Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » urgent, Need some advice on my younger crohnie


10-13-2017, 06:23 PM   #1
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
urgent, Need some advice on my younger crohnie

Hi all,
I need some advice. About 3 weeks ago my younger daughter with crohn's started complaint of stomach pain. Her doctor did labs and a fecal calprotectin.
He also started her on Budesonide, Metronidazole, and Bentyl for pain.
All her labs came back normal and the fecal call. came back yesterday and was also normal. He had her scheduled tentatively for a colonoscopy but now cancelled it due to all labs being normal.
However she continues to have really bad pain. She said she has constant mild pain and then gets waves of really bad pain. It honest seem to necessarily occur with eating as she has been waking up with the pain.
At times she is crying the pain is so bad.
we have been on the verge of taking her to the hospital several times but every time the doctors have said to try and manage it at home when we call them.
I don't know what to think what this pain could be with everything normal
should I push them to do the scopes or ask for an MRE?
She is on Humira, Zantac, and Mirlax for her maintenance meds.Her BM's are normal for her as she has the constipating type of crowns not the diarrhea type.
__________________

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.
10-13-2017, 06:37 PM   #2
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
I would push for testing despite the normal results - at least scopes and an MRE.

If those show nothing, then I would consider a motility issue - those can cause a LOT of pain.

Sending big hugs .
__________________
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
10-13-2017, 07:55 PM   #3
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Thanks Maya.
I feel the same way. Have to push her doctor who still hasnít called me back. I have a feeling we are heading to the hospital in the next day or so.
She is getting Humira tonight. Then I will see how she feels.
10-14-2017, 11:45 AM   #4
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
 
Join Date: Apr 2013
Location: Quebec

My Support Groups:
is she feeling better today after the shot?
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-14-2017, 12:27 PM   #5
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
∑ NG Tube
Kim, remind me, is she also suspected of having EDS?
__________________
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
10-14-2017, 08:44 PM   #6
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Lady Organic,
She is not feeling any better.
Farmwife,
We have not yet had her checked for it. I suspect she does though.
10-14-2017, 09:52 PM   #7
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
 
Join Date: Apr 2013
Location: Quebec

My Support Groups:
Im really hoping you have the chance to speak with the GI on monday. if no news, I'd go to the hospital as you think about. It happened to me a couple of times I went to the ER because I had different abdominal pains that I had not experienced before and was very worried. ER drs can do an overall check up, sometimes ultrasound and x-rays if they suspect anything as first steps.
10-15-2017, 07:13 AM   #8
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
Outside of checking for IBD causes. I would have her checked for gallbladder issues too...... Best of luck, hope it gets sorted out soon!
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
10-15-2017, 10:41 AM   #9
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
Waves of intense pain and waking up at night - I would be worried about possible blockage
__________________


2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
10-15-2017, 05:10 PM   #10
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
We decided to call the doctor first thing tomorrow morning. We are really trying to avoid the hospital if we can. I will update tomorrow.
10-15-2017, 05:18 PM   #11
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
What was her fecal cal?

The reason I ask is that my daughter's FC tends to be low (for a kiddo with IBD) even when she's flaring. For example, it was 120 a few months ago, but considering her lowest tests have been around 25 when she was doing REALLY well, we knew that there was inflammation.

120 isn't very high at all - in fact, LabCorp's range says it's "borderline" but because our GI knows M's FC can be very low when things are good, she took it seriously and upped M's dose of Cimzia.

I guess what I'm trying to say is that we watch the trend, not necessarily the numbers.

I would definitely call the GI tomorrow. I hope you get a call back quickly.

If she needs scopes though, and it sounds like she does, I would guess that it would be fastest to admit her to have them done ASAP. Otherwise you might have to wait weeks...
10-16-2017, 10:40 AM   #12
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Finally spoke with the GI this morning. Her fecal calprotectin was not detectable. Her lowest prior to this ever was 200.
He thinks she might have some kind of infection going on he is sending a prescription for a new medicine I have never heard of to the pharmacy he said it is like a stronger form of flagyl. He wants her also to increase the Bentyl to four times a day. She is to take this new medicine for three days and if not better we will do an MRE.
10-16-2017, 11:07 AM   #13
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
Glad you have a plan!!! I hope the antibiotic really helps her.
10-16-2017, 03:16 PM   #14
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
UTI infection can cause stomach pain.
__________________
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)
10-16-2017, 09:51 PM   #15
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
I thought about that. Hopefully if it is a UTI this will clear it up. I keep asking her if it hurts when she pees but she says no.
10-17-2017, 06:30 PM   #16
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Got the medicine it is called Allinia. I also am going to ask him to repeat the fecal calprotectin to make sure there was no lab error.
10-24-2017, 07:38 PM   #17
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
How are things going?

I have been there with both girls. My girls show IBD inflammation in fecal cal rather than blood labs so when Fecal cal is normal they suspect other things.

Abdominal issues are the number one cause for visits to the doc. There are sooo many reasons and it is very hard to flesh out the cause and even harder when you have IBD and the symptoms are exactly the same.

For my two we walked away with an IBS dx on top of IBD. Frustrating as they know even less about IBS than they do IBD.

I hope she is finding some relief and that you get some answers soon. I don't think a second FC test is a bad idea. Just to be on the safe side.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
10-28-2017, 10:06 PM   #18
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Forgot to update. We saw the doctor on Wednesday not our regular one but his partner who knows us somewhat.
We are repeating the fecal calprotectin. And we will see what happens.
10-28-2017, 10:32 PM   #19
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Did the new med help ?
Did she get an MRE ?
__________________
DS - -Crohn's -Stelara -mtx-IVIG
10-29-2017, 09:59 PM   #20
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
MLP,
Nothing has helped. No MRE yet. I am going to call tomorrow and insist. I canít take her crying on pain it is breaking my heart.
11-05-2017, 11:10 PM   #21
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
I just wanted to update. We did the repeat fecal calprotectin last week and are awaiting the results. Meanwhile she keeps on complaining about her stomach. I am hoping we get the results tomorrow.
I plan to call tomorrow and demand they do a scope or an MRE or something. It is not fair for her to keep going on like this with this pain.
11-09-2017, 11:28 AM   #22
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Got the results of the fecal calprotectin back, it was still less then 16. So we have an MRE scheduled for tomorrow to see if we can figure out her pain.
11-20-2017, 03:40 PM   #23
Sudsy
Senior Member
 
Sudsy's Avatar
 
Join Date: Aug 2013
Location: Israel
Good luck figuring this out. Hope your little one feels better soon....

Just wanted to comment that UTIs in kids don't usually present with pain on urination--that's an adult symptom. While I think in your case it's more likely a GI issue than a GU one, just wanted to mention this point.
__________________
19 y/o dd dx'ed with Crohn's at age 8.

14 y/o dd dx'ed with Crohn's at age 7

11 y/o dd with Celiac just to keep things interesting around here....
11-20-2017, 06:14 PM   #24
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
Thanks Sudsy,
We actually jut got home from the GI doctor. MRE was normal. We have a lab scrip to check for a UTI.
11-20-2017, 08:08 PM   #25
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Glad the MRE came out clear but ugh on the not knowing. How is she feeling?

Ironically, IRL friend as a daughter who had this mysterious stomach pain. many doctor visits, testing etc and all they could come up with was, "maybe a cyst that burst and you just have to wait for the fluid to dissipate". I'll be darned if after a few weeks she started feeling better.

I know this is your field of expertise and you have no doubt considered it but thought I would mention it just in case.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » urgent, Need some advice on my younger crohnie
Thread Tools


All times are GMT -5. The time now is 01:08 PM.
Copyright 2006-2017 Crohnsforum.com