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Crohn's Disease Forum » Parents of Kids with IBD » To go to the hospital or wait?


 
11-06-2016, 05:49 AM   #1
CarolinAlaska
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To go to the hospital or wait?

Jae has been suffering for weeks, getting worse for the past several days. Evenings are definitely worse. She can't eat or drink without pain. She has a GI appointment on Wednesday. Should I wait or bring her to ER? She has lost at least 5 lbs.
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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.
11-06-2016, 06:40 AM   #2
ronroush7
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I would say to take her to the ER. Support and prayers.
11-06-2016, 07:54 AM   #3
my little penguin
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Have you called her gi?
I would call the on call gi now and explain the situation.
They can advise to go to the ER

Is she still eating and drinking some?
Have they done labs recently?
Is the pain suddenly worse ?
Is her gi aware of the pain and weight loss?

If your asking on here then you should go to the ER
Just informing her docs might make the ER visit easier .
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11-06-2016, 08:17 AM   #4
CarolinAlaska
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Have you called her gi?
I would call the on call gi now and explain the situation.
They can advise to go to the ER

Is she still eating and drinking some?
Have they done labs recently?
Is the pain suddenly worse ?
Is her gi aware of the pain and weight loss?

If your asking on here then you should go to the ER
Just informing her docs might make the ER visit easier .
She is eating and drinking very little. Labs one week ago were normal and she was hurting then. I haven't called her GI because it really got out of control since Friday night. She slept good Friday night and slept in until 10:30, but wouldn't eat all day. Her pain returned in the evening after trying to eat baby rice cereal - only ate a small amount. I think she had 1/2 glass of water all day. She is taking small sips.

I'll call the GI on call. We live 3 hours from the hospital.
11-06-2016, 08:42 AM   #5
Optimistic
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I'm sorry. Please do call and let us know how it goes. I know 6 hours is an awful car ride for someone so sick but at hospital she would be seen by different disciplines right away.
11-06-2016, 09:28 AM   #6
pdx
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I agree that you should call the on-call GI. I'm thinking that they'll want you to go into the ER to at least get Jae rehydrated, but hopefully also to do some more testing to help you figure out what's going on. Hope you get some answers soon.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
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11-06-2016, 10:55 AM   #7
Maya142
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I agree, definitely call. It sounds like she at least needs IV fluids and to be evaluated.

Poor J - sending hugs!
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dx with JIA at 14
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11-06-2016, 11:25 AM   #8
my little penguin
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Let us know what doc says
Agree she probably needs an iv at the least
11-06-2016, 01:00 PM   #9
If*
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Hi, with being a distance or being in some rural areas it can add more pressure to 'when' but the easiest i have found if you are questioning should i go, then often it is a yes. (Us older people do this at times too)
Dehydration can be serious, should be addressed. Not being able to eat also pretty concerning. Seems to be easier to loose weight at times and tougher to gain it back. New, and continuing pain should be addressed.

Labs are a good indication for that time, situations can change with this without much notice. Being seen can be so helpful. Even if it ends up to be an all OK, at least your due diligence is followed through.

My thoughts and prayers to you and yours,
Be well, God bless
11-06-2016, 01:11 PM   #10
xmdmom
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Sometimes a person who lives far from their doctor/hospital can go to a more local hospital for rehydration, exam and labs. Your doctor can tell you if that scenario makes sense and if it does, your doctor should call the local ER and tell them what to check and ask to be called with the results. This can sometimes save a long trip but other times you'll need to be admitted or have more specialized tests at the far away hospital anyway. Also some small local hospitals are really useless. So it depends but this is something I'd discuss with your daughter's doctor for future reference when you see him/her .
11-06-2016, 01:48 PM   #11
kimmidwife
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Sounds like she needs to go in and be seen. I don't think you should wait.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
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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.
11-06-2016, 08:45 PM   #12
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Please take her to the ER, even a closer one. She needs IVs for fluids, and very possibly some other medication - I was in the same condition Thursday night, and I asked my mom to take me to the hospital on Friday.

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11-07-2016, 03:12 AM   #13
pdx
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How's she doing? Better, I hope.
11-07-2016, 10:39 AM   #14
Farmwife
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Sorry late to this but I'm also wondering how she's doing?
Grace had been in the same boat this year.
She received IV solution and was much better.
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Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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11-10-2016, 02:21 PM   #15
CarolinAlaska
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Jae showed good improvement Sunday through yesterday so we waited to see the GI. Today she is not so good. Typical. She will have another MRI soon and fecal calprotectin. She is going to try to get the geneticist to get Jae in to see if she has Ehlers Dan Los. She said the on call GI didn't mention that we called. 😔
11-10-2016, 02:23 PM   #16
ronroush7
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Hope she is better soon

11-14-2016, 01:52 PM   #17
Optimistic
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Any news?
11-17-2016, 09:16 PM   #18
CarolinAlaska
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Jae had her MRI on Monday. It is showing rectal inflammation. They want to start her on Asacol suppositories at bedtime. I see that it can be made more toxic with Aza. Isn't 6MP similar to that? She is currently on her monthly, which has stirred everything up and she's in a lot of pain. To make matters worse, she is also doing an indefinite video EEG until she has two seizures. .
11-17-2016, 09:20 PM   #19
Maya142
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Many doctors combine 5-ASA's with Imuran on 6MP. We were told it does increase the level of Imuran in the blood (or something like that) but it doesn't usually cause problems. I'm sure they will monitor her carefully.

Sorry to hear she is not doing well . Poor Jae.
11-17-2016, 09:34 PM   #20
my little penguin
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Ds was on asacol HD with basically every med
All of them have warnings when you combine them
Never had any real issues except 6-mp by itself
Rectal inflammation is very hard to treat and get under control
It takes a while to heal

Video EEG are the worst ---big hugs to you and her
11-17-2016, 10:01 PM   #21
CarolinAlaska
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She's been having rectal symptoms for months now but the doctor didn't "see" anything on external exam other than a little excoriation. She said Jae is wiping too hard, but that isn't the case. I feel finally they are seeing something and at least are trying something.
11-20-2016, 05:20 PM   #22
kimmidwife
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Caitlyn is having similar issues. It is the first time she has ever had involvement in that area. She is on Canasa suppositories. I think they helped a little.
11-23-2016, 10:16 PM   #23
CarolinAlaska
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Caitlyn is having similar issues. It is the first time she has ever had involvement in that area. She is on Canasa suppositories. I think they helped a little.
Jaedyn's medicine ended up being Canasa suppositories too. So far she has just had two nights. How long does it take to see improvement?
11-23-2016, 10:40 PM   #24
CarolinAlaska
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Duplicate post.
11-23-2016, 10:47 PM   #25
Maya142
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How's J doing so far?

My daughter was on cortisone suppositories for a fissure earlier this year. They really helped within a few days. But I would guess steroids work fast, and Canasa might take a bit longer.
11-23-2016, 10:51 PM   #26
my little penguin
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DS had Canasa suppositories
They took a while to work
A few weeks or longer at least but he had rectal prolapse which inflamed the rectum and the end of the sigmoid
11-23-2016, 10:53 PM   #27
CarolinAlaska
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How's J doing so far?

My daughter was on cortisone suppositories for a fissure earlier this year. They really helped within a few days. But I would guess steroids work fast, and Canasa might take a bit longer.
She said it might have helped a little the first night but not really the second night.
11-26-2016, 08:35 AM   #28
crohnsinct
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O recently had a rectal/sigmoid flare. She was given proctofoam and it worked fast to stop the bleeding however, she continued to have urgent diarrhea and accidents. After about two-three weeks the GI said o.k. to stop the foam and that the foam was probably the cause of the loose stool and accidents. O thought he was crazy but lo and behold, that all cleared up when she stopped the foam.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
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Vit d 2000IU
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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)
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Entocort
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Calcium
Folic Acid
Previously used: Mtx injections
11-28-2016, 11:20 PM   #29
CarolinAlaska
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It really hasn't helped after a week of using it. I'm waiting now to see what the doc wants her to do....
11-28-2016, 11:21 PM   #30
Maya142
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Has J had scopes recently? Maybe it's time for a med change?
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