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05-01-2014, 10:16 AM   #991
Farmwife
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Wait, is the Orange blood in his stool or from a cut?
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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
05-01-2014, 01:30 PM   #992
mummy2gastricboy
 
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It was from aspiration from peg, he was admitted to hosp for it and dr said it was 'orange blood' and kept him nil by mouth for emergency scope but never did it
05-01-2014, 03:36 PM   #993
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Just wanted to draw attention to this thread here. There's a new member of the forum with a 13-year-old who is struggling to find a diagnosis and needs help.

I'm going to move the thread later to Undiagnosed/Parents of kids with IBD, but for now wanted to leave it in General IBD in the hopes more people would see it. If anyone could help out and respond in-thread, that would be lovely!
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-02-2014, 02:52 AM   #994
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He had a good meal last night some chicken, chocolate cake and grapes. He woke up with tummy ache and was sick. No food, coffee ground blood and lots of mucus.
He has on many occasions been sick with food thats come out undigested 10-15 hours later.
05-04-2014, 08:03 AM   #995
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Hey have date through for my daughter Katie's MRI of small bowel which is the 6th June. We had gastro appointment on Thursday for results of biopsies which didn't reveal much. She said there were some ? cells on them (said it can occur in some people forgot the name) but apart from that nothing much to see. Still has patches of gastritis also. Rheumatology have arranged for her to go into hospital for a week on the 19th May for intensive physio (has chronic fatigue/ME) and more tests from them and gastro. Gastro going to try and bring MRI forward from June (hopefully) so she can have it done whilst in hospital. Also going to repeat calprotectin and bloods. She said if MRI is ok then going to do capsule endoscopy and because she needs another bowel prep for that she will repeat colonoscopy also. She said calprotectin levels were 405, ESR levels have been 24, 19 and 38 and her ferritin and iron stores were low. She has put her back on iron tablets again as was beginning to have same symptoms as before when it was low. They are obviously still looking hard and so frustrating because something is going on but they don't know what. She has become so constipated over the last few months. Takes 2 laxido sachets and also lactulose and still doesn't go for 4 days at a time. Has been having more pain on right side and Gastro said that was the area she was unable to reach. Can you have constipation with Crohn's - I always thought your bowels were loose. She also freaked me by saying perhaps Rheum were looking at a sort of vasculitis issue. Anyone's kids had an MRI and how did it go? She is to drink a liquid made up of 50ml of lactulose and water and worried how it will affect her as she is also Type 1 Diabetic and we need to remove the pump whilst in MRI which they have said will be approx. 45/50 mins. Any advice greatly appreciated. x
05-04-2014, 08:13 AM   #996
Clash
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My son has CD with location starting at the ileocecal valve and upward in the terminal ileum, since this is small bowel he doesn't tend toward diarrhea but more toward constipation. Not everyone with CD experiences D, some experience C and others deal with both.

As far as MRI my son had one with contrast. It lasted about an hour and he had to lay very still. He has also had an MRE(magnetic resonance enterography) which was great at visualizing the bowels and is no radiation. He recently had a CT scan as well.

I hope you are able to find some answers son Cat26!
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Clash
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
05-04-2014, 08:31 AM   #997
Catherine
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My daughter was dx at 16 with Crohn's. She has no bowel symptoms. Although she has had two X-ray which show whole large bowel full of stool.

Her main symptoms were low iron, anemia, stomach pain and in the final 2 months before dx severe weightloss.

So yes it possible to have Crohn's without the usual bowel symptoms.
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Catherine
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)
05-04-2014, 12:56 PM   #998
my little penguin
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DS had and still has constipation with crowns- so bad it lead to rectal prolapse.
he also had an MRE- about an hour of imaging time.

his ferritin is low as well.
good luck
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05-04-2014, 04:48 PM   #999
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Thanks ladies much appreciated. She will have contrast via cannula during MRI but has to drink liquid first then given some buscopan I think through the IV to stop bowels contracting. Just wish we could get some answer now. She has been T1 diabetic for 10 years, now had chronic fatigue syndrome for five years and been so unwell. For the last five years they have kept saying they think something "else" is developing but not sure what. Lots of auto immune of both sides of the family. Had low C4 and borderline C3 in her complement bloods also. Had bowel problems since becoming T1 and suffered with constipation on and off for years but these last two years been in so much pain with tummy and last six months constipation getting worse. Good to be able to ask the questions on here so many unanswered. Thank you all xx
05-04-2014, 05:52 PM   #1000
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Hi Cat26, my daughter also has Crohn's with constipation. It seems like quite a number of kids here do.
I'm going to tag DanceMom, as she has some experience with vasculitis and immune disorders.
Hope the MRI goes well!
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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
05-04-2014, 06:18 PM   #1001
DanceMom
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Unfortunately I do have some experience with vasculitis and immune disorders. According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN). Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.

A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects. An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future. We've put that off for now due to the risks involved.

As far as immune testing, we started with basic immunoglobulin labs and antibody testing. It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case. We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay. The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
05-05-2014, 04:56 AM   #1002
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Is there anything I can physically do to help him? Apart from try and get a referral for the gastric team again?
What do you think the orange 'blood' could have come from?
05-05-2014, 07:18 AM   #1003
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Unfortunately I do have some experience with vasculitis and immune disorders. According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN). Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.

A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects. An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future. We've put that off for now due to the risks involved.

As far as immune testing, we started with basic immunoglobulin labs and antibody testing. It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case. We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay. The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.
Dane Mom thanks for that. Unfortunately we are in Scotland and we have to go with the tests the hospital do - which can be very limiting. She has had full Rheumatology testing done and this is repeated every six months at the moment. Was involved with Immunology at the beginning and they diagnosed Idiopathic Angioedema as she gets swelling to her lips, face and left knee!!! They have always just said it is her immune system over reacting which causes this. I know they are keeping a close eye on things but don't do real indepth immunology testing - wish they did.

Thanks for all your help - have felt so alone - hubby putting head in sand and not facing up to whats going on. Feel like she never gets a break from ill health and just want some "normal teen years" for her. Hopefully we will get some answers from the MRI but not that optimistic as we thought we would get answers from endoscopy/colonoscopy.

Thanks again xxxx
05-05-2014, 07:47 AM   #1004
DanceMom
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My daughter's lips swelled at one point too. They would swell so large that they would split and bleed. She was on Prednisone at the time so the doctors dismissed it as "moon face". I'm not sure I buy that but I didn't push the issue.

Has she had her Immunoglobulins (IgG, IgA, IgM) checked? That's a very simple blood test that could give some important information about her immune system. It is a good starting point.
05-05-2014, 09:05 AM   #1005
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Yes Dance mum I'm sure she has. Unfortunately we don't get copies of her results. I had to request a copy of her file (and pay for it) and its up to the doctor which letters they let you see!! I feel I am in the dark as they usually only say whether the bloods are ok or just lately the levels of ESR, iron, caprotectin. Normally her Rheumatologist will just say whether they are "ok" or not - never get told levels and only once did she tell us about the complement levels. Wasn't till I got copy of file I saw level of C4 was 15 before she became ill and dropped to 8 and has only climbed back to 11 in last five years. I do have copies of some of her blood results but don't know what any of the levels mean. Am going to dig her file back out and see. Unfortunately don't have copies of any of her latest results.

Thanks again DanceMom for your help xxx
05-05-2014, 09:50 AM   #1006
DanceMom
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That must be difficult being left somewhat in the dark. Very thankful for our online access to lab results!!
06-24-2014, 08:40 AM   #1007
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Need some help ladies. Feeling really down today. Had phoned Gastro for Katie's MRI results last week and no one got back to me. Phoned again today and Dr Flynn just called to say scan was essentially normally. She had forgotten all about "pencilling her in for a capsule endoscopy and colonoscopy" if MRI was ok. Her lists are now full until after the 8th July even though she said it would be done the end of June beg of July. Asked about Calprotectin test that was done when she was in hospital on the 20th May and was still waiting on results of that also and it is now 856 which has gone up from 405 (Feb result), she had forgotten she had asked for the test again. Now she has saw this level it needs more investigating FFS! Now needs more stool tests to check for C-Diff (last two tests clear) and another Calprotectin. Will let us know dates for Capsule Endoscopy and Colonoscopy which she has new list available! She will discuss with Dr Davidson (Rheum) and get back to me. Asked if it could be her gastritis causing this level and she said no either infection or inflammatory bowel disease. Sje has also put the wind up me by saying on MRI her uterus was bulging with possible fibroids. She will need to speak to radiology again to see whether she needs an ultrasound and referral to adult gynaecology. She doesn't need anything else wrong with her for gods sake. Also been referred to Cardiology for Postural Orthostatic Tachycardia Syndrome. My stress levels are through the roof. This has been going on for months now. Getting fed up beyond belief. Just need to know what is wrong. Sorry just need to offload before I crack!
06-24-2014, 09:41 AM   #1008
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That's crazy I would be so p*ssed. Can she get her on a cancellation list for pill cam/endoscopy. Seems like she should squeeze her in somewhere/somehow.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-24-2014, 11:32 AM   #1009
my little penguin
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Can you get referred to the kiddie hospital in London ( Ormond St.. I think ?)?
Can you GP send the request for you ?
While you wait since they seem to have longer wait lists.

That sounds horrid .
06-25-2014, 04:39 PM   #1010
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Thanks ladies. She has said her lists are FULL and it will be when she gets her new lists made up! Can't get a referral as would no a valid reason for second opinion and funding would be difficult to get. (Have asked GP before). He thinks it best whilst investigation ongoing to stick with Yorkhill. Got the stool sample forms and luckily she managed to "go" last night. Forms were for C Diff, C&S and Norovirus? I thought norovirus was a short lived virus. She didn't give us one for repeat calprotectin. Anyone any advice re C Diff? Her last two stool samples for "infection" came back negative but don't know if they were specific. Also don't know why she is repeating colonoscopy as she only had the other one end of March and biopsies were ok but she couldn't reach small bowel which is why she did MRI and is doing capsule endoscopy. She said she might as well do it as Katie would need the full bowel prep again for capsule! Concerned at the rise in her calprotectin going from 133 two years ago when they diagnosed gastritis then 405 in Feb and now 856 - what do you think about it? Also scared about the fibroids as she is only 17. Just want some answers from it all now. Thanks for being a listening ear.
07-04-2014, 10:11 AM   #1011
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Phoned GP today and her stool results for infection are normal. The couldn't do the C Difficile one as "c difficle toxin testing is inappropriate for non diarrheal samples". It was a normal/hard poo she passed so they wont test it but diarrhea isn't her problem it is more that she is constipated and only has it when she has taken loads of laxatives to get things moving!! Need to phone consultant on Monday to see if she has a date for us yet for capsule endoscopy and repeat colonoscopy!
07-04-2014, 10:49 AM   #1012
my little penguin
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ds has nothing but constipation - rarely bloody d.
07-19-2014, 08:38 AM   #1013
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Looking for any words of wisedom ladies. Katie had her upper GI endoscopy, capsule endoscopy and ileo-colonoscopy yesterday. Her consultant was on holiday so it was a replacement consultant. He said appearance of bowel and stomach was normal, even her gastritis has healed up. He managed to get biopsies from the top of the small bowel and end of small bowel. We have to wait till mid August to get the results of the capsule test as it will be her consultant who will review the pictures. We asked him if appearance normal why calprotectin was at 856. He said we would need to discuss with Dr Flynn but could possible be a false test. Here is where I am confused for the last six months her calprotectin has been rising, her ESR has been raised and her ferritin was really low. I asked Dr Flynn when she phoned us could it be a false calprotectin result and she said no! So as you can see I am puzzled. Her MRI was off normal appearance apart from the fact it showed a bulging uterus with possible fibroids (she is being referred to gynaecology for that). Can you get a false calprotectin test - has anyone else here had this. The one in March was 405 and the one in May was 856. This is all messing with my head as they were testing her for the medication for IBD as well. I know we have to wait on pictures from capsule but what if these show normal as well - what else could be causing the abnormal results for the last six months?
07-19-2014, 10:06 AM   #1014
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Sorry if I've asked this already, cat26, but I can't remember all the details of your situation. Has she been tested for Celiac? Celiac can cause a high calprotectin level.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
07-19-2014, 10:52 AM   #1015
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Yes she has - she is Type 1 Diabetic so is tested every year for it and more since this has happened.
07-19-2014, 12:55 PM   #1016
DanceMom
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Is she on omeprazole? I've read before that omeprazole can cause inflated readings on fecal calp tests. Not sure how true that is. A had a result in the 460s and was feeling well, but on omeprazole. She recently had a result of 18 and was symptomatic, but not on omeprazole. Makes me wonder.....
07-19-2014, 03:20 PM   #1017
Maya142
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Have you gotten the results of the biopsies taken during her colonoscopy? The reason I ask is that my daughter's bowel looked mostly normal when they did the colonoscopy but the biopsies showed chronic inflammation and granulomas, and so she was diagnosed with IBD.
07-19-2014, 05:04 PM   #1018
my little penguin
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^^^ yeah that same here
gi wanted to start functional meds but decided to wait the week for the biopsies.
07-20-2014, 09:19 AM   #1019
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Is she on omeprazole? I've read before that omeprazole can cause inflated readings on fecal calp tests. Not sure how true that is. A had a result in the 460s and was feeling well, but on omeprazole. She recently had a result of 18 and was symptomatic, but not on omeprazole. Makes me wonder.....
Dance Mom - yes she is on Esomeprazole and was on omeprazole before that has been on it for almost four years now. Didn't know that could raise it and consultant has never mentioned it before. Just seemed strange that it rose so quickly - 133 two years ago, 405 in March and 856 in May.
07-20-2014, 09:25 AM   #1020
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Maya142 and my little penguin biopsies from March should nothing and we need to wait 2 to 3 weeks for these biopsy results to come back. Also they are checking her bloods for the chicken pox virus which I googled and there is research showing that it can lie in the lining of the gut for years and when immune system is low it can flare up so that's why they must be checking for that. Also read that calprotectin can be higher with lupus and rheumatoid arthritis. They have mentioned lupus in the past with Katie but so far her ANA has been negative but has a low C4 and borderline C3 complement in her bloods. She said we would have a joint meeting with her rheumatologist to make a plan on where to go from here. We have had so many things mentioned in the last few years I don't have a clue anymore. Will just need to wait and see what biopsies and pill cam results show. Will also ask about the esomeprazole. Thanks for your replies just still feeling a little lost with it all. Poor Katie is still so sore today and has a really sore back and tummy. She still hasn't passed pill cam out yet either but only went in on Friday. Her mouth is full of ulcers again and throat red raw looking. Its knocked her off her feet again.
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