need for urgency. Based on past history this trend heads us to hospital. I hate she is back to getting up on the middle of the night, now so am i. These last 6 weeks have been so wonderful.

Could the Mezevant cause these issues? I don't know why she added it anyways except to either push her symptoms one way or the other.
08-18-2014, 10:40 AM   #8
Maya142
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Has D had trouble tolerating mesalamine in the past? Maybe you could ask if you could stop mezavant for a couple days to see if things get better?

I'm so sorry to hear she's getting worse. Fingers crossed that the docs can get this under control
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
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Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-18-2014, 10:45 AM   #9
SupportiveMom
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She only started the mezevant on the 5th. She never had it or a mesalamine before. Doc gave it to see if it could help at all which might push more towards a UC rediagnosis. She is just back to being tired all the time again & it really stinks.
08-19-2014, 05:43 AM   #10
SupportiveMom
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Its official.. back to waking up every night for bathroom trips. feeling very tired
08-19-2014, 06:14 AM   #11
Johnnysmom
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I know QueenGothel's DD had rectal bleeding from 5 Asa's, and it can be a side effect.

Maybe get the GI or nurse on the phone and ask if you can stop them before the appointment?

Keeping my fingers crossed she is feeling better and you both can get some sleep soon.

(((Hugs)))
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Dx Oct 11 2011 Crohns disease
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08-23-2014, 09:41 AM   #12
QueenGothel
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It was obvious for us. Gave her rectal Canasa suppositories up all night pooing blood. It actually is pretty common side efffect. It was listed as rare 3 years ago but it pretty common side effect. I would remove it and add Hydrocort enemas or compounded Budesonide Suppositories.
08-26-2014, 10:16 PM   #13
SupportiveMom
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So I am not liking the transitioning to the 2nd opinion doc. It is causing a lot of stress on my end. hopefully this transition will end soon. Saw the new GI and reconfirmed the original diagnosis of crohn's thanks to the small bowel inflammation in the original MRE. At least she was thorough in pulling the pathology to be sure. She has taken her off Mezevant immediately as it may be part of the reason she is heading back in the negative direction.

We are getting a pill cam done on her to get a better view of her small bowel. Based upon this surgery will mean an ostomy & no j-pouch. D is very upset about it and is refusing to talk about it. We have a surgery consult in October & another endoscopy/ colonoscopy. The doc mentioned 2 last forms of potential treatments before surgery. One is some sort of antibiotic cocktail that includes 4 antibiotic that includes Flagyl, amoxicillin, & 2 others. The other is Stelara (ustekinumab). based upon D's allergy to penicillin we are going to try Stelara 1st.

Anyone heard of this antibiotic treatment? Not much on Stelara on the site. Really hoping this works.
08-26-2014, 10:22 PM   #14
Catherine
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Wondering whether the 4 Antibiotic would be for MAP?? Sorry just guessing.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
08-26-2014, 10:43 PM   #15
SupportiveMom
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From what I read I think it will be for MAP
08-26-2014, 11:23 PM   #16
Maya142
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I've heard that some people who don't do well on Anti-TNFs do VERY well on Stelara. I hope that it will your daughter's miracle drug. Poor D, I can imagine how upset she is, it's so hard especially as a teenage girl .
08-27-2014, 07:35 AM   #17
Sascot
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I hope the Stelara works well for her. I seem to remember reading one or two of the kids on the forum using it but can't remember who, sorry. Good luck for the pill cam
08-27-2014, 08:43 AM   #18
SupportiveMom
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I know vtfamily is on it. The thread on it is very inactive. I think once summer ends there will be more people on the forum more active. It is hard to get feedback when everyone ( including me) would rather be outside!
09-10-2014, 01:05 AM   #19
vtfamily
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Well...glad I checked-in on the forum.

Yes, my son has been on Stelara for about 19 months. Anti-TNFs (Remicade and Humira) did not work for him. Tysabri was not an option and we needed to find a soultion...Vedo was too far away, so we jumped off of the cliff with Stelara.

So far, it has been great. Both pain and disease seem to be managed well. He made it through his entire 8th grade school year without any missed school days for pain and/or hospitalization. A huge improvement over the prior year!!

I hope the pill cam gives you some answers.

Best Wishes.
Cheryl VT
09-10-2014, 06:24 AM   #20
SupportiveMom
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Thanks for the response vt. Turns out D is now on Simponi (golimumab) not Stelara. I know Tysabri was not an option for D either. I am glad to hear Stelera is working well for him.

Almost 1 week after Simponi & no improvement or change...yet. crossing fingers a change is coming!
09-10-2014, 11:21 AM   #21
vtfamily
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I really hope that the Simponi does the trick for D.
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