• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

To go to the hospital or wait?

CarolinAlaska

CarolinAlaska

Holding It Together
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.
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
CarolinAlaska

CarolinAlaska

Holding It Together
my little penguin said:
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 .
Click to expand...
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.
 
Optimistic

Optimistic

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.
 
pdx

pdx

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.
 
Maya142

Maya142

Moderator
Staff member
I agree, definitely call. It sounds like she at least needs IV fluids and to be evaluated.

Poor J - sending hugs!
 
I

If*

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
 
X

xmdmom

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 .
 
Aydmen

Aydmen

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.
 
Farmwife

Farmwife

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.
 
CarolinAlaska

CarolinAlaska

Holding It Together
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. 😔
 
CarolinAlaska

CarolinAlaska

Holding It Together
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. :(.
 
Maya142

Maya142

Moderator
Staff member
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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
CarolinAlaska

CarolinAlaska

Holding It Together
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.
 
kimmidwife

kimmidwife

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.
 
CarolinAlaska

CarolinAlaska

Holding It Together
kimmidwife said:
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.
Click to expand...
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?
 
Maya142

Maya142

Moderator
Staff member
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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
CarolinAlaska

CarolinAlaska

Holding It Together
Maya142 said:
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.
Click to expand...
She said it might have helped a little the first night but not really the second night.
 
C

crohnsinct

Well-known member
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.
 
Maya142

Maya142

Moderator
Staff member
Sending hugs - it really sounds like J needed a med change last year when she ended up in the hospital!

If she's going to do a sigmoidoscopy, I'd press for a colonoscopy so she can at least look properly and not have to put J under again.

I'll keep my fingers crossed for J. She deserves a break!
 
C

crohnsinct

Well-known member
I get the sigmoidoscopy given it seems the activity is lower down but it is a limited view and since the med isn't working to control things there is a very real possibility that there is inflammation further up. I would ask to cut to the chase and get a full scope.

Sometimes it is just faster and easier (on the doctor's side) to do the sigmoidoscopy so maybe that is what the doc is thinking?
 
my little penguin

my little penguin

Moderator
Staff member
Also realize the rectal area is extremely slow to heal
Think months not days
At least with Ds
Even on remicade it was the last area to heal
And now is the first area to show signs of trouble

Agree full colonscopy
No point wasting anesthesia and then wondering what else had issues

Most rectal inflammation does not show in blood work or fecal cal btw
Ymmv
 
C

crohnsinct

Well-known member
Yep! Plus what I learned today is it can flare totally independent of disease activity anywhere else. Will be posting to O's thread later but she recently had a sigmoid/rectal flare that made me very concerned the disease was going to break loose but nope...just stayed in that area, rectal steroids and she straightened up. Apparently her rectum was inflamed at her last scopes almost two years ago...GI never told me but that is how long it took to actually cause any trouble.

If the rectal steroids fix things then great but if they don't I would definitely want someone looking higher up. Haha, guess I have made my position pretty clear on this one.
 
Tesscorm

Tesscorm

Moderator
Staff member
I agree with pushing for a colonoscopy. Doesn't make sense to not get a full picture of what's going on!

In any case, I would continue following up (I'm sure you're doing this already) - I've found that doctors can 'mention' doing a procedure and if it's not booked immediately, it can fall aside... If I don't hear from the office in a week or two, I've called and followed up; it's happened to me/S that the orders/'mention' didn't make it from our apptmt to the secretary.

Poor Jae, she's been struggling for a long time - I do hope you're on the path to finding some answers for her. :ghug:
 
kimmidwife

kimmidwife

I have to agree with everyone else. I asked our doctor once about sigmoidoscopy vs colonoscopy and he basically said it is not a worthwhile test for kids with Crohn's disease. Please push for a full scope.
 
polly13

polly13

Location
Tipperary, Ireland
So sorry to hear Jae is feeling unwell, I agree with the others to push for full scope. The rectal area is really slow to heal, Lucy was on humira a couple of months before she saw any significant improvement, so could be that the meds havnt worked yet? Hugs
 
You must log in or register to reply here.
Top