One very sick girl :(

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Niks

Niks

Joined
Nov 18, 2012
Messages
1,431
Getting very worried about J.

She is refusing to see a doctor or go to the hospital because 'no one thinks there is anything wrong with me'!

Everytime she is admitted they have come up with nothing, except coeliacs. (Gluten free diet not helping!)

She now looks grey. Her lips are white. She has pins and needles and shooting pains everywhere. She is loosing weight, vomiting (some blood in vomit). Very few BM's but if she does is very runny, mucussy and bloody.

She fainted yesterday, but is refusing to go to her doctor. She has had recent bloods taken for B12, creat + electrolytes, liverfunction, folate and crp. We haven't had any results back yet, but they normally come back pretty normal :yfrown:

I have called IBD nurse today and left a message, just hope something comes back in her bloods!!
 
sounds a lot like i was many,many years ago. I got brill old hat doc in the end and he sorted everything aside from a cure for crohns. I get sickness, diarrhoea, and nausea to fainting point, can't put on weight. i hope you get results soon.

best wishes
 
I'm so sorry to hear this. I know how frustrated you must feel and sometimes doctors think everything is fine when it isnt. My son goes through the same thing. Has issues and his dr. says his labwork is fine. Hope you can get her to go to the doctor. Sounds like something is definately going on. Hope you get answers soon. :)
 
Feel for ya. Grace same thing. Labs looked good she's fine. NOT TRUE!

I hope she will get some help soon. All it takes is ONE doc to listen and do something.
I pray she'll find that doc soon.

HUGS
 
I don't want to scare you. But my mom looked grey once and her lips were white. I told her she had two choices.. go to the hosp, or I would call an ambulance and take her to the hosp. She agreed to go. When we got there, she passed out. They got her on a gurney and took care of her right away. She had a bleeding ulcer and didn't tell anyone she was pooping blood. She needed NINE bags of blood. They told us we were within minutes of losing her. How old is your daughter? Can you force her to go?
I'm so sorry she is feeling so bad, and your hands are tied :( I hope her nurse calls soon.
 
She's 19. She had her bloods taken yesterday, so I guess if she is losing a lot they will contact us quickly!! Or at least I hope so. I will keep trying the nurse tomorrow.. Hopefully she can talk her into being seen.
 
Agree with everyone. She needs to be seen by a Dr. My turns gray when his crohn's is flared very badly. Even if Ryan were 19, I would drag him kicking and screaming if he was gray again. The bloodwork doesn't always tell the whole story.
 
She has promised me she will go in the morning! She has taken herself to bed. Thanks for all your advice xx
 
Yes, please keep us posted!!! I hope they take a good look at her tomorrow and find some answers!! :ghug:
 
Does she live with you? If not, can you stay with her?

So sorry this is happening. So sorry they have to grow up and have minds of their own.
 
I hope she gets to see the right doctor and that they look in the right place at the right time to find out what is wrong.
 
So far IV fluids and antisickness. B12 initially not tested from earlier in week because it is less than 100 days since last test! (96 days) grrrr. They have finally done it and is 126 which is pretty low so starting on B12 injections immediately.

Her BP on the low side even for her 78-92/48-55. Probably not helping with the dizzziness! All other bloods normal!

She had biopsies with enoscopy 2 weeks ago which haven't come back!! They want to keep her for obs overnight but she's fighting it! She's looking a little better, maybe IV fluids.

They are still reducing pred, she will be totally off them in 2 weeks.
 
I'm glad she went in. I hope they figure out whats going on and she's feeling better soon.
Thats weird about the blood. I donate blood every 60 days. They do a finger prick to see if your blood is low. The cut off is 125 and I am ALWAYS 126
 
The B12 normal levels are between 200 an 900. Her last test was 'borderline' but only 143 snd with other things going on should have triggered warning signs!! This last test was lower. But at least they've started B12 injections. Should help a little with fatigue and the pins and needles x
 
Oh ok, I guess the finger prick I get is something else. I know the pass is 125.
I hope the B12 inj start working fast. My son gets B12 once a month. I haven't really noticed any improvement in him. He is ALWAYS tired. But being 18, he won't listen to me and go back to the dr.
 
Have they done MRI to look at the small bowel. Low b12 suggests a problem with small bowel.

Hopefully she will feel better soon.
 
Danny feels the same way about going to doctors ... after not getting any effective help for so long ... and going through invasive tests, he's had enough. I am so glad she agreed to go in .... I just wish they could dx and treat her more.
 
I am so glad she went in! I hope she is feeling better soon. I second the small bowel check. B12 is absorbed there. Maybe she has a hidden issue going on!

Hugs!!
 
Niks said:
Getting very worried about J.

She is refusing to see a doctor or go to the hospital because 'no one thinks there is anything wrong with me'!

Everytime she is admitted they have come up with nothing, except coeliacs. (Gluten free diet not helping!)

She now looks grey. Her lips are white. She has pins and needles and shooting pains everywhere. She is loosing weight, vomiting (some blood in vomit). Very few BM's but if she does is very runny, mucussy and bloody.

She fainted yesterday, but is refusing to go to her doctor. She has had recent bloods taken for B12, creat + electrolytes, liverfunction, folate and crp. We haven't had any results back yet, but they normally come back pretty normal :yfrown:

I have called IBD nurse today and left a message, just hope something comes back in her bloods!!
Click to expand...
I hope you will consider going to a different Dr. Doesn't sound good. I would actually go to ER. Whether she likes it or not.
 
Niks said:
So far IV fluids and antisickness. B12 initially not tested from earlier in week because it is less than 100 days since last test! (96 days) grrrr. They have finally done it and is 126 which is pretty low so starting on B12 injections immediately.

Her BP on the low side even for her 78-92/48-55. Probably not helping with the dizzziness! All other bloods normal!

She had biopsies with enoscopy 2 weeks ago which haven't come back!! They want to keep her for obs overnight but she's fighting it! She's looking a little better, maybe IV fluids.

They are still reducing pred, she will be totally off them in 2 weeks.
Click to expand...

Did she stay overnight? She seems like a very sick girl from what you described. How is she doing now?
 
Hi, yes they've kept her in, she is NOT happy!! Especially as they never really do much over the weekend. She looks a little better, I think just rehydrating really helps! Vomiting so much is bound to affect her hydration.

Just really hoping the B12 jabs help with the pins and needles and her dizziness.

Thanks for all your advice and concern!

This forum is fabulous for feeling supported and getting ideas about what could be the problem... Thanks guys xx
 
Hugs to you and your dear daughter. Perhaps she needs a new game or friend to come visit to help cheer her up :(
 
Glad they kept her. Even though they don't do much over the weekend, it will force her to sit still, get some fluids and rest. I hope she is doing better soon!
 
Thanks for the update Niks. :hug:

I too am glad that they have kept her in. :) I hope she able to get some much needed rest and relief, bless her. :heart: And next week brings some solid answers and lasting relief!

Dusty. xxx
 
Hospital wants to keep her until tomorrow to give secong B12 jab, I think she can come home then and continue at our surgery.

Her clinic appointment is 21st Feb, her GI doctor wants to wait until the biopsies are back from her last endoscopy.

Hopefully for her she can come home after her jab tomorrow!!
 
Thank you for the update! I'm glad she went in and is getting B12 and IV. That alone will prob make her feel a lot better.
 
Niks said:
Hospital wants to keep her until tomorrow to give secong B12 jab, I think she can come home then and continue at our surgery.

Her clinic appointment is 21st Feb, her GI doctor wants to wait until the biopsies are back from her last endoscopy.

Hopefully for her she can come home after her jab tomorrow!!
Click to expand...

I hope she can come home with renewed energy and life tomorrow.
 
sO VERY HAPPY SHE IS DOING SO MUCH BETTER AND STARTING TO FEEL LIKE HER OLD SELF AGAIN.Sorry, caps locked! Let us know later how she makes out.:rosette1:
 
Hope your girl is doing still doing well Niks and she is still on target for discharge today! :)

Sending loads and loads and loads of luck and well wishes your way!
Dusty. xxx
 
She's home! Has a clinic appointment in 3 weeks time so hopefully can stay out of hospital unil then!
 
She still has pins and needles, and being sick, but feeling and looking a little better. Hopefully the jabs will work quickly!
 
CarolinAlaska said:
Pins and needles can be neuropathy or circulation issues, in this case I think they think maybe vitamin B deficiency causing a neuropathy...
Click to expand...


This is what they are going with! Her B12 levels are low. Hopefully she'll feel better soon
 
Hmm is always one thing after another, dark red recta bleeding and pea size dark red blood clots in vomit :/ but hey, pins and needles seem much better!

Am going to get her to take pics, for GI, of bleeding and clots as it is easier to understand if you can see it! It used to scare her, but she's so used to it now she just shows me matter of factly!! :/
 
Last edited:
Niks said:
Hmm is always one thing after another, dark red recta bleeding and pea size dark red blood clots in vomit :/ but hey, pins and needles seem much better!

Am going to get her to take pics of bleeding and clots as it is easier to understand if you can see it! It used to scare her, but she's so used to it now she just shows me matter of factly!! :/
Click to expand...

Poor girl, I'm so sorry she isn't doing better than that after her weekend in hospital... When does she see her GI?
 
21st, she has to have two more weeks of 3 times a week B12, which will hopefully help her feel better, then monthly. She will be weaned right off pred by 21st too. If we don't get any answers then or plans for tests to see her small bowel I will be getting a second opinion. This is not just coeliacs, she wouldn't be getting worse whilst gluten free!!!
 
Sounds like she has far more than celliacs and vitamin b12 deficiency. I hope you can convince her, and her physician(s) to have the appropriate tests run and get her on a treatment plan.

I wish you both all the best!
 
Hoping for much better news soon! My gosh, she is going thru it!Hope after Dr.'s appt. and they see pictures they can better help her. Let us know what they say.:heart:
 
Niks said:
21st, she has to have two more weeks of 3 times a week B12, which will hopefully help her feel better, then monthly. She will be weaned right off pred by 21st too. If we don't get any answers then or plans for tests to see her small bowel I will be getting a second opinion. This is not just coeliacs, she wouldn't be getting worse whilst gluten free!!!
Click to expand...

That is a real bummer she is so sick while on prednisone. She should be doing well now not having all these symptoms.
 
Hi Carolin.

She's been on Pred since early November any dose between 20 and 40mg but as soon as she goes lower she goes downhill. Her GI wants her to come right off so he can see what is going on with her so she is dropping by one every two weeks. She is down to 10mg, next week down to 5!! Just hope she doesn't get much worse before her appoint!!
 
Niks said:
Hi Carolin.

She's been on Pred since early November any dose between 20 and 40mg but as soon as she goes lower she goes downhill. Her GI wants her to come right off so he can see what is going on with her so she is dropping by one every two weeks. She is down to 10mg, next week down to 5!! Just hope she doesn't get much worse before her appoint!!
Click to expand...

Me too, but I certainly don't think it is a good long-term solution :(. I hope you find answers very quickly.
 
No she can't stay on Pred long term, just wish they'd work out something that will work for her
 
Lets just hope at this next appt. something positive will happen and they will find out what is really going on in there!:thumright:
 
Niks,
Sending hugs to you guys. How is she doing? Did you take the pictures? Can you maybe email them to the doctor ?
 
Yes she has pictures although they aren't great. Have told her to take them everytime that happens! Hopefully we will get somewhere. I don't have an email for our doctor.. She is going in every other day to GP to get her B12 jabs, will get her to see GP at the same time and show him.

At least we have an appointment for GI 3 weeks time.
 

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