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07-20-2014, 09:31 AM   #1021
Cat26
 
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Oh and forgot to say it took over four hours again for the piccolax bowel prep to work again. Just seems really slow to work with her. She is also being investigated at cardiology as well for POTS (postural tachycardia syndrome) which can also cause gastric problems also. Wish we could go private but can't afford to and have to go through the NHS which takes forever. She is booked in for a table tilt test for the POTS on the 8th of August so might rule out one thing soon. Would be lost without this site to ask you wonderful ladies questions. xxxxxx
07-20-2014, 03:12 PM   #1022
my little penguin
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Random thoughts
JSpA can cause joint issues ( including back pain) AND sub clinical inflammation in the GI tract.
Might be worth discussing with her Rheumo
http://www.medscape.com/viewarticle/543896

DS has JSpA / arthritis associated with IBD.
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09-26-2014, 03:04 AM   #1023
ben11
 
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Hi guys need advice for 11 year old son was on antibiotics for a month diaherra abdominal pain started no gi run 2 stool test pcr negative for c diff so he ruled that out fecal calpro 65 slightly raised gi thinks ibs upper gi normal can is have advice guys what do you guys think
09-26-2014, 03:10 AM   #1024
ben11
 
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Hi guys need advice son was on antibiotics for a month diaherra started abdominal pain gi did 2 stool test pcr negative for c diff he ruled that out upper gi normal fecal calpro 65 slightly raised pain worse at night still diaherra sometimes temperature. Gi thinks ibs Ben had a colons copy nothing seen need advice Ben is 11 what do you guys think
01-13-2015, 04:05 PM   #1025
Fosterfamily2303
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Hi all,
I myself have crohns-colitis. My son started showing symptoms in November. Belly pain that comes in goes. Mostly by belly button. When he gets the belly pain he dosent eat and has increases loose bm. He has had his appendix checked. Normal. He had a ct only thing showed was pnenomena (which was odd as xray was normal? ) his blood ct showed extremely low wbc (range was 5.0-14.5 and his was 2.9) , his sed rate was high (range 0-20 and his was 29), rbc-dw I think it was ..was low but forget the numbers off hand.

We finally got ped agree to gi at a children's hospital which is Tomorrow- Wednesday. His blood and cdiff stool was all negative.

I have kept a diary for 2 weeks and no relations to food with the belly pain .
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01-15-2015, 12:55 PM   #1026
Cat26
 
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Hi haven't posted for a while as so many tests on Katie taking so long. We are still no further forward they completed pill cam (first one didn't work and had to wait on another appointment). What that showed is raised lymph nodules throughout her bowel and up intestines and into tummy. Gastro said she has only really saw this before in babies with a milk allergy (we have tried excluding milk before for a month with no difference). She is going try her again on exclusion diet. She is also being investigated for autonomic nervous system neuropathy (due to her diabetes) as they have discovered she has POTS (when standing her heart goes to fast). Been started on heart medication but they have also said it could explain gut and bowel problems as nerve could be damaged. Still has a raised calprotectin level and slightly raised ESR and CRP. She is going to be moved soon to adult clinic for Rheum and Gastro - have a meeting with them next week. Have been asking gastic emptying test for last 2 years and still waiting so need to put my foot down. Gastro said she also hasn't ruled out an auto immune condition or possibly the start of Crohn's but not sure. Living in Scotland so we have to take what the NHS gives us and can't afford to go private. Hopefully autonomic tests will gives us an answer and the rest is just wait and see
01-15-2015, 01:08 PM   #1027
Clash
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I was dx'ed with POTs. There are a large portion of those with POTs that have gastroparesis. So I think the gastric emptying test would be important. Autonomic nervous system dyfunction can play havoc with so many different things. If she already has some neuropathy I would push for the array of autonomic functions rests. Although, I guess diabetes can cause neuropathy as well.

I hope you get some answers soon and the heart meds keep her heart rate in check.
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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
01-16-2015, 05:52 AM   #1028
Cat26
 
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They have put off doing gastric emptying for over 2 years but I will be asking for them to do it at the meeting next week. Although she has been Type 1 for 11 years her diabetic control has been good and they think she may just be one of the unfortunate ones who develop complications even though she (and I) have done our best to try and keep things at a good level. They have mentioned gastroparesis before in the past. She is on Domperiodone already and cyclizine and Zofran for sickness. Thanks for all your help. xxx
03-18-2015, 07:44 AM   #1029
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Hi! I'm Melissa and my 13yo daughter, Gwendolyn has been told that she could possibly have Crohn's or UC. Three and half weeks ago she began experiencing diarrhea. At first I thought it was just the stomach bug that has been plaguing so many right now, but after 4 days with no sign of relief and increasing frequency I decided to take her to the doctor. At the appointment I told the doctor about how frequent she was going and how uncomfortable she was. She was having some pain up around her belly button. We were told to try Imodium and see how she was over the weekend. Monday (3-2-15) I called the doctor's office and told them that the diarrhea was getting worse, not better. They ordered a stool culture. By Friday (3-6-15) she had obvious bleeding when having a bm. I called the doctor yet again and another stool culture was ordered along with blood work. The following Monday (3-9-15) I pushed to have her seen by the doctor again. Her appetite had disappeared and she was still having diarrhea with blood about 11 times a day. She had lost 11lbs in two weeks. All the test results were coming back normal.. I'm still not sure what they found in the blood test as we were still waiting for results the last I talked to anybody. We were finally referred to a GI. and saw him on 3-12-15. Tomorrow she is set to have an upper endoscopy and colonoscopy. I am hoping for some sort of diagnosis so they can start some sort of medication and she can get some sort of relief.

Gwendolyn is hanging in there. After seeing the GI her appetite has been slowly returning. She is still getting pain and seems to have to run to the bathroom more often when she is moving about. Sleep has become her best friend. She has been out of school for almost a month now and falling behind drastically. I am so sad to see how this is effecting her and I feel very helpless because there is nothing that I can do to help her.

This afternoon she will be starting the miralax prep and I'm pretty nervous about it. With her already frequent bathroom trips and the bleeding when she has a bm I'm worried about what this is going to do to her. This is also the first time she will be going under general anesthesia so that brings on more worrying. She is taking this all in stride and doesn't seem nervous or worried about anything other then getting the IV put in. If anybody has any tips or advice on making a prep go smoothly I would truly welcome it.
03-18-2015, 09:07 AM   #1030
Jmrogers4
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Hope the scopes provide answers and you get a solid plan moving forward.
Clean out is no fun. We try and make the bathroom as comfortable as possible a small stool for the feet (even a box), video player. Blood is scary and it always seems like there is a ton. We have had to make games out drinking the miralax in order to get it down.
We usually get to clear (actually yellow) pretty quickly, hope it is the same for you daughter.
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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
03-18-2015, 09:12 AM   #1031
CarolinAlaska
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Miramax prep is not too hard on them. I think your daughter won't be too bothered by it after what she's been through. I'm sorry she's had such a rough month. I hope they can find out what's wrong quickly. Have her drink lots to keep hydrated all day!
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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.
03-30-2015, 09:02 PM   #1032
Misty triplett
 
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My 13 yr old son diagnosed with crohns a couple weeks ago. Never showed symptoms leading up to this prior flare. I had never even heard of crohns and dont believe it runs in my family anywhere.
He had the flu mist about a month prior to his first flare and I hate to think it was the trigger to the flare.
Does anyone know any information on this?
Creates a lot of guilt for me...
03-30-2015, 09:50 PM   #1033
my little penguin
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Mommy guilt is normal
If they knew what caused crohns - no one would do"that"...
However they don't know
My kiddo was dx at age 7. No family history of crohns either
He is 11 now so it been a few years
Give yourself time it takes a while
Tagging crohnsinct clash Tesscom jmrogers4

Welcome to the club no one wants to join
03-31-2015, 04:50 AM   #1034
CarolinAlaska
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We all wracked our brains trying to figure out what WE did wrong. No one's at fault. Hang in there. The stress does get better. Or maybe we get stronger?
03-31-2015, 11:25 AM   #1035
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I hope it does get easier...
Does there seem to be a catalyst for most? I guess something that set it all in combination with the other components believed to play a role in crohns?
03-31-2015, 01:23 PM   #1036
Clash
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I had Mommy guilt since my son's complaints started after he started a px of antibiotics for acne. But the inflammation present had been there much longer than the span of the antibiotics.


There is no certain combo of things that creates a catalyst. A flare(not necessarily the disease) can have different triggers for everybody(or different believed triggers) or no triggers at all.

I let go of the Mommy guilt my time is better spent looking forward with research and insight on how to best prepare him for dealing with this illness, newest meds, etc etc etc.

Good luck.
03-31-2015, 02:07 PM   #1037
Misty triplett
 
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Thanks all for answers
03-31-2015, 02:18 PM   #1038
crohnsinct
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We are all experts at the mommy guilt but truth be known the thinking now is that there are many different types of IBD and each has it's own unique combination of causes etc. Think G.E.M. (Genetics, environment and microbial). Once I started understanding more about the disease I was able to let go of the mommy guilt. Next comes the trying to understand it. It is so different for everyone. I, like Clash, put all my energy now into research, monitoring and trying to make my kids the healthiest possible to combat the disease but also the damage the meds do to their other organs etc.

My older daughter was the same as your son. Few ,very slight symptoms that I managed to ignore for two years until her first flare which ended her in the hospital in ICU! Talk about guilt! But the docs were all great, emphasizing that it was nothing I did or didn't do and that even her ped didn't pick up on it.

Hugs! It gets easier and the community here is great at helping you move along.
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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
03-31-2015, 09:22 PM   #1039
Misty triplett
 
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Very tough stories to hear from everyone
I pray for a cure for our children.
Thanks for sharing
Seems like a common theme is medications that are so common in our lives that cause flares
04-01-2015, 06:29 AM   #1040
Pilgrim
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I *think* I saw signs after my daughter had a rotavirus vaccine at 2 months of age. But she started her flare just after her 3rd birthday. But there is no way to know. Don't be too hard on yourself. Try to focus on helping him work through with a feeling of hope. It's tough to be diagnosed at that age.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
04-01-2015, 11:27 AM   #1041
my little penguin
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Misty
I think you missed the point
The cause of crohns is not known period too much variability among different groups etc...,

Stating A happened therefore C happened isn't as clear cut.

As a parent I have found it best to focus on what I can control
- be informed on the lastest research -treatment s ( see pediatric research sections )
- teach my kiddo life skills on how to cope /function with school etc even when his crohns is not in remission - life long disease that needs to be dealt
- teach my kiddo how to manage their disease - drugs/insurance companies/doctors/tests etc.,,,,
04-01-2015, 11:49 AM   #1042
Clash
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^Agreed. Even though my son's complaints started after antibiotic use it was clear he had damage dating much further back. So you can't attach he had antibiotic to he developed CD.
04-01-2015, 12:02 PM   #1043
Misty triplett
 
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I agree it's very complex and not one thing or medication is at fault it just seems that there is a trigger of some sort to cause an initial flare and for many it seems to be a medication. Even though symptoms may have shown prior possibly unnoticed. I will focus on moving forward because there is no other option, I just think like many who are new to this I am looking for answers and hope that they are found someday to avoid future issues.
04-01-2015, 12:17 PM   #1044
my little penguin
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Thing that helped me
23 & me Ibd study
DS has 148 different snps associated with crohns including nod2
04-01-2015, 01:02 PM   #1045
Misty triplett
 
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I will check those out, thanks for the help
04-01-2015, 01:17 PM   #1046
my little penguin
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https://www.23andme.com/ibd/

Free study
04-06-2015, 05:13 PM   #1047
maudmere
 
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Hi Im brand new to this forum and so happy to find it. I hope Im posting in the right place. Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar? My child is currently being tested for GI issues and his doctor is putting all future testing in the hands of this test and Im uneasy about relying on one test.
Backstory: I myself was diagnosed with Crohns disease a few months ago at age 34, its been something Ive always dealt with and was labeled IBS/anxiety. It has not always been easy for me, but thankfully so far my flares have been mild-moderate. After several tests and finally seeing a GI who immediately ordered endoscopy/colonoscopy followed by the pill endoscopy- I now had a name for it- and although still in a flare Im having some success with Pentasa and just finished a round of Entocort/Uceris for partial obstructions.
All of my focus however is aimed towards my 7 year old. We have been working with a pediatric GI who is considered one of the best here and I do like him, but Im considering getting a second opinion from a different GI group. My 7 year old has suffered from a few years of off and on- constant diarrhea, horrible abominable pain, losing stool at school/playing/etc. and has gained NO weight in over a year. He has fallen off the growth chart for his age and keeps dropping. What scares me is that his symptoms started exactly as mine did, the exact same age as mine did- as a lactose intolerance in kindergarten. His GI will not test invasively, scope, etc. unless he gets a "green light" from certain tests- something showing inflammation in the stool, especially the Fecal Calprotectin test and my son has received normal results on that. The only non invasive test that came back positive was a strong positive on the hydrogen breath test testing for lactose. At this point his diarrhea and pain is somewhat being managed because we have cut out all lactose, BUT he is still is not gaining weight (which is not indicative of lactose intolerance) and his stool is still not perfect. My GI (he does not treat my son) advised finding someone to scope him because of where MY ulcers and crohns is and how my disease presented. i have shared all my records with his GI. I just struggle with getting that 2nd opinion and possibly putting him under and doing these procedures when his doctor does not believe we need to and wants to avoid the risk, and wants to label him IBS for now. Im battling putting him through an ordeal/risk when he may not need it, but I just can't shake my own personal knowledge of this disease and the fact that I too would get a positive hydrogen breath test- because of the damage done by Crohns.

So my question is- have any of your children ever had a negative result on the Fecal Calprotectin test or not shown WBC in their stool, etc. and then found out they DID have an IBD disease? Is it a test worth challenging?
Thank you so much. Im very grateful for any advice.
04-06-2015, 05:42 PM   #1048
Crohnick
 
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Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar?
Hi Maudmere. Welcome to the forum. Wish there was different circumstances you had to post here.

My son was diagnosed with Crohn's at 13. Though always on the lower end of growth charts, he tapered and started moving off the chart at 10. Because he showed no external signs of CD, pediatrician wasn't worried until 12 when no change in growth velocity got us a referral to GI. His labs have always been normal. Only biopsy results on scope gave the definite diagnosis of Crohn's.

Not sure what part of Texas you're in but Children's Medical Center in Dallas or Texas Chilldren's in Houston have really good pediatric GI units. See if you can get a second opinion at one of those if your GI is hesitant for scope.

Also, has he been tested for Celiac?

Good Luck! This is a great forum and I have learned a lot from the excellent advice of many parents with a lot more experience with the disease than me.
04-06-2015, 05:49 PM   #1049
Jmrogers4
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I would definitely seek out a second opinion. My son's labs have always been in the normal range except at initial diagnosis but inflammation was running rampant at that time and lots of activity at the TI and in the large intestine.
He was scoped based on that and the fact his father has crohn's and it was immediately apparent we were dealing with Crohn's disease. Fast forward 4 years and dealing with lack of growth and weight gain the entire time we had assumed his disease was under control based on labs. He was given a fecal calprotectin test and it came back elevated but only slightly second FC given a month later was just a little higher then that all other labs still in normal range. He was given an MRE and they found tons of inflammation in the small intestine (not somewhere his father is affected).
Medicine was changed and he finally truly reached remission (gained 40 pounds and grew 7" in a year). His GI last visit thanked me for pushing as he would have just assumed my son was meant to be small but my mommy gut kept saying we were missing something.
Scopes with biopsies seem to be the definitive test and I have heard of several GI's who will not use FC as they don't think they are reliable. Have they only done stool tests? What did blood labs say? ESR levels? CRP levels? Some people just show better with different tests.
04-06-2015, 06:37 PM   #1050
Farmwife
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Hi Im brand new to this forum and so happy to find it. I hope Im posting in the right place. Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar? My child is currently being tested for GI issues and his doctor is putting all future testing in the hands of this test and Im uneasy about relying on one test.
Backstory: I myself was diagnosed with Crohns disease a few months ago at age 34, its been something Ive always dealt with and was labeled IBS/anxiety. It has not always been easy for me, but thankfully so far my flares have been mild-moderate. After several tests and finally seeing a GI who immediately ordered endoscopy/colonoscopy followed by the pill endoscopy- I now had a name for it- and although still in a flare Im having some success with Pentasa and just finished a round of Entocort/Uceris for partial obstructions.
All of my focus however is aimed towards my 7 year old. We have been working with a pediatric GI who is considered one of the best here and I do like him, but Im considering getting a second opinion from a different GI group. My 7 year old has suffered from a few years of off and on- constant diarrhea, horrible abominable pain, losing stool at school/playing/etc. and has gained NO weight in over a year. He has fallen off the growth chart for his age and keeps dropping. What scares me is that his symptoms started exactly as mine did, the exact same age as mine did- as a lactose intolerance in kindergarten. His GI will not test invasively, scope, etc. unless he gets a "green light" from certain tests- something showing inflammation in the stool, especially the Fecal Calprotectin test and my son has received normal results on that. The only non invasive test that came back positive was a strong positive on the hydrogen breath test testing for lactose. At this point his diarrhea and pain is somewhat being managed because we have cut out all lactose, BUT he is still is not gaining weight (which is not indicative of lactose intolerance) and his stool is still not perfect. My GI (he does not treat my son) advised finding someone to scope him because of where MY ulcers and crohns is and how my disease presented. i have shared all my records with his GI. I just struggle with getting that 2nd opinion and possibly putting him under and doing these procedures when his doctor does not believe we need to and wants to avoid the risk, and wants to label him IBS for now. Im battling putting him through an ordeal/risk when he may not need it, but I just can't shake my own personal knowledge of this disease and the fact that I too would get a positive hydrogen breath test- because of the damage done by Crohns.

So my question is- have any of your children ever had a negative result on the Fecal Calprotectin test or not shown WBC in their stool, etc. and then found out they DID have an IBD disease? Is it a test worth challenging?
Thank you so much. Im very grateful for any advice.
I second the second opinion.
My 6 yr old had a long painful road to diagnosis. Everything was coming back normal (and still does) except the scopes. Her first GI called after the first scopes and said sorry he didn't believe me because all the testing was coming back normal. It was me pushing and pushing and pushing that got her scoped.
As to her FC results....ya they elevated a little in an active flare but not out of the normal range. Her highest was 60ish (active flare) and her lowest is under 20 (remission). A lot of people are in the 1000's but not Grace. Also her labs are always good.
What was your daughters?
Keep pushing mom!!!
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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
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