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Crohn's Disease Forum » Parents of Kids with IBD » Conditions that mimic crohns


 
02-02-2015, 01:36 PM   #1
my little penguin
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Conditions that mimic crohns

So while I wait for DS scope in the am
And being stuck inpatient
Anyone know what conditions mimic crohns that also have hypermobility and rectal prolapse .
Gi( not ours ) mentioned talking to our Rheumo about it but didn't say what ....?

Cause it's never simply with DS ....
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02-02-2015, 01:47 PM   #2
crohnsinct
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Aw hun! Don't go there! Let the docs earn their keep. You just concentrate on keeping yourself nourished and rested and ready to hear what it is they tell you tomorrow. Cheer up your boy and keep him happy. Catch up on some movie watching.

We have all been there and have a list as long as our arms of what things could be and certainly understand not wanting to be patient and wait for the docs to figure things or catch up to us

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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
02-02-2015, 02:17 PM   #3
my little penguin
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Good nutrition and hospital food don't go hand in hand
02-02-2015, 02:55 PM   #4
DanceMom
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Our hospital cafeteria is awesome! My only complaint is that they close at 3 on weekdays and 2 on weekends.

Have you looked into Ehlers-Danlos syndrome? Hypermobile joints and rectal prolapse are very common with that disorder. I know CVID and EDS sometimes go hand in hand. Has he had thorough immune testing done? Immune deficiencies are often misdiagnosed in the early stages. Also, people with immune deficiencies are more likely to develop IBD and other autoimmune conditions.

All of this is very confusing and we are still wanting more concrete answers for our girl. Hugs to you during this process!
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02-02-2015, 05:44 PM   #5
Mehita
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The only thing that pops into my mind, though not directly related to prolapse, is Celiac disease.

But I like CIC's advice better. Just chill and enjoy some time with your boy.
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- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
02-02-2015, 05:45 PM   #6
Farmwife
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I hate ibd and the way it is so different for everyone one.
It makes no bloody sense to me. One minute you think all is well ( kind of) and then the scope tells ya something different.


Hugs, hang in there.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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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
02-02-2015, 05:50 PM   #7
my little penguin
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Thanks mehita
He has been tested for celiac at least 7 times
Including during scopes
02-02-2015, 06:03 PM   #8
CarolinAlaska
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Hugs. Sorry I don't know.
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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.
02-02-2015, 06:21 PM   #9
kimmidwife
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MLP!
I was thinking exactly what dancemom said. Some kind of immune disorder that IBD can be a secondary diagnosis. Also I don't know much about it but mitochondrial disorders can have a lot of GI involvement from what I understand of the people I know who have them.
Anyway I agree don't go there yet. One step at a time.
I don't remember though has he had a complete immune workup?
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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.
02-03-2015, 04:57 PM   #10
my little penguin
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http://www.hindawi.com/journals/isrn/2012/751768/tab4/

Probable winner
Talking to Rheumo Thursday
02-03-2015, 05:08 PM   #11
Farmwife
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This is the exact reason we went to Mayo.
We learned a lot about EDS at Mayo and talked to one of the genetics leading the research efforts. They want her to be closer to 10 before they say for sure.
Both her GI and Rheumy know the possibility is there...... I hope to their wrong.
02-03-2015, 05:53 PM   #12
Clash
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I'm only seeing a tab page for your link, my little penguin? Is it EDS they think probable? The hypermobility type or one of the other types?

Hope you get some answers soon?
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Mom to
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
02-03-2015, 06:11 PM   #13
my little penguin
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Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations
Marco Castori
Division of Medical Genetics, Department of Molecular Medicine, San Camillo-Forlanini Hospital, Sapienza University, Circonvallazione Gianicolense, 87, 00152 Rome, Italy

Received 11 September 2012; Accepted 14 October 2012

Academic Editors: B. Amichai and A. Zalewska

Copyright © 2012 Marco Castori. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Ehlers-Danlos syndrome, hypermobility type, constituting a phenotypic continuum with or, perhaps, corresponding to the joint hypermobility syndrome (JHS/EDS-HT), is likely the most common, though the least recognized, heritable connective tissue disorder. Known for decades as a hereditary condition with predominant rheumatologic manifestations, it is now emerging as a multisystemic disorder with widespread manifestations. Nevertheless, the practitionersí awareness of this condition is generally poor and most patients await years or, perhaps, decades before reaching the correct diagnosis. Among the various sites of disease manifestations, skin and mucosae represent a neglected organ where the dermatologist can easily spot diagnostic clues, which consistently integrate joint hypermobility and other orthopedic/neurologic manifestations at physical examination. In this paper, actual knowledge on JHS/EDS-HT is summarized in various sections. Particular attention has been posed on overlooked manifestations, including cutaneous, mucosal, and oropharyngeal features, and early diagnosis techniques, as a major point of interest for the practicing dermatologist. Actual research progresses on JH/EDS-HT envisage an unexpected link between heritable dysfunctions of the connective tissue and a wide range of functional somatic syndromes, most of them commonly diagnosed in the office of various specialists, comprising dermatologists.

From:

http://www.hindawi.com/journals/isrn/2012/751768/


Clash
Haven't talked with any of his docs yet
Just the floor gi said he wanted our permission to discuss DS history with DS's Rheumo about the connection of hypermobility /crohns/rectal prolapse /constipation etc...
02-03-2015, 06:18 PM   #14
my little penguin
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IMO don't think it really matters if they can explain
DS by eds since there really isn't a treatment per say it's just a syndrome
02-03-2015, 06:38 PM   #15
Clash
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Ok so hypermobility type. And yes but at least if you know EDS hypermobility type then you will have the knowledge of other problems if they arise.

There are a lot of EDsers in my other group, adults and children(parents). They usually go ahead and request genetic testing for the other types since hypermobility can go along with all of them and also since unlike this type they can be genetically tested for. I'm assuming the testing is especially warranted if symptoms of the other types occur. It seems the classifications were only recently nailed down.

I hope you find some answers soon and that DS feels better soon.
02-04-2015, 11:17 AM   #16
Tesscorm
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I know only what you've posted re EDS but I hope you get some clearer answers/direction soon.

EDS or not, knowing what you're dealing with will help. But, I do hope a simpler explanation can be found!

Am thinking of you and hoping you soon get some clear direction!
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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
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02-05-2015, 09:39 PM   #17
my little penguin
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Talked Rheumo
Thinks DS may have connective tissue disorder on top of Ibd and JSPA
Didn't specify which one
So ....
Now we wait ...
Hate new possibilities
02-06-2015, 05:34 AM   #18
DustyKat
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Oh man mlp. Sending loads of hugs your way!

Thinking of you and your lad.

Dusty. xxx
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02-06-2015, 10:16 AM   #19
Tesscorm
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I hope 'we wait' means that some testing can be done! That it's not simply 'wait and see'...

How is he feeling now?

It's tough not having a clear plan but, remember to try to take one day at a time. We all know that's incredibly tough sometimes but as was said above (I think), let the doctors do their job and try not to get buried under the weight of possibilities. Wish I could do more but lots of thoughts and hugs
02-06-2015, 10:50 AM   #20
my little penguin
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Sorry for not being more clear Tess
The team of docs is going to meet and discuss DS to determine which connective tissue disorder they think he has ( mulitle disciplines) .
I assume testing will start after that
The "we wait " is our family waiting for the docs to figure out which one or ones /type best fits him then testing Prior to dx
Once he has a dx then we can get a treatmebt plan
Also plan to use the DNa results from 23&me to see which ones he is at higher risk for
To reduce the time to figure it out since it was dead on for his crohns and JSpA
02-06-2015, 11:03 AM   #21
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Paging in Twosons
Her son was dx with EDS last year.
Maybe she can be of some help.
02-06-2015, 11:09 AM   #22
my little penguin
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Unfortunately there are over 200 connective tissue disorders including eds
02-06-2015, 01:40 PM   #23
lenny
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Poor kid and poor you!
02-06-2015, 02:36 PM   #24
araceli
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Sending Hugs your way.
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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.
02-06-2015, 10:27 PM   #25
crohnsinct
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Unfortunately there are over 200 connective tissue disorders including eds
That's a lot of googling! Let's see if we all take 10 or so I would say we would have this thing fully researched in an hour! No one googles faster than our gang!

Breathe MLP! This is a daunting one. Let the docs do their thing and be patient...do you need me to teach you patience
02-06-2015, 11:20 PM   #26
Catherine
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hugs
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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)
02-09-2015, 04:08 PM   #27
kimmidwife
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Hugs,
MLP so sorry to hear. I am myself in the hospital. So will be checking in periodically.
02-09-2015, 06:15 PM   #28
D Bergy
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If you can manage to get a mycoplasma test, it could rule that infection in or out.

I do not know if it is typically part of Crohns or not, but it appears to be part of my Crohns.

Dan
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02-24-2015, 09:45 AM   #29
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Oh the panic you must be feeling. Don't go there.. but I think it might just be too late not to. Any update?
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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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02-28-2015, 03:21 PM   #30
David
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MLP, do you by chance live on or near a farm/agriculture operation?

Does DS have really soft skin and bruise easily?
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