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aw niks ive just been reading through what a rubbish time uve both been having . i do hope he docs look into why she keeps being sick and not holding down food keep plugging on hunny sending al my love to u both xx
 
They want to send her home and see her in clinic on 21st!

Clearly it is absolutely fine not to be able to eat and hold it down!

:mad:

Have called IBD nurse, waiting for a call back.

At least we can go together to GP tomorrow morning, and ask him to refer her to Oxford.

Has anyone had any experience of contacting their local MP?? Wondering whether this may help too?

Poor girl, she is so thin :pale:
 
id contact the the person who deals with the ward ur on i cant for he life of me think of the name and say ur unhappy and ask the nurses who it is who you make a formal complaint to u van contact the primary care trust but your hospital will have a policy . have u asked he doctr why he thinks its acceptable for her to go home when she is being sick still . its disgracful hun. id kick of so much i wish i was closer i ceel like coming and suppoeting u to make um listen . i once refused to leave the hosital as lewis was on ivs antibiotics and i said if you dont laybopen his fistula and rwmive the dead infected tissue its going to keep coming back ut had done 6 times last year already i told him we had made a complaint about his care . 15 mins later lewis surgeon turned up amd siad he hadnt even known we were in and he did need it doing this was the first he.d heard of it . make um listen hun . big hugs .xx
 
Hi all

Jaime is home, she has managed all day without being sick which is the first time in probably 4+ weeks. The Pred is clearly starting to work.

We are going tomorrow to see our GP together to see if he will refer her to another GI.

I have even e-mailed a private hospital near us to ask about the pill cam procedure and how much it would cost. Only to find out that it is the SAME GI! ooops
 
I really hope you continue to see improvement!!! Good luck at the apptmt tomorrow - I certainly hope he is supportive of getting a second opinion! :ghug:

Only to find out that it is the SAME GI! ooops
Click to expand...
Had a similar thing happen this week... seems that we CAN'T get a second opinion :ymad: but a friend said she would get info from her friend about her son's GI (for a second opinion) - apparently great doctor put her son on some great med... oops, same doctor, same med as Stephen! :ybatty:
 
Can't believe they sent her home! It's good she managed not to be sick for a while though, hope the Pred is helping her turn a corner. Keep trying for that second opinion!!
 
We absolutely will be going tomorrow to get her urgently referred. She is soooo thin. Looks dreadful. Walking like someone in their 80's as everything hurts. She is literally fading away infront of my very eyes and it is heartbreaking to see :cry:

The things that urgently need looking at are her motility issues, her ability to keep food down (when not on Pred) and absorb and nutrients. Her small bowel.. I also want a second opinion on her coeliacs diagnosis and definately the refractory coeliacs concerns.

Thanks everyone for your support! This is what J looked like only a few years ago at her Prom. She was about 2 stone heavier and full of life!!!
 

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She's absolutely stunning!!! She just needs to get on the appropriate treatment and you'll soon have your gorgeous vibrant girl back! :ghug:

Just a suggestion... Take this picture (or another from the same time) to the GP tmrw and ask him if the difference he sees doesn't warrant a change in treatment and/or GI!

Sending lots of hugs and wishes that tmrw goes welll!
 
Niks what weight is your girl and how tall is she.

Make sure the gp records her weight. Take that picture with you to remind him what she looked like go a few short weeks ago.

It really hard watching the weight fall of our kids and no knowing when it will stop.

Sarah lost 12 kgs in two months prior to dx, we were told if it did stop they would put her in hospital and feed with a tube. Maybe this need to be considered for your girl.
 
She has gone down to 7stone 5, which is 47.7kg.

Her height is 5'5/6" (167 ish cm)

Back in September she weighed 9stone 6/7 almost 60kg

It is a great idea to take a picture though, thanks for that!
 
I know that she will start to gain a little now back on Pred, but the plan from her GI is to see him in clinic on 21st Feb and then start reducing again!!

We have done this so many times and EVERY single time she ends back up in hospital. This time she does seem much weaker though :eek2:
 
Your daughter is gorgeous, Niks. I hope the GP can give you a referral to another GI and you can get a clear diagnosis and treatment real soon. I've been following your thread and sending prayers that things would improve for Jaime.
 
hey hun what about u taking her to a different a n e department at a different hospital altogether. i no she feeling a bit better but her weight is obviously an issue . justbsay u were visiting friends in the aream worth a try or if she starts being sick again . and if the preds working wouldnt that mean that its crohns not celiac thats flaring bloody docters make me so mad sometimes . hope your both feeling a but better today . and your daughter ia stunning she will get back to being healthy again justbtry and be positive i no its hard when u dont think anyones listening .xx
 
My concern is about the pillcam. She can't really do that if she if vomiting up food. If she still has an obstruction or strictures, the camera would get stuck, wouldn't it? How about an MRE?

What kind of diet is she doing now? How about EN?

Keep us updated!

:heart: Carol
 
What a lovely picture!! That was a good idea to take a picture with to the docs. I don't understand how he can reduce pred again when there is no maintenance med to help once it's gone - he really doesn't sound very good!!
Is there any chance they could give her an NG tube for a few weeks, so that she could get some sort of liquid nutrition straight into her stomach - even if it's just a little at a time. She really does need some sort of supplement if she cannot eat/drink. Ask the GP or IBD nurse for an urgent referral to a dietician. Good luck - hope someone listens to you soon!
 
She is diluting the juice ensures at the moment and eating a little solid food. Clear fluids are staying down now. The milky ensure drinks come straight back up again!

I think that her ability to eat and drink will start to improve while she is on the higher dose of Pred.

We have appointment with her GP this morning, who is normally great and will listen, so will go through the motivity problems, her obstructions and the fact that we are going round and round in circles with the treatment she is getting right now.

I am pretty confident that he will refer her to another Hospital, it is time the time scale.. I just hope it doesn't take too long.

Carol I think that you are right and the pillcam may not go through her, would she have to drink a contrast dye with the MRE? Just recalling the awful time she had with the barium meal... Was horrific.

:tear:
 
Our experience was that of needing dietician involvement. DS was sent home from local hospital 3 times each time after they saw him drink a little milk and a small mouse sized portion of a piece of toast. Discharge letter say he was 'eating and drinking'. After third discharge dietician phoned me at home and asked what he had eaten for last 48 hours (only 19 of those hours being at home rest in hospital) when I said no food and very little water she said she would sort it. She phoned back within 10 mins and had told consultant he was coming back in and being ng tube fed. She was so cross with dr's.

Niks has your daughter seen a dietician? Even if it was a while ago and you have a name I would put a call in and explain situation.

Best of luck. Xxx
 
Thanks Ands

Jaime is starting to tolerate food and drink now. This is only because of the steroids.

We have just got back from the GP who was just as confused looking through her notes to the coeliacs diagnosis. He also thought (although he said he'd need to research some more) that if she had refractory coeliacs that it WOULD show on scope tests, not just biopsies. He agrees that she needs a second opinion and is writing an urgent referral letter!

:D:dance::mario2::yoshijumpjoy::luigi::applause:

I am just so relieved that he didn't think I was a paranoid mother!!!!!
 
That great news!!!!!! I'm so glad he agreed with you!!!!! :applause: Hope the referal happens quickly!
 
Yippee!!! Nice to be taken seriously. Of course NHS urgent is not the same as our idea of urgent, but hopefully they will take it seriously!
 
Yay!!! So glad things are moving forward and she is eating and drinking a little even if it is only due to pred.
 
Niks said:
Carol I think that you are right and the pillcam may not go through her, would she have to drink a contrast dye with the MRE? Just recalling the awful time she had with the barium meal... Was horrific.

:tear:
Click to expand...

Yes on the contrast. That wouldnt work either, would it...
 
Wonderful news! I hope it happens quickly and she gets matched with the perfect doc for her needs!:soledance:
 
I am so happy thr GP is writing you for another opinion! Hope all goes well. Glad the pred is offering some relief right now.
 
Does anyone know what could cause a raised bright red rash? J woke up this morning with a rash all over her face and chest. She is mortified!

Alergy to one of her meds??

Prednisolone 30mg (normally works a treat but doesn't seem to be working this time)
hyoscine-n-butylbromide
Docusate Sodium
Ondansetron
Omeprazole
Sennoside
Calceos
Lactulose
Tramadol
Domperidone

Just finished B12 loading dose

She hasn't managed to hold down a meal today... Hurts all over, no BM.. Not a happy bunny :pale:
 
Could be any drug but pred should have calmed it if she was. Having a rxn.
Have they looked at lupus ?
Can you call the on call doc ?
 
No one has mentioned lupus!

Have sent her to bed, but if no better tomorrow will call oncall Doc. She has been in hospital more than out recently and is not keen on the idea. She wants to wait until Monday and call her IBD nurses.
 
Agree need to call doctor. A dermatologist can help determine the cause. I get raised red bump rash on my chest for medication allergies (I have several allergies).
 
Don't blame the poor girl for not wanting to see the docs. Probably worth just keeping an eye on her. If she was up to it you could always pop into a pharmacy and ask them to take a look.
 
Today is the first day for weeks, that J has woken up not in agony! :dance::dance::dance: She is STARVING!! Not holding everything down, but much better. Her weekend was awful and she felt and looked really poorly, it is such a relief to see her look a little happier and wanting to eat!

Hopefully her weight will come up a little, she is now down to 7stone (44 kg)

I think it has taken longer this time for the Pred to start working. Rash has settled but she has bad acne on her face, which isn't usual for her.

Hey but fingers crossed she is on the way up at least until next Pred taper.

:highfive::highfive::highfive::highfive::highfive:
 
Look into perioral dermitis
Can cause a rash on the face due to oral or topical steroid use.
DS has it even though he is no longer on steriods .
 
Hi Niks,
Sorry I have not posted in a bit but I have been looking in to see how your daughter has been. I have been crazy busy and feel like I have not had a minute to breathe. Anyway. I am glad your daughter has been improving. I am so hoping that second opinion comes through fast. I will keep checking in for updates and just know I am thinking of you guys!
 
Ahhhh, didn't last long. Her abdo pain is back. She is still vomiting a lot of her food.

Really hope new GI appointment comes soon. We have kept her other appointment on 21st, as I really thnk she needs to be seen by someone!

Does anyone think her Pred needs upping? She is better than before she was on it but certainly no where near better!

:frown:
 
I would call the GI or whomever prescribed the Pred and let them know it isn't doing it's job yet and see if they want to up it.

How much is she on? (Is it 30mg?) My son was on 40mg at 11 years old and 89 lbs.
 
I think you're right she probably does need upping. She is reluctant though as she feels that the spots and rash on her face is caused by the Pred.

She's on 30mg, and this has always worked before, either she has got a little worse or got immune to it!

She is just over 100lbs, she has probably lost about 35lbs since last Summer. I think if she won't will call her nurse tomorrow, I will.

Thank you x,
 
OK.. Nurse has sent prescription for another anti sickness for J today!! not sure how this will work as she has been through them all and even onsansetron not working!

She also wants a stool sample, if she can manage one!! Had a very tiny hard BM this morning that was illuminous green :-/
 
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That's a shame she isn't improving any more. I would have said it's necessary to stay on the Pred at least until the appointment on 21st. Hope the new anti-sickness med works!
 
Yes staying on Pred. Just adding the extra anti sickness.

She has just done another tiny but bright green BM!! At least it's good for stool sample. Have looked this up and could be food going through her too quickly to digest. I would say it's the opposite though and takes a long time to go through! Any one got any ideas?? :ack::ack:
 
apparently green poo means nothing!! Could be food or drink as you said Carol, but her diet right now is very basic and bland, for what it's worth, considering even that doesn't stay down!!

Could be moving too fast through system, or just not absorbing nutrients. Could be liver failure!! Could be the amount of laxatives she takes! Could be nothing! But at they are at least testing, am not going to worry too much about it.

Not convinced about adding more anti sickness, but what is one more medication!!
 

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