Share Facebook


 
07-17-2013, 12:32 AM   #31
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Blood test done... they took 7 bottles..

Today she said she had no pain after eating.
__________________
Daughter dx CD March2012...
(aged 14)

Currently on:
Remicade
125mg Imuran
3000mg Pentasa
600mg Calcium


Dx Premature Ovarian Failure 2014
On Estrogen and Provera


07-18-2013, 05:29 AM   #32
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Hmmm...7 vials...no pain today. Maybe it is like the old days when a good bleeding was a cure for everything!

Good luck with the results and I hope the pain stays away!

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
07-18-2013, 05:39 AM   #33
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Still no results. They should be back but they never called me.

She had a little bit of pain today but it didn't last long.
I'm just wondering if the bowel is inflamed ....which it probably is. Could the pain be the food passing through the inflamed part. She always seems to have pain in a certain area.

She's had pain like this before that went away on its own with no explanation. It would be good to have an answer.
07-18-2013, 05:44 AM   #34
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
I'm just wondering if the bowel is inflamed ....which it probably is. Could the pain be the food passing through the inflamed part.
Yes and in my son's case, it can also cause bleeding.
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
07-18-2013, 05:47 AM   #35
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Food certainly can do that mum. It can also occur if there is no inflammation but scar tissue is present.

Ugh! Ring them tomorrow.

Dusty. xxx
07-18-2013, 06:47 PM   #36
Jennifer
Adminstrator
 
Jennifer's Avatar
Could the pain be the food passing through the inflamed part. She always seems to have pain in a certain area.
Food, gas and even liquids passing can cause pain where sections are inflamed or even narrow from scar tissue. What type of diet is she on now? Softer foods (soups and stews), more frequent smaller meals and supplement drinks (Ensure Clear and vanilla flavored Ensure powder etc) may help reduce the pain while still giving nutrients.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-18-2013, 09:55 PM   #37
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Blood results are back. Nothing has changed much. ESR is still 37. CRP IS 7 was 2 . She said this might be from the flu . Hemoglobin has dropped a little bit to 113.

She's going to talk to the DR and see if he wants her on a PPI. In the meantime she said to try some tum tums.

She said they might also do a MRE.

Now this is the interesting part...As my daughters been on Imuran for 5 months l asked why her ESR hasn't gone down much and she said at the moment they are only treating symptoms.. If her blood tests start getting worse or symptoms start then the next step would be weekly injections...but they try to avoid this. l thought we were trying to get the disease under control not just control symptoms. She got me so confused that l was lost for words. This didn't make sense to me at all.

Jennifer shes still eating a normal diet but smaller meals.
07-18-2013, 10:17 PM   #38
Jennifer
Adminstrator
 
Jennifer's Avatar
None of my GIs ever just treated symptoms (might as well just hand you some Lomotil for diarrhea and call it a day, so to speak). They wanted to get the inflammation under control with medication and down into normal and stable levels. Allowing small amounts of inflammation over time is just going to build up scar tissue. Might need to have a serious talk with the GI and if they don't seem like someone you can trust then if possible try to see someone else for a second opinion.
07-18-2013, 10:24 PM   #39
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Agree with Jenn. I would ask the GI if she isn't concerned about ongoing inflammation causing scar tissue and malabsorption issues and low HGB. You said treating the symptoms 'for now', why only treat the symptoms for now? What and when is the next step?
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-18-2013, 10:34 PM   #40
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Hey upsetmom,

Little wonder you are confused! Yes, treat the symptoms on the way to getting you into remission! This should not be about waiting for things to get worse before they better but knocking this beast on the head ASAP before lasting damage is done.

If this wait and see approach is the GI's philosophy then perhaps it is indeed time to move to the adult GI??

Dusty. xxx
07-18-2013, 10:59 PM   #41
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
If this wait and see approach is the GI's philosophy then perhaps it is indeed time to move to the adult GI??
Dusty. xxx
Like l said l was shocked to hear this so l don't know who's idea this was.

I've been thinking maybe its time to move on.
07-18-2013, 11:39 PM   #42
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
I haven't dealt with paediatric GI's but I can say that the adult GI's we have dealt with are very no nonsense and proactive.

Dusty.
07-19-2013, 06:06 AM   #43
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
I don't think all your results would be back. You listed them as testing TGN 6MMP this test result takes up to 10 days

This test will tell them whether there is room move to with the aza.

Give it another week and ring for results of this test.

There are a limited number of drugs, and aza is too good a drug to give up on too early. Remember under our system it is very hard to qualify for remicade.

Our next step would also be the weekly injection too.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-19-2013, 06:29 AM   #44
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
I don't think all your results would be back. You listed them as testing TGN 6MMP this test result takes up to 10 days
Thanks Catherine.

She did mention something about testing the imuran next time...Maybe she didn't know that it was tested because l already had the form at home. Also l didn't know it takes that long.
07-19-2013, 06:58 AM   #45
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
I spoke to the lab at a hospital who actually perform the test and they said up to 10 days.

Where was your blood test done?
07-19-2013, 07:09 AM   #46
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
At a public hospital...The nurse who did the test told me all the results would be back the same day as they were all tested there except the Vit D had to be sent to another hospital.
07-19-2013, 02:38 PM   #47
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Routine bloods will always be returned the same or the next day.

Metabolites will always take longer as Catherine has said.

The only other delays we experience are usually with things like zinc or Vit C.

Dusty. xxx
07-19-2013, 03:15 PM   #48
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Thanks Catherine and Dusty l'll ring up on Friday.....she'll wonder how l know these things..
07-19-2013, 03:20 PM   #49
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia


When Matt was at the GI he said that it was pleasing to see the GP was so thorough with the blood testing and monitoring for deficiencies. He then looked up from the papers at me and said...oh, he wasn't, you asked for them didn't you.

Dusty.
07-23-2013, 05:59 AM   #50
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
B12 / Folate / Zinc / UEC / CUP ?
FBC / ESR / CRP /LFT /IRON STUDIES
Vitamin D / PTH / TGN / 6MMP
This is the blood test my daughter had done last week and this is the one they want done in a few weeks before we visit the GI...Do they need to check Vit D...B12...Folate and zinc again when they were normal ?

FBC / ESR / CRP / LFT / IRON STUDIES /UEC / CMP
Vit D / PTH / B12 / FOLATE /ZINC
07-23-2013, 05:46 PM   #51
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
Does anyone know what could cause being full after eating a small amount of food ?

Shes still getting pain after eating....but not all the time.
07-23-2013, 05:50 PM   #52
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Reflux
My oldest has this.
If its not under control by a ppi then he feels full and sometimes has pain.

DS has upper Gi crohn's which is controlled with an h2 blocker/humira -
If his isn't under control same thing
So two different causes and treatment but the same symptoms

Hope she feels better soon .
__________________
DS - -Crohn's -Stelara
07-23-2013, 08:07 PM   #53
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Also constipation or things just not moving well can cause that feeling.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-23-2013, 08:11 PM   #54
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
When my son had a pretty narrow stricture and food couldn't get through, everything would get backed up so after just a few bites he'd be feeling full. He also had pain.
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
07-23-2013, 08:26 PM   #55
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
I don't think she's constipated. But something is definitely going on.

Last night she had just gone toilet and about 10 mins later she was in so much pain.... and she hadn't eaten for awhile.
The pain is always in one area just above the bellybutton.
07-23-2013, 09:36 PM   #56
Jennifer
Adminstrator
 
Jennifer's Avatar
When is she having more testing done to see what's going on inside? You mentioned possibly and MRE before.
07-23-2013, 10:52 PM   #57
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
We have an appointment next month to see the GI so l'll have to talk to him as the nurse keeps telling me its probably acid that's causing this pain. I just bought some Tums as she recommended.... we'll see if they work.
07-24-2013, 02:34 AM   #58
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Hope the tums work and she gets some relief. I remember when my son was diagnosed his pain was always just above his belly button. There were some ulcers at the base of his stomach. Not sure about feeling full after only a small amount of food, sorry.
07-24-2013, 05:21 AM   #59
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
I don't suppose Tums can hurt anything but I hope that GI appt. is coming soon!!
07-24-2013, 05:38 AM   #60
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
I hope that GI appt. is coming soon!!
It's not that soon!..21st August.
I'm going to ring tomorrow and see if they can get her in sooner.
Reply

Thread Tools


All times are GMT -5. The time now is 06:43 PM.
Copyright 2006-2017 Crohnsforum.com