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Crohn's Disease Forum » Parents of Kids with IBD » My Daughter has been struggling for a year now


12-01-2016, 09:50 PM   #1
Jaaa1998
 
Join Date: Dec 2016
My Daughter has been struggling for a year now

The doctors are unsure what is wrong. She has a lot of abdominal pain, nausea, fatigue. Also she had 2 colonoscopies two endoscopies. They found ulcers in her duodenum, unexplained because she does not take pain killers. But the first Colonoscopy was not complete. The second endoscopy the ulcers were gone. The second colonoscopy they found she had extra colon and found inflammation in her ileum. They took biopsy of the inflammation and ulcers both coming back negative. But her cal protection chemicals in her stool came back extremely high, with no explanation from the doctor. her doctor thinks her constipation is from the twisted colon, but even on high doses of stool softener, mirlax, and fiber making me pass stool, the abdominal pain is still here when she eats or applies pressure. HELP
12-01-2016, 10:20 PM   #2
Maya142
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Hi and welcome!
Have they done any small bowel imaging for your daughter? Such as an MRE or pillcam? Sometimes Crohn's can hide in the small bowel. It sounds like your daughter has had visible ulcers and inflammation that were seen on scopes though. Were the biopsies completely negative - i.e. no inflammation at all? Or did they show inflammation but no granulomas?

How old is your daughter? Have you considered a second opinion?

I'm going to tag some parents who may have some ideas for you: Clash, my little penguin, crohnsinct, pdx, Dancemom.
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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
12-01-2016, 10:36 PM   #3
xeridea
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I second Maya142's opinion on [contrast] imaging. If you can go the Pillcam route, they should do the patency test first, where a dissolvable capsule is administered beforehand. An x-ray is used to check that this patency capsule passes and there are no blockages that would prevent pass-through of the Pillcam.

That said, contrast imaging is probably your best bet for detecting obstructions and more.
12-01-2016, 11:42 PM   #4
Jaaa1998
 
Join Date: Dec 2016
The results came back negative, for crohns there was obstruction and inflammation in the ileum, but the doctor still said it was not crohns. She's had barium swallows, and ultrasounds but nothing like a pillcam. Her doctor does not believe anything is going on. She recently turned 18 all the problems started about a year ago when she was 17 and the pediatric doctor before she switch was really leaning towards Crohns and wanted to do a pillcam. This doctor does not.
12-02-2016, 08:02 AM   #5
CarolinAlaska
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Will your peds GI see her still? Sometimes they'll keep seeing an established patient until they are 22.

Is your daughter extra flexible? My daughter has extra colon and I suspect it is due to her Ehlers-Danlos Syndrome which causes a lot of GI problems. How high is your daughter's fecal calprotectin? If she doesn't have cancer or an infection, it is pretty specific for IBD. Maybe your area has adult GI's that specializes have special interest in IBD? Keep knocking. Make your GI explain the elevated fecal calprotectin if he is dismissing IBD. Don't be afraid to move on if he is not working hard to help.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
12-02-2016, 04:14 PM   #6
Farmwife
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My son (non ibd kiddo) had a redundant colon also.
His is shaped like an m with a twist at the bottom.
It caused no issues for most but some need it removed.
Does your doctor know this?
If things back up in your system (gi tract) that alone may cause ulcers.
I agree with the second opinion.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-02-2016, 06:47 PM   #7
Jaaa1998
 
Join Date: Dec 2016
My daughter does have extra colon. They explained her colon looks like spaghetti. But it has never cause any problems before this. Her Calprotection level was at 260, it is the only thing that has shown up on any stool samples. Also Farmwife they already told us surgery is not an option and her GI already refused to remove any of her colon. She had to go to the ER this morning for abdominal pain because it has gotten so bad. They just continue to put her on more medications and are not even bothering to do a pillcam or anything of the sorts.
12-02-2016, 08:26 PM   #8
Farmwife
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Can you do a second opinion?
12-02-2016, 08:28 PM   #9
Maya142
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Have you considered seeing an immunologist or rheumatologist? Sometimes rheumatic disorders can have bad GI symptoms (and mimic IBD) - same with immunodeficiencies.

When do you see her GI for your next appt? I'd push for a pillcam or MRE.
12-02-2016, 10:36 PM   #10
Jaaa1998
 
Join Date: Dec 2016
We just got an appointment for another doctor at a different hospital. I haven't talked to any other doctors yet though. We know it isn't an infection or cancer they keep telling her if it's IBS but I feel like it's worse then that. Her symptoms are much worse and getting worse by the week.
12-03-2016, 10:08 AM   #11
CarolinAlaska
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IBS is a term used too frequently. It should require a thorough work up to rule out other bigger problems first, but many docs go the other way and make you prove it is more... It's maddening. In these cases I think IBS means I BE STUPID (referring to the doc being too stupid to figure it out).
12-03-2016, 11:20 AM   #12
my little penguin
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So the thing to remember is things that fLl under "ibs" umbrella can be very severe and debilitating
It only means that whatever is causing the issue (typically they don't know)
Does not cause physical damage to the gut
So no ulcers
No signs of inflammation ,strictures or fistulas
No blood on the stool
And no weight loss /lack of growth

My ds has Crohns and other things
Gastroparesis causes a lot of abdominal pain
Food intolerances can cause severe abdominal pain and diarrhea (ds has this to many foods)
Eosinophilia disorder can cause issues as well

In order for a pathologist to check the -this is Crohns box then you need to have non caseating granulomas found (only found in 30% of the cases btw)

Auto inflammatory disease cause a myriad of symptoms as well

My point is don't get tied to one diagnosis
But do advocate for your child

Hugs your way

Can she try formula only for a few weeks to see if that helps
It helped us isolate foods that was triggers for ds that we didn't know weee
It is also used to treat inflammation in ibd and Egids instead of steroids
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12-03-2016, 05:46 PM   #13
DanceMom
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My daughter had a whole host of GI symptoms and it took 5 or 6 scopes (I seriously lost count) to get a diagnosis. And even after reading the pathology report our GI was hesitant to diagnose! Point being, keep pushing for tests/answers/solutions. It may not be Crohn's, but that doesn't mean it's IBS either. There's a ton of other, more rare disorders that it could be. If you're getting nowhere in GI try seeing a Rheumatologist or Immunologist. Just don't stop trying.
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
12-03-2016, 06:10 PM   #14
xmdmom
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You wrote "The results came back negative, for crohns." Do you have the biopsy report? If so, can you post the findings. If not, please find out what it says. It is very important to know what the pathologist found. If there were ulcers, it is unlikely that the biopsy was normal.

As MLP wrote, only 30% of cases of Crohn's have granulomas on biopsy. It is possible the doctor is saying it's not Crohn's because of the lack of biopsy but that's not a correct thing to do. A lack of granulomas does not rule out Crohn's. My son and 70% of people with Crohn's didn't have granulomas on their biopsy but were diagnosed just the same based on the microscopic findings, other lab tests and clinical findings.

You wrote "there was obstruction and inflammation in the ileum, but the doctor still said it was not crohns. ....... Her doctor does not believe anything is going on." This is not logical thinking on the part of her doctor. I'm glad you are seeing another doctor.

Wishing you and your daughter all the best!
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