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upsetmom

upsetmom

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Finally got to see our new GI today.:thumleft:

Appointment went good, l was quite impressed with the GI. She didn't like how M has never reached remission since diagnosis. She spoke about putting M on steroids that don't effect the bones...she did tell me the name but l can't remember. A lot was discussed but till she's done her own tests we don't know what's going to happen next. Blood test were ordered and a FC. Now this is interesting...FC results get done in 30 mins by the IBD nurse. I've read of people waiting 3 weeks for results. Now all we need is a stool sample from M.
 
Are you in a hospital setting with the GI? I noticed the difference when we moved to the hospital GI. Tests that used to have to be sent away are done in house (at no extra cost) and tests (except biopsies that have to wait) are done same day. Glad you could see results quickly.

When you know the name of the steroid Id love to know it & if it works as well. I hate prednisone. Hope this GI helps you find remission soon!
 
The hospital must be doing it own testing. It is only done a few hospitals and they usual wait until they have a number of tests to process.

The test usually takes 10-14 days when done via one of the private labs
 
There is a point of service quick test on the market (Probably similar to the at home test that we are all coveting) but not a lot of docs use it. Just as easy to send the sample out and wait. Unless there is an urgent need in which case they probably don't need FC to tell them something is wrong. Probably similar to the at home test that we are all coveting.

Sounds like the appointment went well. Hope this GI is a keeper and she gets your girl back on track!
 
Is the steroid something like Entocort? That generally has fewer side effects than prednisone-- in fact, when my daughter was on it, she had no side effects at all.

So glad she finally has a good GI!! Hope M starts feeling better SOON.
 
Supportivemum ...It is in a hospital setting.

It started with a B. Doing a bit of research l think its called Budesonide or Entocort as Maya mentioned.
 
Upsetmom,
Entocort is a steroid that focuses on working in the gut. It is true it has less side effects then prednisone. The biggest issue with it is it does not always work for people with Crohn's disease. We have tried it multiple times on and off throughout the years. Sometimes it has worked and sometimes not.
 
Make sure you find out how much budesonide is going to cost if you take this path.

It could be very costly is you have to fill the script yourself. When we last checked approx 6-12 months ago it was $200 per script. I believe for 90 Tablets. At that time it was a private script and not covered by PBS.
 
Encore only covers certain sections of the GI tract so if damage is else where it doesn't tend work
Which is why it works for some folks but not others

Hope it helps and they get a long term plan quickly .
 
Well so much for our new GI.
After M's blood tests and FC l was told if anything was abnormal l would get notified straight away. I never heard from them so l assumed everything was normal. I've been having my own issues and with all the running around l never called up to see how everything was. M has still been getting a lot of pain and bleeding so today l decided to call the nurse. M's blood tests are all good but her FC is 1118...normal is under 100. I don't know why l was never contacted. So obviously she still has a lot of inflammation. She told me she would send out an appointment for 5th August..:yfaint:...in the meantime if M gets worse l'm told to take her to the ER.
 
Wow, that is frustrating. With a FC that high I would have assumed they would see her straight away. August? Maybe they can put M on a cancellation list to be seen sooner. Sorry you're having to wait and worry
 
Wow, that's awful. Poor M! I hope they can get her in sooner - this has been going on much too long :ghug:

Did she at least prescribe the Entocort so M could have some relief while she is waiting?
 
Well that stinks
Can you call and ask specifically to the GI for justification on the lack of a plan when damage is being done potentially ???
 
Nothing was prescribed or suggested...only the ER. She told me there was a long wait to see the GI.... I think the only way to get M to see the GI sooner is through our GP, she usually starts making phone calls and faxing letters.
 
Agree with everyone! With symptoms, a kid who has never been in remission and an FC that high she needs a plan! So you haven't even gotten the script for the Entocort (Budesonide)? At a minimum I would be pushing for that!
 
When we switched from a GI in an office to the hospital setting I was surprised how much more advocating I had to do. I figured they could see the severity, they had all the reports, they were told. My D should be one of the top priorities just like at the GI office.

I learned through other parents we are just one of many priorities and its harder to get your voice heard. It also took me 6 months to find the doc's angle on what makes her react. Not every doc worries about the blood work when they are used to a typically higher level. Its like hospital GIs have a higher threshold before action. I had to find my voice again like I did when getting D diagnosed. Even then it is me chasing & following up all while trying not to piss off the nurses. If you piss off the nurses good luck getting anything!
 
That seems like an awfully long time to wait when she is obviously not well. I never like using the ER as Plan A. Maybe you could ask to speak to the doctor directly and ask why he thinks that is acceptable.
 
Upsetmom, they be able to start a treatment without appointment.

Good luck with your GP.

Also for your information Sarah's second course of steroids was started by the ER doctor. When I rang the GI office, I was told that the wait for appointment was over month until I said the ER doctor has said she need to be seen in a week. They found appointment two days later.

I always ring to follow up results and request a copy.
 
I'm trying to avoid the ER. We can't see our GP till Monday and M still has bleeding and now shes also got diarrhea. I don't know how much bleeding she has...she tells me its around the stool. I just hope things don't get worse over the weekend.
 
Very sorry to hear this! This is very frustrating. I scent believe they never called you with the requests. I suggest you call back tomorrow and ask to speak with the office manager. Tell the office manager how upset you were that you were not informed of these abnormal results and that if you had not called they never would have told you and that now they are. Ot even giving you an appt until August.
Remember the old saying the squeaky wheel!
 
That is way too long to wait. A lot of good it does to get the test done quickly if they are not going to treat quickly! I agree that at least they should give her the entocort or let you talk to a nutritionist to consider a liquid diet. My son was put on Entocort when he was first diagnosed and I think it helped at first. I Believe it is most effective for the last part of the small intestine which is where he had issues. You may also ask to be put on a cancellation list. I once called our gi (also part of a hospital and very busy) to check for last minute cancellations on a daily basis for three weeks straight! The appointment lady said I could call three time a day if I wanted! i do hope you get an appointment soon and that she does better this weekend.
 
This is ridiculous, M has her prep tomorrow and we were given no instructions on what time to take the prep. When l went to pick it up from the hospital the only thing they told me was she was to take the tablets at 10am. So now we are going to follow the instructions on the box which says take it at 1pm, 5pm an 9pm...l hope we're doing the right thing.
 
That is crazy. I would do more prep than not enough. Nothing worse than getting there & they say 'you should have done...." & "she will have to wait because she isn't ready yet". Smart mama. Thank goodness for box instructions.

Have you tried calling the GI's office again? The fact they gave you no prep instructions might have been an oversight thinking one told you versus another. They should be called on it so it is less likely to happen again. (one would hope)
 
I think the reason we never got any instructions is l asked for a different prep that they don't usually use. I asked for the picoprep because it's only one glass compared to the 2 litres of the other prep...l knew M couldn't handle drinking 2 litres.

From what l remember soft drinks are allowed as long as they're not red, so lemon lime and bitter drinks are OK?
I hope so because l have a fridge full.:ysmile:
 
What kind of tablets are they? I have never heard of a bowel prep composed of just pills in the am? I would definitely call the GI's office and get clarification. Wishing you all the luck with the prep and the results.
 
The tablets were called Bisacodyl.
I called the nurse and was told M needs to drink the prep at 5pm, 8pm and 6am.
 
Hope the prep isn't too bad, and that the scope gives you some answers (and pushes your doctor to make some decisions about treatment soon!)
 
After the scopes the Dr came to talk to us and said M's scopes aren't too bad. She said there was a lot of inflammation on the right side but the ulcers were artificial and not deep. She said she didn't want to put M on steroids or change her medication for now. First she tells me the scopes aren't bad then she says lots of inflammation but nothing to worry about...l'm so confused.
We have a follow up in a few weeks.
 
I would think that with a FC over 1000, and inflammation on scopes, your doctor would be thinking about some change in treatment, or at least ordering small bowel imaging. That said, I think it's hard for a doctors to come out of a scope and instantly know what they want to do. I'm glad that you have a followup visit scheduled, and hopefully your doctor will suggest a change at that visit, or at least more imaging.
 
The last MRE was done about a year ago. I don't know if the DR has a plans to do another one.

M has had inflammation on all her scopes. Different Dr doing it this time so l don't know if its any better. Last FC was done a few moths ago and it was 1180. The Dr did say there was inflammation throughout her whole bowel, so there's no change there. It doesn't make sense to me, if there's inflammation and M is getting a lot of pain why wouldn't they try something different.:confused2:

We were also told to have a follow up with her old GI, but l have no plans to go back there again.
 
I agree that something does not sound right here. They need to change her meds if she is still having lots of inflammation and an FC that high. Can you get another opinion?
 
Seems really ridiculous that they wouldn't try something new. Your poor girl!!! I agree you need a second opinion if you can get one. 1180 is quite high for a FC, our GI was worried when my daughter's was in the 400s.

Sending hugs!!
 
When is the follow-up apptmt? Certainly ask why her GI feels that no change in treatment is necessary! I would ask why the current treatment would work now when it hasn't in the past. And, if staying with same treatment, how long before deciding that current treatment is not working.

:ghug:
 
We need DustyKat. I don't understand the public system as we have always used the private system.

We increased medication after scope showed a few pin size spots.

Your DD faecal calprotecton is high, she is having symptoms. THEY NEED TO DO SOMETHING.

Does she have a health care card?
 
Our follow up appointment is on the 5th August and l'll be asking heaps of questions.

I don't know if getting a second opinion is an option, we've just changed GI's. I'll have to talk to my GP and see what she recommends.

M does have a healthcare card but from what l understand most private practices still charge full price even with a card.
 
Our GI practices has two rates. The healthcard rate is cheaper.

I think it was $80 instead of $130. Although not fully bulk billed, the out pocket was much less.
 
:ghug::ghug::ghug:

What a frustrating situation you have found yourselves in! :(:(:(

No, it doesn’t make sense upsetmom given that best practice would dictate that the end point is a deep and stable remission which naturally means the elimination of inflammation. For the life of me I cannot understand why this would not be what a GI strives for??
You may recall that Matt has just been through this and with what I would venture to say would be less symptoms than your lass, and the same maintenance meds (Imuran and Pentasa), it prompted a switch up of meds. I would add here that the GI is twitchy with Matt due the severe presentation of his disease at the outset but to me this still doesn’t negate the end goal for everyone…remission. So I would certainly be asking…Just what are you aiming for by keeping the same treatment regimen when it isn’t doing what it is supposed to, keeping inflammation at bay?

The health systems:
  • Public. Anything done through this system, that is within the confines of the hospital campus either as in or outpatient, and most short term community services, are fully funded by the medicare system. If in the public system you declare your private health status you may incur costs from the visiting doctors that attend to you that you will need to claim back from your health insurer.
  • Private Hospital - Speaks for itself. You don’t have to be privately insured to be an inpatient but you then incur the full cost of your stay. The out of pocket expenses that are attracted by an inpatient vary depending on what coverage you have taken out.
  • Seeing a doctor or any service outside of the hospital system will incur an out of pocket fee but most will attract a Medicare rebate. Who bulk bills varies greatly and who they extend it to also varies greatly. In the vast majority of cases pensioners and health care card holders will be bulk billed by GP’s, imaging that does extend to more timely and complex things like MRI’s. Most pathology is covered by Medicare so all Australians are bulk billed, but we all know that FC’s aren’t!.
  • The exception to extending bulk billing to selected patients are specialists, remember, once you leave the hospital setting all health services (including your GP) are private practices and so they are free to do and charge as they see fit. Everyone will get a Medicare rebate of some description but unless you are a gold card DVA (Department of Veteran’s Affairs) holder the vast majority of specialists will not bulk bill. Having said all that my kids GI bulk bills all of his IBD patients! To say I was shocked would be an understatement! :lol:
  • The other thing to remember with specialists is referrals. A referral normally lasts 12 months. You will be charged the full consultation amount on your first visit of a new referral but any subsequent visits within that 12 month period should drop to at least half of that initial rate. In the case of having a chronic condition suss out if the GI accepts indefinite referrals and if so have your GP do one as that eliminates the cycle of a higher fee every 12 months. For those that are seeing a paediatrician bear in mind that if they are doing the referrals to the GI then a specialist to specialist referral only lasts 3 months and you don’t want to fall into the higher fee with a new referral trap every 3 months!
Dusty. xxx
 
Victoria maybe slightly differ from NSW but we have never had to paid the new patient fee a repeat referral. Including for the child who had a five year gap between visits.
 
The biopsies show M has active inflammation throughout the whole bowel. She said it's obvious that the Imuran and Pentasa are doing nothing so its time to move on. She gave M an option to do Humira or Remicade. M chose Remicade as she doesn't have to do the injections herself. Now we have to wait for approval through medicare which takes about 3 weeks. M has had on going inflammation since diagnosis so l'm glad something is finally being done.
l think l like this GI after all.:thumright:
 
I'm SO glad this GI is doing something!! Hope Remicade works wonders for M :ghug:
 
Hallebloodylujah!

Hate that it has come to this but happy that finally something is being done for your girl! I hope the Remicade works wonderfully well and your lass will start feeling the best she has felt in a very long time, bless her. :ghug:

Dusty. xxx
 
So very happy for you and her .
Hope remicade does its magic and you don't even recognize your kiddo soon.
:D
 
So glad a new plan is in place. Waiting for results, appointments, can so difficult and exhausting........I hope the remi works well and fast!!!!
 
Thanks everyone. I'm happy something's finally being done but for some reason l'm scared.

M was told she still has to take Imuran and Pentasa for at least 6 months after starting Remicade. Does that sound right? I have a feeling once she starts remicade she'll start skipping her tablets.

FW, I still avoid sitting down for too long as it causes pain, other than that l feel good.
 
There is some research that shows that being on an immunomodulator (6MP, MTX or Imuran usually) with Remicade for the first six months can prevent antibody formation. Tell M that if she takes her Imuran, the Remicade might work for longer -- that should convince her (hopefully)!

Some GI's discontinue the immunomodulator after 6 months, some continue it and some don't use them at all! It really varies. But it does seem to be accepted that they do decrease the likelihood of antibody formation.

Hope M responds to Remicade quickly!
 
Yep Ds stopped his mtx when he started remicade
He had a reaction at infusion #7 and #8
So he had to stop remicade
That might convince her to keep taking the pills
Since Ds wishes he still had remicade - humira hurts
 
Matt started Humira close to 6 weeks ago and he remains on Imuran and Pentasa. I asked the GI about his other meds before commencing the biologic and his view is to keep him on them for another 2 years.

Dusty. xxx
 
Glad to hear there is finally a plan in place. I too would try to convince her to stay on them if it helps reduce the risk of antibody formation. I really wish Caitlyn could have continued on remicade and she wasn't allergic to it. It really gives so many kids good results from what I have seen.
 
I would do as the doc says. When I took N to Boston Children's for a second opinion, the GI also said to do mtx with his Remicade. His GI in Houston did not seem to think it was necessary and now I think the remi might be loosing effectiveness.
 
We have a bit of a delay with sending the papers to get approved for remicade as M needs to have been on steroids for 6 weeks to get approved. Also M has never had the chickenpox so she needs to 2 vaccinations. First one's done, next is due next month. So if all goes to plan she can start remicade around the 10th October.

M is getting a lot of pain every few days on the left side under her ribs, this has been going on for over a year. So many tests and still no answers to why the pain is there. Gi said very unlikely to be crohn's related as it's not occurring after food. So she needs to have an upper ultrasound again tomorrow.
 
:ghug::ghug::ghug:

I’m sorry I don’t recall but has M never been on steroids before?

Thinking of you both. :heart:

Dusty. xxx
 
I'm sorry that you have to wait so long on the Remicade, and I hope that the ultrasound gives you some answers.
 
The waiting is tough but hopefully will go fast. Is this her second ultrasound? Do you know what they're looking for?
 
Dusty, M has only been on steroids when she was first diagnosed and it was only for a few weeks. The old GI always put her on Flagyl because of her low bone density. She has now been put on budesonide, l don't know why it was never offered to her by her old GI.

awmom, This is her 3rd ultrasound. The GI has suggested her spleen. I just wish they'd find the problem.
 
I don’t get the whole she needs to be on steroids for 6 weeks before she qualifies for Remicade. She already has a proven failure of steroids, 5ASA’s and Imuran.

Just my take on things, particularly in view of the fact that this was not a requirement for Matt and he received approval, but I think they are misreading the conditions and prior treatment...

Failed to achieve an adequate response to prior systemic therapy including:
a tapered course of steroids starting at a dose of at least 40 mg prednisolone (or equivalent) over a 6 week period

http://www.humanservices.gov.au/spw/health-professionals/forms/resources/pb087-1508en.pdf

…it states a prior tapered course of Prednisone, not a tapered course immediately preceding the application.

Matt is the same situation med wise as M. Currently taking Pentasa and Imuran with his only experience of Prednisone being a 6 week course 4.5 years ago at diagnosis.

Dusty. xxx
 
UGH:voodoo::voodoo::voodoo:

Well hopefully the steroids will get her feeling better at least. :ghug:
 
From what l remember M was on a low dose for 2 weeks. Even with the steroids now, she's only taking 9mg. Either way M had to wait 1 month after her next chickenpox vaccine before she can start the infusions.

Had a bit of a sad day yesterday. M had an appointment with an adult endo for her ovarian failure. After going over all her paperwork she asked M had anyone told her that she could never have kids naturally. The last endo told me to tell her but somehow l never had the heart to tell her...now l wish l had told her instead of this Dr telling her. :(
 
So sorry to hear about yesterday--that's rough. We've had a few much smaller things "revealed" by doctors before we had talked to E about them, and it's always hard.
 
Really sorry to hear about your appointment. How did M take the news? I can't even imagine hearing something like that when she's so young, your poor girl.

9mg is the standard dose for Entocort, my daughter was on it too.
 
Aw hugs mama! :ghug: You probably thought you had some time on that one....and I am surprised the doc announced it like that. I mean if you are thinking to ask "has anyone ever told you" I would think you would ask the parents first but guess she just slipped.
 
She seems ok today. Last night she was very quiet and stayed in her room. Poor thing it would be a lot to take in at her age. I told her l'm here if she needs to talk.

We were told the ultrasound was normal but we still have to wait for the Drs report. Still no answer to what this pain is.
 
Sorry to hear things are difficult. It's hard watching them trying to process these things.
 
Oh my upsetmom. :ghug: What a very difficult and sad time you have both had. :(

Sending much love and healing thoughts your way. :heart:

Dusty. xxx
 
Awww upsetmom, I am so sorry to hear that, and I can imagine your heart must have sunk when the doc told her. I think it will take some time for her to process this and I'm sure you and her will have many conversations going forth. Sending warmest thoughts to you both.
 
Upset mom,
I am so upset hearing about this doctor doing that! She really should have discussed it with you first. Please tell your daughter there is a lot of research into this area. There are some women that have had transplants of a piece of ovary from a relative and that has jumpstarted their ovaries into working and they have had babies from that. I will try to find the story and post the link for you.
 
M has been approved for remicade. First infusion is on the 30th and she can't wait.

M got early entry into university to become a registered nurse, not the career l would have chosen for her but l'm glad she's happy.:ysmile:
 
I'm so glad it all came through. I hope it helps.
Congrats on the entry to nursing school for her.
I agree, Is not what I would necessarily push for Grace but nursing does make sense since she's around it a lot.

HUGS
 
Great news! Hope Remicade works really well for her. And congratulations to her on the early entry!
 
Congrats on the early entry to uni. I'm sure she'll make a great nurse. Good luck for the Remicade
 
Way to go M! Our GI told us that kids who have chronic illnesses and have been in hospitals a lot often want to go into healthcare. She even tried to convince my daughter to go to Med School (it did not work).

I'm sure M will be a wonderful nurse. And SO glad remicade was approved - hope it's her miracle drug!
 
The infusion is done at 11am and l was told it would take about 3-4 hours, which would bring us to 3pm. M starts work at 5pm. I'm just wondering if she'll be ok to work or should she change her shift. We really don't know what to expect.:yfrown:
 
My daughter tended to be tired after remicade - starting right after the infusion and lasting a day. She did get Benadryl and Tylenol as pre-meds so perhaps that was part of the tiredness. Some kids are absolutely fine, others feel better immediately -- it really varies. I would change her shift since the it's the first one, after an infusion or two you'll know what to expect.
 
O goes to swim or track practice right after with no problems. But they stopped premedicating her. When she was premedicated she would take a nap in the car then go to practice.

I agree with Maya, since it is the first one switch until you know how she will react.

Good Luck!
 

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