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Thinking of you , hate the waiting for results.

Currently waiting a return call from GI for MRI results.
 
We had an appointment at IBD clinic today. She has lost 2.5kg....:frown: Blood was ok apart from ESR which has gone up to 73....:frown:

Somehow they lost our MRE results.....so now we have to wait for them to get another copy to make sure there is no small bowel involvement .

As she is symptom free at the moment there is no plan to change her medication.

Next appointment is in 3 months.
 
Well that's frustrating they couldn't find the MRE results! Glad she is feeling well in herself, hope it continues!
 
Not to be rude.....
But how can they say she is symptom free with a rising sed rate and weight loss ?? :eek2::eek2:
That is nowhere near remission.
I would ask especially since they don't plan on seeing your lo for three months.
Hugs
 
I have to agree with MLP a rising sed rate and weight loss sounds like she is still having active disease. Waiting three months for a follow up with that going on does not seem like the appropriate course of action. They should be keeping a closer eye on her than that. Unless that weight loss is from comming of steroids and was on purpose but I would still be worried about the sed rate.
 
my little penguin said:
Not to be rude.....
But how can they say she is symptom free with a rising sed rate and weight loss ?? :eek2::eek2:
That is nowhere near remission.
I would ask especially since they don't plan on seeing your lo for three months.
Hugs
Click to expand...

MLP your not being rude at all...i agree with you.I just don't know how to get the DR to agree...:voodoo::voodoo::voodoo:
I kept telling him we weren't happy at all with ESR and he said it's only a one off.....even though it's slowly been climbing for a few months.
He was happy that she had no diarrhea or pain....but i told him with ESR going up it won't be long before its back
I don't know what to do ...he doesn't want to see us for 3 months unless she gets sick.
 
kimmidwife said:
I have to agree with MLP a rising sed rate and weight loss sounds like she is still having active disease. Waiting three months for a follow up with that going on does not seem like the appropriate course of action. They should be keeping a closer eye on her than that. Unless that weight loss is from comming of steroids and was on purpose but I would still be worried about the sed rate.
Click to expand...



Kim i think it's been about 4 months since she came off steriods..
Her appetite is good ...so it must be the disease.

Yeah i'm not very happy with these people...
 
If the gp orders it make sure you check with testing labs regarding price as the test is not covered by medicare and the price varies between labs.
 
The other option would be to have weekly weight checks at her ped office and kindly call the Gi office to update them on how much weight she lost .
Keep this pace up .
Once she reaches x kg then tell them you are very concerned and want the Gi to see because of it.
 
I rang the gi office with updates on Sarah's weightloss before we were even seen by the gi, and appointments with found for her.
 
My daughter has had some blood when wiping....:(
No other problems at the moment.
Does this mean things are getting worse inside ?
 
Catherine said:
Can you get a fecael calproctein ordered by the gp? Maybe it rising the gi may do something.
Click to expand...



I think Catherine is right on!:hug:

IF the test comes back raised, you then have something to show GI.
If he still doesn't take it seriously ask him to explain again before you get a second opinion.:smile:
 
Upsetmom: hard to tell. Could be a fissure or hemorrhoid. My daughter's first symptom is blood and it usually starts with blood when wiping. If just when wiping we wait and see if it continues. If not we call it a blip. If it continues and we start seeing it on or in the bm then we call on it. Our doc tells us not to get too crazy over the blood and that there is this thing called terminal bleeding that isn't serious and doesn't mean inflammation but needs to be dealt with. Watch it. If it continues or gets worse I would call.

I forget how old your daughter is but....the other things we always think when this appears is...menstrual cycle...so far we have been wrong every time:(
 
We regularly have blood when symptomatic. I would let your GI know and monitor her for anemia but with consistent moderately bloody stools for months on end, all we ever did was supplement. Hoping it goes away soon! I also had to monitor dd's weight myself...daily until stable, then weekly.
 
She is 15 and the first thing i thought of was periods....she still hasn't started.
I made her go back to the toilet to double check..but nothing.:(

Tried to ring the nurse but shes not working till monday.
 
Definitly monitor and see if it happens again. If it does then ring the doctor. My daughter on occasion has had a one time showing of blood and then been fine. If it does happen again do they have an emergency number for you to contact someone if the nurse is not working?
 
Call tomorrow and ask them if there is an after hours number. In the USA most places will have some kind of after hours answering service. I am not sure about in Australia.
 
Is this a new symptom?

If not and it is not worse then wait and watch.

If it is and it is and hasn't occurred again then wait and watch and have it checked out first thing Monday.

If it is and it is getting worse or persisting then head to the ER.

Good luck!

Dusty. xxx
 
When she first got diagnosed she was bleeding...but she hasn't bled for about 8 months.
Today she hasn't been to the the toilet...There's no other symptoms so i'll have to wait and see what happens.
 
Good luck hun. I hope the bleeding settles and if not it is easily explained away. :goodluck:

Dusty. :heart:
 
I was at the hospital today so i decided to go see the nurse as she didn't return my call yesterday...so now my daughter needs another blood test and will be put on flagyl again ....i wanted to know why another blood test was necessary when we already know that her ESR has been climbing for the last few months.
They want to see how high it is to see if she needs to be put on steriods . I just don't see why they don't change her medication as the pentasa obviously isn't working.
Anyway my daughter is still bleeding and in pain after eating...:(

Good news with my husband no change in his tumor since last MRI 3 months ago.:luigi:
 
Woot Woot!!! Fab news about your husband!!! Long may the good results continue!!! :):):)

When does she the specialist again?

Any chance of seeing them before any drugs are added or dropped so they can eyeball your daughter and you can discuss your concerns?

I am always a bit iffy about making treatment decisions over the phone or without seeing the GI UNLESS I have a fab rapport and vibe with the doc.

Dusty. xxx
 
We see the Dr late February.
The nurse seems to think we can manage this over the phone..:voodoo:
 
I was over the moon when my husbands DR said there was no change.. hes not satisfied they can't give a better explanation to why he has been getting worse and falling over even though they keep telling him its from all the operations hes had....i had to hold onto him walking to the car...its just so heartbreaking
 
I know I can't judge your situation but if you are at all uncomfortable about going down this over the phone path I would contact the nurse and insist that you meet with the GI before any treatment decisions are made.

It is one thing to increase or decrease the dose of a drug that is already prescribed over the phone but quite another to introduce not one but two drugs into the treatment regime.

Dusty. xxx
 
upsetmom said:
I was over the moon when my husbands DR said there was no change.. hes not satisfied they can't give a better explanation to why he has been getting worse and falling over even though they keep telling him its from all the operations hes had....i had to hold onto him walking to the car...its just so heartbreaking
Click to expand...

So the falling over is getting worse the longer he has been post surgery?

Does your husband go to POWH?

Dusty. xxx
 
That seems odd then and I am not surprised he is unhappy with the explanation. :( How heartbreaking for you both. :hug:

Who does he see? If you don't wish to say that is fine.

Dusty. xxx
 
What i meant when i said hes getting worse is his dizziness, his speech and his balance ...but he was never falling over before
 
Okay, a man with a fine reputation. Since he is a surgeon has your husband also seen a neurologist?

Dusty. xxx
 
We were seeing a neurologist that Dr teo recommended for about a year. He tried every medication that he could think of . He just told us to keep seeing our psychologist. But hes tried everything too and nothing helps
 
Dr Watson he works where Teo works ...and we have seen another one ..he told us not to go back after the first visit as he couldn't help us
 
Dusty we have tried everything even a ENT that checked his ears because of his balance and dizziness
 
Dr Paul Spira is an excellent neurologist (assuming he isn't the other one!). He has rooms at Bondi Junction and also works at POW. I think it would be worthwhile having at least one more opinion if your husband is up to it. I don't know if he would be of any help but it may be worth a try.

I don't know, it just seems that if things are worsening there must be sort of explanation for it. Even if it was what they are suggesting they should provide him with a concrete answer as to physiology behind it and not just say it's because of the operations you have had. :(

Dusty. xxx
 
I hope it doesn't sound like I am suggesting you haven't done enough. I don't mean it that way...:hug:

Dusty. xxx
 
Thanks Dusty hes not the other one ...i'll have to ask our GP for referral ..we're willing to try anything or travel anywhere
 
Oh my gosh! I find myself in a similar situation with my mom. She has a brain tumor and it was discovered when she had slurred speech, delayed responses to questions, her thinking was slow, severe dizziness and falling over. Dad took her to hospital and they were odf course thinking stroke. They did cat scan and found tunor but now she is being told tumor most likely benign and not the caus of her issues. She has searched and searched and no one can help her. I feel your pain! But oh yeah, this is an IBD forum....hope your girl is feeling better soon!
 
I hope more than anything your husband is able to get some answers from someone. :hug:

Just as a side note...I have known of Dr Spira for quite some time as I worked with him in the eighties at PHH. Interestingly enough Sarah was referred to him via UNSW a couple of years ago. She found him to be very good. She saw him as a public patient through the hospital clinic and IIRC she only had to wait about 3 weeks for the initial consult.

Dusty. xxx
 
crohnsinct said:
Oh my gosh! I find myself in a similar situation with my mom. She has a brain tumor and it was discovered when she had slurred speech, delayed responses to questions, her thinking was slow, severe dizziness and falling over. Dad took her to hospital and they were odf course thinking stroke. They did cat scan and found tunor but now she is being told tumor most likely benign and not the caus of her issues. She has searched and searched and no one can help her. I feel your pain! But oh yeah, this is an IBD forum....hope your girl is feeling better soon!
Click to expand...

Sorry about your mum.....so they never removed it?
 
No and she is sticking her head in the sand and not getting a second opinion even though her GP doesn't agree. It is her way and generation I think. Scared of docs..doesn't want to question etc.
 

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