Aching all over, even painful to touch skin!!??

[Niks]

Hi

Is it normal for someone with crohn's to ache all over, all her joints are painful. Even her skin hurts to touch!!

My daughter has only just come out of hospital and very quickly going down hill again! (she is 18)

Someone has suggested that she may have Gastroparesis, this is something I haven't heard of, but looking it up it looks very possible!! Her barium meal test stuck in her stomach, until she vomited it up. Ending up in a real state and in emergency (apparently the remaining barium had solidified in her stomach). She can go upto 14 days without a BM, and gets so backed up that can vomit everything that she tries to eat.

Nikkie

 

[kimmidwife]

Hi Nikkie,
No real advice but wanted to say thinking of you guys. I have heard a little about gastroparesis but am not that familiar with it.

 

[Farmwife]

My Grace is also on the backed up side and has joint pains but she's on NO meds except Zantak.
My GP also has brought up Gastroparesis with Grace but until they do more we wont know.
I don't know enough about the other things so let the other parents answer. I hope she starts feeling better soon.:hug:

 

[Crohn's Mom]

Hi Niks

I'm so sorry your daughter is having such a hard time :kiss:

I have been diagnosed with Gastroparesis and it's really no fun at all. However, a few months back Gab, my daughter, started complaining of not being able to eat much ~ only a few bites and than shes full and nauseous.
Bingo ! First thing I thought was, OH NO, not this too for her !
So the next time we were at her GI's office we mentioned this new symptom to them. They didn't "test" her for it, but said that since we know that her Crohn's is located in her ileum ( in her case at the site of resection), then sometimes, depending on disease location, one can get the symptoms of Gastroparesis, without actually having it. When the inflammation gets under control, then usually those symptoms do as well.

Is this where your daughters disease is at its worst currently ?
And, if you don't mind saying, what was she recently hospitalized for ?

I'm so sorry she's in so much pain to the touch. Gab has experienced this, as well as I, but I still don't really know what causes it

hang in there hun ! :hug:

 

[my little penguin]

:hug:
SAme here for DS things were in slow motion until he got under control

 

[Niks]

Hi guys

She was hospitilised for dehydration, not being able to keep anything down and pain. Her crohn's is in her large bowel, and we have had several inconclusive tests for other areas!!!

It is so frustrating as the camera test going down her throat showed 'no active crohn's' biopsies have been taken, but there clearly is a problem this end too!!!

Hope you are all getting better! Jaime was only diagnosed a few weeks ago, but has been in hospital three times for a week each time out of the last 7..

Niks

 

[Patricia56]

Hi Niks,

I'm sorry to hear that things are so bad for your daughter. She must be really miserable. Maybe you can answer a couple questions for me.

What meds is she on?

Does she have swelling to go with the pain?

Does anything make it better?

Has she told her doctor about it? What did he/she say?

 

[Sascot]

So sorry to hear about your daughter, it must be very distressing to watch her like this. Is she on any meds? Sounds like they really need to bring out the strong meds to try get her feeling better quick. Is she on some sort of stool softener - my daughter takes a couple sachets Movicol every day and her constipation isn't that bad. I hope they manage to get your daughter's symptoms under control soon!

 

[Jennifer]

If it helps Niks, I had flu like symptoms during flares all the time and one of the main symptoms was body aches. I just ached all over, even the skin was painful to the touch. It may be dehydration related so hopefully the fluids help her with the body aches while they get some proper treatment going so she can start feeling better.

Try to look into and talk to her doctors about Enteral nutrition and TPN.

 

[Jmrogers4]

Sorry your daughter is in so much pain Niks, hopefully she is feeling better soon. Not much advice to offer just support

 

[Tesscorm]

So sorry to hear your daughter is dealing with so much right now!

I wish I had some advice for you. EN or TPN can both provide her with bowel rest and nutrition, as well EN has some anti-inflammatory, has success at inducing remission and, I believe, can be used longer term than TPN (but not completely sure about this...) but, I'm not sure if there would be any issues with EN and Gastroparesis.

I hope you're able to get some answers for her soon!! :ghug:

 

[DustyKat]

Hey Niks,

I am so very sorry to hear about all your daughter is going through, bless her...:hug:

You have received fab advice hun. As you can see there may a few explanations as to your daughter's symptoms and I hope more than anything they are soon able to narrow it to a definitive one. Just one other that I would throw into the mix for them rule out and that would be fibromyalgia.

Dusty. xxx