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My daughter had an appointment at the IBD clinic.Everything is alright apart from ESR which has gone from 5 to 39 in 6 weeks.They want her to continue with the pentasa and see what happens. If she gets worse she is going to be put on imuran. At the moment she is in pain mainly after eating and her poo is alternating between normal and diarrhea

Our next appointment is in 2 months
Is this plan right ? ....let her get sick before they do something

Also her CRP was 4 which was normal
 
We also got told off for getting her MRE done privately
Apparently they don't trust anyone apart from their doctor. So now they got the scans and he will look at them.
 
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That must be quite frustrating - 2 months seems quite a long time to leave her in pain, plus the imuran takes 8 - 12 weeks to even start working. Not sure what the best thing to do is. Might be worth keeping a pain/toilet diary for a couple of weeks. If it still seems to be getting worse, then I don't see how the Pentasa is magically going to "start working" - try phone and get an earlier appointment. Hope that she does feel better soon!
 
I don't know maybe Dusty has a better understanding of the public system. We have only used a private gi as the waiting lists were so long.

Our gi arranged for the MRI to be done, he only wanted to use places he trusted and the MRI was done 4 days after the colonscopy. No treatment was started until after the MRI.

Our visits to the GI, have been much closer together, 2 weeks (x2), then month, 2 monthly, then 4 months and next appointment is in 6 months but Sarah is in clincial remission. We were also told to call if we needed a sooner appointment.

I know Sarah level of disease was not severe enough to be a straight forward decision to start on aza but she started on it due to the severe pain and severe weight loss. We needed to get her life back.
 
The doctor did say he would see her sooner if needed and to call the nurse any time. She has been getting daily pain that can last anywhere from 5mins to an hour. All i was told is give her panadol and apply heat and if the pain or diarrhea get worse to call them.
 
Thanks for the update upsetmom. :hug:

The fact that they sound to have given you plenty of back up is reassuring. :) As Sascot has said, be sure and log everything so you can track her symptoms and can then produce the evidence for the docs and nurses.

I can well understand your frustration hun and unfortunately waiting and watching for a response is a big part of medicine. If your daughter does get worse you won't have to wait 2 months, just get on the blower and start harping! :lol:

As to the MRE and their response, well that really pisses me off! Grrrrr. Tell them to get off their precious high horses and come back to reality! It mightn't hurt to remind them that most of their patients don't live within cooee of the hospital and they should be thankful that you are coming armed with evidence!

Dusty. xxx
 
About a week ago my daughter started to get constant stabbing chest pain.
GP thought it might be from her back so he cracked it and she said it felt a bit better.

Then on friday the pain started to get worse with pain travelling half way down her arm. We went back to the doctor who did an ECG which came back abnormal so he sent us to hospital.

Once there did more tests and the ECG showed the same thing. Aparently this would be normal in a 10 year old but not at 15 .An ultrsound was done which showed some fluid around the heart but the doctor said it was nothing to worry about.

I asked could this be from the pentasa.They weren't sure so they rang the childrens hospital. They told them to check her legs for pain or redness which could indicate a blood clot.

They monitored her all day and sent us home with instructions to stop the pentasa and if the pain gets worse or doesn't go away in 2 days to go back.

Sunday now the pain is still there not as bad as the other day. Seems to be a constant stabbing pain in one specific spot on her left side.And it gets worse when she moves around.

Now my problem... DO we go back to the hospital today or wait another day to see if the pain goes away like we were instructed... to make sure the pentasa is out of her system and see if the pain is still there.

I just wish they kept her there on friday like the GP thought they would do to monitor everything and not make me stress and and make my own decision to go back or not.
 
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I would go back a blood clot is not something to mess around with.
Let them send you home at least then they can assess her.
Hugs.
Just an FYI
Crohn's patient tend to throw clots when their inflammation is not under control.
Please call you Gi .
They should have people covering on the weekend.
Hugs
 
My husband thinks we should wait till tomorrow but my instinct says take her today . On friday the pain was 8/10... today it is maybe a 3 But it's stilll there and it's been more than 48 hours since stopping the pentasa so i asume it would be out of her system by now.
 
Is pain constant? Poor kid. Follow there instructions they said two days its day and she it still in pain go,the hospital.
 
Yes the pain has been constant for 11 days now . There is no pain in the mornings for about 2 hrs then the pain continues all day .... GP kept telling me it was her back... don't know how i was stupid enough to believe him.

I just told her to get ready we're going to the hospital. Now she's telling me there is no pain at the moment...:ymad: So if the pain starts again we'll be heading to ER. I'm starting to get very worried.
 
Still should take her to er. But is she having milk with morning meal?
 
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No she usually has toast.

I'm trying to get her moving now to see if the pain comes back... she might even be lying to me so we don't go.
Last night the pain was very bad .. she didn't tell me till this morning.
 
I would drive there you can always turn around and go back home if she still feels better.
We had a similar issue when DS had cellulitis in his foot but we didn't know it.
Glad we did.
 
Is there anything to do near the er? Example Day of shoping which just happens to be near er.
 
I understand her fears of having to back to the hospital, but if she is still in pain please take here to get re-checked.
 
Catherine thats a good idea ..go shopping the hospital's just up the road

At the moment she's saying there's no pain. but this morning the pain was about a 3 so don't know if she's lying to me or not. Something just tells me this isn't caused by the tablets... you don't get stabbing pain from tablets.

So just waiting for her to mention pain and we're off to ER
 
Sorry I am late to this upset mom...:hug:

Thinking about you. I too would take her to the hospital and I see that is what you are going to do at the first sign of pain again. Good luck!

Dusty. xxx
 
Sorry to hear she is still getting the pain. I wouldn't have thought the meds would cause a specific sharp pain in one spot, but I could be completely wrong ;). Mom's instincts are usually good, so if you feel you need to go to the ER, then it's best to do that. Better than waiting and regretting it after. Hope they do something to help her!
 
We never ended up going to ER as she kept telling me she had no pain and it would be a waste of time going and she had lots of homework to do.

Then a few hours ago she said the pain was back but this time it was also aching and stabbing a little bit. She also has had a sore throat.

She had some panadol which eased the pain.

I'll have to ring the clinic and see if her medication needs changing. I still can't see the tablets causing this.

I'm so worried but she won't listen and tells me the pain is not as bad as the other day...how do you make a teenager listen..:ymad:
 
Ugh, I wondered if that would happen. :(

Very often you can't make them listen and if your gut is saying something has to be done then don't ask, tell.

I know it is hard Mum, I have been there and done that and I don't ask any questions that way there is no answer to be given. I just say we are going, say to the hospital, be ready in ten. When and if the objections start I then say..."Right now this is not open for discussion. You may not realise it at this point in your life but nothing, and I mean nothing, over rides you health, end of story and end of discussion."

I so hope the pain settles, such a worrying time for you. :hug:

Dusty. xxx
 
I agree with dustykat. Your the parent and what you say goes. I have 2 teenagers and my daughter 17 now is pregnant and have severe asthma and allergies. She hates taking her meds and I have to stay on her constantly about making sure she takes them. I have even had to stand over her and watch her take them. After a few rounds of that she gave up the fight and is doing better at taking them on her own.

And like sascot said it is always better to be safe than sorry. I would rather you guys make a unneeded trip to the ER than for her to have a serious complication develop at home.
 
We just got back from the ER my daughters pain was back.
Once there they did another 4 ECG , chest xray ,blood test and urine sample and still no answer......they said it could be a muscle or the pentasa.

CRP was 4 gone up to 8.
ERS was 39 gone up to 46.
HB was 130 gone down to 106 we have to see our GP for a review in a few days
he said if HB falls to 80 she'll need a blood transfusion.

This morning i rang the IBD
 
Don't know what happened with my computer.

Any way rang IBD nurse this morning and explained what has been happening
she said i will talk to the doctor and ring you back to see if she is to go back on the pentasa or not.... she never did.
:voodoo: ....so now i have to try ring tomorrow...i'm worried that my daughter is not on any meds
 
ellie i just happened to read about that yesterday and thought could it be that.
They didn't want to do a ct because of radiation so would that show up on a normal xray? ....i'll ask my GP when we see him on thursday
 
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How is she today? With hemiglobin when was it last tested? Do you have ferritin level?

It must be worrying for you.
 
catherine she's asleep at the moment so will update later .
Her last test was about 4 or 5 weeks ago. Not sure about ferritin level i don't see it on the form. We are to go to GP on thursday for retesting . The doctor at the hospital said just keep an eye out for any signs of anemia.
VERY VERY WORRYING TIME FOR ME .....:hallo3:
 
When they do bloods again ask that they also test B12, Iron Studies, Folate and Vitamin D.

Thinking of you! :heart:

Dusty. xxx
 
With her ESR AND CRP slowly climbing should i ask for her meds to be changed .....it doesn't look like the pentasa was doing a good job.
 
They certainly should be reviewing her and a med change may well be in order.

Pentasa is a low level entry drug so if her inflammation was much above mild - moderate at most then I doubt it would do the trick.

Dusty. xxx
 
Certainly sounds like the meds aren't doing their job, best to get them to keep an eye on her. Hope the pain has settled down when she wakes up.
 
Hugs..
DS was given one month to improve on pentasa.
Gi said if no improvement then time to move on.
Hope they can get things under control soon.
 
I sure the GP will do full bloods, if not ask.

When did your daughter last have a period?

Your daughter has anemia, 10.6 or 106 is the level my Sarah sits at. You need your GP to tell you the cause of daughter anemia, and start treating it. The tests Dusty suggest will help with this, and would surprise if the GP doesnot automaticly order them.

Physical signs of anemia, we notice the skin starts to get paler, after school naps begin to occur.

Also consider asking the GP to call the GI which management advise.


"What are the signs of anemia?
Anemia takes some time to develop. In the beginning, you may not have any signs or they may be mild. But as it gets worse, you may have these symptoms:

Fatigue (very common)
Weakness (very common)
Dizziness
Headache
Numbness or coldness in your hands and feet
Low body temperature
Pale skin
Rapid or irregular heartbeat
Shortness of breath
Chest pain
Irritability
Not doing well at work or in school "

www.womenshealth.gov › Publications › Our publications
 
She woke up with no pain as usual. The pain usually starts about 2 hrs after she gets up. I sent her to school with a note not to do any sports for now. They were going to do self defence today.

Catherine she hasn't even started her periods yet so that would not be the cause.
I have noticed she seems to get tired very quickly lately.

I just tried to ring the nurse but she's still not answering or returning my calls...:voodoo:
 
You stay on them! Go Mom! I'm sure those labs aren't going in the right direction.....bless her little heart. Keep us posted.

J.
 
Did the hospital give you a copy of results?

If not call your GP and ask the secretary whether they are able to request a copy from the hospital so that the GP has them to review for your appointment.
 
Catherine i did get a copy.

I finally got in touch with the nurse and explained everything. She said the doctor was in surgury and she'll talk to him to see if he wants us to go in on thursday or if we could do something over the phone.

Her pain is back and it hurts her more when she breathes in. I feel stuck i don't know what to do anymore apart from give her painkillers.
 
Are you going to the same hospital where the GI visits? Do you trust your GP? Can you talk to the GP's nurse, and get an urgent appointment there.

If you have concerned go back to hospital.
 
Catherine we live one and a half hours away from the GI so we just go to our local hospital. The IBD clinic only works on wednesdays and thursdays so the nurse suggested to have bloods done tomorrow and hopefully go in thursday..
i'm still waiting for her to ring back after she talks to the doctor.
 
Not sure she was going to talk to the doctor....she did ask what the letter to the GP said. They were also going to look at her blood results on the computer.
 
When it was too far for me to pick up blood test form from the GI, they arrange for the GP to complete the order form and I pick it up from the GP. I would think to get results by Thursday, the blood tests would need to be done early tomorrow.
 
I just realized i have a form at home for blood test requests from the last time we went to the IBD clinic.. so i will take them along with me .
 
If bloods are done in the morning then most should be back by late afternoon or even earlier. If they are done in the afternoon they are there by late morniing the following day, at the lastest. B12 and Vitamin D sometimes seem to take that extra few hours or day, well they do for us.

I assume the GP uses a program called Medical Director or something similar for his electronic files. He may well have the hospitals pathology program on his computer in which case he can automatically download the results. Being closer the city perhaps he has a number of area health services he accesses for results so I can't imagine he wouldn't have your local hospital.

Ooooo, what does the form say? :lol:

Dusty. xxx
 
I'm assuming blood test requried...sorry i'm not with it today.

Bloods required
FBC, ESR, CRP,LFT, IRON STUDIES, UEC,CMP,VIT D
PTH, B12, FOLATE,ZINC
 
At this point they have it well covered. :)

For those in the US: CMP here is not the same test as you have. Other tests that upsetmom has listed cover that.

CMP is Calcium Magnesium Phosphate.

Dusty. xxx
 
I finally got in touch with the nurse.

The plan is have blood test and go see them on friday.
She said the doctor wants to give her acid tablets as this can sometimes cause chest pain. NOW i am against these tablets unless they are 100% sure she has acid. The reason for this is a few years ago i was prescribed these tablets for nausea!!! i took them for 2 weeks and all they did was create MORE problems ....
i started to get acid, burning in my throat and i found i couldn't eat certain foods. My GP at the time told me to increase them... thats when i got a second opinion and started to see the GP i'm seeing now and he said there's no way i would have given you these tablets for nausea. He sent me for an endoscopy which showed i didn't even need these tablets. Then was the hard part trying to get off these tablets... i was sick for a few weeks till the acid stabilized.... NOW i don't know if it was just an odd case but i am so AGAINST these tablets UNLESS they are absolutely sure that she has ACID and she needs them. And i can't see acid causing stabbibg chest pain in one certain spot.

I told the nurse this and she said i'll have to speak with the doctor
 
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It's hard to say with the acid as it can present quite differently between people.

The other thing that may not be a bad idea to rule out is pancreatitis. It can cause a sharp chest pain that radiates through to the back.

They would be able to test for it by taking blood for pancreatic enzymes.

Good luck with the blood results and the appointment!

Dusty. xxx
 
Ah the minefield that are medicines!! If you have experience with this med and don't trust it, then it's probably best to hold off. Can you get something milder over the counter, like Gaviscon liquid (over here anyone over six can have it) which would coat the lining but hopefully not cause any problems? I agree it doesnt' sound like heartburn (but don't take my word for it :wink:). My husbands family all suffer from heartburn as do I occasionally and it does tend to be a more general burning in the middle of the chest and up towards the throat. Good luck at the appointment
 
The last couple of days i have been rubbing deep heat on her chest and the pain seems to have eased. Today the pain wasn't as bad ... so hopefully it is a muscle.... :ylol:

Sascot ..:thumright:..that is a brilliant idea.... so if they mention acid tablets tomorrow i'll tell them we'll give Gaviscon a go first.... even though i don't think this is acid
 
Update on my daughters IBD clinic visit.

She had no chest pain at all today...how did i know that was going to happen.

Blood results ESR gone up to 52 , magnesium is low at .69 , hamoglobin gone up to 117 and there were a few other things the doctor said were wrong that would indicate inflammation .

He thinks her chest pain might be from the low magnesium so now he wants to restart the pentasa and if the pain comes back she is to have a blood test to see if magnesium is low and then start acid tablets to see if that helps.And then he would start her on magnesium tablets.

Also he thinks ESR might have gone up because the pentasa has been stopped he wants to wait and see what happens with her next blood test. At this stage he wasn't too concerned because she has no diarrhea. It doesn't make sense to me as the ESR had gone up a month ago while she was still on the pentasa .

So now all we can do is wait and see what happens and hopefully things don't get worse.
 
Also he wasn't convinced it was acid as she hasn't got any symptoms of acid but he said we'll give the acid tablets a go to see if it helps
 
Friday my daughter started pentasa and a few hours later her stomach started to rumble.
Then saturday she had diarrhea and was coming down with the flu. I told her not to take the pentasa to see if that was the cause of her diarrhea..
Last night stomach was still rumbling......
I hate this disease...don't know if it's from the pentasa, flu or a flare.
I tried to ring the nurse but they don't work on weekends

Chest pain hasn't come back.. thank god

Does anyone know if i could get a copy of blood results sent straight to me next time if i put my name and address on the form..i'm asking because i asked the doctor why results had not been sent to my GP and he said i had to fill in the bottom of the form..so i figured if he could get a copy so can i
 
I know in the us there are electronic records with apps that show test results once the doc has reviewed them. Typically the doc who orders the bloodwork is the only one who is aloud to get the results to interpret it. Then it can be forwarded on to other doctors who also care for the child.
Medical records dept would have a copy of all tests and doctors notes these are yours you can get a copy just by filling out a form.
Sorry to hear about the stomach ache. Pentasa really takes at least a month to work. Stop and starting isn't usually recommended .
 
Does anyone know if i could get a copy of blood results sent straight to me next time if i put my name and address on the form..i'm asking because i asked the doctor why results had not been sent to my GP and he said i had to fill in the bottom of the form..so i figured if he could get a copy so can i

Ugh! I am so sorry to hear that your daughter is still suffering. :hug:

Hmmm...I have no idea what they are talking about with you filling out the bottom of the form. As far as I am aware there is no way that you would be able to access the results before the doctor. It is however very easy for your GP to obtain a copy, all the doctor or nurse that is ordering the bloods has to do is CC your GP on the form.

Dusty. xxx
 
ESR is a very general measure of inflammation. It can be affected by everything from a cold to a bruise to a serious injury. And it may stay elevated for weeks after the illness or injury has healed. So it is helpful to see that it has moved (in this case gone up) but it isn't necessarily very meaningful that it was elevated on the first test since there may have been some other explanation for it in the week(s) prior to the testing.
 
Dusty
On the botttom of the form says copy of report to....... with address and phone number for 2 people.... they told me if i wanted my GP to receive copy to write his details down otherwise he doesn't get a copy........So when she has her blood test i'm going to ask if i could also get a copy........it won't hurt to ask
 
Sorry to hear she's still having issues! Certainly sounds like the Pentasa is causing more problems than it's solving. Frustrating that they are going to wait again to check the ESR, wonder how many times it has to be high before they do anything. That's good that the chest pain is gone!
 
I am glad the chest pain is gone. If the inflamation is rising why are they not considering other treatments besides pentasa? Have you asked about that?
 
I'll be talking to the nurse today as she now has stomach pain as well as the diarrhea.
Kim i think their next step was imuran but we got the doctor the other day that keeps wanting to try the milder drugs first
 
Trying milder is fine but after 30 days its as good as its going to get with those meds so if your not in remission then time to move on IMO .
I would ask your Gi what the plan is? How long she is suppose to suffer to prove the med is not working.

Hugs
 
I just spoke to the nurse and she said they might put her on flagyl. Will ring me back after she talks to the doctor. She did mention that my daughter was on the verge of a flare after the last blood results.

I gave my daughter lomotil and sent her to school as she has lots of exams.
 
Sorry to hear that. Poor thing must be feeling worse with tests to sit as well as being in pain. Andrew was on flagyl for about 4 months with no side effects. I remember the nurses saying it was a good antibiotic because it was anti inflammatory as well. Hope it helps soon!
 
Wish her the best of luck with exams.

What year level is your daughter?

Our GI consider this a danger time of year, due to school pressures.
 
Upsetmom

Maybe time to talk to the school about how sick she is.

When Sarah was very sick at this time last year, we were told by the school that for her the exams weren't that important, her health was more important.

We have even been told this year exams, except for her year 12 study, are ok for her miss as long as she has a doctor's certificate and even the year 12 study can missed if she is very very sick, with again doctor certificate.
 
Catherine
I have constantly told her the school needs to know BUT she won't listen. Today i gave her a note just in case she needed to go toilet during exams . There will come a day where she won't have a choice but at the moment i don't know how to convince her.
 
In Sarah case, she look so ill that teachers just started asking what wrong. This time last year we only knew we were dealing anemia which was responsing to supplements.

This year Sarah missed the first four days of year 11 and school had to be told because she looked like missing so much school and 90% attendance is required.

There was no choice and she wanted to get out the harder math which needed approval of the year level leader.

Has she told any of her friends?
 
She doesn't really care if her friends know...i was the one who advised her not to tell them...i thought kids can be cruel.
She doesn't like most of her teachers.. so she just doesn't want them to know.
 
At our school with these issues are above the subject teacher level. I not sure that all Sarah know what the illness is but they do know she was very sick.

If it not made clear to the school it a health issue, she maybe labelled as someone who wags.
 
I always have a sick note for any absence..so far there has been no questioning..apparently there are kids that only go few days a week.

My daughter is very smart..so i'd hate things to go downhill because she doesn't want them to know
 
My daughter was diagnosed in Year 9. The school knew because we live in a small town and she had emergency surgery, the bush telegraph soon went into overdrive and all of her teachers turned up at the hospital over the following days.

That said though I still made an appointment with the Principal and executive teachers a few weeks after her discharge and spoke extensively with them about what she had experienced and what she was expected to continue to experience.

I don't say my daughter was pleased as such but she wasn't upset either by my actions. I did however explain to her that although she was a not a child the school was still responsible for her care and well being during the hours she was there. As such they had a right to a certain level of disclosure regarding her health.

The other thing I found helpful when it came to school was to contact Crohn's and Colitis Australia and they sent me some brochures regarding Crohn's and School. I was then able to distribute them to the staff:

Schools
If you are a student or teacher and would like further information on Crohn's disease or ulcerative colitis, please ring CCA on 1800 138 029.

Children and adolescents with IBD should be as active as they feel like being or are capable of being. If they feel well enough, there is no reason for them not to go to school or participate in sport.

Children with chronic diseases such as IBD tend to learn to accept a certain amount of pain and discomfort as 'normal' and just get on with it. They are the first to realise when it all becomes too much. Children should always be encouraged to go to school for educational and social purposes, even during disease flare-ups, although sometimes it may be best to respect their desire to stay home. Forcing a child to go to school, or allowing him/her to spend many days at home can both lead to tension within the family. A sound knowledge of their condition and good communication with your child can help you determine whether or not he or she is capable of attending school on any given day. When young people are responding positively they tend to enjoy the company of their peers as a distraction from their illness, so missing school can be a wake-up call for parents and the clinical team to take a more proactive or different approach to the management of their condition..

Clearly, there are special considerations for children with IBD when attending school. It's best to advise teachers and school administrators (including the school nurse) in advance about your child's condition. This can help explain absences from school, the need to take medications during school hours, any specific dietary requirements they may have and their possible inability to participate in certain activities from time to time. There may also be instances where your child needs extra support in terms of making up classwork or sitting exams outside of scheduled times. Establishing a good rapport with your child's teachers and school administrators can also help in implementing practical methods for dealing with the symptoms of IBD especially during disease flare-ups. For example, your child should always have immediate and unrestricted access to the nearest toilet facilities, including staff-only facilities if need be.

The above is an excerpt from"The Inside Story: A Toolkit for Living Well with IBD". The entire article can be found in the Member's Only section of the website.

Good luck!

Dusty. xxx
 
How soon should i expect the flagyl to work?
She has taken it for 2 days and still has diarrhea...:frown:... but no pain.
 
I would give it a full week before you start worrying that it's not working. It needs time to heal things. Glad she doesn't have pain now!
 
Thanks sascot i spoke with the nurse today and she said we'll wait till monday if there's no improvement they will add another antibiotic.
Still has diarrhea...very explosive.

She also said maybe it's time for her to start talking with her friends about this disease. Is this a good idea? .....to me she seems ok ....doesn't seem bothered at all.
 
I hope the Flagyl kicks in and the job Mum. :hug:

When it comes to her friends, and assuming there are no issues brewing, I would let her take the lead and wouldn't push the issue with her if she seems to be doing okay with it all. Although my daughter's friends knew she had Crohn's, due to the dramatic diagnosis :lol:, I left it to her with how things would continue once she went back to school. I did enquire every now and then as to how she was getting on and she would say fine so I left it at that. I think deep down you have a sense if things are okay or not.

My daughter had a rare 'meltdown' at one point and the doctor was pushing for her to 'talk' about it. He was referring to friends, support groups, counsellors, that sort of thing. Don't get me wrong, I knew where he was coming from and I didn't disagree as such but it just wasn't the time, the doc didn't understand and he and I had a major blow up about it. I wanted to keep the lines of communication and trust open between her and I and he couldn't see that pushing her to talk about it would shut what communication we had open down. I also didn't think there was one thing wrong with her venting, she had been dealt a crap hand so why shouldn't she be able to let fly about it when things became too much. He didn't agree with that either so i just told him he was too F*&^ing black and white and until he walks a mile in my shoes he can keep his opinions to himself.

That was earlier on in the diagnosis. She did go 'off the rails' a bit in Year 12 and did go and see the school counsellor which was helpful. She said it wasn't but I could see a difference. :lol:

Dusty. xxx
 
Thanks Dusty
The nurse said as my daughter also has a sick dad that she should talk more to get things off her chest but she seems fine and happy. Every now and then she asks questions about herself or her dad and i tell her the truth.

Up until now i advised her not to tell her friends but now i have left it to her...so we'll see what happens.
 
Sarah quite open about her crohn. She used facebook private message to tell her friends straight after dx. We now know a good friends father has ibd so does one of her teacher brother.
 
DS has told some of his friends but most 8 yr olds don't understand what he is talking about. For them he could have told them he has to always wear a red shirt and it would mean the same thing.
All of his teachers know but not sure they truly understand either.
 
Just an update

8 days since starting flagyl and she still has diarrhea. I've tried ringing the nurse ...not answering and not returning calls..:ymad:

We were told any problems just ring the nurse...How do i talk to her if she's not returning my calls...:voodoo:
 
Typical - I totally sympathise! I've been waiting for nearly a week to hear what's happening with the pain clinic :voodoo:.
You would think of all departments in a hospital/doctors, children would get some extra efficiency and sympathy but they don't seem to bother. It's horrible waiting at home and never hearing anything (I walk round with my mobile almost surgically attached to my hand at the moment)
Hope the nurse phones you soon - keep annoying them and phone a couple times a day.
 
Oh man. :( That sucks for both of you...:hug:

I would never wish anyone to have their child suffer with Crohn's but sometimes, just sometimes, I wish they would walk a day in our shoes. :yfrown:

Dusty. xxx
 
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Flagyl gave Grace a runnier stool! But she had to take it for a C.Diff infection.
I hope she'll get better!
 
I tend to wait 48 hours for a return call then I call in the am. If no answer then I call twice a day.
Then tend to return my calls now since each call is logged and it doesn't look good if you keep calling back every single day.
 
I kept calling since Monday . I finally got through.

They are going to check her stool for infection.
Lucky me ..trying to catch diarrhea :eek:......she won't do it on her own
 
We managed to get a little bit.... not a a very good experience...:lol:
I took it in this morning and was told some of the tests will take up to a week to come back.....even though the doctor had written urgent.

At the moment she still has diarrhea but isn't going as much as i have been giving her lomotil.
 
Thanks for the update upsetmom...:hug:

Unfortunately some tests do take time to culture but the tests should be returned as they become available. So you should have some of the results in the next 24-48hrs tops.

I hope your daughter is soon feeling better, bless her. :heart:

Dusty. xxx
 

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