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Crohn's Disease Forum » Parents of Kids with IBD » Colonoscopy...finally!


 
08-24-2015, 02:20 PM   #1
momofkkcg
 
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Colonoscopy...finally!

Well....I was here 2-3 years ago over concerns that my daughter might have IBD. When we saw the GI then they wanted to wait on the colonoscopy. She has had mesenteric lymphadenitis twice since May this year...which at first they thought was appendicitis. This prompted visit to a new GI in our community...which is good because I didn't have to travel. This GI decided to scope...upper and lower. I'm elated that finally my doctor is on board with my concerns...but now I'm scared to death!

She still isn't growing much...all of her classmates are taller and are developing. Now I hear people comment about her size. When she plays softball...other people around me talk about the "little one". Now I know it's not just me noticing. My parents came to watch her play ball this summer and my Dad thought they were at the wrong field because "these girls are too big...this isn't Grace's team".


Anyway...the scope is tomorrow. We are in the midst of the bowel prep as we speak. My daughter...although unhappy with the prep....is very excited that Dr. Sullivan is going to fix her tummy. Ugh...only 11 year old I know that looks forward to a colonoscopy.



I'm so nervous!

Thanks for listening!

Lisa
08-24-2015, 02:57 PM   #2
crohnsinct
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My 11 year old softball player also looked forward to her scopes this past January.

Good Luck. I hope you get clear answers!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
08-24-2015, 03:01 PM   #3
momofkkcg
 
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Ha! Too funny! Thanks for the well wishes! I hope things are well with your daughter!?


08-24-2015, 03:15 PM   #4
araceli
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Good luck tomorrow. I hope you get answers. Best wishes.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
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Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
08-24-2015, 03:26 PM   #5
momofkkcg
 
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Thanks!


08-24-2015, 03:36 PM   #6
crohnsinct
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We are getting there. First year is the hardest...figuring out which meds or combo of meds will work...but we will get there! Thanks for the well wishes.

Hint: Wipes...easier on the bottom than toilet paper!
08-24-2015, 04:25 PM   #7
momofkkcg
 
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Alrighty! We have wipes on hand! She is experiencing a lot of pain with things moving through...


08-24-2015, 07:45 PM   #8
pdx
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Hope the worst of the prep is over by now, and that the scopes go well.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-24-2015, 08:00 PM   #9
my little penguin
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Hugs
Mine was 7 at the first scope
He is 11 now ( but has had 4 lower scopes and 6 upper scopes ) so not a fan at this point
Good luck Tuesday
Hope you get answers soon
It took every bit of a year to find the right med for Ds and little more to tweak it just right .
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08-24-2015, 08:15 PM   #10
momofkkcg
 
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Thanks everyone!


08-25-2015, 10:23 AM   #11
momofkkcg
 
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All done! She has inflammation in her esophagus...a healing ulcer in her stomach and everything else looked pretty good which the doctor found reassuring. Increasing her ranitidine to twice daily and waiting on biopsies.


08-25-2015, 10:53 AM   #12
crohnsinct
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Yeah waiting for biopsies is a must but celebrate the good news so far. IDK a lot about your daughter's history but if you suspect IBD, remember it could be in the small bowel where the scopes can't reach. It is usually common practice to also undergo an MRE to look there if IBD is suspected. How are her inflammation markers? Has she had a fecal calprotectin test? It is a simple test and pretty good at highlighting intestinal inflammation. If all those are normal and scope is normal I would be good with it. Elevated labs and normal scopes would have me asking for MRE.

Other than that or growth maybe a visit to an Endocrinologist.
08-25-2015, 11:05 AM   #13
momofkkcg
 
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We have struggled with stuff on and off for years. Joint pain, erythema nodosum, fevers, eye inflammation, mesenteric lymphadenitis, elevated sed rate and crp, abdominal pain, pain a couple of bites into meals, and growth failure....at 5 she was 46 percentile...she is now 3rd.

Her scopes today were prompted due to recent mesenteric lymphadenitis and growth failure.

Last labs in March (she had 3 anaphylactic reactions...deemed idiopathic) were all normal.
She has never had the fecal test...or in MRE.

I have four children...she is my medical trouble maker.

Her Immunologist says we may never figure it out and just take things as they come. I've often wondered if we were missing Crohn's....but it seems that is not it...which is a relief!


08-25-2015, 11:38 AM   #14
DanceMom
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Sounds very similar to my girl...joint pains (not arthritis), erythema nodosum, unexplained fevers but then no fever when there is an obvious infection, GI inflammation....sorta, abdominal pain, growth failure, random eye issues.

So sorry and hope you get answers soon!
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-25-2015, 11:47 AM   #15
crohnsinct
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Fecal calprotectin is an easy test. Poop into a hat, scoop a sample, put it in the plastic hat and wait a week to two weeks. Elevated? There is an organic rather than functional (think IBS) reason. If elevated I would want an MRE to completely rule out Crohn's and then you can move along what appears to be a very difficult and long list of possibilities.
08-25-2015, 12:22 PM   #16
my little penguin
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Have they looked at mast cell disorders and egids???
Highly atopic kids have these issues
08-25-2015, 12:28 PM   #17
momofkkcg
 
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Yes they looked into the mast cells when she had her anaphylactic reactions...those tests were normal. The allergist was confident it was not food allergies...but nothing else could be identified. I don't know what egids is...I'll read on it.


08-25-2015, 12:41 PM   #18
my little penguin
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Mast cells are normal in mast cell disorder not mastocytosis.
I will post more later
08-25-2015, 12:47 PM   #19
my little penguin
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http://www.hindawi.com/journals/grp/2012/950582/
08-25-2015, 12:47 PM   #20
my little penguin
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http://www.karger.com/Article/FullText/328760
08-25-2015, 12:48 PM   #21
my little penguin
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http://williams.medicine.wisc.edu/ma...ation_2011.pdf
08-25-2015, 01:02 PM   #22
momofkkcg
 
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Thanks!! I'll do some reading!


08-25-2015, 02:27 PM   #23
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I sympathise. My daughter just had her scopes, all looked good apart from a small ulcer. We are no further forward with answers, really hope you get some answers to help her feel better
08-31-2015, 07:09 PM   #24
momofkkcg
 
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So the biopsy results are in. She left me a message on my phone tonight....but will talk to more in the office tomorrow. (I actually work with her). Her esophagus is acute inflammation most likely caused by reflux. But her stomach shows chronic inflammation. Everything below that is clear. She wants to start her on Omeprazole...which we have been on in the past with no relief. But I'll try it again.

My question is could this be crohns in her stomach? I'm bothered by her short stature. If she doesn't grow soon she won't make 5 feet tall. I'm not sure if I should ask for more treatment when I talk to her tomorrow or just wait...yet again...and see if the omeprazole will help?

Sooo frustrating....


08-31-2015, 07:55 PM   #25
teeny5
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You can get Crohn's in the stomach.

I hope you get more answers from the Dr. Definitely ask about/voice your concerns about her growth.

How tall is she? I have always been short...only 5ft tall and fully grown. I am the shortest in my entire family on both sides. Just wondering if she will be naturally short or if the disease has stunted growth...anyway for sure worth talking about with the Dr. Let us know how it goes.
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08-31-2015, 08:07 PM   #26
crohnsinct
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Both of my girls have Crohn's in their Stomach but the doc has been emphatic that this is not the cause for all their issues. I would push for a look at the small bowel at this point. You really want to rule in or out Crohn's and not be messing around treating only one piece of the puzzle.
08-31-2015, 08:34 PM   #27
momofkkcg
 
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She will be twelve in a couple months and she is 4'5". Her older sister is 5'2...so I do have short girls...but she grows so slowly about 1.5" per year...she won't make 5 feet.

Crohnsinct...what symptoms do your girls have? How was the diagnosis made? Is a biopsy with chronic inflammation enough? Or is there something else to look for? I'm confused...


08-31-2015, 08:37 PM   #28
momofkkcg
 
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. This is my daughter with her friends. They are all the same age and all standing on the same ground level. If the picture doesn't show...sorry...I tried! Lol


08-31-2015, 09:05 PM   #29
Maya142
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I also have small girls - one has Crohn's and one does not. Both are 5'2-5'3. The one with Crohn's did have chronic inflammation in her stomach but we still aren't sure if it was from Crohn's or from the meds she takes or reflux.

She was put on Prevacid which helped a lot and also took Carafate for a while. She had granulomas in her small bowel (terminal ileum) and inflammation through her colon which is what clinched the diagnosis of Crohn's.

Your daughter is small compared to her teammates. Has she ever seen an endocrinologist?
I agree that an MRE or pillcam to check her small bowel is a good idea.
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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

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Ankylosing Spondylitis at 18
08-31-2015, 09:15 PM   #30
momofkkcg
 
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No...she has not seen an endocrinologist. Her TSH is normal. Her bone age was checked as well and unfortunately that was right on target.

I just think I'm at the end of the road for now. I'll just give her the omeprazole and hopefully that helps. I just don't know what to do anymore without looking crazy. I do know one thing...my gut says something is up in this child's body. And whatever it is...it's tricky.


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