# Update on Dusty's Matt



## Dexky

Hey everyone, I just updated Dusty's thread on Vent Away but in light of how supportive she's been to us all over the last six months, I thought her situation warrants more attention.  

As most of you know her daughter was dxed on the operating table 4 yrs ago with crohns.  Now her son, Matt, has been having troubles.  I just got a pm from her this was the gist of it... GI from Tamworth rang and said he want's to do the Gastroscopy and Colonoscopy on Matt so he is sending up the paperwork. GP rang this morning and said his CRP is now 155 and he thinks it's Crohns! He is going to ring Sarah's old GI in Port Macquarie and have a chat with him about it. 

Dusty is obviously and understandably very hurt and scared.  Any of you who've been around the last several months know how I feel about her.  She's meant the world to me as I have had to come to grips with EJ's disease.  Above all, I hope this just seems silly in retrospect and they discover that Matt's current illness is a passing anomaly but if it isn't, I'll be here for ya Dusty!!  Love ya sis!!


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## Entchen

Dear Dusty,

Want to let you know that I am thinking about you and your dear family as you go through another time of wondering if a family member has Crohn 's. You are an incredible support to us CF members and you will be even more so to Matt as he continues to go through testing and possible diagnosis. Tough job, being the mom, but your kids are SO fortunate to have you.

Warm thoughts,
Kelly


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## Dras

Hey Dusty,

You've helped me so much with the kind words and advice and sort of being a crohns mommy for me too. I'm so sorry that Matt is having problems and that you have to deal with this. You are such a kind, loving and accepting person, and I really hope that it isn't something serious. 

Thinking of you Dusty.

Lots of love...xx


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## Dexky

More from Dusty today.  Matt's ultrasound shows thickening at the terminal ileum.

I'll continue to pass on the info she gives me.  I don't expect she'll be very active on here for now.


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## Manzyb

Thinking of you Dusty!!!!

Thanks for the updates, Mark.  Keeping her and her family in my prayers.


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## Welsh-bird

Just wanted to say thinking of you Dusty and Matt. 
Hope that thing's start to improve soon. 
Best wishes,
Andrea x


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## Dallies

I'm here for you Dusty.   Love ya xxxxxxxxx  :hug::kiss:


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## DustyKat

Thank you all so much for your words and thoughts, they mean the world to me.

Oh man I am just so gutted. I am scared, angry, nervous, you name it. One child with Crohns is bad enough but both, well to say that sux would be an understatement. 

Matt's regular GP was back this week and after his CRP result came back, substantially increased on the previous result, he decided to chat with Sarah's old GI in Port Macquarie. As a result he had an another urgent ultrasound yesterday. The sonographer and radiology doc were both in the room and they said they could visualise the mass the GP felt and it is thickening of he terminal ileum. I don't think I could have felt worse if you had ripped my heart out. 

We go down to Port on Monday and we will have a consult with GI on Tuesday and Matt will have a Gastroscopy and Colonoscopy on Wednesday under general anaesthetic.

This has happened so fast my head is spinning. I am trying so hard to convince myself that since his symptoms have been so mild that they aren't going to find too much wrong and it will be easily treated. 

Riding the emotional roller coaster big time and I just want to get off. 
Dusty xxx


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## Welsh-bird

Hang on in there Dusty (I know easier said than done!),
Sending a BIG virtual hug to you,
Andrea xx


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## bushydougie

Oh Dusty! So sorry to hear about what you and your family are going through. My thoughts are with you all at this difficult time. I truly hope that Matt's tests prove negative but if he does have CD he couldn't have a more supportive mum to help him through this 
Take care of yourselves
x


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## Crohns08

So sorry to hear this! You've always been really supportive of me, it sucks that your son might have this terrible disease too.


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## Rebecca85

I don't really know what to say! I hope Matt's OK, but I know that as a family you can cope with just about anything. Sending big hugs your way!


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## Cat-a-Tonic

Aw Dusty, how awful.  I agree with everyone else in that he couldn't have a more supportive mom.  Hopefully he'll be able to get into remission and lead a fairly normal life, as it sounds like Roo has been able to do (and hopefully he can get there but avoid surgery).  Sending hugs and happy thoughts your way.


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## BigUglyCat

Dusty, darling of our site, thoughts and prayers are with you as you face this difficult time. I've always thought that as frustrating as this disease is for those of us who suffer directly, it is the people who love us who indeed suffer the most. Wishing you the power and the strength to see you and your family through.


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## BLM

Hugs Dusty!! My heart goes out to you, especially seeing my own child go through it.....I couldnt imagine two of them dealing with this. Especially during the holidays this news is unfortunate.....Try to remember what blessings they are and be thankful to have them....even if they are ill. Hugs~


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## lseibert

Sorry to hear about your second child, I will be thinking of you and hoping nothing but the best for you and your family.

Hugs, :hug:


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## crohnicaly stinky

Dusty a big hug from me!  I hope Matt doesn't have CD but even if he does, he should know that he is still very lucky, lucky to have you, a great Mom!   I can't imagine how hard it must be to deal with this. Hang in there Dusty!


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## Manzyb

Still thinking of you,, Dusty!!  I hope your son is doing better.


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## Procyon

I'm sorry to hear about all those. Hopefully you guys get some good news soon. Crossing my fingers that things will turn out for the best.


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## Silvermoon

BigUglyCat said:


> .... I've always thought that as frustrating as this disease is for those of us who suffer directly, it is the people who love us who indeed suffer the most. Wishing you the power and the strength to see you and your family through.


As I said in PM, I totally agree.... there are many days I think it is WAY easier to be the "patient" than the "mum"......




BLM said:


> ....My heart goes out to you, especially seeing my own child go through it.....I couldnt imagine two of them dealing with this....


We have heard many a mum state "I would far rather go through this than have my child go through it"... I am 38 and my mom STILL feels the same....lol  .  

 I was diagnosed 24 years ago.... and my brother was diagnosed 22 years ago.... and was diagnosed as SOON as he started showing signs rather than waiting to "see if it gets better".... and has only had one episode since being diagnosed.....

Even if it does come back that he has IBD, he has a wonderful mum that is going to be able to help in so much, and a sister who is going to be better able to empathize and help him through the tough times.....

Sending big squishy hugs and calming thoughts from across the pond.....


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## DustyKat

*Oh man, what a week.*

Well we are finally back from Port and the results are in..............Matt has Crohns.

He had a consult with the GI on Tuesday and then went for his Gastroscopy and Colonoscopy on Wednesday. The GI spoke to me after the procedure and said they didn't find anything they didn't expect, that being CD in the terminal ileum. His large bowel is clear and there were no abnormalities in his upper GI tract. He then sent him for a CT Enterogram on Thursday as he did not want to push through the area to see how far it extended. We had another consult today and the CT showed the CD is confined to the terminal ileum and extends for 100mm (4 inches), there are no abscesses or fistula's. He has no symptoms of obstruction. 

He has been commenced on Prednisone 40mg for 3 weeks and then taper 5mg every 5 days, Imuran 50mg daily and Flagyl 3 times a day for 1 week. When his TMPT test comes back, and if all is okay, they will increase the Imuran to 100mg. He is to go back to the GI later in January. If the tablets have done the trick (so hoping they do) then we continue with that, if not the GI will apply to the government for Matt to commence on Humira. 

He is struggling at the moment, as we all are, and I don't think being away from home and poked and prodded to the nth degree helped. 

Feeling numb, 
Dusty


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## DustyKat

I don't know what to say, I can't thank you all enough for your kindness and support.

To cut a long story short Matt has been diagnosed with Crohns in the terminal ileum. Matt is struggling mentally, as we all are, but is doing well physically. I just hope and pray the medications do the trick and now that he is home again he will feel more at ease. 

Thanks again everyone, :hug:
Dusty


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## Dexky

Dusty, I'm so sorry!!  I know you are devastated but at least it has been found quickly.  That's very similar to EJ's pred taper.  I hope it does the trick.  Try to get some rest.  I know you've had a rough *three* weeks now.


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## Dallies

Dusty,
I know Matt being diagnoised is a massive blow sweetheart but I am relieved that he has a firm diagnosis and is being treated.  I send you all the love in the world and think of you often.  I am here for you just as you have always been for me. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


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## Lulu

Dusty, I have been following your story and am so sorry to hear about your son.  So glad you were aware of what he symptoms may have been and were able to get him seen so quickly.

I have wondered how prevelant siblings having crohn's is.  I have two brothers who so are have exhibited no problems although according to one brother it is because he never gets close enough to me to catch anything!  Just shows the level of ingorance surrounding crohn's.

I am interested in the tapering of the steroids the GI has put Matt on.  It seems all doctors seem to have different ideas.  I have only recently started Pred although have been on Mesal for 12 months now and when that didnt appear to be helping I was started on Imuran, now at a dose of 100mg.  Doctor says that hasnt helped either so he started a course of pred to try and get the inflammation under control.  I initially took 2 25mg tablets a day for two weeks then 1 1/2 tablets a day (so 37.5mg) for 2 weeks then will drop down to 1 tablet (25mg) a day for 2 weeks and finally half a tablet (12.5mg) a day for the 2 weeks then finish.  This seems to me like a big drop in dosage compared to a lot of people.  Could this me because I have been asymptomatic since the initial problems and if the blood tests didnt continually show that I have a very high CRP then no one would even know I have crohn's.

Also my GI told me that he doubts I would be approved by the PBS for Humira if the steroids dont work as 'I am not sick enough'.   So will be interested to see how Matt goes with his treatment.

Will be following Matt's progress with interest.  At least he has Roo & yourself for great support as I am sure he will need you both to deal with this.


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## Guest

oh heck.. i'm sorry he has Crohns, but i guess at least you all now know what's been causing his symptoms, and you have a wealth of experience with this condition already.. also it sounds confined and not too severe, so hopefully the meds will calm things down very quickly and give him his quality of life back.


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## DustyKat

@ Dex. Certainly a different story between the two! 18 months as opposed to 2 weeks. 

@ Lulu. Hey Lulu, The GI said to me there was a 30% chance of a siblings having IBD. Matt's second cousin that has CD has two brothers that have no IBD I think I convinced myself that Roo was it in our family, I now know how wrong that was. 

The only circumstances that I have dealt with Pred have not been related to IBD but nonetheless they all involve tapers of 5mg at a time, so not sure with your GI. I don't think the lack of obvious symptoms would have anything to do with the way you taper off Pred. The GI today seemed to indicate that it would just be par for the course that approval, for Humira, would be given if he applied for it. To be honest Matt hasn't been that sick, other than a couple of random vomits he has only had his raised CRP and twinges in the RIF area as symptoms. If Roo didn't have Crohns I wouldn't have asked for inflammatory markers to be done and under different circumstances I wouldn't even have taken him to the doctor as his symptoms were so mild.The pain couldn't have been that bad since every time they palpated the area he didn't flinch and would just say ~ yeah, it's a bit uncomfortable there. 

I hope all goes well for you and the meds kick in and get the CRP under control. Keep us posted!

Dusty.


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## georgiegirl

Oh Dusty I'm so sorry you have to deal with this AGAIN!!! But at least you know what you're doing - you've got a wealth of experience and I'm sure you can handle this. You're so competent!!!

Sending you and your family the BIGGEST of hugs!!!


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## Jessica

Dang it, Dusty.  I'm so sorry.  I know that you're strong, but I know this has to be taking it's toll.  Remember that you are a wonderful mum.  You can get through this.  We're all here to help!  <3


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## Stacyface

Dusty:
You are one amazing mom...hang in there.  
xoxo


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## Rob

That's crap
pity it couldn't of jus been a nasty bug that a pill could of fixed
but atleast you now know what it is an with past experiance with roo you know how to handle/approach things
good thing you were on the ball an dx it quickly, now maybe he can slow things up an get into remission quickly 

Best wishes to ya all dusty


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## Cat-a-Tonic

Dusty, so sorry to hear your son has Crohn's too.  I don't have children of my own but I can imagine it would be heartbreaking to go through something like this.  My thoughts are with all of you, and I hope he can get into remission quickly.  Sending lots of hugs your way!


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## Rebecca85

Sorry to hear he has Crohn's, but at least you know what's going off, and it sounds like you've caught it early. Let's hope the meds work, and he gets remission soon!


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## bushydougie

So sorry to hear this news Dusty. I was really hoping that it was something else...
At least he has a fantastic, supportive mum and a sister wih whom he can discuss and vent about CD with. 
Please make sure that you take care of yourself as well as your children. It's been a tough few weeks for you too!
x


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## Mayflower537

Sorry to hear this, Dusty.  My thoughts are with you and your family.


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## crohnicaly stinky

Dusty,

Sorry to hear about Matt's dx of Crohn's.  With just a little luck the meds they give him will keep him in good shape and he'll be able to follow his dreams.  I know it's hard to take and it's a bummer and it changes the way you see life.  Heck I gave to the Jerry lewis telethon this year for the first time in along time,. why?  because I just said to myself hey now I know what it's like to have a disease.   So it changes your perspective a little but by all means Matt can do so many great things and this is not the end at all.  It's tough right now but you will all manage, all of you and be just fine!   Hugs to you Dusty you're a great lady and I hate seeing you go through this.  It's probably harder to imagine abdominal pain than it is to grit through it, so you as a care taker have it rough in that regard.  But just be at ease some, he can find his peace with CD and do great things with his life!


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## Entchen

Dear Dusty: So sorry for you and Matt. Keep on plugging -- you can do it.


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## Kathryn

Dusty, 

I'm sorry that Matt was diagnosed with CD, too.  You're one hell of a mom and I have no doubts, from reading your posts on here, that you'll take this, like Roo's disease, in stride with class, knowledge and only the occasional freak-out.

You and your children are in my thoughts. 

-Kathryn


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## amirah

dusty... sorry to hear your son has crohns aswell thinking of you and your family always.

love amirah and leya


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## ameslouise

Hi Dusty - So sorry to hear this news.  Having already been thru it doesn't make it any easier as a parent, does it?

Sending big hugs your way.  Hang in there.  You are a wonderful Mom and at least your son is lucky in that regard.

xo - Amy


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## Christy

I hate that this happened for your son. He is lucky, yes, to get such a prompt diagnosis so the care could begin, but still .... it just absolutely sux that your family has to deal with so much.  Not fair, not fair at all.


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## Nica

Dusty, 

I am so sorry your son has it. I feel for you. If there is anything I can do please don't hesitate to ask. Thinking about you and your family.


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## BLM

Big Hugs Dusty!! I know how you must be devistated, but atlease youve been through it thus far. Your a step ahead with Matt, unlike your surprise with Roo!! Keep the faith and just know that Roo and Matt will become so much closer, and a wonderful support to eachother. You and your family are in my thoughts and prayers~


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## DustyKat

Thank you D, Mayflower, Stinky and Kelly.

Your kind words, thoughts and wishes truly have helped me these past few days. I still feel like I am in a fog but I guess as time passes the fog will eventually lift. 

Love to all, :hug:
Dusty


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## DustyKat

Thank you so much guys!!! 

Reading your words really does ease the pain and give me hope that we will triumph over this. Matt is feeling better and has next to no pain now so that is good, perhaps a sign that things are settling. Thanks again for your wonderful support, I feel I can start and believe in myself. 

Lots of love, :hug:
Dusty


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## STLGirl

Sweet Dusty,

I can so relate to your motherly pain.  When your babies get sick (no matter how old they are), the pain of a mother is unmeasureable.  It's the worst gutted worry I have ever felt.  So from one mother with a previously sick child to another please know that I feel your pain too.  You and your family are in my thoughts and prayers.


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## lynx

Dusty I have been following what has been going on and you and yours are in my thoughts and well wishes. It sounds like he is doing ok now.  I hope he stays that way for a long, long, long time to come!


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## clearwell

Hi Dusty,so sorry to hear about your son.I do hope he continues to feel ok.Best wishes
and love to you all x


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## Mountaingem

Hi Dusty-I'm really sorry to hear your son's diagnosis! But I'm glad he's getting the right treatment and on the road to recovery at last, that waiting with no answers is just unbearable on any parent, much less the patient!

Sending hugs and healing thoughts to your family! :hug:


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## Astra

Hiya Dusty

I've been off line for a few weeks
so sorry to hear this news about Matt, but he'll do just fine with a Mum like you!
And the Pred will work wonders on him, it saved my life, it's a fab drug.
big hugs to you all, stay strong Dusty, you're doing just great!
xxx


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## DustyKat

Thanks again everyone for your well wishes and support. :rosette2:

Matt seems do be doing well physically but psychologically still struggling a bit. Still has a little bit of pain at times, he went to the GP for bloods yesterday and he can still palpate a mass. Got the blood results today and they look good. White cell count is up but I assume that is the Pred as the doc or GI didn't say anything about it. ESR up a bit as well but still in normal limits. CRP is back down to 52 and Haemoglobin is down. I picked up copies of all his letters and results as well and found the biopsy results. They couldn't find any granulomas in the tissue samples but still said they were indicative of CD. The small bowel showed mild disease and the terminal ileum showed very mild disease, YAY! I was so hoping there would be something positive to come out of all of this. 

Continuing to keep my fingers and toes crossed that he responds well to treatment. 

Thinking of you all, :hug:
Dusty


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## Jerman

Hi Dusty, I have not been on very often so just found this thread. I can only imagine your grief when finding out both of your babes have this awful disease. I hope with all of my heart that the three of you are symptom and pain free very soon. Sending you a big ole jerman hug   ((((((((((HUG)))))))))))


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## Manzyb

Hey Dusty!!!  I have been thinking of you, Roo, and Matt.

That is great to hear that he has mild disease (well, not great, but since he has to have the darn disease, at least it's mild!!!)  I am sending plenty of well wishes.  I hope he responds great to his treatments and gets back into action soon.  

Does he feel much comfort talking to Roo about different experiences and things like that?  

BIG HUGS DUSTY!!!!!! 

amanda


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## Dexky

Hey all, I just got a note from Dusty.  Apparently Matt is having abdo pain again and has been admitted to hospital.  Had bloods, X rays and Ct scan. No change from last time and no sign of obstruction. They rang the gastro doc and he said he is most likely just having a flare so be in for a few days of IV antibiotics and hydrocortisone.


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## amirah

dexky thanks for the update ..... dusty i hope matt will be ok and he he is back home soon.


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## lseibert

Thanks for the update, I'm so sorry to hear that Matt had to stay in the hospital. Hope that he will be out quickly and home for the holidays.... 

:getwell::getwell:


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## clearwell

Thanks for the update,Lots of love to Dusty and her family and hopefully things will go well for Matt and he will be home soon.xx


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## DougUte

Oh Dusty, I am so sorry to see this thread. Just know that you and your family are in our prayers. It sounds like they caught it early.


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## Dexky

Matt is still in the hospital. More news from Dusty....


He continues to have IV antibiotics and Hydrcortisone. He is feeling good physically but struggling psychologically with being here and with the surgeon talking about him being on an elemental diet for a couple of weeks...........hmmmmm just not the right time of year for hospital and liquid diets! 

The surgeon is a locum but seems very knowledgeable about CD and Dr Gillespie is happy with the treatment plan. The surgeon is an English guy and had a lot to do with IBD in a gastro unit in Cambridge. He looked at the scans and he said there was a transmural perforation, albeit very small, and that's what caused the pain plus inflammation of the adjacent muscle which accounts for the leg/groin pain. His CRP was 352 Saturday and his white cell count was 23.1 but were significantly reduced yesterday. 

Matt says he is feeling much better but that only adds to his desire not to be here!


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## Entchen

Dusty: Best wishes to you and Matt. I'm so sorry that he is struggling. Hugs to you.


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## Manimation

Best of luck on him getn outa there.  I know how damn anxious I was to get out once I was feeling better.  Starting to think a restricted diet may be what I need right now too.


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## DustyKat

Thanks Dex for posting updates! and again thank you everyone for your well wishes.

Surgeon has been in and is pleased with his progress so IV has been removed and he has commenced on oral meds. He wants him to stay in another couple of days for observation and hopefully all continues to go well and he will be home Thursday or Friday! YAY!

Matt is so happy to have the IV out and I think he is finally starting to see light at the end of the tunnel. 

Feeling much happier, 
Dusty


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## fateful_one

*Holy Crap*

DustyKat - I was reading some old posts when I came to this thread...and OMG what unbelievable bad luck.  It is so completely and utterly unfair that both your kids have Crohn's! I can't imagine what you've been going thru, but hang in there.  When it rains, it pours - but it can't rain all the time


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## georgiegirl

So glad progress is good, and very excited that he should be home for christmas! He may not be able to eat christmas dinner, but I'm sure you've got something lovely for him under the tree!


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## DustyKat

*Home at last!*

Thanks fateful one and and georgiegirl!

Well we are finally home on Christmas Eve. Matt is feeling really good and is so glad to be home. He has no pain and is allowed to eat! We will be cautious though and take things slowly. 

Hopefully the stint in hospital has calmed everything down and we can move on, if not his GI, who is on leave at the moment, wants him sent to Sydney so I hope it doesn't come to that! 

Sending everyone best wishes for a very Merry Christmas and a very happy and healthy New Year. 

Lots of love, :hug:
Dusty


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## Dexky

Awesome news Dusty!!  Merry Christmas!!


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## clearwell

Great news Dusty and a very Happy Christmas to you and your family and a very Happy Christmas to everyone out there. x


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## Manzyb

I'm glad Matt got to come home and can eat!!!  Merry Christmas Dusty to you and yours.  Hopefully, Matt and Roo can enjoy the holidays and have a healthier new year!!!


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## Zoodles

Great news.  I hope that Matt is feeling better every day.


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## My Butt Hurts

Wow - I completely missed all of this, and then I saw your changed siggy and went searching.  Sorry about the diagnosis.  Glad you made it home just in time for Christmas.  They are both lucky to have you.
MBH


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## Jerman

Hey Dusty, so sorry I haven't been in touch-missed all of this, wishing for you and the whole family that the New Year brings healing & happiness.


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## DustyKat

Thanks so much guys, all your messages and well wishes are most gratefully received. 

Matt seems to be holding his own. Still has what he describes as tightness over the terminal ileum area that is only present on movement but other than that has no other symptoms. Sometimes he looks quite well and other times deathly pale but he says he feels he is getting better, keeping my fingers crossed, keeping my fingers crossed, keeping my fingers crossed.....  Doc rang me with his TPMT result today and he has the enzyme in sufficient amounts so his Imuran is now up to 100mg. 

He is having a few days break in Sydney and will be off to  the cricket tomorrow with Roo, not my cup of tea so I will go shopping instead.....YAY! 

Lots of love, 
Dusty


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## lseibert

Dusty,

Thank you for the update, I hope that he will only get better!! And it's good that you all are getting a break, enjoy.......


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## Dallies

Hiya Dusty,

Sending all my love.  Thinking of you all.  Enjoy your break with Roo.  Meg doing really well with her 100mg of AZA, vit B12 injections and vits A and D! 

Love to all xxxxxxx


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## mario

Hi Dusty
I am from the UK
So glad your kids feel up to enjoying the cricket!
My son is in Australia and will be in Sidney tomorrow (your today) for the cricket. 
Small world. Hope it all works out for you and yours x x


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## DougUte

Hi Dusty.  Glad things are going well for Matt and y'all. Hope for a great 2011.


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## DustyKat

*Hi Ho Hi Ho it's back to hospital we go!*

Thanks guys!.............

Well Matt didn't make it to the cricket and I didn't get to go shopping......

Matt had been staying with Roo at the uni since it's close to the cricket ground, she rang me yesterday morning to say Matt was in pain and he had vomited. It was a no brainer so we ended up at RPA hospital which is where his GI in Port wanted him to go should things worsen.

His white cell count was through the roof and they were convinced he must have had an abscess but the CT once again showed that this wasn't the case but he still has heaps of inflammation. They are going down the same track as the docs up home did and they feel the inflammation may be masking a micro perforation. Surgery still hasn't been ruled once they get the inflammation under control so we are taking it day by day. They have said he will be in for at least 10 days and may well stretch out 14. Back to everything IV and NBM. 

One good thing to come out of the day was Roo ended up going the cricket, which I'm glad she did as she indicated to me she wouldn't be going. She took a friend with her, who is Chinese, and she had never seen a cricket match, turns out they had a fab time! YAY! 

@ Mario. Did your son enjoy the cricket? He should have 'cause you lot have more to cheer about than we do! :ylol:

Lots of love, :hug:
Dusty


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## DustyKat

Well Matt had his follow up CT  Scan today as the docs felt his white cell count on admission couldn't be that high without something brewing. Now that the inflammation has reduced somewhat they found the abscess (5cm x 7cm) they were looking for. A bit of a double edged sword really, I don't want it to be there but at least we know what we are dealing with. He will have a drain inserted tomorrow and they seem to be leaning to the fact that he has a fistula but since they can't visualise it must be a micro perforation. I asked why they thought this and they said because they could see air outside the bowel. If that is the case then he will continue with the IV meds (Hydrocortisone, Flagyl, Ampicillin, Gentamycin and Paracetamol) a little longer and then stabilise him on oral meds before discharging him, at least another week. The drain may stay in for a few weeks if it is a fistula, we'll just have to wait and see and they still haven't ruled out surgery in a few weeks/months time.

I think one of the worrying things they said was the crohns was flaring in about half of his small bowel but it has settled significantly since last Thursday. Matt has handled all the news very well but none the less I asked him if he wanted something to help relax him tonight and he said yes so I have asked the doc to give him something. 

To throw even more docs into the mix, when they did his obs early this morning his pulse was 38 and it threw everyone into a panic, he had 2 ECG's and I kept saying is pulse normally is only 40 - 50, they had no choice but to follow protocol and a pulse rate below 40 is an automatic referral. So to add to all the other docs he's had the Cardiologists come a couple of times today just to be on the safe side!

Dusty.


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## Guest

a mother's instinct is so strong, and usually correct - when you said earlier that one day he looks ok, and another looks pale, i did wonder if things were going as well as he felt they were 

at least now they've found the abcess, and possible other reasons for him being so below par recently, & it sounds like he's getting excellent care & attention.

i hope everything settles down properly and quickly - keep on updating us - we're all with you. x


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## Dexky

No wonder Matt loves soccer, I bet he can run for a week and never get tired with such an athletic heart rate!!  

And when that mother is a veteran nurse whose seen this thing already with one child, that intuition is unquestionable.  I know nothing will be missed.  Matt's in the best of hands.

No need to say "hang in there", I know wild horses couldn't move ya.  Thanks for the updates Dusty!!


----------



## STLGirl

Thanks for the update Dusty, I was just thinking about Matt last night.  You are such a great Momma!  You have us all here rooting for you, worrying for you and praying for you (and Matt).  We are all in this together 
Lots of Love Comes your Way.....


----------



## DustyKat

Thanks Ding, Dex and Sara........:hug:

Matt had the drain inserted today and all went well. A bit of pain when he got back to the ward but a bit of Morphine knocked that on the head and he is now feeling pretty good, YAY! The Youth Consultancy Team has been visiting him and brought him a Playstation and some DVD's, tomorrow they are bringing maths puzzles! :lol2:
He was also pretty happy that his English teacher and school Principal rang today and had a chat with him...............it's all helping to lighten the load and keep his spirits up. 

He will go for a Sinogram in a couple of days to see if he does have a fistula, boy wouldn't it be great if it turned out he only had an abscess, funny the things you wish for ay...........oh well I will have my fingers crossed!

Thanks everyone for keeping us in your thoughts and prayers. 
Dusty


----------



## Guest

glad to hear things are sounding a little happier - and that he's got someone bringing things in for him to do - those hours in hospital are slower than the ones outside, i swear!

keeping my fingers crossed for him too  xxx


----------



## Dexky

Math puzzles, hah, probably the first thing he asked for!!  Was Matt ever able to take his final exams?  Glad things are looking up Dusty!!


----------



## Astra

Hiya Dusty

Sorry, I've not kept up todate with this! I've just read it all!
Thank God, it's looking ok at the mo, and it would be with a fantastic Mum like you!
I hope he doesn't have a fistula too, so have everything crossed for him!
Take care of you too Dusty, we don't want you hitting the deck with exhaustion!
Big hugs you way, for all of you!
xxx


----------



## StarGirrrrl

Thanks Dusty for taking the time to keep us updated


----------



## Manimation

I'm finally back after a long christmas break and this was one of the first threads i went back to check on.  How old is Matt again?  I thought I went through a bunch as a kid.  Hope things are looking up!


----------



## DustyKat

Awww thanks guys! :blush:

Planned discharge date is the 19th and he is over the moon 'cause the IV was removed today! YAY! He will go for his sinogram Monday or Tuesday and I guess that's when we will have a clearer idea as to what the future holds and when. 

I have decided to spend an extra few days in Sydney after discharge so Matt at least has the opportunity to do a few things, I don't want this whole trip to be just a hospital visit!



> Was Matt ever able to take his final exams?


Hey Dex, No Matt hasn't had his uni exam yet but when I spoke with the lecturer he gave plenty options as to how he could sit the exam, like taking it as an oral or the lecturer would come down to our place and he could sit it at home.  He has until the 30th June to sit it. 

He wants to continue to enrol in the same amount of units as prior to his illness and I can see where he coming from with this. I think he feels he needs to have some level of control over the disease and if things don't go according to plan because of the CD then he will be able to accept that but if he pulls back because of the what ifs then that is something he wont be happy with.



> How old is Matt again?


Hi Manimation, Matt is 17 and yeah things are finally looking up, I think he is finally seeing light at the end of the tunnel. Even going home with the drain isn't worrying him and being a nurse has it's pluses 'cause it's no problem to me to look after it. 

Lots of love, :hug:
Dusty


----------



## Zalanicht

Wow Dusty just read all what's going on about your son! I'm sorry to hear he's not doing well but I wish you guy's all the best of luck.
I say again it's awesome how involved you are with everything it really helps the Crohnie that's going through everything to have someone.

Zal <3


----------



## Dexky

Thanks Dusty!!  Just glad to know things are going ok!!  Has Sarah been by to see him?


----------



## DustyKat

Hey Zal! Hope all is going well with you and you are keeping well........

Yeah Dex, If she hasn't dropped by to see him she has been ringing and engaging him in some pretty one sided, mind numbing conversations! I swear that girl can talk under water with a mouth full of marbles! But really she as been fab with him, I whacked him in a wheelchair yesterday and we went up the town and had lunch and a few hours out just the 3 of us, it was lovely. 

Matt continues to do well and he is looking better at present than he has for quite a while, so hoping it continues that way!

Dusty.


----------



## Guest

DustyKat said:


> Matt continues to do well and he is looking better at present than he has for quite a while, so hoping it continues that way!
> 
> Dusty.



great news!!


----------



## Dexky

DustyKat said:


> Matt continues to do well and he is looking better at present than he has for quite a while, so hoping it continues that way!Dusty.


Or as Dusty would put it....:banana::banana::banana::banana::banana:


----------



## AZMOM

Dusty - I'm so glad things are looking up for Matt.  You are one strong Momma!!!!  And I'm going to have to borrow that phrase "can talk underwater with a mouth full of marbles" - that's a good one!

Julie (Claire's Mom)


----------



## DustyKat

Thanks Ding, Dex and Julie..........

Well Sunday afternoon here and we are patiently awaiting the sinogram tomorrow. The docs said today that it is in the morning so that's good! 

Matt is feeling well and has developed the steroid munchies, which is just as well 'cause he's thin as a stick and he now actually has more colour in his face than Nicole Kidman! :ylol:

Will keep you posted of the outcome and with any luck will be discharged in the next couple of days ..........woohoo!!!

Dusty.


----------



## Entchen

Just checking in, Dusty. What a tough road for Matt so early on in diagnosis; how helpful for him to have you all along for the ride.

Thinking of you!

-Kelly


----------



## Trev

great news Dusty fingers crossed


----------



## Dexky

Hope you're out soon!!...but with the right answers this time!!


----------



## Manzyb

I'm glad he's got the steroid munchies!!  I remember last year when i was really sick in the hospital and finally felt like eating! My husband brought me cheesecake every day :0)  

I hope you guys get some answers and he gets to get the heck out of there!  (feeling great of course).  

Hugs to you guys!


----------



## DougUte

Hey Dusty, glad to hear things are progressing, and that Matt should be released this week. Hope things continue to go well.


----------



## DustyKat

Thanks heaps guys for your continued well wishes! It really does help to know you are there and keeping us in your thoughts.........

Now..................bugger, bugger, bugger...................the sinogram results are in and he has a fistula. Can't reeeeeally say it's unexpected but it's nice to live in hope at times (((sigh))).

Haven't seen the Prof yet but the senior registrar dropped by and had a chat with Matt so all the major talking and decision making will be done in the morning. The registrar said it is highly unlikely the fistula will close now so surgery is looming as the only option. He will go home with drain and that will stay insitu until he has the op and I forgot to ask when he can go home!!! My only saving grace is the registrar probably would have said we will have to ask the Prof when he comes. 

We did discuss where the op would take place and I opted to have it done here by the colorectal surgeons as opposed to somewhere close to home with a general surgeon. 

Still hoping for the 19th as the discharge date!!!!!! and wishing myself luck :ylol:

:goodluck::goodluck::goodluck:

Dusty.


----------



## Guest

aw  sorry to hear the news is what you were hoping it wouldn't be - but at least now you all know what you're dealing with, and there's a way to sort it out - to me, i'd be looking on this as the step in the right direction Matt's been waiting for.. i know it's scary to be facing surgery, but after that he'll be on the road to recovery and to getting his quality of life back.

((hugs)) to you all.. and you know we're always here for you.x


----------



## Dexky

Sorry Dusty!!  Well, at least we know why he keeps getting ill and they can now take the right action.  How long do you think it will be before surgery?  Can he eat real food?

I know you're exhausted, I hope he gets out soon!!  Good luck!!


----------



## Manzyb

So sorry for Matt, Dusty.  Maybe after he has the operation he will feel well for a long long time!  Keeping you guys in my thoughts and prayers!  BIG HUGS!!


----------



## DustyKat

Thanks Ding, Dex and Amanda,

Well the Prof visited and we are set for discharge tomorrow........but then Matt developed abdo pain out of the blue..................bugger, I hope it doesn't affect our chances of going home tomorrow. The docs will be back in again this arvo so here's hoping! He had a shower this morning and it seemed to start after that, had Endone but that didn't seem to do anything so I flushed the drain in case it had moved around a bit and then the pain seemed to subside, so who knows, was it the flush or the meds that made a difference or both or neither!!! (((shrug)))

The plan is to come back for a consult in about 6 weeks with a view to surgery in about 8 - 12 weeks. Fingers crossed it all goes according to plan!

Dusty.


----------



## Dexky

So does the drain stay in place until surgery?  Will Matt be able to start school?  It seems like quite a wait!  Hope you guys get to go home on schedule!!  What a turn of events!!


----------



## Manzyb

Ahhh!  Hopefully he's still going to be discharged so you guys can go home!    That does seem like kind of a long wait.  Maybe it will heal up before then and he won't have to have surgery!!  WISHFUL THINKING!


----------



## DustyKat

Hey guys,

Well we've had the privilege of spending another day in hospital :voodoo:. Can't say I'm surprised after yesterday and the docs are erring to caution 'cause we live so far away. (((sigh))). On the upside though Matt is back to his normal self today, only thorn in the side is his drain has started to leak where it enters the skin (not much, mainly when it is flushed). The Prof has just stopped by and had a long chat with him about the future and he isn't concerned about the leakage so that is fine with me. He says it will most likely take up over time. 

The reason for the long wait is when Matt came in to hospital the CT showed that half his small bowel was inflamed. When he had the sinogram the inflammation had reduced significantly. They are hoping that medically they can reduce the inflammation back to that original 100mm and operate on that section alone as that is where the fistula is located. You're right Amanda .......wishful thinking :lol:! 

Yeah Dex, the drain will most likely stay in until he is operated on, assuming he responds to meds. If not then I guess they go to plan B, whatever that is. Matt will start school and uni as planned. 

The Prof asked if we wanted to come back here and when I said yes he seemed very relieved. I asked why and he said that quite a few people fall in love with their local hospitals and the doctors there and so prefer to go that way. I would have thought that having top colorectal surgeons and IBD specialists would have been the way go!!! After all they have all been really nice guys to boot. :confused2: Oh well each to their own. No doubt when I get all the discharge papers I will find out when all the follow up stuff is. 

Looking like tomorrow might be the day! 

Fingers crossed, 
Dusty


----------



## Entchen

Fingers crossed for tomorrow for all of you. Keep on plugging, Dusty.

Yes to top surgeons over feel-good local general doc! Wise choice. I have zero experience of surgery, but I've had moles removed by a plastic surgeon and moles removed by a GP (who thought plastic surgeon was overkill), and I'll tell you which scars get looks and comments! For surgery? There is no overkill!


----------



## Manimation

This thread should be a sticky by now.  Wishing yall luck on the hospital break!  That's like a jail break, except a hospital.  What I'm saying, is bust outa there!


----------



## DustyKat

AAAAAAAAAArrrrrrrrrrrrrrrrrrggggggggggggghhhhhhh..........

Docs have just been in again and his white cell count is back up to 24! We will now have to wait till he has bloods again tomorrow and if it hasn't gone down they are talking about putting the IV back up but ultimately it will be up to the Prof. Poor Matt is now on a major downer.  Ugh the kid just can't seem to take a break.

@ Kelly, agree with you 100% there! Nothing but the best.....:lol:

@ Manimation ~ Please get over here now and help us break out!!! :voodoo:

Dusty. :yfaint:


----------



## Dexky

Oh no, sorry Dusty!!  I know it's tough on both of you.  Fingers crossed for tomorrow!!


----------



## crohnicaly stinky

Dusty,  Sorrry to read about Matt's continuing struggles.  I'm sending some positive energy your way, I hope it helps!   Hang in there dear, you must be just so worn out from all of this.


----------



## DustyKat

Send away stinky, I reckon we can use all we can get! 

%#*$&*(%$@#&*..................

Team came in this morning and said Matt could go home....YAY!. So we packed up and he was seen by all and sundry, we were given all our supplies and medications and were waiting for the discharge papers when the registrar walks in in his scrubs and I said to him....." Oh hell this is gonna suck!". 

Turns out Matt's bloods today are worse than yesterday, WCC 26 and CRP 200, but he feels well and has no pain or fever. He is to have a CT Scan in about an hour. If they find further abscessing I am guessing the drip may go back up, not sure about the drain. If they can only see inflammation of the bowel then he may still be able to go home tonight. No doubt it will all rest with the Prof. 

Can Matt and I get off the merry-go-round now??? Pleeeeeeeeeeease.

Dusty.


----------



## DustyKat

CT Scan showed he has another small abscess but it is too small to drain. Back on IV antibiotics for the next 3 days and then review Monday. If his bloods indicate he has responded well then they will give him one more chance at treating this flare conservatively before moving to surgery at a later date. If he hasn't responded well by Monday then he will most likely go onto TPN and have surgery the week after next. He may also end up with a temporary stoma. 

The surgical team will be having a meeting in the morning with Gastroenterologists and then the Prof will come and speak with Matt. 

It's a lot for Matt to take on board. I took him out for tea and we had a long talk about what they said and he asked me about Sarah and what she went through. I am still amazed at his ability to cope with all that has happened and may happen and his determination to see the positives and move on. 

Dusty.


----------



## Dexky

Ugh, now they're talking stomas.  It's not a merry-go-round, it's the Twilight Zone!!  Sorry for you both!!!!!!


----------



## AZMOM

Dusty!!!!!!!!!!  That DOES suck.  :-(  I'm so sorry and I know you'll keep us posted.  

Thinking of you both - Matt sounds like an amazing kid.....


----------



## Manzyb

Gosh Dusty ,I'm sorry   It sounded like things were going better.  That really sucks with all of this stuff.  Dexky is right, it sounds like the friggin' twilight zone!!!    I keep thinking about you guys.  Hang in there and I always look forward to hearing updates from you!  BIG HUGS!!


----------



## DustyKat

Thanks guys. :hug:

Matt continues to feel well and his WCC and CRP are dropping so hoping for good news on Monday.

Oh man I am just feeling incredibly pissed off at the moment. When we got such a quick diagnosis with Matt I was thinking, well aside from how much it sucked, that at least we should be able to knock it on the head pronto and he won't have to put up with all the shit Sarah went through. F*%$ this disease. 

Okay, now I've got that off my chest I'll think about where to take Matt for lunch today....... (((happy thoughts, happy thoughts, happy thoughts)))! 

Dusty.


----------



## MADiMarc

Dear Dusty,
When the numbness wears off Matt will still have the best supportive mum.  My thoughts are with you and both of your children.  Remember to take care of yourself during all this please.  You are way to important to way too many people to succumb to illness due to stress!
Michele


----------



## STLGirl

I haven't been here for a while due to the death of a dear friend.  But I'm so sad to hear all that you and Matt have been going through.  Bless your hearts.  Matt is growing up quickly with this damn disease!  My thoughts and prayers continue for all of you.  And like Michele said, make sure to take care of yourself Dusty.  We love you and admire you from afar


----------



## Stacyface

MADiMarc said:


> Dear Dusty,
> When the numbness wears off Matt will still have the best supportive mum.  My thoughts are with you and both of your children.  Remember to take care of yourself during all this please.  You are way to important to way too many people to succumb to illness due to stress!
> Michele


I second the motion....Take care of yourself Dusty.  You have really been thrown a another curveball. Stay positive.  Stay positive.  Stay positive.  That is so hard to do when you are in this awful place and have been "mommy drained" with all you have gone through with Roo and now Matt.  What you may not realize is that you show so many of us how to manage this illness mentally. Attitude is everything.  I can't speak for others, but you are my hero... So curse a little more, punch a few doors, and then go back to being the supportive and strong mum you are.  :hang:


----------



## DustyKat

Oh my Michele, Sara and Stacey thank you so much for your lovely words..........:blush::blush::blush:

Well Matt's IV can finally come down today, YAY! He feels well, looks well and has no pain but I said that last time too didn't I . His bloods are just about back to normal so he will go to oral antibiotics and if his bloods stay in positive territory then he will be discharged Friday! Man I hope that happens 'cause we are so hanging out to get home! If things go topsy turvy again then we will be here until he has his op. 

Oh well it's Australia Day here and at least we will be able to see the fireworks on the harbour from the hospital! Well to be honest the last few days haven't been too bad 'cause the IV's been capped between doses so we have been out and about quite a bit, sure makes the days go faster. 

Dusty.


----------



## Rebecca85

Fingers crossed for you both!


----------



## Dexky

Well, as a natural worrier, every time you don't update for a few days, I think the worst...actually I just start bugging Roo!!  Glad things are still going well!


----------



## Manimation

Sending my thoughts as well.  Glad to hear things are turning around in this Saga of the Ouchback.  You like that?  Yeah, I'm wordsy.  Hope the fireworks rocked!


----------



## clearwell

Sending my best wishes to you all too and long may the good luck continue.xx


----------



## CDDad

Best of luck to Matt - I hope things are still going well and he can get home soon!


----------



## Astra

Hi Dusty

Sorry, I keep missing this thread for some bizarre reason!

I've only just read about Matt's possible op. I'm sorry it's come to this.
I really hope he can go home asap, just to give you a break, if nothing more!
I wish you all the very best and I'll be crossing everything for you
love lots & lotsa hugs
xxxxx


----------



## Manzyb

Thinking of you Dusty and Matt.

Hope you enjoyed the fireworks!!!!  


Glad that again things are looking a little better.  Hang in there and hopefully he will get to go home soon!! 
:bigwave:


----------



## DustyKat

@ Rebecca, thanks hun for your well wishes.

@ Dex, stop badgering my daughter!!! :lol: Thanks mate.

@ Manimation, Thanks buddy but don't give up ya day job! :ylol:

@ Clearwell, Thank you so much and I will gladly take all the good luck I can get! 

@ CDDad, Thanks mate and we sure are looking forward to getting home. 

@ Joan, Haha no worries Joan. The op is a given, well short of a miracle, it's just a matter of whether it's sooner or later and hopefully it's later! 

@ Manzyb, Thanks hun and the fireworks were great! Hope all continues to go well with you and the bub and I see you are going to name her Sadie, bugger I lost! Nah just kidding. I bet you two are so excited and I'm so happy for you both. 

On the docs round this morning I was pushing hard for a definite answer about tomorrow but they wouldn't commit, hell I didn't expect them too but I had to try didn't I? hahaha. 

Matt still going strong and it will all hinge on his blood results tomorrow, oh well either way there will be a definite answer as to which path we take and I'm hoping it's the path home for more reasons than just to get out of the place. It's kinda sad in a way in way because Matt has given up on hoping for the best. I mean he's okay and all that but I guess he's being realistic but in doing so he not allowing himself to get his hopes up. Hell does that even make sense! Man he could so do with something going his way. 

Anyway on a more positive note we are off to the city for the day so I should be able to keep him off the ward until about 9:30 tonight so that's gotta be a plus, woohoo!

Thanks again guys, you're presence is a godsend. 
Dusty


----------



## Dexky

DustyKat said:


> @ Dex, stop badgering my daughter!!! :lol: Thanks mate.


She's a much more reliable info source than some people!!  I just hope she doesn't think I'm some creepy old dude, so don't tell her anything Dusty!!


----------



## Entchen

Yes, he COULD use something going his way, and we'll look forward to hearing when that happens. In the meantime, sending wishes for small moments of joy and steady improvement in symptoms.


----------



## littlemissh

Hope all goes as well as you hope for today and you and Matt get a plan of action. Also hope you enjoyed your day of freedom yesterday!


----------



## DustyKat

@ Dex, She already knows you're a creepy old fart! 

@ Kelly, Thanks heaps Kelly, hoping things stay on the straight and narrow! 

@ littlemissh, Thanks hun, had a fab day yesterday and we now have our action plan!woohoo!!!

Well we were finally discharged today....................

:mbh::mbh:

Have decided to spend a day with my Mum and Dad before making the trek home Sunday. We have a follow up appointment with the Surgeon and GI on 7th March regarding progress and when surgery will be, they really don't think the fistula will close on it's own. He will stay on oral antibiotics until then so I am hoping more than anything that it keeps things in check and the drain behaves itself! 

We had a fab time in the city yesterday, Matt really enjoyed it especially since he got to spend 2 & 1/2 hours uninterrupted in the book shop and then the rest of the day was spent in sport stores!  Oh joy :lol:.

Thinking happy thoughts! (or may be I'm in lala land) .
Dusty


----------



## littlemissh

Happy thoughts make for happy souls ))


----------



## MADiMarc

Yeah!!  Out of the hospital and got to do something fun all in one day!  Hot diggity dog!  I am happy for both of you as I know the hospital can make both patient & caregiver mad as a hatter.  Enjoy! Hugs to all and know I am thinking of your Matt walking around the book and sports stores grinning.

Michele


----------



## DustyKat

Thank you so much littlemissh and Michele! :hug:

Well home one week now and things seem to be going okay. Haha can't seem to let myself get my hopes up too much! He has no pain or fever and most of the time looks pretty good. 

Drain has been behaving itself so far, still leaking when I flush it but I think it's always going to be like that. My only concern is I am getting a little resistance when I do flush and I am assuming it's because the cavity is closing (((shrug))). Oh well time will tell.

Went to the GP yesterday for bloods to be done but it was late in the afternoon so I guess unless they are off the board I won't get the results until Monday, so here's hoping the WCC and CRP are normal or at least close to it!

The GP said he could still feel quite a mass so it must be the thickened terminal ileum. I asked him it was bigger than when he first felt it and he said it wasn't so at least that is promising. 

Stable at present. 
Dusty


----------



## AZMOM

Stable is good.    Thinking lots of good thoughts and praying for Matt.  Does he feel pretty good overall?


----------



## DustyKat

Hey Julie,

Yeah he says he feels fine. It's a fine line between asking and asking too much! :lol:

To me at times he looks really good and other times he looks quite washed out but then he has just had 3 weeks in hospital and his sleep at home is a bit disrupted because of the drain, plus it is quite hot here at present.

If he says he feels fine and I am not seeing any obvious signs of pain then all is good. If the bloods support that then that will be the icing on the cake!

Dusty.


----------



## Dexky

Did he make school for the whole week?


----------



## DustyKat

Yep, he did Dex, but he only has 2 subjects this year so he was home by lunch time every day. 

Dusty.


----------



## DougUte

Glad to hear things are going well!  Good news.


----------



## Astra

Hiya Dusty

so glad everything's stable and going well. Stable is a good word!
Hope you're doing ok too?
take care
xxx


----------



## DustyKat

Thanks you Doug and Joan for your well wishes! 

Emotionally feeling a bit up and down like a honeymooners nightie at present!  :ylol2:

Matt had a bit of pain yesterday, not like his previous pain and he said it was more an annoyance than anything else, plus a low grade fever  . Thankfully all seemed to resolve by the evening. He was on Panadol four times a day when he was in hospital but felt he didn't need it so has been taking nothing for quite a while. I think I will put him back on Panadol but only at breakfast and bedtime. I don't see how you can have a drain and not be a little bit uncomfortable and when I put it to him he agreed that it was so we may be on the right track. 

Got his blood results today and I am so happy.......:emot-dance::emot-dance::emot-dance: His WCC is NORMAL! (10.6) and CRP is still above normal at 28.6 but it sure beats being the 300's. Plus he is feeling fine again today. Now all we have to do is keep producing the goods for the next few weeks...............my fingers are in a constant state of being crossed!

Dusty.


----------



## Dexky

DustyKat said:


> Emotionally feeling a bit up and down like a honeymooners nightie at present!  :ylol2:


Well, your emotions may be on a roller-coaster, but your thoughts, as usual, are always in the trough!!

Good to see the positive bloods!!  I know you will remain vigilant till the surgery consult.  Matt's in such good hands!!

Hmm, as I'm typing, they just interviewed J. Gerrard about the Oz wildfires!!  What an awful summer for you guys.  One side of Oz is under water and the other is on fire!!


----------



## littlemissh

Brilliant news about the blood tests. Hope you don't get finger cramp from all the crossing!!    )


----------



## clearwell

Hi Dusty,glad to hear Matts blood tests ok and he is feeling a bit better.It is awful that people so young have to suffer.I think we are all keeping our fingers crossed for you all .
lots of love to you all.


----------



## DougUte

Dusty - Glad to hear about the blood results.  I'll keep praying for you guys.


----------



## Welsh-bird

Hi Dusty,
Been out of the loop for a while, so just catching up here.
Glad to hear thing's are improving for Matt. Hope his recovery continues to go well.
Sending best wishes to you all
And x


----------



## DustyKat

@ Dex, my thoughts are never in the trough, it's you that has the problem......:ylol2:

@ littlemish, thanks hun......ah they are cramping a bit! :lol:

@ clearwell, thank you so much for your well wishes. :hug:

@ Dougute, thanks mate. I think we can use all the prayers we can get!

@ Welshy, thanks buddy and I hope you are also well on the way to recovery!

ARGH AGAIN!!! :yfrown::yfrown::yfrown:

Matt still feeling well and looking good, YAY! Had bloods done yesterday and check up with GP this afternoon. I didn't go with him and when I rang to see how he got on he said the doc wants me to ring him.......boo!

His CRP is slightly lower (25) but his WCC is 13.5. The GP said his temp was sitting at the edge of a low grade fever and the mass he felt last week is larger. He thinks it is the abscess they found when he was in hospital but was too small to drain. He said nothing is urgent at this point but he feels it is going to grumble away and not get any better, only worse, so feels we should probably head back to Sydney. 

BUT before we do anything he wants to speak with the Prof at RPA. Being late Friday afternoon he didn't think he would get onto him today so it would be fine to wait until Monday if he doesn't. I haven't heard back from the GP so I assume the Prof was gone for the weekend. 

Hmmm, I wonder what Monday will hold.

Dusty, :voodoo:


----------



## Guest

oh dear  sorry to hear Matt's still not right yet... maybe the abcess can be drained now?

good luck for Monday.. i've got my fingers crossed with you. x


----------



## Dexky

Well, if it's going to happen anyway, maybe this will be for the best.  I bet Matt is ready to get it over with and move on to the next chapter.  This one has sucked long enough for him...and you too!!


----------



## Welsh-bird

So sorry to hear this Dusty, but keeping everything crossed that there's no need to head back to Sydney early.
Thinking of you, and Matt too,
And x


----------



## DustyKat

@ ding, thanks mate. I am hoping if it is the abscess then it won't have fistula involvement and we are only there a few days for them to drain it. I just wish everything was settled enough to get rid of it all. 

@ Dex, thanks buddy, you know the ideal outcome for me, short of everything miraculously disappearing!, would be to role up to the hospital and find that the inflammation has reduced back to the original 100mm and they whip out all the offending crap. Yeah I'm fed up with it all, not for me but for Matt, it's breaking my heart seeing him receive the news of set back after set back. 

@ Welshy, thanks hun. I have a feeling we will be heading to Sydney if any sort of treatment is required 'cause the GP doesn't think the local hospital is appropriate and I can't shake the feeling that something will need to be done sooner rather than later. 

I guess one of my big fears is if we end up back in Sydney next week that may be his last chance lost and they may want to operate. The fear being that the inflammation still hasn't settled to any great degree. 

This sucks, 
Dusty

PS. See Dex, how spot on was I with the honeymooners nightie analogy!


----------



## MADiMarc

Dear Dusty,
Honeymooners nightie!  Good one!  So happy to hear things are going well for Matt.  In all of this up & down & all around, how is Roo doing?
Michele


----------



## DustyKat

Hey Michele,

Thanks! Yeah he's feeling good I just wish the bloods reflected that! ugh!

Roo is doing really well! Everything points to her still being firmly in remission, woohoo! :emot-dance::emot-dance::emot-dance:. Her vegan diet is suiting her and the psyllium husks are doing the trick with her short bowel syndrome. All is good. 

Dusty.


----------



## gypsigirl28

Hi dustykat,
I just read this entire thread for the first time, being that I have not been able to spend a lot of time on the forum.  I am truly sorry that Matt is going through all this. He has a great mum to help him get through it all.  
I hope things start looking up for him, Maybe surgery sooner isnt a bad thing, if you know it has to be done anyway.  
I am thinking of you all. take care
hugs to you


----------



## DustyKat

@ Rosemary, thank you so much for kind words and well wishes. :hug:

Well the GP spoke with the Prof today and before making any decisions about his ongoing care he wants a CT scan done. I have organised one for tomorrow morning, it wasn't hard to get an appointment when they asked what the clinical notes said and I mentioned pigtail drain and abscess,  and the results will be sent to him to evaluate. So we'll just wait and see what the scan shows and what the Prof thinks.

Hell, I don't know anymore what is real and what isn't! Some days I think he looks well and other days I think he looks pale and drawn. Now I think his limp is getting worse! ugh!!! Two things I do know for sure is he is hovering around a low grade temp and he is as tired as all heck. 

Pressing on, 
Dusty


----------



## MADiMarc

Ho boy, what a road for you both to have to take.  Poor Matt.  Been through the wringer and taking his mum along for the ride.  Thoughts are with you both.
Michele


----------



## DustyKat

Awww thanks Michele. :hug:

GP rang this evening with the CT results. Ugh he is such a mumbler on the phone but I think the gist of it was they are pretty sure it is an abscess, he is sending the results to the Prof and see what he thinks. I'll get a copy of the report tomorrow and judge for myself. 

In the meantime the GP is happy to sit on it and so am I as Matt has no new symptoms, well aside from the fact that I don't know if I'm hallucinating or not! :ywow:. So until I hear anything further we'll press on with his weekly bloods and GP visits.

Thanks guys for listening. If you had told me at the outset it would still be going on I wouldn't have believed you! 

Dusty.


----------



## MADiMarc

I had a doc like that once.  My husband nick named him marbles, cause he talked like he had a fist full of marbles in his mouth.


----------



## Welsh-bird

Good to hear Matt's still hanging on in there Dusty, but maybe you could take his bed and get a much deserved rest?
Sending a big hug, xx


----------



## Astra

Good to hear, hope Matt is ok and you too Dusty, time for a big chillax?
Keep swimming
xxx


----------



## Zoodles

Hope things calm down more for you. Sounds like Matt is quite a trooper.


----------



## DustyKat

Thanks Michele, Welshy, Joan and Zoodles, your words and wishes are so appreciated! :hug:

It's been one of those days today where seeing things in black and white just rams it all home again big time. I know I deal with his drain twice a day everyday but envisioning what is going on inside well, it's a bummer. 

I guess the GP mumbles even more than I realised because the radiologist doesn't think the mass is an abscess. He thinks it is a loop of jejunum that is obstructed or has a torsion and perhaps a fistula that is bypassing it??? Matt has no symptoms of either of these two things, so I have no idea what the hell is going on. After speaking with the GP I think he is still sceptical that an abscess has been ruled out. (((shrug)))

He also has some swelling of the right renal pelvis and ureter. Well that is just out and out deja vu 'cause that's exactly what Roo had from the bowel inflammation compressing the the structures. 

The good news is the drain has done the trick and there is no cavity or evidence of the abscess left! YAY!

The GP has forwarded the results to the Prof so I'll just wait to see what his take is on things. 

Not drowning yet, :eek2:
Dusty


----------



## Dexky

Good news on the abscess!!  I'm not sure what all the rest could mean but it sounds like it would create problems that would cause a great deal of pain.  How has Matt's appetite been?  Seems like digesting food would be a nightmare under that scenario.  Well you said he has no symptoms and you've said before that he doesn't mask pain very well, so this is unlikely isn't it?  I guess you're back to the wait and see game again.  Ugghh!!


----------



## MADiMarc

I am taking the good news and running with it!  Especially since the other stuff I am going to look up so I know what you are talking about.  As Mark said, sounds painful.
Good luck girl,
Michele


----------



## AZMOM

It sounds like a mixed bag, Dusty.  I'm going with Michele and running with the good part!!

Keep treading water~~~~~~no drowning allowed.

Hugs,


----------



## DustyKat

Haha, I'll put my floaties on! 

I so badly want to run with good stuff so I can keep that bloody black dog off my shoulder, he's nipping at my heels at the moment but I'm sure I can out run him!

That's the thing Dex, he doesn't have any symptoms of obstruction or torsion so I guess that may be why a fistula was thrown into the mix as a way of explaining things away but then again I could just be talkin' through me bum! He is only taking Panadol twice a day and has been going to school and will be attending residential school at university today so how obstructed or torsioned can he be?? Just doesn't make sense to me. 

Anyway bloods again today and docs tomorrow so we'll see what they reveal. 

Thanks guys, 
Dusty


----------



## AZMOM

We'll be anxious to hear, Dusty.  Oh and I have some BIG-A$$ floaties if you need them.  :wink:

J.


----------



## littlemissh

A Lilo would work better!


----------



## DustyKat

Haha thanks guys! 

Well sort of standing still at present which is far better than being worse!!!

Matt's feeling okay. He is attending an intensive school at the uni at present, they're long days and he is pretty whacked and feeling sore by the time he gets home but he is loving it so that's what counts!

The GP hasn't heard back from the Prof so I told him to stop sitting on his hands and make the first move. Matt's WCC is 13.2 so much the same. His CRP is higher, now 45, but the mass hasn't increased in size. 

Just sittin' and wonderin', :shifty-t:
Dusty


----------



## littlemissh

Don't sit and wonder, sit and eat cakes... More fun.


----------



## Guest

it's certainly swings & roundabouts right now, huh? at least there are some steps in the right direction.. the abcess clearing is definitely a good thing, it's one less thing pulling him down.

let's hope everything else can get identified properly soon, and some treatment underway...


----------



## AZMOM

I can think of more than a few times when I have thought to myself, "I can handle whatever it is with a diagnosis and a plan!"  You need the plan!!!!

I can't help but think they'll make one since you told them to quit sitting on their hands........:rof:

Hugs -


----------



## MADiMarc

Boy, it is hard to wait for somebody to do something, isn't it?  The waiting is the worst!  Glad Matt is in school if it makes him happy.
Get yourself some rest, too!
Michele


----------



## DustyKat

@littlemissh - :lol:, cakes nom, nom, nom. 

@ding - thanks mate. 

@Julie - Ugh, every time we have a plan it goes AWOL! Boo! But yeah we should get another one when the docs stop circling each other like a couple of mongrel dogs! :ylol:

@Michele - Oh man waiting sure is the hardest and my oh my doesn't the mind play it's dirty little tricks then! :lol:. That's the other thing, I just can't seem to relax. I feel like I'm wound up and ready to take flight at any moment! I know it's because they could say; we want you back in Sydney at any time but it doesn't make me any less flighty! :eek2:

Matt's stable, not sure about me though! 
Dusty


----------



## AndiGirl

I sure hope Matt is on the mend, and that his mom is getting some rest and relaxation.  I'm wishing you all the best.


----------



## Dexky

If biscuits are crackers...what are cakes?  Cause, I'd suggest a piece of cake maybe, but sitting and eating cakes plural would not be a good idea....not over here anyway!  

Just breathe Dusty


----------



## Welsh-bird

Hi Dusty- hope thing's are going well down under (pun intended!)
Thinking of you x


----------



## DustyKat

Awww thanks Andi, Dex and Welshy!

I rang the Profs secretary today and well she was a right pillock! Nice enough but no bloody idea and when I made the biggest mistake of my life and mentioned the *mass* she went into a flat spin and started firing questions at me like a blessed machine gun! Every second word was tumour and it took me forever and a day to calm her down! In the end, and after a few expletives, I told her I would get the GP to ring. 

So the GP rang and said the Prof was happy to let things continue as is at present. He spoke at length with Matt and was also happy to let sleeping dogs lie. For Matt's sake I am happy to keep the status quo. I don't think he is significantly better but he certainly isn't any worse so that's gotta be good! Who knows, we may even make it to the 7th March after all!

Thanks for being here guys, I couldn't do it without you, :hug:
Dusty


----------



## MADiMarc

Hi Dusty!
Just wanted to say hello.  No big deal.
Michele


----------



## Dexky

I'm glad you guys are getting a chance to breathe!!...and sleep


----------



## Welsh-bird

Good to hear thing's are 'plodding' on ok down there. You guys are certainly well deserving of this break.
Hugs x


----------



## Manzyb

Thinking of you and Matt, Dusty!  Get some much needed, well-deserved rest   Hopefully things will get better for him.


----------



## DustyKat

Hey there, thanks Michele, Dex, Welshy and Amanda! I am taking deep breaths and_ trying_ to get some R & R, not sure that I am excelling at that though! :ylol:

Worry, worry, worry, worry, maybe I should change my name to WorryKat! Haha the skills you develop to look at your kids without really looking at them! Anyway have been quietly (yes Dex, quietly!) stewing away worrying about Matt's level of fatigue, so rang the doc yesterday and had B12, Folate and Iron Studies added to his blood request. 

Still on the standing routine of bloods Thursday and docs Friday, so I shall sit and take deep breaths and see what the end of the week brings. 

Still chuggin' along, 
Dusty


----------



## AZMOM

Thinking of you, Dusty,  I DESPISE limbo!  I'm sure you are watching him like a hawk.  And sideways like this  :yrolleyes:

You're a good Mama, even when your middle name is Worry.

Hugs,


----------



## Dexky

I can see you there just knitting away in your rocking chair, quietly stewing away!!  Hah, I bet the prof's nurse doesn't think you're quiet!  Stop "stewing" and try to relax while you have the chance!!


----------



## DustyKat

:lol: Julie, yeah that's about how I look!

Are you stalking me again Dex!! How did you know I'm sittin' in ma rockin' chair clickin' them tha needles!!!! Hmph, the Prof's nurse probably thinks I'm a raving lunatic mother who can't cut the apron strings and I don't give a toss what she thinks! Now where are the scissors..............









:eek2::eek2::eek2:
Dusty


----------



## AndiGirl

I am praying for you and your family Dusty.


----------



## littlemissh

Eating plural cakes is the definition of a good idea!


----------



## littlemissh

Tried to delete above post as it's sooooo behind the times due to my ridiculously slow computer but it won't let me! But whilst I am here faffing around i'll make the most of wishing you and matt well WorryCat.


----------



## Manzyb

You know, if you need to relax I am not opposed to flying around the world to come lay on the beach in Australia to keep you company!!  Think they will let me do that at 8 months pregnant??


----------



## DustyKat

@ Andi, thanks mate, I feel I could really use some prayers right now. 

@ littlemissh, :lo: Don't worry about the post! I knew what you talking about and I reckon your definition is spot on! Thanks for the well wishes hun. 

@ Amanda, 8 months!!! Holy cow that's flown by and you must be getting excited, I am! Nah I don't reckon they'll let take the long haul downunder, . Other problem is...I don't know nuthin' bout birthin' babies! (in my best Prissy voice). :ylol:

Dusty.


----------



## Manzyb

ahaha!!!    Well damn.  I thought we had a plan there!!  

I know, can't believe it.  It has gone by completely fast!! I am very excited!  Little girl weighs just over 3 pounds!!

Seriously though, I hope that you find a way to relax and take it easy a little bit.  You've been through so much, you deserve some relaxation as well as a mom of the lifetime award!!!  I have to say, I don't know what I would have done without my mom by me.  It really means the world to us to have people care so much about us when we are down for the count.  Matt and Roo are very lucky to have you!!!


----------



## DustyKat

Awww, thanks Amanda. :blush:


YEE HAW!!!​

Just back from the GP and we are gonna make it to the 7th March! 

WCC down to 6.5, CRP still climbing but ever so slowly from 45 last week to 50 today. The B12 result isn't in yet but taking everything into account (raised CRP) it would appear he is not iron deficient. Reading through the side effects of some of the meds he is on I guess I will put the some of the fatigue down to that. Hb a little low but steady and the MASS is smaller!!!

GP still not sure why he spiked the temp based on these results but I guess that Crohns for ya! 

Thank you, thank you, thank you everyone for being here for us, it *truly* does make difference!

So happy, happy, happy, 
Dusty


----------



## Manzyb

That's great Dusty!!    It does help to have people to talk to about all of this.  Especially people who understand it all.  Keep on keepin' on!!!


----------



## MADiMarc

Hot diggity dog!!!  Maybe you can get some sleep now???  Turn off the worry button for just a bit!  I am so, so happy for the both of you!  
Michele


----------



## crohnicaly stinky

DustyKat said:


> Awww, thanks Amanda. :blush:
> 
> 
> YEE HAW!!!​
> 
> Just back from the GP and we are gonna make it to the 7th March!
> 
> WCC down to 6.5, CRP still climbing but ever so slowly from 45 last week to 50 today. The B12 result isn't in yet but taking everything into account (raised CRP) it would appear he is not iron deficient. Reading through the side effects of some of the meds he is on I guess I will put the some of the fatigue down to that. Hb a little low but steady and the MASS is smaller!!!
> 
> GP still not sure why he spiked the temp based on these results but I guess that Crohns for ya!
> 
> Thank you, thank you, thank you everyone for being here for us, it *truly* does make difference!
> 
> So happy, happy, happy,
> Dusty


YAY!!! Good to hear!


----------



## Dexky

I'm happy for you guys Dusty!!  Put it on cruise and relax for a while!!


----------



## littlemissh

)))))))))))))))))))))))))))))))))))


----------



## AZMOM

Wahoo!!!!!!!!!!!!!!!!!!!!!!!!!!


----------



## DustyKat

Thanks Amanda, Michele, Stinky, Dex, littlemissh and Julie!!!

The countdown is on and this time next week we should have a plan of action YAY!!! Not before time too I think, yesterday was the first time in three months that Matt has actually said anything negative to me. I have seen the disappointment in his face many a time but he never really says anything (he is a man of few words, hmmmmm must take after me).........he is sick of feeling so tired all the time and he is well and truly fed up with the drain. Hell I reckon he's done well, I would most likely have been whingeing ages ago! (Disclaimer: Shut up Dex :ylol.

Counting down......7,6,5,4,3,2,1.....blastoff!
Dusty.


----------



## Dexky

I still don't think *whinging* is a real word....but at least I can spell it!!  Maybe there will be a silver lining to Matt's drawn out intro to crohns.  Perhaps he'll be more likely to take care of himself in the future.  

Wow, it has been 3 months, hasn't it!!!


----------



## MADiMarc

Three months.  Long time to be in limbo.  

Okay, whinging (or whatever) can be a word if two people agree on it's meaning.  Language moves & grows with us, it is never a static thing.  Ha!  Come back from that one Dex!

Michele :biggrin:


----------



## DustyKat

We've been through this before Dex. :yrolleyes:

Whingeing is a word, I know it's hard for a redneck to believe but it is and not only that but it is spelt *whingeing*. :lol2:

Thank you for defending my honour Michele! 

Dusty.


----------



## AZMOM

Believe it or not, Dusty & Dex, you're both right.    I'm addicted to the Dictionary.com app on my phone.  It says.  The base word is Whinge - conjugated is whinged, whinging.   

Not that you needed me to referree!  :wink::wink::wink::wink:


----------



## littlemissh

Stop whing(e)ing you guys ! ;-)


----------



## Manzyb

oh I can always count on you guys for a good smile when i need it!!


----------



## Welsh-bird

Fantastic news Dusty. Glad to hear thing's are at last heading in the right direction.
Sending lots of good vibes and best wishes xx


----------



## Ian

Glad to hear it, and looking forward to hearing the plan of action on the 7th


----------



## DustyKat

Ahahahahaha........you say whinging and I say whingeing. Yeah they're both right but hey I can't miss the opportunity to bag out on Dex! :rof:

I can't thank you guys enough the support and laughs. 

I know why the docs held off doing anything sooner and I guess as the appointment date gets closer you sort of start getting a bit antsy with things. Just keeping my fingers crossed that the plan has worked this time! 

Dusty.


----------



## Dexky

I would never say whingeing or whinging, because my red-neck buddies would immediately beat the sh&( out of me!!  Then I'd tell them to stop *whining*!!

Well, we've made it to March!!  One more week!


----------



## Crohn's 35

:hang: in there Dusty, I know it is hard to wait.  Best of luck to you both!


----------



## AndiGirl

I'm still sending prayers your way.  Mom needs them just as much as her child.


----------



## DustyKat

Thanks Dex, Pen and Andi.......:hug:

Another successful trip to the docs, Woohoo!!!

The mass is smaller and less solid, WCC 5.4 and CRP coming down again, now 30. Hasn't gained weight but isn't losing either. 

Off to Sydney on Sunday for review by the colorectal surgeon and gastroenterologist on Monday. I am about 90% sure he will say come back in 3 weeks, or there abouts, for his op but after nothing going to plan since diagnosis I'm not dismissing that he will keep us down there. I'm in two minds about this. One part of me doesn't want an unexpected stay in Sydney right now but the other part is saying...........he is doing well clinically so lets just get in now and get the drain and the crappy bit of bowel out!!! 

I guess my fear in waiting another 3 weeks is Matt is already pissed off about the drain and I will be like a cat on a hot tin roof looking for any sign that he is on the downward slide again. ARGH!!!!! I hate feeling like this.

Pondering what Monday will hold. 
Dusty


----------



## MADiMarc

Dusty,
It is so hard to be 17 & sick.  I just feel for Matt so much because I was so young when I got sick (19).  The time of life we want to be go, go, going & do, do, doing!  I think getting angry is normal.  And getting angry & grumpy toward the person closest (and that we know we can count on 1000%) is inevitable.  
You are such a wonderful, supportive mother.  Matt knows he is always safe with you and will always be safe with you.  Okay, enough pop psychology 101!
I hate the "which way do I turn now" feelings too.
Remember to take care of you too!
Michele


----------



## AZMOM

Oh Dusty - thinking of y'all.......  

You know that song......."Waiting is the hardest part...."  Couldn't be more true could it?  You are a spectacular mother and I have no doubt you'll get Matt what he needs when he needs it.  

:award2:

Yep, I just awarded ya!  

Hugs,


----------



## DustyKat

Awww thanks Michele and Julie............:blush: 

Sunday morning here and I'll be off to Sydney soon. Take care guys and I'll let you know what happens.

Bye, :bigwave:
Dusty


----------



## Dexky

I like this song..."come Monday, it'll be alright"...

I'll be thinking about you and Matt


----------



## gypsigirl28

thinking about you and Matt.... will say prayers for you


----------



## Astra

Hi Dusty

Is it Monday there now?
Hope you have a successful outcome and Matt can get rid of his drain.
I can't imagine what you're going thro, my Jordan is the same age as Matt and I don't know if I could cope. You're so strong, and doing a fab job Dusty.
Big hug your way, take care
xxxx


----------



## Welsh-bird

Thinking of you guys and wishing above all for a positive outcome today.
Best wishes xx


----------



## littlemissh

Good luck. Hope you are both as happy as you can be with the plan of action.


----------



## DustyKat

Oh wow! Thanks for all the well wishes guys.............:hug:

We have a plan of action anf first up the surgeon does not want to operate right now.

We saw the gastroenterologist first, we hadn't met this guy before and he is a Crohns specialist. After a lot of history taking, chatting and examining Matt he was in no doubt that surgery is Matt's only option in rectifying his current problems. Even to the point that if the surgeon didn't agree he was going to contact him. It's alwyas good to know that others are of the same opinion.

Then we saw the surgeon. He is very happy with Matt's current status and how he looks and said he is exactly where he wants him to be. He has set down the 7th of April as the surgery date. At this point he doesn't think he will be able to do the surgery laparoscopically so open surgery seems to be the method, he will have a progress scan in a couple of weeks to determine the affected area. Drain remains insitu until surgery and he will also stay on Flagyl but stop the Augmentin when supplies run out. 

So that's it. Matt seems happy enough but it is hard to tell in someone who says very little. He only asked one question the whole day and that was if he was still going to have a drain when he left hospital. When the surgeon said no a little smile crept onto his face and with Matt that speaks volumes, believe you me!

Thanks for being here guys. It makes so much difference having you here to voice my thoughts and fears to. I can never thank you enough.

Dusty. :hug:


----------



## littlemissh

Roll on the 7th April then. Enjoy yourselves as much as you can till then.


----------



## Dexky

That's great Dusty!!  I'll "see" you when you get home!


----------



## AZMOM

Okay well that is a plan.  I hate that you have to wait until 4/7 but at least all are in agreement and you are moving forward.  My son is "one of those" kids that a little smile would speak volumes.  I'm glad you saw a glimmer - bless his heart.........

Thinking of you all!!!!

J.


----------



## MADiMarc

Excellent!  Plan in place, Matt seems okay with it, mum is now able to sleep (somewhat!). Glad the GI seems like a keeper.  Keep rolling with the flow, girl!
Michele


----------



## Astra

That's excellent news Dusty!
My Jordan is the silent type too, a little smile would've answered all my questions too!
April 7th, bring it on!
Try and chillax now, have some Dusty time!
xxx


----------



## Welsh-bird

More good news Dusty- you really are on a roll now!!
Hope Matt continues to do well until the 7th, you both deserve a break. Soo pleased for you both.
Sending a big hug xx


----------



## DustyKat

Thank you so much everyone, I appreciate all the thoughts, prayers and well wishes more than anything. :hug::hug::hug:

Matt has returned to his usual routine of bloods Thursday and docs Friday. I have been having my own private pity party :ylol: since I saw Matt's GP last evening. He was chatting with me about Matt and then said "I don't imagine you want to hear his CRP is 131". Damn right I don't!!! UGH!!! He didn't have the WCC at that point. 

Anyway we went to see him today and his WCC and neutrophils are raised from last week but still within normal limits. Matt told him he feels well and he does look quite good at present and to me is less fatigued than he has been. At least the last few days when I get home from work he isn't asleep on the lounge, man it breaks my heart to see that. So we will keep with the wait and see at this point. I am hoping this is just a glitch that will be gone by next week..............(clicking my ruby slippers together 3 times!) 






  Click, Click, Click.




Hugs to all, :hug:
Dusty


----------



## Dexky

Dusty, you poor thing....you have two left feet!!

Come on 4/7!!


----------



## DustyKat

Stop picking on my deformities Dex!!!

And will you please write the date properly! That is the 4th of July!!!

Dusty.


----------



## Dexky

That's what I meant!!  The day of my captivity....I mean Independence!!


----------



## DustyKat

OMG! Your wife needs a medal for putting up with you! I imagine you have been together for at least one life sentence so how many more are you going to subject her to!

Dusty.


----------



## Astra

ha ha ha you two, what ARE you like!

I still can't get my head round how you write your dates, 4/7 is 4th of July to me too!

Anyhoo, roll on 7/4, can't come soon enough!
Take care Dusty luv
xxx


----------



## MADiMarc

Dusty,
Keeping all of you in my thoughts.  Glad Matt feels better, even if his blood hasn't caught up yet!

Reading the posts between you & Mark makes me giggle.  Thanks for that!

Michele


----------



## Crohn's Mom

Dusty,
all I can say is WOW! and DITTO! 
Dusty, you are one incredible and strong and loving momma ! I can feel every second, every syllable of every word and sentiment you have expressed in this post deep into my soul.
I hate that we share such similar stories.  I have cried so many tears reading these last 8 pages of Matt's struggles, and yours.  I can not believe how similar our stories are!
I just want you to know my thoughts are with you....we CAN do this  for our beloved and precious children.  Stay strong ! 

"Worry, worry, worry, worry, maybe I should change my name to WorryKat! Haha the skills you develop to look at your kids without really looking at them!"
I loved how you said this ! 
<<<gigantic hugs coming your way>>>


----------



## Jerman

Hey Dustykat, I haven't been on the forum for a loooong time but read back a bit and am so sorry that you and your lil guy have been through so very much difficulties and hellish times. I want you to know that even though i have not been around, you are always in my prayers and thoughts. Sending you strength and hope from all the way over in Mass. Hold strong dear, your angels are watching and you will all be through it soon.


----------



## DustyKat

@ Joan, thanks hun and that whole date thing is a real bugger ay! :lol:

@ Michele, thanks mate. I'm hoping more than anything his blood does catch up! Nothing better than a good laugh, especially at Dex's expense..........:ylol2:

@ Tracy, it breaks my heart that you can relate so closely to this BUT it is wonderful to have you here......:hug:

@ Jerman, thanks for dropping by buddy. I am so happy that things have been going well in your personal life, may it last a lifetime. 


Don't wanna jinx myself (touching wood :eek2, but Matt has been chuggin' along pretty well this week. Good colour, good obs and less fatigued, appetite a bit meh but it's not too bad all things considered. Hoping, hoping, hoping that his Thursday bloods reflect all that or I will be mightily p@#$*d off! :ylol:

Loads a love, :hug:
Dusty


----------



## lseibert

DustyKat,

I'm still sending you (((hugs))) and prayers for you and your little one. You are always making me smile......  And I can tell you are a GREAT Mom, you're children are lucky and so are we to have you. 
Thanks for the smiles and hugs you bring!!!

:hug::cat:


----------



## DustyKat

Hey Linda!

Awww thanks, :blush:. 

I have been wondering where you have been! I hope you are having a speedy recovery and all is well. :hug:

Dusty.


----------



## Jerman

@ Jerman, thanks for dropping by buddy. I am so happy that things have been going well in your personal life, may it last a lifetime. 

Thanks very much Dusty, that means a great deal to me.


----------



## lseibert

I have been wondering where you have been! I hope you are having a speedy recovery and all is well. :hug:


My recovery has been good! I wish I could do whatever I want right now, but I'm feeling better every day!
Thanks,
Linda
:applause:


----------



## DustyKat

:banana::banana::banana::banana::banana::banana:

^^^^ Me doing a happy dance and it ain't pretty! :ylol:


Woohoo the bloods are good, WCC unchanged at 9.7 and CRP back down to 30. I am so happy 'cause I have seen shades of Matt this week that I haven't seen in I don't how long and I would have been so disappointed if his bloods didn't reflect that. 

He's skinny as a stick though and has lost more weight, now 41.7kg, I hope he doesn't loose any more before surgery. Progress CT Scan booked for the 28th March and I have everything crossed that the inflammation has retreated right back to the 100mm it was originally, oh well at least close to it anyway. 

Thanks for being here guys, it means the world to me. :hug:
Dusty


----------



## Dexky

Me too!!!:luigi::banana::luigi::banana:


----------



## lseibert

Dusty,

That is GREAT news, I'm so happy for you.............

:mbh:


----------



## Crohn's Mom

Yeah Dusty!!!!! 
I am sitting outside @ the Mayo clinic and saw the email that you had updated so I just HAD to check! Lol I am on my phone hehe.  This is great news ! 

We just received the all clear for Gabs surgery as all her blood work came back great ! (her WBC is also at 9.7! First time in 4 months there is no sign of infection!!) 
I got a copy(finally) of her MR enterography also so I will share that with you later and we can dig through that "grey matter"  

I am so very happy for Matt and you ! 
Kinda puts a little ease to your worries going into the surgery (at least I hope !):hang:


----------



## AZMOM

Oh Dusty - that's ALL GOOD!  I'm so glad for you both.  Exhale now, worrying mama, exhale.  :thumright:

Big hug,


----------



## Dallies

Super news - always thinking of you.  Much love xxxxxxxxxxxxxxxxxx


----------



## DustyKat

Thanks so much Dex, Linda, T, J and D! :wub:

Hey T, that is fab news about Gab's! What a relief, phew, and how good is it that her WCC is normal going into the op! :emot-dance::emot-dance::emot-dance:

Dusty. :Karl:


----------



## Astra

Aw, I'm always late to the party, but I'm dancing, honest!!

Excellent news for Matt & Gab!
Here's to both kids, I wish them lotsa happiness!
xxx


----------



## DustyKat

Well Matt had his weekly bloods yesterday and it's a bummer 'cause they are starting to go off again.

I can't say I'm surprised as he has started to hit the wall psychologically this week. He has no appetite, no energy, has insomnia and is generally fed up. He came to me the other morning and said he is dropping 2 of the 3 university units he enrolled in this semester.  It breaks my heart to think how difficult that decision was for him to make. Couple that with a few days of low grade to mid range temperatures and, well I'm not surprised. 

His WCC is 12.8 and CRP is 110. The GP is concerned about his condition and his likely further deterioration over the next 2 weeks. He feels that even a week of TPN prior to surgery would be beneficial in not only resting the bowel but getting some calories into him. I have thought about this and am not against it if the surgeon feels it is also warranted. He is going to try and get onto the Prof and discuss it with him today, but being Friday who knows. He will pursue it again on Monday if he is unable to make contact today. 

He does have his progress CT Scan booked for first thing Monday morning so here's hoping the inflammation has done the Harold Holt (bolt) and retreated back to what it was, or at least close to it, when he was diagnosed. Fingers and evertything else crossed!

Dusty.


----------



## Keona

Wow Dusty - you and your family have been through the ringer.  What an incredibly strong family you have!!
Poor Matt...   Sorry he had to drop courses at university.  If he can do all of this while being this sick, I cant imagine how he would do when he is well.  He will kick butt!!!  and if I were an employer, he would be the kind of person I would want to hire as he sounds so resilient or I don't really have the right words but sounds like he has an amazing work ethic.. or maybe ambitious is the right word.  After all of this I am surprised he is only hitting the wall now...  all of those variables would make anyone feel depressed   I hope Matt is able to get ahold of the prof today.  
I have everything crossed over here for you and Matt Dusty!  I am thinking of you and Matt and sending you positive vibes.  You guys will get through this  
Thanks for updating us
 Big HUGS
Wendy


----------



## Crohn's Mom

Awe man Dusty .. I *really* hate to hear this !!  Your children have had enough already !!! Damn it ! 

I am sending my bestest wishes your way !!  It's Matt's turn to get and stay healthy now!!  Just two more weeks and it's his time ! 
I hope he doesn't have to do the TPN, but if that is what is going to help him have a more successful surgery, or lesson the inflammation until then, then I suppose I would agree to it as well.

I wish you all nothing but the best !!  :kiss::kiss:

Much love !
~Tracy~


----------



## clearwell

HiDusty,so sorry to hear the grotty news.Nothing I say will make it go away but I will pray it all goes well for Matt you and your family.Will this thing never give us any peace?Take care and will be thinking of you all with everything crossed.xxxGeri


----------



## Dexky

Oh man, I know you are both ready to get off this roller coaster!!  I hope this is the last trough and he can start a steady climb til the surgery!  I'm so crossed up I can't walk!!


----------



## AZMOM

Gosh Dusty.  I HATE that.  I'm with Dex - let's get going and get off this stupid bad amusement park ride!

Love, hugs & prayers - all coming at ya!

J.


----------



## DougUte

Dusty,  I am so sorry about what you guys are going through. Cancelling University courses is a tough call to make. But Matt will get through this and start doing much better. Your family has been through the ringer on this stupid disease. I'll be praying for you guys.


----------



## Manzyb

I'm sorry he's slowly getting worse again, Dusty.  I think about you guys and hope that things turn quickly for the better for Matt.  Sending you hugs from the states   Hang in there Dusty!!!


----------



## Crohn's Mom

Hi Dusty !  :rosette1:

Just checking in to see how Matt is doing ?? AND YOU ?? 
I am still all too familiar with the "pre surgery" jitters !!

Is Matt getting any rest ? He goes for a follow-up CT tomorrow right ?
May I ask...why do they want to do the CT, and radiate a young man again, right before his surgery ?
Has it been definitely decided about the TPN?  Do you have to fly out to Sydney early for that ?

OH MY....me and my questions for you!!  :ywow: 
I am just concerned for you both!

And by the way....how is Sarah doing knowing this has now attacked her brother? 

Ill stop now! Maybe...



Big Giant Hugs coming your way !!! :hug::hug::hug:


----------



## Welsh-bird

As always- thinking of you guys, and wishing you nothing but a speedy recovery and a long remission. And xx


----------



## STLGirl

I've caught up just now with your news and dang namit, it really is a roller coaster ride for you all.  I hope the scan goes well Monday and the results are good.
Love and hugs to you and Matt and your family. You are all in my thoughts and prayers for great things to happen.


----------



## DustyKat

@Wendy, Thanks so much for your support hun, it means the world to me. :hug:

@Geri, I really appreciate your kind words and prayers. I reckon we are using up our fair share at the moment! :hug:

@Dex, Well what can I say Dex. Thanks for being here for me mate just doesn't seem enough. 

@J, Thanks mate for your love and friendship. You have a lot on your plate right now as well and I'm sending love, hugs and prayers right back at ya! :hug:

@Doug, Thanks for dropping by mate and I'll take all the prayers I can get! I'm thinking of you and hoping and praying that you can get your own issues sorted pronto! :hug:

@Manzy, Thanks hun, I reckon I can feel those hugs right now! How are you and bubs? It must be getting close now and I can't wait! :kiss:

@Welshy, Awww mate, thanks for popping in when you have so much going on yourself right now. Thinking of you too buddy. :wub:

@Sara, Thank heaps hun. I have been thinking about you and hoping that you are alright. I know you have had a lot to deal with recently, are you okay? :hug:

@T........................



> Is Matt getting any rest ? He goes for a follow-up CT tomorrow right ?
> May I ask...why do they want to do the CT, and radiate a young man again, right before his surgery ?
> Has it been definitely decided about the TPN? Do you have to fly out to Sydney early for that ?
> 
> OH MY....me and my questions for you!!
> I am just concerned for you both!
> 
> And by the way....how is Sarah doing knowing this has now attacked her brother?


Haha, ask away mate! I know you are doing it because you care and for that I am forever grateful! :wub:

Unfortunately Matt is really struggling at present. I know he is worried and stressed because he is becoming quite snappy, . What isn't helping is as much as he and Sarah get on I think when she is home for a few days he gets a bit overwhelmed, it really is the extreme of extrovert meets introvert! :eek2:

The CT he is having today is the one the surgeon will use to basically determine what he will do in the op. He wants to know how the inflammation has settled now that he has moved from an acute to a chronic phase. 

The GP will speak with the surgeon today so I should know this afternoon. If the surgeon does want TPN then I would imagine that we will have to fly down sometime this week, maybe Wednesday or Thursday?

Sarah has handled it well and it has certainly brought them closer, she has been a wonderful support to him, but having said that I know it has scared her seeing what he has gone through in the last 3 months. I hate that she has relived her own pain and suffering at times since Matt was diagnosed. 

Wow! Thanks guys for being here for us, words cannot express what it means to have you all here. I will let you know what happens today with the surgeon and keep you updated on the CT results. 

Loads of love, :ghug:
Dusty


----------



## DustyKat

Hmmmmmm.........I think, hell I know, I am more worried about the CT results than anything right now. Sorta like looking into a crystal ball! 

Dusty.


----------



## Keona

Hey Dusty!!

Nice to hear from you!
I am also having a CT after surgery.  How are they doing Matts?  Not to freak you out but I was told I need an NG tube in so they can push dye through.. I cant remember where Matts Crohn's is so maybe it is different...and hopefully they can just scan him.  My MRI's are coming back abnormal but the pictures are too blurry.  He is risking radiation with a CT because he wants answers as well and because he said he will monitor really well - sort of a deal...I agree to be radiated...they monitor well afterwards.  He also said it is also the most reliable and would show every nuance.  It is best to know in the long run....right?
I hope Matts inflammation has decreased so he is cleared for surgery.  
as always thinking of  you Matt and Sarah 

Wendy

P.S  - pain meds makes people really crusty..lol... I find I snap at people also (mostly in my head) and I think it is the dilaudid.. Im usually really laid back...


----------



## ChampsMom

Hey Dusty,

My prayers are with you and your family... What an amazing person you are - welcoming me and taking the time to answer my questions (if I'd only do more research I could find - but some does say, "Save time - Ask Dusty!" while going through you own personal trials with your son... 

Thank you - and God bless!


----------



## DustyKat

@Wendy, Matt's CT was IV contrast only. Should have the results this afternoon. Oh man Wendy, I so hope the inflammation is reduced! Thanks for being here mate. :hug:

@Shelly, Don't listen to Dexky!!! :ylol:. Thanks so much for the well wishes and prayers hun. :hug:

Man, oh man, oh man...........

Matt's weight is now down to 40.2 kgs. I should have the CT results this afternoon. The GP has just rung me and he has spoken with the surgeon, the surgeon still doesn't want him down there until next week BUT.......he told the GP there is still a high chance of Matt having a temporary ileostomy! Godammit I thought we had a really good chance of being past that. I'm not going to be stupid about it and I know why it may need to be done but they will bloody well have to prove it to me! I only say that because Matt isn't coping with the drain very well at all, how the hell is he going to cope with the stoma! Hell I'm just thinking out loud here, I know he will cope in some form or other but I'm just bloody to sick to death of him getting kicked in the guts! Hmmmmm...........think I'll leave off now. 

Thanks guys, :hug:
Dusty


----------



## clearwell

Keep strong,prayers are flying to you all.hope they work and there will be some good news. lots of love Geri.x


----------



## Keona

Hey Dusty

One day at a time my friend   I hope Matt's inflammation is also reduced a great deal.  Amazing how all of this started with no symptoms - just wacky blood work!!!!  (if I remember correctly). Please let us know how the CT had worked out.  I am glad it was contrast only.

Hang in Dusty and Matt.
Wendy


----------



## Crohn's Mom

Oh man Dusty 

You know, I know, how very hard this is on you right now.  The anticipation may be the worst part of it !  And, I didn't even have a doc telling me Gab had a possibility of a stoma....he said NOPE!  

Hang in there!  I was devastated when Gab came out of surgery with the ileostomy, I didn't see a way that it could possibly be ok.  Her entire life flashed through my mind, and heart.  I just wanted to take it all away for her (and still do !)

However, she had it for one week today.  Is she happy about it ? NO.  But, her attitude is so much better today then it was last week.  She makes jokes, talks to it, insults it, the works.  I believe in her mind she has just reserved herself to the fact that there is absolutely nothing she can do about it except deal.  

These kids are so strong and can overcome anything that is thrown their way.  And in watching them do so, it makes us stronger mommy's.  If they can do it then we can too!   If Matt does end up with the bag, then you know its for the best and for his best health.  It SUCKS.  I KNOW.  I TRULY DO ! 
But it will be ok, I promise.  Just hang on to those words of "temporary" and "reversal" and keep remembering that...then watch Matt get better and better and better !! You CAN do it !!  

I'm so sorry for your pain Dusty....I wish I could give you big big hugs personally !! :hug::hug::hug:
Hang in there hun...and vent away if you need to ! 

much love and respect,
~TRacy~


----------



## crohnicaly stinky

Dusty,  I feel so awful for you and Matt.   Just keep fighting through this and make the best of the situation.   You guys will find stable ground eventually and then whatever that looks like, Matt with your help, will make the most of it and I'm sure find some peace and happiness.   I wish this burden could be lifted off your shoulders.   As bad as things get always look for God in your day, he's there with you Dusty.  Hang in there


----------



## DustyKat

@Geri, Thanks for being here hun......:hug:

@Wendy, That's right! Next to no symptoms and wacky inflammatory markers, that's about it. I can't believe what has happened in the last few months!......:eek2:......:hug:

@T, Awwww thanks hun......:wub:. I asked Sarah today how she thought Matt would handle a stoma and she said; "He'll be fine, it's Matt he's weird!"......:lol:

@Stinky, Hey Stinky! Thank you so much for your kind and thoughtful words, they really mean the world to me......:hug:

Well I have the preliminary report of the CT results and they look pretty good to me but then I'm no radiologist or surgeon!

In summary (my words)......

- The upper abdomen, including organs, is normal.

- There are no bony abnormalities.

- The large colon is normal.

- There has been some improvement in the appearance of the distal small bowel loops, which are now of more normal calibre with less fluid in them.

- The right ureter and collecting system are now within normal limits - previously borderline dilated.

- The pigtail drain remains insitu (woohoo! the retaining suture hasn't been in place for ages) and the abscess remains drained.

- There is a collection of fluid behind the bladder that is significantly larger than identified on the scan of the 15th Feb. I wonder if this is the abscess they suspected back in January but was too small to drain and the mass the GP is feeling and suspected was a abscess all along. I know it is the same area that the GP is palpating mass in. Interestingly the drain has become very active over the last few days and especially last night. ALERT TMI, I smelt the dressing and it is not offensive but smells of pus as opposed to faecal matter. I wonder if this collection of fluid has connected up with the original abscess cavity as I think the second abscess did sit behind the first. Matt has been spiking fevers over the last week as well. His temperature tonight was 38.3 and he is starting to get soreness again but not like the pain he had that precipitated his last two hospital visits. 

Summary comment from report..........


> Changes of known Crohn's disease of distal ileum have improved and the right iliac fossa collection remains fully drained, but a fluid collection has developed in the pelvic peritoneal cavity to the right of midline, and is of uncertain significance - ?simple fluid ?inflammatory fluid.


Hmmm......I wonder what the surgeon will think!

Hangin' in there by my fingertips! 
Dusty


----------



## Dexky

DustyKat said:


> Hangin' in there by my fingertips!
> Dusty


Sounds like you can relax and get a little better grip to me!!  That's the best sounding info we've had for a while!


----------



## DustyKat

:eek2::eek2::eek2: Don't want to get my hopes up Dex! Plus that is essentially my interpretation of things 'cause it hasn't had the final rubber stamp and I haven't spoken with the doc. 

Dusty.


----------



## StarGirrrrl

We are all thinking of you and Matt Dusty and willing things to get better for you all  I'm 24 and not diagnosed yet but I would say it's CD. I decided if it ever came to a temporary "bag" (i'm not up yet with the correct terms!) I would make a giant wall chart with all the days I had to have it and cross them off day by day so I could see myself getting near the end. And for every week that I had it I would have a huge treat!


----------



## Crohn's Mom

Dusty,

This may sound like a stupid question, but if there IS another abscess behind the bladder, would they need to "move" the drain and re-drain? or will that same one, placed where it is, be able to take care of the second one ?

One of the abscesses Gab had when the surgeon went in there was in or around the same area as Matt's, and directly in her blood line he said.  
When we were first going over the results of her MRE he had stated that "if" there was an abscess then they would have to drain first before surgery.  
I'm sure you remember my instincts saying there was indeed an abscess even tho the test results showed differently.
So in my mind ( as nutty as it is! LOL) the fact that the inflammation is less is wonderful news.  And, that they found a possible second abscess can also be great news.  That little sucker could be drained and the inflammation go down even more...along with getting rid of that fever it is causing ! 

I could be way off...who knows ! Your reports of the CT scan sound rather promising for Matt to me !!

Keep hanging in there momma !! Big hugs !!


----------



## ChampsMom

Hey Dusty,

I've decided you can let go - and I'll hold on tight for you!  I am certain that someday (later rather than sooner) I'll need the same help and you'll be there for me... Funny what we can gather in a few short posts, eh?

TONS and TONS and TONS of prayers and positive thoughts coming your way!!


----------



## DustyKat

@StarGirrrrl, Haha good idea about the wall chart and the treat! I hope you get answers soon, knowing what you have can be difficult but not knowing is worse......:hug:

@T, The drain that is in wouldn't do the job with the new abscess, not direct enough. I don't know what they will do with this information but I guess I will find out at the pre op work up next Tuesday, :eek2:. I don't reckon your way off T! Hope all is going well in your camp hun, are you home??......:hug:

@Shell, Woohoo time to flex my fingers! :lol:. Yep, we'll be here for ya hun, thanks so much for all the prayers and positive thoughts!......:ghug:

Dusty.


----------



## Welsh-bird

Thinking of you guys, and sending heaps of good wishes and love xx


----------



## DustyKat

Haha Welshy I reckon we were answering each others posts. Hmmmm.......great minds think alike and small ones seldom differ?? I'll take the former! :lol:. 

Thanks hun and right back at ya! 

Dusty. :wub:


----------



## Manzyb

Hey Dusty!!  Those results don't sound too bad!  Looking forward to hearing what the docs say about the results    Thinking of you and Matt!


----------



## Crohn's 35

Big hugs to you and Matt, hope things turn around for him.  Scary to see kids be ill.  Keep us posted! :hug:


----------



## Entchen

Hi, Dusty

Appreciated reading this update from you. I have been thinking about you and Matt. Keep taking it day by day. Hugs to you!


----------



## Dexky

DustyKat said:


> :eek2::eek2::eek2: Don't want to get my hopes up Dex! Plus that is essentially my interpretation of things 'cause it hasn't had the final rubber stamp and I haven't spoken with the doc.
> 
> Dusty.



Did you ever get confirmation??


----------



## AndiGirl

I was wondering the same thing.


----------



## DustyKat

@Amanda, They look good to me too! I hope the surgeon thinks that! :lol:. Thanks hun, thinking of you and Sadie as well......:hug:

@Pen, thanks mate, I sure as hell am scared! :eek2:......:hug:

@Entch, Haha gotta get use to the new name! Thanks so much for your thoughts and hugs......:ghug:

@Dex and Andi, Not yet. I haven't worried about the final confirmation as I imagine it won't be terribly different, if at all. We're still on the bloods Thursday, GP Friday regime so I will be seeing him in the morning. I will update then. Thanks guys for checking in......:kiss:

Dusty.


----------



## Crohn's Mom

Thinking about you and Matt and hoping that things are going well !!
:hang::Karl:


----------



## DustyKat

Hey T! Awww, thinking of you guys as well......:hug:

Well things are better again this week! Godammit this is one helluva ride. :eek2:

Matt's CRP is 58, so half of what it was last week, WCC is back to normal at 9.4. Even his Hb is on the lowest value of normal! I can't remember the last time it didn't have an astericks next to it. His regular GP was back today and he can still feel the mass of course but didn't seem to think it was any bigger than when he last saw him 4 weeks ago. Matt still has very little appetite and looks like has just been released from a POW camp but other than a bit of soreness around his right hip nothing has changed. 

I hope this all bodes well in the surgeons eye and mind. Fingers and every other body part crossed!

Thanks guys for your continued and unwavering love and support, .
Dusty. xxxxxxxx


----------



## Keona

thats great news Dusty 
I hope the good news stays that way !!!
Still thinking of you guys and I hope Matts appetite returns.
I cant imagine how exhausted you must be.  I hope you are remembering to take good care of you 
Love


----------



## DustyKat

Thanks hun......:hug: Good luck with your surgery on Tuesday mate, I will be thinking of you!......

:goodluck::goodluck::goodluck:

I think I am living off my nerves and adrenalin! Hopefully I don't crash and burn...:eek2:...:ylol:

I have a busy weekend and then flying to Sydney Monday morning. If I don't get back on before then I want to thank everyone for their love, help and support through all this, it has been invaluable to me and words can't do justice to the way I feel about you all. 

Not sure when I will be able update BUT I will do my utmost to keep you posted. 

Haha, changed my avatar so you would all know who the hell I have rambling on about over the past few months!

Much love to all, :wub:
Dusty. xxxxxxxx


----------



## AZMOM

Love ya, sister.  We'll be waiting for great news!!!!

:hang::hang::hang::hang:

Hugs,

:ghug:

J.


----------



## Dexky

I can already tell I'm going to have to bug Roo again.   Do the best ya can sis!!  Remember, there's a lot of people here pulling for you and Matt.  We'll miss ya!!

....now I'm going to go win that stupid last post game!!!!


----------



## ameslouise

Hi Dusty -It's been ages since I popped on your thread and I apologize for not comin' round sooner.

Sounds like things are touch and go with your Matt, but holding steady?  I do hope he starts to get an appetite soon and put on some weight.  Moms are always happiest to see their kiddies eating, right?

Hang in there Dusty. You are so strong and going thru so much.  You must just feel like collapsing at times.  We'll all be here to pick ya up!

xo xo - Ames


----------



## DougUte

Hi Dusty.  I am praying for you guys. Matt will get through this.  We are all here for you guys.


----------



## DustyKat

@J, Thanks hun! :hug:

@Dex, Leave Roo alone!!! Oh and you will *never* win!!! Thanks mate. :hug:

@Ames, Thanks buddy. Haha I'm as happy as a pig in S*** whenever Matt has an appetite and he has regained a good appetite in the last few days! Woohoo!......:hug:

@Doug, thanks mate for popping by, I more than appreciate the prayers!......:hug:

Well we are in Sydney now. The flight down was glorious, a beautiful bright crisp Autumn day and Sydney harbour was a picture! An hour and a bit on the plane sure beats a 7hr car ride. 

Pre op tomorrow so no doubt we will have a better idea of what is going to happen Thursday. Fingers crossed it all be very quick and boring!

Dusty.


----------



## Dexky

Boring and routine...that's what I'm praying for!!!  Good to hear Matt is doing well


----------



## Crohn's 35

Love the avatar pic of Matt and the cat! You are an amazing mom, I wished I had a mom like you when I was a teen and going through hell.  At my time there was no computers then so help was not available and being ill just after my daughter was born, it took a toll on me and wished my mom was more compassionate.  30 some odd years later she is supportive but my hubby is my bigger supporter and is my hero.  Matt and Roo are lucky to have you!!! I hope YOU are ok and hanging in there, much love to you all!


----------



## Crohn's Mom

Thinking of the two of you !!
:goodluck: Pre-op tomorrow !

Try and get a little rest tonight ! (ha...ya right!)
:hang: 

~Tracy~


----------



## Keona

Good luck at the pre-op.. if it was anything like mine..it is very boring and they just did a heart test, blood, urine... speak to the anesthetist ...you know...the usual.
I hope everything goes smoothly 

Big hugs sent your way


----------



## DustyKat

@Dex, As always, thanks mate! :kiss: 

@Pen, Awwww thanks hun......:blush:......Yep, Pen still hangin' in there, :biggrin:! Not long now until D-Day......:eek2:

@T, Thanks for popping by mate when you have so much on your plate......:hug:. I reckon I might have to steal one of Matt's bedtime friends......Temaze!!! :lol:

@Wendy, Thanks buddy!......:hug:......Big day for you today and I will have you close in my thoughts, best of luck my friend......:goodluck:


*HOLY GUACAMOLE BATMAN!!! 
*

I have never been to pre op clinic before and what an experience that was, 4 hours later we were finally released from captivity! 

You ain't wrong Wendy......ECG, chest X-Ray, bloods, registration, nurse, clinic nurse, case manager, anaesthetist and surgical registrar. :yfaint:

When I spoke with the case manager I broached the stoma as it wasn't ticked on the sheet to see a stoma therapist. The surgeon did not flag stoma on any of the paper work but I wanted it raised in front of Matt anyway. She said that the surgeon would avoid it at all costs but that it could never really be ruled out completely. I don't know, maybe I'm wrong but I would hate to think that he woke up with a stoma without it ever having been mentioned since January. He seems to have taken it okay and said he understood that if the surgeon has no choice then so be it. 

He is listed as a laparotomy and will have a vertical incision with an invisible continuous suture as closure, Sarah had this as well. He will have an indwelling catheter, probably a drain but no NG tube. Due to his weight they may put up some TPN for a few days post op. He has no bowel prep and I have to ring tomorrow afternoon to find out his fasting and admission time for Thursday. 

Rest day tomorrow and then full steam ahead!

Thanks for all the love and support guys, :wub:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Ahh Dusty you got off easy with only 4 hours ! We had 7 ! :ylol::ylol:

Seriously tho, I think it is very positive news that Matt didn't even have an ostomy consultation scheduled ! Or that he didn't get "marked" !  I'm sure you remember my surprise, and fears, when Gab did...and the outcome.  So, YIPPEEEE !!  Things are really looking positive for Matt ! ( in my little ole opinion anyhow )

I hope you and Matt are having a little fun today !  


Still thinking of you ! 
And here's to hoping his "bedtime friend" becomes your best friend !:beerchug:

Much love to you both !
~Tracy~


----------



## Astra

Just like to wish you all the best Matt, you're an inspiration to all the young Crohnies out there!
Much love to you too Dusty, try and get some rest now, your strength and vitality will be needed post op.
Be thinking of you both come Thursday (it's on my calendar!)
xxx


----------



## DougUte

Dusty, 

I think that since Matt did not have a stoma consult that is a good sign. My doc mentioned the possibility of a stoma pre surgery and then told me that the odds were against it happening. I came out of surgery "stoma free". I am sure that will be the case for Matt. 

Matt will come through this and be much better for it. From what I am reading in this thread, the outlook looks good to me!

Well be think about you folks on the 7th.


----------



## Keona

thinking of you 
hang in... this long term treading water is exhausting ...isnt it...
things will get better Dusty 

Please take care of yourself... 
Wendy


----------



## Dexky

You answered my stoma question before I asked.  That sounds great Dusty!!


----------



## DustyKat

@T, 7 hours!!! You're right, we did get off easy. Matt seems fairly relaxed today, more than me I reckon! :lol:. Thanks hun......:wub:

@Joan, Thanks mate! Trying to rest, I promise I am!......:hug:

@Doug, I sure hope he doesn't have a stoma but after all the set backs we have I'm having trouble thinking too positively! :eek2:. Thanks mate for all the positive thoughts and wishes......:ghug:

@Wendy, Thanks for dropping by hun, I know you are going through a very tough time at present......:hug:. I reckon my head is just bobbing above the water line! :ylol:

@Dex, patience bro! Nothing to be gained by coming too soon!......:wink:


Well the call has gone in and Matt is fasting from midnight and is to be admitted to the peri-operative unit at 9:30am. The countdown is really on now, YIKES!!!


Dusty......


----------



## Dexky

DustyKat said:


> @Dex, patience bro! Nothing to be gained by coming too soon!......:wink:


Have you been talking to my wife behind my back???

Well you may be nervous (where did you find that nail biting emoticon anyway?), but at least you still got your :rof:!!

I can finally say tomorrow w/o feeling like I'm in a time warp!!  Come on tomorrow and brighter days ahead for Matt!!


----------



## Keona

haha.. Dex

You both will get through this just like you all got through this with Sarah 
Hopefully this will all be a think of the past in a few months!
Sending you warm thoughts and best wishes


----------



## Dexky

We need a drumming the fingers emoticon.....waiting and hoping all is well!!!


----------



## Keona

same here... I have been thinking of someone I have never met all day


----------



## AZMOM

I'm with the rest of you on this one (fingers going thump thump thump).  

I hope you are feeling the love from far away Dusty.

J.


----------



## Keona

....
....
....


----------



## Keona




----------



## Crohn's Mom

:runaway::runaway::runaway::runaway::runaway:

Oh I am glad to see I'm not the only one who keeps checking in here...over and over and over....
:ywow::ywow:


----------



## Crohn's Mom



 

Let's play cards and eat and drink while we wait!


----------



## DustyKat

Everybody breathe, the waiting is over......

Matt has just arrived back on the ward, 6pm our time. He went into theatre at about 12.30pm and in my nervous travels around the hospital I ran into the anaesthetics registrar a couple of times so he was giving me updates and reassuring me that although it was taking longer than planned it was going well.

So I haven't seen the surgeon yet, he is still in theatre so I don't have any of the finer details. What I do know from looking at him is......

He has no stoma and no NG tube.

He does have a urinary catheter and a drain, not the pigtail though!!!

He is very groggy and sore and the green button on the PCA is getting a wonderful workout. 

Will update when I know more.

Thank you so much everyone for your wishes, prayers, support and love. I felt it all the way from over the various ponds! 

Much love, :Karl:
Dusty


----------



## Keona

I am so glad to hear this Dusty.  I hope Matt is okay and can rest easy now.  
Please get some rest too - and I hope Sarah is okay.  Stress, huh?

What a family...


----------



## Dexky

Happy dance :banana::luigi:!!!  Great news Dusty!!  The urinary catheter and drain are normal procedure I presume??  I hope so, I know Matt is tired of appliances!!  :banana::luigi:


----------



## STLGirl

Oh Dusty, this is all great news.  I'm so happy for you all.  You and Matt have been in my thoughts so much.  All our thoughts and prayers will continue as Matt recovers.  Love and hugs to you all.  :ghug:


----------



## mommytocrohn'steen

That is such wonderful news, I hope he has a speedy recovery!! Sometimes being relieved of the pain that got you to surgery makes the post op pain pale in comparison.  
Lots of hugs! !!!


----------



## Crohn's Mom

:Karl::Karl::Karl:

this is great news !! I am so happy to hear he didn't wake up with a stoma ! 

the catheter and drain are pretty routine (as I am sure you already know this..)

Aw i am so happy for Matt !!  

Now the healing process can begin and he can get on with his normal teenage life, just as Sarah has !!
:hang:

:ghug::ghug::ghug:

~Tracy~

I am still curious to hear the details tho....but
Get rest when you can Dusty !


----------



## xJillx

What wonderful news!!!  Here's to a speedy recovery for Matt!


----------



## crohnicaly stinky

I'm glad to hear it went well!  My prayers are with you and Matt and Roo too!  Stay strong Dusty! We're all pulling for you guys!


----------



## Astra

Oh this is the wonderful news we've all been waiting for!
Way to go Matt, speedy recovery now, and Dusty...... breathe hun, you've been so strong and brave, RESPECT sista!
xxxx


----------



## DustyKat

Awwww, thanks everyone......:Karl:

I'm lovin' the emoticons Wendy! :wink:

The surgeon has been in this morning and he said they decided to start the surgery laparoscopically but were unable to continue as he had an inflammatory mass adhered to his abdominal wall. So essentially when they opened him up he had a mass of two bowel loops that were tangled and adhered together and this had then adhered to the abdo wall. This was the mass the GP and Matt have been feeling the last couple of months. They also found another abscess. They removed his terminal ileum, ileocolic valve and caecum, all up about 40cms of bowel was removed. The surgeon was very pleased with the way things went. 

Matt didn't have too bad a night and is much more settled today. We'll see how he is travelling later after he has to get out of bed and take a few steps and sit in a chair! :eek2:. I think the PCA will know it's alive! 

Catcha later.

Loads a love, :wub:
Dusty. xxxxxxxx


----------



## AZMOM

We love you Dusty and it sound like things went as well as we could have expected, right?  I hope you are taking care of you - I KNOW you are taking great care of your baby.  

Love & hugs,


----------



## DustyKat

Hey J, :bigwave:

The surgeon came in again this afternoon so he could sit and chat with Matt when he had more time. He said that he took out about 30cm of bowel and what they actually found within the mass was he had another perforation that wasn't able to be easily visualised. They can see it on the films now they know it was there, so yeah the fistula and abscess they knew was there and another set they didn't know about......lots of infection. Just too much inflamed bowel at that spot to be able to see it on CT. He is really happy with how things went and with the way Matt is looking. YAY!!!

@Dex, yeah I knew he would have a urinary catheter and I expected a drain if he was going to end up having a laparotomy. 

He had a walk and then a sit in the chair this morning, he did okay but before long was looking longingly at the bed like a love sick hound dog! The nurse went weak at the knees and let him go back to bed......:ylol:

Much love to all, :wub:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Yeah for Matt !!  

I'm so happy to hear he walked and sat in the chair already!  It took us 3 days to get Gab in the chair, and 5 days to even walk to the door of her room! She's a bit stubborn ! :lol:

I am so glad things went so well, and now that nasty infectious bowel and abscess is gone! gone! gone! 

Still thinking about you all and hoping for continued success and speedy recovery!

Tons of hugs for you both!
:ghug::ghug::ghug::ghug::ghug:


----------



## DougUte

YEAH   :thumleft::thumleft::thumleft::lol2::lol2::lol2:  

Way to go MATT! Dusty, he will be OK.  Take care of yourself and Matt and the family.


----------



## Keona

no wonder he felt so crappy...
I am so glad it was all removed and cleaned up - I look forward to hearing the updates from here in 
I am glad for you guys and that things are finally improving... what along haul !
You guys have more strength than I think you know...

Wendy


----------



## clearwell

Oh bless not nice but the only way is up now much love to you all.We can all breathe a little easier and it's flipping hard trying to do stuff with your fingers crossed.I think I have been more worried about Matt than I was about myself.lots of love and luck Geri x


----------



## Dexky

Are we still talking about the same kid??  The one for whom *nothing* went right for the past 4 months?  It is so good to hear that things are finally going his way Dusty!!!

I expect any minute now he'll sit up and ask for some technical math manual or something really exciting like that


----------



## MomofIBD's

Sorry about not checking in :redface:..... I know I did:confused2: ..... I did type something :ybatty:..... It must of Hyperspaced .... I know I am not crazy! :roflanim:I wonder where it went!???? Oh well You & Matt have been on my mind for days! I am so glad that things are good! No Stoma Yeahhhhh! But still surprizes within! It does go to show you that you never know!  I'm glad the anticipation of wondering whats gonna be is over & the healing can begin! :rosette1:
Gentle Hugs to All across the oceans!:hug:


----------



## DustyKat

WOW!!! Thanks for all the well wishes and thoughts guys!!!

Matt still doing well but I don't think he will get on top of things until the process of removing all the tubes and lines begins, he just isn't one that likes having things attached to him. That would explain why he never did fall in love in the pigtail! 

No farts yet but started on a clear fluids diet today. Went for another couple of walks, much to his disgust. He would much prefer to lay in bed motionless, can't say I blame when he has only just been gutted like a fish! :eek2:

He will kill me if he finds out I've posted this pic but I can't believe the amount of colour he now has in his face. I swear to god when he was in the hospital in January he was the colour of the sheets!......

Oh yeah, that frown on his face isn't pain, it's a why are you taking my photo face.

Lots a love, :wub:
Dusty


----------



## STLGirl

I'm so happy he is doing so well.  I hope things keep getting better and better.  BTW, I can't see the picture you just posted, is it my computer?


----------



## DustyKat

Hey Sara, :bigwave:

Thanks hun......:hug: 

I can see the pic in the post on my computer. Yikes, I have no idea why you can't see it! 

I wonder if others can see it then??

Dusty.


----------



## STLGirl

We'll see if others remark about it lol


----------



## Crohn's 35

Hey Dusty, so good that Matt is on his way to recovery and they took out the nasty problems.  He must of been in great pain :voodoo:.  Will he be on maintenance drugs after?  Dont worry your kids are fighters like the mom!  

I can't see the new Avatar either, I see Roo. Unless YOU look exceptionally young! :kiss:


----------



## Keona

HAHA... hey Dusty
Nope..cant see the pic either.
I am glad Matt is doing better.. I bet he hacked into your account and removed the photo 
When do the tubes come out ..or do you not know that yet?  I dont like tubes attached to me either.  Its not like they hurt when already in (in my case) but I was afraid of reefing them out..and causing more troubles..  the wanting to lay flat motionless... I cant say I blame him there.  I remember when I was gotten up to walk and the pain killers made me REALLY nautious (it wasn't nearly the operation Matt had either).. I hope he can get up and moving  though since it will speed up his recovery (or so I hear)...  I dont think I would want to either so Im with him on that one!!

How are YOU doing???

Take care and thanks for the updates..


----------



## DustyKat

BINGO!!! You should be able to see the pic now......

	
	
		
		
	


	






@Pen, Thanks mate......:hug: He will be on Imuran 100mg indefinitely and Flagyl for 3 months. As to the avatar......I wish!!! :ylol: 

@Wendy, They haven't said yet when anything is coming out. He still has his urinary catheter in and that is what he is hating the most at present. Sarah's came out the morning after her op so surely his can't be in too much longer??? I'm doing fine hun......:hug:

Dusty.


----------



## Crohn's 35

Hey Dusty!!! I saw Matt's pic!  My goodness you got some great looking kids!!! Hope is recovers very quick and you look after yourself... right Dexy!!! Make her do it :lol:


----------



## clearwell

Hi Dusty,yeah I can see Matt's pic too.Hope he is well enough to go home soon.Take care.lots of love.


----------



## Dexky

Yeah lol is right!!  Dusty takes so much advice from me already...then she tells me to  stick it up me arse!!  

Yeah, yeah Matt does look great Dusty...but Sarah, oh Sarah looks mahvulus, simply mahvulus!!


----------



## Crohn's 35

:lol: Dex,...


----------



## DustyKat

> Dusty takes so much advice from me already...then she tells me to stick it up me arse!!


Liar, liar pants on fire......I can smell undies burning Dex!

Dusty.


----------



## DustyKat

Thank you Pen and clearwell for your lovely words and wishes......:hug:

And Dex, you are really sounding like a creepy old man now! :ylol:

Dusty.


----------



## Dexky

Caught!! Red handed...actually she just tells me to eff off!!  But she always follows it with a  !!


----------



## DustyKat

Yeeeeeeeeeeessss...... 

	
	
		
		
	


	




 The Prof has been and the catheter is out, Matt is grinning like the proverbial cheshire cat......!

Dusty. :sun:


----------



## Keona

Lovin the emoticons Dusty...
you must be doin better... you and Dex are at it again... shheesh....

What is stuck to Matts forehead???  That cant be comfortable...lol


----------



## DustyKat

^^^^LMFAO! Wendy......

Ahhh the pitfalls of one dimensional photography! :ylol:

That is Matt's new best friend, Temazepam is no longer riding shotgun, the lovely glowing green button that unlocks the power of the PCA (Patient Controlled Analgaesia) AKA......give me my Morphine!!!

Dusty. :sun:


----------



## Entchen

Hi Dusty: Thanks so much for sharing the picture. Delighted to hear that you can see a good improvement in Matt's colour. The rest will come! :hang:


----------



## Crohn's Mom

Ahhhh Dusty ... I LOVE seeing your positive posts !!  And Matt does look amazing...(even with the PCA button attached to his head ! LMAO) That was too damn cute ! :lol2::lol2:

Hoping he does better and better and his stay there is almost at an end !

Much love !
~Tracy~


----------



## Keona

Where's he at???  Im sending him some cheeseburgers!!!


----------



## Crohn's Mom

Oh man...all the new emotion-icons are awesome !! Love it !


----------



## DustyKat

@Entchen, Thanks mate for dropping by......:hug:

@T, Hey buddy......things are going well thus far, fingers crossed! I hope all is going well in your camp, I am always thinking of you and Gabs......:wub:

@Wendy, He's in hospital mate! :ylol:   

	
	
		
		
	


	




 Royal Prince Alfred Hospital in Sydney so send away! :dog: By the time they get here he should be on a full diet......








Dusty.


----------



## Dallies

It's fantastic to hear Matt is doing so well.  It seems like yesterday since Meg was in exactly the same point in her recovery and I was frantically PM ing you!  Sarah look's lovely.  Will email soon xxxxx


----------



## Dexky

DustyKat said:


> ^^^^LMFAO! Wendy......
> 
> Ahhh the pitfalls of one dimensional photography! :ylol:
> 
> That is Matt's new best friend, Temazepam is no longer riding shotgun, the lovely glowing green button that unlocks the power of the PCA (Patient Controlled Analgaesia) AKA......give me my Morphine!!!
> 
> Dusty. :sun:


Hah, I thought it was a Wii controller and Matt was playing math olympics or something!!

Awesome, one less tether and only one more to go and then he's freeeeeeee!!!!


----------



## radchic

Sorry I'm late for the party but its been a week at work.  YIPPEE, tht is fantastic news Dusty and Matt is such a handsome boy.  Get home soon!


----------



## gypsigirl28

Glad to hear Matt is doing better and smiling agian.. lol 

Sorry I have not been on to read update dustykat.  So much going on here.  thinking about you both.
I hope you are getting some rest as well..


----------



## DustyKat

@D, Hi mate, good to see you! Thanks for dropping in and I'll look out for the email!......:hug:

@Dex, good one Dex!:yrolleyes: Yep, things he's slowly dropping off the tethers. :ybiggrin:

@Rachel, No worries hun and thanks for the well wishes!......:hug:

@Rosemary. Thanks hun for popping in......:hug: I know you have a lot on your plate at the best of times, let alone now. Good luck with the move and I so hope this a turning point for you all, fingers and everything crossed! 

Matt is still chugging along fine and hating hospital! Spoke with the Prof yesterday and if all continues to go well he should be discharged Friday or Saturday. I also asked about soccer and he won't be able to play for 6 weeks but can do some light training after 3. He isn't allowed to drive for 3 weeks and then it is only short distances for a further 2-3 weeks. I asked the Prof to clarify short distances because a city short distance is poles apart to a country short distance! He said as far as the shops. I laughed when he said that and said some peoples mailboxes are further than the shops! They just have no concept of travel when you are out of the city!

Matt is still on clear fluids but hopefully will move to free fluids today. Big news is he started farting yesterday......:banana::banana::banana: The PCA came down yesterday so he is now on oral Endone when needed. So now he just has one IV, hmmmm maybe we will get rid of that today, and the drain which will be in until later in the week. He is walking well now, quite straight and long distances.

Now the PCA is down he can have his bedtime friend, Temaze, written up as a regular so he is happy about that. The resident came and told him that last night and he asked Matt if he wanted 1 or 2. Matt asked if two was better than one and the resident said......you bet, twice the fun! Needless to say Matt chose two! :ylol:

Just re read this and it is all sounding very boring! WOOHOO couldn't wish for anything better!

Much love, :wub:
Dusty. xxxxxxxx


----------



## Crohn's 35

Good going Matt!  I had to look up Tamaze...yep that should help lol.  So he is farting up a storm eh?? Good thing, he is sounding better every day.  You also sound better too and must be relieved. You are an amazing strong mom and person.  Always a pleasure to read your posts.  I love it when you kick Dexky's butt lol.


----------



## AZMOM

I *adore* boring!  So glad to hear things are tooting along....yes, pun intended!

Lots of love, Dusty........

J.


----------



## STLGirl

This is just wonderful news.  I'm so happy for you both !  

I was wondering what PCA stands for? I heard my Dr mention that and I didn't know what it meant.

Hey Matt, we are all so excited you have the "putt putt's" again !! :rof:


----------



## Crohn's Mom

@STLGirl ... PCA means "Patient Controlled Analgesia"
It's the nifty button you get to push for pain meds whenever you want 

@Dusty ...

I am in awe of boring !!  WHOOO HOOOO MATT!!  :kiss::kiss:

Hope the good news continues on and on and on....

much luv,
~Tracy~


----------



## Entchen

Boring is EXCITING, Dusty! We've been so concerned, following Matt's journey, and this is fabulous improvement. 

xo
Kelly


----------



## Zalanicht

Excellent news Dusty. I did some reading and caught up glad to see he's doing well after surgery. I agree with other people above me when saying being bored in the hospital healthy is awesome compared to before.


----------



## Jer's Girl

Wow Dusty!  Your family sure has been on a rollercoaster with this disease!  I’m so sorry I missed this thread, but trying to keep up with work, my disease, and all of the newbie’s on this site sometimes keeps me from finding out what is going on with all of my old Crohnie friends that have been there for me in the past.  

I’m glad that Matt seems to be doing better.  You and your kids are in my thoughts.


----------



## DougUte

Hey,  BORING is what we want to hear!  Good News.


----------



## DustyKat

@Pen, thanks mate for your kind words and thoughts......:wub:

@J, thanks hun......he sure is tooting along!!! :lol:

@Sara, haha tooting and putting! T is spot on with the PCA!......:hug:

@T, thanks for popping in buddy and things remain AOK! :Karl:

@Kelly, I agree! Boring couldn't be better! Thanks for coming along on the ride mate......:wub:

@Zal, hello buddy! So good to hear that all is going so well with you, that's awesome! Thanks for dropping by......:ybiggrin:

@Jer, awwww mate, no need to apologise! Thanks buddy......:hug:

@Doug, I'm glad you like boring 'cause there's more where that came from! :ylol: Thanks mate......


Yeehaw!!! Things remain boring here!!! :boring::boring::boring:


IV came down yesterday and he started on free fluids, tolerated that well so commenced on a light diet today. Hasn't really required any pain management outside of the regular Panadol he has been receiving. He has been pooping since yesterday......:banana::banana::banana:

Will have drain removed tomorrow and if he continues to behave himself......discharge Friday!!! :emot-dance::emot-dance::emot-dance: We will stay in Sydney for a few days and fly home Tuesday......flight booked......YES!!!

Have spoken with both Prof's today and they both say malabsorption can't be ruled out so I will be vigilant, once again, with watching Matt for continued diarrhoea and B12 levels. The GI Prof wants Matt on Imuran 100mgs daily indefinitely and Flagyl TDS for 3 months so that regime has now commenced. He reckons, that according to research, 3 months of Flagyl post op greatly increases your chances of gaining and maintaining remission. 

All in all we are very fortunate......:worthy:

AND now for something completely different and totally off topic......

Sarah has moved out of college and into her own apartment. What do you think was one of the first things she did??? Get a kitten of course! :yrolleyes:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Keona

AWE 
What did she name it?

Glad to hear the good news about MAtt - tell him to behave 
Hugs across the pond !
Wendy


----------



## DustyKat

Thanks Wendy, hugs right back at ya mate!......:ghug: And I will tell Matt to behave! 

She sure has named her......STELLA! or should I say STELLAAAAAA. :ylol:

Dusty.


----------



## Dexky

So much for those beautiful wood floors!!!  Good to hear Matt's situation remains blah an routine!!


----------



## Crohn's 35

> She sure has named her......STELLA! or should I say STELLAAAAAA. :ylol:


Too funny, John Travolta would be proud :lol:


----------



## Keona

cute


----------



## MomofIBD's

Dusty I am so loving the boring!!!!!!! Yeahhhhhh! :cheers::cheers::cheers::cheers:
I keep looking for this topic & just realized your not in the "Parents" section! WELL DUHHHHHHHHH!!!! SHEESHHHHH!!! :ybatty: :duh: :runaway:
 I'm just glad your head can slow down it's spinning & it's close to stopping!!!!

  :grr1d: Well your daughters Kitty looks awful pretty!!! 

Until next time I will try not to get so lost!  :rof:


----------



## DustyKat

@Dex, bugger the floors, purr, purr, purr......:cat::cat::cat:

@Pen, did John Travolta say that too!!! Hell, I gotta get out more......:yfaint:

@Keona, yeeeesss......

@Mom, blame Dex for that! He was the one that started it here......:ymad::ylol:. Thanks hun for persevering in the hunt! :hug:

The team has just been......drain out today and home tomorrow!!! :banana::banana::banana:


Plenty of time to think while I have been here and of course Matt hates being here, hey who doesn't, but you know I reckon it goes deeper than that. Okay, so Matt is wicked smart and over the years I have wondered about his quirks, well quirks in my minds eye, and have seriously considered he bordered on Aspergers. Anyway I am ashamed to say it took me forever to realise that he is on the extreme end of introversion and once I did it explained so much. This whole environment is so disconcerting to him that his discomfort and frustration is palpable. The noise, interruptions, invasion of privacy, inability to escape......roll on tomorrow! 

Hmmmm, that was out of left field but to me physical progression is only one part of the puzzle. I know he will do so much better when he is able to recharge his batteries in private, the introverts will know exactly what I mean. :wink:

Dusty.


----------



## Keona

an introvert myself...i understand exactly.  Is he good at drawing? visual/spacial?


----------



## DustyKat

He is globally gifted but his passion lay in the sciences, particularly pure mathematics. Must take after me......NOT!!! :ylol: 

Dusty.


----------



## bruscar

big hugs Dusty !!


----------



## AZMOM

I'm SO GLAD things are going well.

Super hug,

J.


----------



## Dexky

DustyKat said:


> @Mom, blame Dex for that! He was the one that started it here......:ymad::ylol:


Well, if it makes you :ymad: have one of the mods move it :ytongue:!!  With all your pull, it should be no problem!!

I'm so glad he's close to getting his walking papers sis!!....for both of you!!


----------



## MADiMarc

So glad things are going well.  
I am not an introvert but at times the sensory input is too much for me too.  I have to have about an hour of down time/quiet time a day or I get buggy! It is worse if I am I am under artificial light for a significant amount of time.
All good thoughts headed your way,
Michele


----------



## DustyKat

@bruscar, Thanks mate!......:hug:

@J, Thanks for the hugs hun......:wub:

@Dex, Ooooooooo someone's a little sassy......:kissgrits:......Thanks buddy. :wink:

@Michele, Hey hun, thanks for dropping by and for the well wishes. Haha Matt could not get outta there quick enough! Good luck with the new job......:hug:


Well the Prof came in, the wound dressing came down, the Prof nodded his head and said......nice......we grabbed the discharge papers and meds and got the hell outta there before they changed their minds!......utahere: Now we are at Nana and Grandpa's and Matt is being smothered and spoilt and is as happy as pig in s***! No tethers or attachments for the first time in 3 months. 

Onward and upward! :allright:
Dusty. xxx


----------



## radchic

Dusty, you have just made my day.  That is wonderful news and let the spoiling commence!  It has been a long road for him but he sounds like he is MUCH happier now, and so do you!  Forward progress,awesome.


----------



## Keona

you're gonna crash Dusty and sleep for a week!!!
Im so glad you are all doing better


----------



## Dexky

Hot damn, that's the best news I've read in ages!!!  :banana::luigi::banana::luigi: and all the other little happy dancers I can't remember!!!!  Wooooohhoooooo!!!!


----------



## Keona

here...let me help..


























you guys are gonna be so sorry I figured out how to do this


----------



## Crohn's 35

Hey I love that kitty with the headphones :banana:


Dusty,, so glad Matt is getting better everyday!  You must be so relieved too!  Btw grandparents always spoil the grandkids.  It is their job and get even .  Good news!


----------



## Crohn's Mom

Hey there Dusty! :rosette2:

Just checking in on you.  Hope Matt's recovery is going well still.  Have you made it back home yet, or are gmom and gpop still spoiling ?? :ytongue:

And how's Sarah latey?  Is she enjoying her new apartment? and that adorable Stelllllaaaa!! 
I can't wait (well, yes I can) for Gab to just be in a dorm and living life and having some fun! 

Big Hugs to you my friend! :ghug:
Hope you got some rest while at your parents


----------



## StarGirrrrl

Super great news for all concerned!!


----------



## DustyKat

@Rachel, Thanks hun, very much appreciated......:hug:

@Wendy, ahahahaha, lovin' all the extras, fab job mate!......:wub:

@Dex, Thanks buddy......:hug:

@Pen, I am relieved hun and he is still being waited on hand and foot by you know who!......:ylol:......:hug:

@StarGirrrrl, Hey mate, thanks for the well wishes......:ghug:

@T, Still at Mum & Dads, so Matt is being spoiled and I am getting more rest. We fly home tomorrow (Tuesday).......:hug:


Matt is doing fine. He was a little down yesterday but after speaking with him I think he has realised that he is very much underestimating his recovery time. He feels he is progressing though and the only pain he has is what he describes as wound pain, he no longer has the pain deep within. His appetite is good and he is sleeping well so all that's left is to build up his stamina and put some meat on is bones! 

@T, as to Sarah......She is absolutely loving her new apartment, it's Art Deco and very quirky,so, very Sarah. Stella is being very spoilt and smothered to death, much like Matt......:lol:. Last Tuesday night I went with her to Ikea, hells bells was that an experience! We country folk don't have stores like that! :ytongue:. Anyway I went over to her place yesterday and helped assemble the last of the flat packs, so all is good! I bet you can't wait to see Gabs take that next step in her life! You are sort of sad and excited all at the same time. You don't want to see them go but you are so proud of what they've achieved and are excited for them and the future.

Slowly edging forward! :sun:
Dusty. xxxxxxxx


----------



## MADiMarc

Te-he!  Love the dancing animals!


----------



## Manzyb

Yay Dusty!  I'm glad to hear that Matt is doing so well after surgery!    Thinking of you guys


----------



## Dexky

Dusty's having computer problems but they are *HOME*!!!!


----------



## Manzyb

Awww!!  That's amazing!!  Good for you Dusty and Matt!!


----------



## Keona

keep up the  :boring: updates Dusty and Dex...   


:banana::banana::banana::banana::banana::banana:

all kidding aside, I am glad you made it home


----------



## Crohn's Mom

Thanks Dex !! 

I was just about to start stalking you to see if you knew anything !! :ylol::ylol:


----------



## DustyKat

@Michele, ahahaha, aren't they awesome!...... 

@Amanda, Thanks hun. I hope all is going well with the family!......:hug:

@Dex, Thanks mate and thanks for passing the message on!......:thumleft:

@Wendy, :lol: Thanks mate, boring remains goooooood!......:hug:

@T, Thanks for dropping by hun......:ghug: I so hope things start to settle for Gabs. Thinking of you guys.


HOME!!! Woohoo!!! Matt slept through the night last night. I may well be wrong but I reckon it's the first time he has done so this year! I can already see he is so much more relaxed and he is talking about going to watch some pre season soccer. So all is good and here's hoping it lasts a lifetime! 

	
	
		
		
	


	





Thanks guys......

	
	
		
		
	


	






Doing well, :ybiggrin:
Dusty. xxxxxxxx


----------



## Manzyb

That is such great news!!  Hopefully it will last forever


----------



## STLGirl

I'm just tickled to death for all the great news.  What a wonderful blessing  !!


----------



## radchic

That is awesome Dusty.  So happy things are going well and you are finally HOME where you both belong.  Hoping Matt's recovery is as smooth as his hospital stay.  Getting out, sounds good!


----------



## DustyKat

@Amanda, Thanks buddy. I hope all is going well with you and Sadie......:wub:

@Sara, Thanks hun, all continues to go well......:hug:

@Rachel, Oh man you are so right about being home, . It sure is the best medicine! Thanks mate......:ghug:

Everything continues to go well. Pain is slowly decreasing, he is sleeping well and his appetite is good, very good in fact! He weighed himself this morning and he is 38.4kgs! Yikes, that is a couple of kilos lighter than when he left hospital! BUT in view of the fact that he is eating so well I will put it down to the difference in scales......or is it that I like them to weigh me less! Maybe I need to recalibrate......:ylol:

We have a 5 day Easter/Anzac day break here. Sarah is home as well, with Stella, and the weather is glorious! All is good in our camp. 

Much love and thanks to all, :sun:
Dusty. xxxxxxxx


----------



## Entchen

One Easter basket later and Matt will be back to his old weight, surely!

Have a wonderful weekend home with the family, Dusty.


----------



## Dexky

Good to hear Dusty!!  Better not get too attached to Stella or you'll have another one!!


----------



## DustyKat

@Kelly, He has already started into the chocolate, which is interesting 'cause he was never much fussed on it before he had surgery. If he'd had a transplant I would think it was one of those freaky things that happen to recipients! Thanks for the well wishes hun...... :hug:

@Dex, Thanks mate. Nah I won't get attached. It will be a bit like having grandkids......spoil 'em and then hand 'em back. :ylol:


----------



## Keona

Happy Easter Dusty.  GREAT news that Matt has an appetite back  







So glad to hear you have your family home for the weekend (and the new little family member) - long over due my friend   ENJOY your EASTER/ANZAC break together 

W.


----------



## DustyKat

Awww, thanks W! I'm still lovin' and smilin' at the emoticons!

Yeah buddy, in a good place right now and boy doesn't it feel good. 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## littlemissh

Have a wonderful, chocolate scoffing easter. Good to hear things still going well !


----------



## DustyKat

Ahahahaha, Thanks so much littlemissh for your well wishes and ......nom, nom, nom! 

	
	
		
		
	


	





Lots a love, :wub:
Dusty. xxxxxxxx


----------



## Astra

Hiya Dusty

Just popping on to say Hurrah! Sounds like everything's going fab in your house, this is just the best news!
Have a great weekend, all of you.
Lotsa luv
xxxxx:Karl:


----------



## xJillx

I am so happy Matt is doing so well, Dusty!  What terrific news!!!


----------



## DustyKat

@Joan, Thanks for by popping by mate and for the well wishes...:hug:

@Jill, Thanks hun, very much appreciated...:kiss:

All continues to go well with Sarah and Matt. :ybiggrin::ybiggrin::ybiggrin:

When Matt was discharged from hospital we didn't have any discharge plans in place from the Prof so the Registrar and case manager felt there would most likely be three scenarios:

1. The Prof wouldn't worry about having us come all the way back to Sydney for a post op review and just have us follow up locally.

2. Follow up locally and when we were next in Sydney pop in and see him.

3. Follow up in 6 weeks. 

I was hoping for scenario 1 or 2 when I rang the Profs rooms today but got number 3 instead, so we are headed down again for an appointment on the 23rd May. After I read about what some of you guys go through just to try and see a doc, let alone a caring one, I sure as hell am not going to whinge about getting option 3!!!

I also asked for a copy of the pathology report to be sent to the GP so I can have a look at it. The receptionist said they do that as a matter of course and she added that the Prof will discuss it at length with us when we come to see him. He also wanted me to know that it was unremarkable and nothing sinister was found, he really is a lovely bloke but of course I will still peruse the report for myself well before the appointment time....

Much love, :Karl:
Dusty. xxx


----------



## Welsh-bird

Hey Dusty, Good to hear thing's are continuing to go well with you all. I know too well the 'let's get out of here quickly, before they change they're mind' scenario!!
Would you like someone to keep you company in Sydeny next month- I'm up for it!!
Sending much love and hugs xx


----------



## DustyKat

Woohoo Welshy, come on down! And let's face it, you couldn't have a better chaperone, not only for the drinking holes but if you had any probs with Ossie I know a great hospital with a fab IBD unit! 

Loads a love, :wub:
Dusty. xxxxxxxx


----------



## littlemissh

Hi Dusty,
I'm so glad all is well for Matt and that he is continuing to get better and fatten up.   )


----------



## Dexky

Damn, I guess I lost my bet!!  What are those plane tickets going for these days anyway??


----------



## Keona

ya..IS Matt fattening up btw?


----------



## tmgread

I'm from Kentucky, Dusty, and that's the only place I've ever heard anyone say, "hells bells." It must be an Australian term, as well.  This planet is such a small place!


----------



## clearwell

Well done to Matt,long may it continue.I hope things calm down for you all after your hell of a few weeks lol x


----------



## DustyKat

@littlemissh, thanks hun for kind wishes......:hug:

@Dex, awww you will never win. Plane tickets, buggered if I know! :lol2:

@Keona, well...I have asked him to weigh himself but he never seems to get around to it! Since is his appetite is very good and he is only pooping a couple of times a day I figure he has to be putting it on. 

@tm, fair dinkum! Hmmm, having something in common with them there Kentuckians is a tad disconcerting though! :lol:

@clearwell, thanks so much for the well wishes mate......:hug:

Well I bit the bullet and did the chicken out thing all at the same time this morning, that being, as I was about to head out the door to work, well not quite that close but it did enter my mind!, I told Matt he had to go back to Sydney for review! I didn't think Matt would be very happy about it, and guess what? he wasn't! Oh well I will just have to come up with some sort of incentive to make it sound simply irresistible! :ycool:

Dusty.


----------



## DustyKat

School started up yesterday, they broke up about the time Matt had his op, and he was keen to go, all went well. Any semblance of normality is sooooooo good! 

Dusty.


----------



## Keona

I hear ya!  funny you mention that as someone was talking to me about a "narrative"  I forget the name of the actual writing but it was about a man who was in hospital with cancer.  He use to run up and down the stairs before his procedures and surgery because he was nervous and loved to run.  Hs nurses caught him and told him to get back to bed..that he is sick.  He did just that but had plenty of time to reflect on his experiences and wrote about it.  I don't know why but this reminded me of your "semblance of normality" comment.  
...Oh, and the man is now cancer free.

I think you should buy him a dog... a great dane...thats good incentive


----------



## AndiGirl

A dog is a sweet idea!  I love my pooch!


----------



## DustyKat

Thanks Wendy and Andi! 

No way Jose! He'll leave home and I'll be left with it and I'm a lazy pet owner!......Get ya thinking caps on again! :lol2:

Matt came home from school today and said he has a science excursion to Sydney on Sunday week. He reckons he is well enough to go so that is good enough for me. He's not baulking at going back to Sydney for this! :ylol: 

I'm lovin' the normality, may it last forever! Yes, normal is good, very good in fact...:biggrin::biggrin::biggrin:

Dusty. :Karl:


----------



## Keona

great danes get a tough break...they're couch potatoes Dusty :


----------



## DustyKat

Oh well, I suppose I could whack a saddle on it and ride it to work! Yeah, that might work...:ybiggrin:

Dusty.


----------



## radchic

Yahoo...normalcy and back to school.  Life is good.  So happy things are going well...and with the price of gas, I may invest in a Great Dane as well! lol


----------



## Crohn's Mom

OH my gawd ! I just caught up on here and I am sooo excited to hear that Matt went to school!!  Wowwzzeerrsss !! :ywow::ywow:  That's such great news !:rosette1:

Dusty, you must just be over the moon with joy!


----------



## DustyKat

@Rachel, thanks hun and yep, normalcy is sooooo good! 

@T, thanks mate, I'm over the moon and into outer space! :ylol:

Well Matt continues to do well. School is going fab and he is spending whole days there, such a huge turnaround to his pre op days. I was speaking with his Chemistry teacher yesterday and he said that Matt is so much happier and he sees the old Matt emerging. I tell ya, that was so great to hear! He is looking well both physically and psychologically and he has put on 1.7kgs (or 3lb 11.96oz to the decimally challenged, :lol in the last 10 days...YAY! 

He has bloods done today, first since leaving hospital, and is off to see the GP tomorrow. I am hoping that it all remains very, very :boring:

I can never thank you all enough...:medal1:
Dusty. xxxxxxxx


----------



## Dexky

DustyKat said:


> He is looking well both physically and psychologically and he has put on 1.7kgs (or 3lb 11.96oz to the decimally challenged, :lol in the last 10 days...YAY!


That's why Americans are so smart!!  We have to remember ounces, pounds, tons, pints, quarts, gallons, feet, yards, miles etc. etc.   All you need to know is 10!!  Where's the challenge in that???

Thanks for another boring update to *my* thread Dusty!!  Sounds marvelously ho-hum!!  It's about time too!!


----------



## crohnicaly stinky

Great Dusty!  Yay for Matt!


----------



## xJillx

I am so happy to hear Matt is back at school and doing so well both mentally and physically!  

What terrific news!!! :mario2:


----------



## Zalanicht

Normality. My mom used that term a lot when I got better. Good to hear Matt is getting back to normal.


----------



## DustyKat

@Dex, yeah, yeah whateva...:ylol:

@Stinky, thanks mate. Hope all is going well with you and the Humira, still no pain? :wink:

@Jill, thanks for the well wishes hun!...:hug:

@Zal, yep, lovin' the normality! Thanks buddy...:hug:


Matt continues to be blindingly normal...:boring:

He went away on a school excursion for a few days and all went well, YAY! 

His bloods are all normal, not one asterisk in sight, not a one...:awe:

Now I am somewhat ashamed to say this...:redface:, sorry Wendy!, but Matt so didn't want to go down to Sydney for review so I tried to get him out of it. Didn't work though, the Prof still wants to see him, so we head down again Monday week. 

Sailing through the days on cruise control, man I hope this lasts forever! :ybiggrin:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

Happy trails, Dusty!!


----------



## AZMOM

Dusty!!!!!!!!!!!!  I'm so happy to read this!!!!!!!!!  :biggrin: :biggrin: :biggrin: :biggrin: :biggrin: 

Here's to many asterisk free days to come.

Love you - 

J.


----------



## DustyKat

*How F%^&$#g Freaky Is This Disease!!!*

Not that I'm telling you guys anything!

Back when Matt had his colonscopy and biopsies, the path report came back saying something like...has the appearance of Crohns but doesn't have the granulomas present used to positively diagnose Crohns.

So finally received Matt's path report from his surgery, I'm reading cobblestone appearance, skip area, abscess, crypt abscess, ileum to ileum fistula, chronic fistula, NO granulomas, a 200mm chunk of bowel to poke and prod to the nth degree and...summary...
NO CONVINCING EVIDENCE OF CROHNS DISEASE!!! Ahahahahaha, that's a crazy laugh by the way... 

YIKES! No wonder you guys in the undiagnosed club are pulling your hair out! 

Dusty. :ywow:


----------



## Crohn's Mom

*WHAT ??!!!????*

I am dumbfounded at that !!! Wow!! Wow !! Wow !! 

does that mean they are saying he does not have CD ??? 


:ghug: Save your hair !! :ghug:


----------



## DustyKat

Who knows! Nah, I reckon they will still think it's Crohns...if it looks like Crohns, acts likes Crohns and screws ya around like Crohns then it must be Crohns! Even without the *convincing* evidence. :shifty-t:

Dusty.


----------



## gypsigirl28

WOW!!! Although I have to say I am not surprised at all. lol They said Maddie had UC then that she didn't.  Still after two plus years they wont say what it is. cause of her age, I can understand how you can be confused etc.. 

I just dont understand what they actually need to have the proof they say they need to give diagnoses..


----------



## Becca1991

Thats the same with mine 
My colonoscopy report came back saying In the terminal ileum the mucosa was granular and erythematous. In addition there were serpiginous ulcers with florid inflammation nd ulceration.

The specimen report came back 
Sections from the terminal ileum four fragments of small bowel mucosa with patchy active ileitis present in one fragment with loss of villi, prominent mucosal and submucosal lymphiod tissue and intraepithelial inflammatory cells including neutrophils. The other fragments show a variety of changes with one appearing relatively normal and other showing intraepithelial inflammation. NO GRANULOMAS SEEN 

The histological features are mild but are suggestive of Crohns Disease

So many big words


----------



## Dexky

As long as they don't tell you they are no longer going to provide treatment, I don't guess it matters what they call it.  There is no danger of that happening, is it?


----------



## Welsh-bird

WTF?? 1 week away, and as if by magic, Matt's 'cured'. Dusty, can I please have some of what he's on?
Great to hear that thing's continue to go well for you all- long may it continue (on the drug regieme that is!)
Love, hugs as always xxxx


----------



## Keona

I just wanted to say that I really don't know what to say...   wow....

hugs to you


----------



## Crohn's Mom

LMAO ! Oh Wendy...that may be the best icon ever ! :ylol2::ylol2:


----------



## DustyKat

@Rosemary, thanks for dropping by hun, I know you have a lot going on in your own camp...:hug:

@Becca, yeah, isn't the terminology just fab...:lol:. You're right, your report has many similarities to Matt's and his Crohns was said to be mild and very mild! I was even celebrating at the time! Yikes! Thanks mate...:hug:

@Dex, no there wouldn't be any chance of things changing, well not that I think anyway! Thanks bro...:hug:

@Welshy, it's a miracle hun!!! If I find it, I'll bottle it up, along with some sunshine, and send it right over...:ylol::wub:

@ Wendy, ahahaha, you have the best emoticons! I don't really know what to say either!...:yfaint::hug:

Well from what I can gather, Matt's chronic fistula was where his original 100mm of diseased area was, that length didn't change. He then developed another area of disease about 80mm away, it was 12mm in length and caused another fistula from there to another area of ileum between these two areas. It was also the area responsible for the second abscess that adhered to the abdominal wall. Aside from these two deep ulcers that caused the fistula's, it would seem he only had small number of shallow abscesses/ulcers on the bowel wall of the affected area's, the disease itself is still rated as mild according to the pathology. (((shug))). Hell, does all that make sense, it does to me but, of course I'm writing it! :ylol:

We fly down to Sydney on the 22nd May for review with the surgical Prof on the 23rd. He is going to discuss the pathology with us then. I don't know if he will know about the unconvincing evidence of Crohns, as such, I just think the GI will have more of an idea. I might ring him when we get back from Sydney and see what his take on things is. 

Thanks guys, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

Have they offered any guess as to how long it took to develop that ileum to ileum fistula?  If they say it's "mild" crohns does that mean it may have been developing for years?  With no outward symptoms and no noticeable discomfort?

When is the last time Sarah was scanned, scoped, ultra-sounded or in any way had her insides looked at?  I know she has frequent blood works but, well you know how reliable those can be!!

I don't know what I'm getting at, it just seems Matt and Sarah may have too high a pain threshold for their own good!!  Does this make sense?


----------



## DustyKat

Yes, it all makes sense Dex, I know what you are getting at. 

I don't know Dex. They haven't said how long they think the disease itself has been present but he has no clubbing of his fingers. Sarah had clubbing and they predicted about 2 years for her, mind you I couldn't pick the clubbing that was there. I don't think it has been going on for years for Matt, I think he has maybe had it since the beginning of last year, stupid thing is I don't even know why I think that!

The only thing I can think of with the "mild" aspect of things is, other than the two deep ulcers that caused the fistula's, the rest of bowel in the affected areas had very little activity going on. 

Sarah has had no invasive procedures done since her operation. She did have X-rays and ultrasounds done when she had that episode of acute pain back in March. Haha, I remember saying when she had that pain that I would somehow find her having normal blood results as a comfort and how ironic that was! 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Can you possibly explain what "clubbing of the fingers" looks like ??
JJ has some nail issues; it's hard to explain but his finger and toe nails look like they are deteriorating and are very, very thin and (scaly)? Almost like they have been chewed terribly; but like i said it's his toes too LOL.  and they're all kinda "fat" ? 
Just curious   He has an appt. next month with a new dermatologist because the last one looked and said..hmmm...I don't know what that is ! Moving on....LOL
By the way...he is not anemic that we know of. I know that can cause similar issues.


----------



## DustyKat

​
I put this image in as the photos of real hands are pretty extreme. It can affect the toes also. As the name suggests it causes the ends of the fingers to bulge out. Sarah's fingers didn't look like this but I think the GI must have picked a distortion of the nail bed and it was one of the first things he looked for in Matt. It is a sign of chronic inflammation and Crohns is one of the causes. 

Here are a couple of old threads about nail growth.....

http://www.crohnsforum.com/showthread.php?t=10967&highlight=finger+nails

http://www.crohnsforum.com/showthread.php?t=5854&highlight=finger+nails

Hope that helps mate and I hope JJ's is nothing to do with what I've just said! :eek2:
Dusty. :rosette2:


----------



## Crohn's Mom

Ok, I can't for the life of me figure out how to resize my pictures to be acceptable to put here.  However, I did put 3 of them in my profile album.
So...if you wouldn't mind will you look at them and tell me what you think; is this considered "clubbing".  Warning...they ain't pretty LOL

Sorry for high jacking your thread :yfrown: That post just really caught my attention ! 
:rosette1:Tracy:rosette1:


----------



## DustyKat

When you deal with the things I do, I tell ya, those pics are positively pretty! :lol:

It is a bit hard to tell because as you say the size of the fingers is pretty uniform. I can perhaps detect a tiny bit of bulging on the fingers, but don't quote me on that as the nails are short and can sometimes produce that effect. The other thing that may point to it is, he does seem to have quite a bulge/rise of skin at the base of the nail bed but I can't really tell if that is independent of the size of the rest of the finger. You would generally expect that to be quite flat. Certainly bring it up with the dermatologist and when you are next at the GP/GI I would also ask them to take a look. To be honest I don't think it is something that doctors normally look for, with heart and lung type issues yes but not Crohns. 

Dusty. :Flower:


----------



## Crohn's Mom

> When you deal with the things I do, I tell ya, those pics are positively pretty


I'm suddenly very glad I do not have your job! :ylol:

I've been concerned with his nails for quite some time.  Hopefully the new dermatologist will have some answers for us 

It is hard to decipher between whether or not around the nail is swollen or not, because there is hardly any nail left on the fingers.  And the toes are so ugly who wants to keep staring to find out ?? :ylol::ylol:

Thanks for your input and time !
As always...you're the best !


----------



## DustyKat

No worries T! I hope the derma gives you an answer too, in the meantime just keep staring at 'em...:ysmile:

BTW, what is your avatar???

Dusty. :sun:


----------



## Crohn's Mom

It's a "Hero's Wall".  It was blank when the day of the walk started and they invited the kids over to each paint one of the feet. All of my kids painted one.
I think I will change it to the colored picture. It's pretty neat and I loved the concept!


----------



## DustyKat

Oh wow... :emot-waycool:

Dusty. :rosette1:


----------



## Crohn's Mom

I put the bigger version in my albums


----------



## Dexky

Hey T, that looks more like a problem with the nails themselves than clubbing.  Perhaps a vitamin issue or something?  Whatever it is, good for you for addressing it before it gets out of hand!


----------



## Welsh-bird

Damn- I saw the word 'clubbing' and in my 'happy' mood thought we were off out somewhere! Wrong thread...
xxx


----------



## DustyKat

Ya bugga Welshy! ahahahahaha

Welcome back hun, :wink:
Dusty. xxxxxxxx


----------



## Welsh-bird

You shouldn't have expected any less!! lol
NEVER underestimate the 'Welshy'!! xxxx


----------



## Dexky

Welsh-bird said:


> NEVER underestimate the 'Welshy'!! xxxx


You need to put that in your signature


----------



## DustyKat

Don't give her any ideas!!!! She is already out of control!!!!

Dusty.


----------



## Welsh-bird

Whatever!!! lol xx


----------



## DustyKat

Stop hijacking my thread Welshy...:rof:

Oh hell, now Dex will get on here bleating about he started the thread and it's really his and blah, blah, blah...:eek2:

Dusty. :ybiggrin:


----------



## Crohn's Mom

I love it ! I do the highjacking .. and Welshy takes the blame 
<insert evil laugh> :ylol::ylol:


----------



## Welsh-bird

Thanks T- good job I have broad shoulders! Lol
Just no more talking of 'clubbing', makes me feel old, and me dancing ain't a pretty sight!!
Xxx


----------



## DustyKat

*What is convincing evidence of Crohns then?*



DustyKat said:


> Back when Matt had his colonscopy and biopsies, the path report came back saying something like...has the appearance of Crohns but doesn't have the granulomas present used to diagnose Crohns.
> 
> So finally received Matt's path report from his surgery, I'm reading cobblestone appearance, skip area, abscess, crypt abscess, ileum to ileum fistula, chronic fistula, NO granulomas, a 200mm chunk of bowel to poke and prod to the nth degree and...summary...
> NO CONVINCING EVIDENCE OF CROHNS DISEASE!!! Ahahahahaha, that's a crazy laugh by the way...


That is the question...after reading and re-reading Matt's colonoscopy and surgical path results, the only thing that stands out as being *absent* and therefore *unconvincing* is granuloma's. So I let my fingers do the walking and walked all over Mr Google only to find that most Crohns patients don't, in actual fact, have granuloma's. What is the point of granuloma's being the benchmark of a diagnosis when most people don't have them anyway? 

Disclaimer: They are my words and interpretations and most likely sarcastic ones at that!

All comments and opinions most welcome! 

Dusty.


----------



## Crohn's Mom

I tell you what Dusty....
When Gab was 9 and had her colonoscopy and upper end, her biopsy's showed granulomas throughout her entire digestive track.  Everywhere!
However, her doctor said, hmmmmm....I don't want to "label" her as having Crohn's yet and this is just an "indication" and non specific.

I am quite sure I have all of her doctors reports from that time in my folder I have built; so if you would like me to quote exactly what was said, let me know and I will be happy too.

This flipping disease ! 
OH you don't have granulomas so you do NOT have Crohn's !
OH you have granulomas EVERYWHERE, but we don't want to (label) you yet, so let's just wait and see.
(Gab's doctor said to me..."It won't hide forever if she does. This is a teenagers disease and if she has it, it will rear it's ugly head then without a question!"
I fell for that then....I won't ever again!

Unbelievable with Matt's biopsy's reports! I just dont get it! 
I will pull my hair out for you.....save yours! :ywow::ywow:

much love,
~T~


----------



## DustyKat

Thanks T!

Yep, Gabs had all the signs but let's not label her and Matt doesn't have all the signs but we'll look past that and label him! 

Gee, I wonder why so many people are confused about this disease! :lol:

On a more positive note, Matt went to soccer training on Tuesday night! He has a looooong way to go before he reaches anything like match fitness but it's another slice of normality to savour and celebrate! YAY!

Much love, :Karl:
Dusty. xxxxxxxxx


----------



## Welsh-bird

Just stopping by to wish Matt all the best at his follow up on Monday. 
Hoping and praying that he will be following Sarah into a long remission,
Will be thinking of you all,
Hugs xxx


----------



## DustyKat

Hey Welshy! 

Thanks for dropping by hun...:hug: 

Thanks for the well wishes mate. We fly down to Sydney tomorrow, the only down side is we won't be able to catch up with Sarah...boo! She rang me today and said she has a caucus meeting tomorrow afternoon, followed by a dinner, and then some factional meeting to do with the uni on Monday....bloody politics! :lol: We fly home Tuesday. 

Matt is doing well and looking better and sounding better each day. The beginning of week 4 post op was the real turn around and he hasn't looked back. He has put on another 2.5kgs this week, now weighs 43.8kgs, so 5.4kgs since he was discharged from hospital 5 weeks ago. YAY!!!

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

What are you feeding that boy?  Upward and UPWARD Matt! Yay!


----------



## Dexky

(insert smiley drumming fingers here)....Well???


----------



## DustyKat

*Positive Report...*

Matt had his 6 week post op review with the Prof today and all went wonderfully well...:thumleft:

The Prof is very happy with the weight gain, the way he looks (colour) and his bloods. When he examined him he wasn't able to palpate any masses and he is pleased with the suture line and how it has healed. 

He said that he took out 20cm of small bowel and 8.5cm of large bowel/caecum. It turns out all of the bowel inflammation was confined to the original 150mm that was there on diagnosis. At the time of his diagnosis he had 100mm of definite involvement and a further 50mm that was borderline. All of the inflammation, that on imaging, appeared to be bowel way back from January, was in actual fact outside the bowel. It was the second abscess that was a fibrous mass adhered to the abdominal wall. He said that Crohns confined to the terminal ileum has the best outcome surgically as far as remission is concerned. Don't know how true this is. He no longer needs to see him as he is in remission and, in the most sincere way said, he hopes to never see him again but if we have any further concerns just to give him a ring, so that is nice to know. 

I asked about the...no convincing evidence of Crohns...and he said it was because of the absence of granuloma's. He said that pathologists don't like to label someone unless they have the microscopic evidence and he said he wouldn't like to label someone with Crohns either unless he was sure, but Matt definitely has Crohns, granuloma's or no granuloma's. 

Matt asked no questions and on leaving the office said...well that was a waste of time...gee, if only I had taken bets on that being the opinion he would have! :lol:

So we now find ourselves in very positive territory and I'm hoping, praying and wishing it stays this way for a very long lifetime! 

Onward and Upward! 
Dusty. xxxxxxxx


----------



## Welsh-bird

Must be good news and she's out on the p**s!
Far too busy dancing on tables to be updating us!! lol


----------



## DustyKat

Haha....sucked in Welshy...too slow!!!

And as for you Dex, haven't we already spoken about nothing to be gained from coming too soon???

Dusty.


----------



## Welsh-bird

Must have only been by a margin of seconds!!
Bet I was right and you are dancing away though- Fab news, and may his remission last a lifetime!
xxx


----------



## Crohn's Mom

I like Matt's diagnosis the best !:rof:

So glad he has been cleared to go on with his life!! :kiss::kiss:

love to you! 
(you superstar with your own fan club you) 
:rof::rof:


----------



## crohnicaly stinky

Dusty that is great news!  Yay for you and Matt!


----------



## Crohn's Mom

So I'm wondering....

Does Matt's good news, coupled with Sarah's 5 year + remission, mean momma gets to relax at all ?? Just a little ?? 

I hope so !! :ghug::ghug:

You deserve it !


----------



## DustyKat

Thanks guys for the well wishes, they are very much appreciated...:hug:

@T, I'm trying mate, really I am! I don't think I am very good at though. Maybe when there is more water under the bridge I will let my guard down a teensy bit...:lol:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## DustyKat

Well things have been chugging along just fine and dandy...until this morning...bugger. :voodoo:

Matt woke up with lower back pain and then started vomiting. He seems comfortable enough but the pain, he says it is more of an annoyance than anything because he can't get comfortable, and vomiting are persisting. He is only vomiting small amounts so I am not too concerned at this point. I have organised bloods for tomorrow morning so I guess we shall wait and see for now. 

If this has anything to do with Crohns I swear I will kill someone so lock ya doors!!! :lol:

Hoping, wishing and praying that this is a non event! 
Dusty. xxxxxxxx


----------



## gypsigirl28

I hope everything comes back okay with blood work. sending thoughts and prayers your way as always... 
My door is always locked, lol  But I can relate as to how you feel...
lots of love 
Rosemary


----------



## DougUte

I'm praying for you guys.  Hope things go well with the blood work.


----------



## Keona

he caught a flu Dusty b/c he has been ill and his immune is still lower that the average bear....  

tell Matt to get back to being boring   ..   and scholastic...  athletic ... or something...

xo  :hug:
Wendy


----------



## Keona

p.s Dusty - my door is always open to you


----------



## Dexky

I bet Wendy's right!!  Probably just a bug!  You can kill me Dusty :voodoo: if it makes ya feel better!  It wouldn't be the first time


----------



## DustyKat

Hahaha...you sure you want to keep the door unlocked???

Well Matt woke up from his slumber yesterday in no pain and with no further vomiting and was acting like nothing had happened! Started eating again and going about his business. 

I went to a parent/teacher thing yesterday afternoon and they told me there was a gastro bug going around. I'm still not sure if that what was going on with him, I'm more focusing on the lower back pain with that statement but if it's gone away and stays away then I don't give a damn as to what caused it! :lol:

He's still in the land of nod at the moment so that's gotta be good. I had the doc fax the blood request straight to the lab so he will take himself off there when he wakes up. 

Thanks again guys for your love and support and for putting up with an over reactive, raving lunatic mother!
Dusty. xxxxxxxx


----------



## Keona

YO!!!  

YOU ARE NOT AN "over reactive, raving lunatic mother" ... hope your door is unlocked b/c I am on my way over...  








BTW... this looks nothing like me...ha!

I hope it was/is just a bug Dusty   I really dont know...just wishful thinking... you and your family are long over due for a break!!!!!

xo


----------



## DustyKat

Haha Wendy, love your pic! 

Hmmmm...well I spoke to soon.

When Matt woke up he said he still had a niggly pain but not as bad as yesterday, unfortunately he was back to square one within the hour...left flank pain, nausea, vomiting, fatigue and no appetite. I took him to have his bloods done and made an appointment with the GP for tomorrow morning. I also decided to pick a urine spec jar.

Matt eventually went back off to sleep this afternoon and woke feeling a little better. Pain not as bad but still vomiting. 

Thank god we have a good relationship and he feels at ease telling me things. I have questioned him at length about his pain and explained that perhaps he has a UTI, kidney infection or stone because that would explain many of the symptoms he has. He then told me has some testicular pain but absolutely no abdominal pain at all. So maybe, just maybe the cause of all this is the urinary system. 

Oh well, we'll see what the doc has to say tomorrow and what his blood results are. 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

?is that another tongue in cheek comment?  Since when is Matt comfortable talking about anything? 

Has Matt ever had kidney stones?  From others I've known who had them, the symptoms are spot on.  I wouldn't wish one on anyone but just this once, I hope that's ALL it is!!


----------



## DustyKat

Well he may be a man of very few words but the few he does speak are very succinct, straight to the point and to me! ahahaha. So yeah, he seriously tells me stuff that most teenage boys wouldn't tell their Mum's, thank god! :lol:

No he hasn't had any urinary issues in the past and I'm with you Dex, I hope that's ALL it is too!!! :eek2:

Dusty. xxx


----------



## Astra

Hiya Dusty
I hope everything's ok, I'm sure whatever it is the doc will fettle it!
Much love to you both, good luck, fingers crossed
xxxx


----------



## Welsh-bird

Everything crossed here too!
Now go him loads of 'mummy love'!!

Hugs and love xx


----------



## Mayflower537

Dusty, I hope everything goes well and it is nothing serious.


----------



## Crohn's Mom

Thinking of you all Dusty 

My niece actually had to go to the hospital last night for very similar symptoms and it turned out to be kidney stones! She happens to be pregnant, so her symptoms were only for the day and I urged her to go to at least get IV fluids and get checked out.  And of course...Matt's not pregnant! HAHA ... But I have heard that men do get the testicular pain with the stones.
I sure hope that is ALL it is as well !!

much love,
~Tracy~


----------



## Dexky

I know this will elicit some smart-assed comment but.....tick,tock,tick,tock!!  What did the doctor say?  A chronsian nursery rhyme!


----------



## DustyKat

Awww, thanks for all the well wishes guys...:ghug:

Well Matt is feeling better today, still a fair way off 100% but only has mild pain, no vomiting and has started eating again tonight. 

The GP thinks it is a uro-genital infection...either kidney, urine or prostate. His urine had just the slightest trace blood but nothing else, well other than ketones but in view of the fact he hadn't eaten for 36 hours that is not surprising. So we were leaning toward kidney, then Matt says, well it does burn a bit when I go, so we started to lean toward UTI. The doc said...most 17 year old males with a UTI would get it from the prostate. Urine has been sent for MC&S, the path lab was rung to test blood from yesterday for PSA and if these return normal results then a renal ultrasound has been arranged for next Friday. The GP doesn't think it will show anything so if infection is the problem or it resolves I will cancel it. 

I have rattling around at the back of my brain some references I have seen made to CD, and interestingly enough Ileal Crohns, to prostatitis. If it turns out this is what Matt has then I will certainly file that one away for future reference! :lol:. He also had issues deep in the pelvic/pubic region pre-op with inflammation and abscessing so I wonder if that could play a part this far down the track? Who knows? Not me! 

His bloods from yesterday showed his eosinophils were slightly raised but I guess the fact that he has some sort of infection would account for that. Otherwise everything was grossly normal including inflammatory markers, YAY! 

Hopefully starting to chug along again...

	
	
		
		
	


	




Dusty. xxx


----------



## AndiGirl

I'm glad that he is on the mend.  Ugh!  Vomiting is the worst.  He seems to be a fighter, so he'll be his usual active self before long.


----------



## DustyKat

Thanks Andi! 

Things have settled down since Friday. No further pain or vomiting and he is back to his usual self. May it keep on keeping on! 

	
	
		
		
	


	













Onward and Upward! 
Dusty. xxx


----------



## Crohn's Mom

OK you show off with the fingers crossed icons....where are the ones for the toes, and the legs, and the eyes, and the....well you get my drift!:ylol::ylol:

So happy to hear Matt is getting better and better ! 
:ghug::ghug:

xoxoxoxoxo
~T~


----------



## Keona




----------



## Crohn's Mom

Flipping hilarious !! ^^^ LOL


----------



## DustyKat

^^^^ See T, they're up there!!!

LMFAO Wendy!!!






  Guys...:hug:

Dusty. xxx


----------



## Welsh-bird

Made even the most miseable of Welsh gits smile...thanks Wendy!

Good to hear thing's continue to go well...must be 'mummy magic'!!
xxx


----------



## DustyKat

"mummy magic", you might be onto something there Welshy...

	
	
		
		
	


	





Thanks hun, :hug:
Dusty. xxxxxxxx


----------



## Welsh-bird

I'm sure being a witch and a magician are two entirely different things though...
(opening the door for Dex to come in on this one!) 
Love ya xx


----------



## DustyKat

Ah, but that's that's a good witch, just like Glinda from Oz!

Don't invite Dex in, I'll eat him alive, my pretty! 

Dusty.


----------



## Dexky

Hmmm, where was Glenda from??  Even a wicked witch loves her babies!


----------



## DustyKat

Glinda Dex, Glinda! From the land of Oz! No wicked witches here!


----------



## Welsh-bird

I've never heard of her!


----------



## DustyKat

What!!! All witches need a hero and she's mine!


----------



## Welsh-bird

I better start looking then...


----------



## DustyKat

I think you had, but I will share if you like!


----------



## Welsh-bird

I think I have one closer to home...but thanks for the offer xx


----------



## Dexky

I saw an episode of House Hunters Intl. in Oz.  The woman kept talking about the beadrooms!!  I thought she made jewelry, but no, turns out she meant bedrooms!  So I suppose Oz would have Glinda if one spelled it phonetically!!


----------



## DustyKat

Oh yeah...forgot about that.


----------



## DougUte

Good to hear he's back on the mend.


----------



## DustyKat

Thanks Doug! and you deserve a medal for finding the info in amongst all the drivel!...:medal1:

Matt continues to go well with no further sign of symptoms. His urine came back clear and his PSA is normal. I rang the doc to see if we could cancel the ultrasound set down for Friday but he said no...:yfrown:. He wants to be sure that all is clear it case it happens again. 

I think he will always ensure no stone is left unturned after Sarah! :lol:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## DougUte

Welsh-bird said:


> I've never heard of her!


Glinda was also known as The Good Witch of the North.


----------



## DustyKat

Well Matt had his renal ultrasound today and I am assuming that things must have gone well enough as the doctor wasn't called in and there was no urgency in getting the report out. He has had no repeat of his symptoms since last Friday so hopefully this was merely a glitch and I can now close the book on this chapter...







Dusty. xxx


----------



## Crohn's Mom

Great news Dusty!!
It will stay that way ! 

xoxoxoxoox
~T~


----------



## penguin

fab news Dusty


----------



## Dexky

No more chapters in this book please!!  Just start a new one!!  Matt's life of remission!!


----------



## DustyKat

With pleasure!!!


----------



## Crohn's Mom

I LOVE that idea, and title Dex !!  Do it Dusty ! 

xoxooxoxoxox


----------



## AZMOM

Good stuff Dusty! :ghug: :ghug: :ghug: :ghug: :ghug:

J.


----------



## DustyKat

Crohn's Mom said:


> I LOVE that idea, and title Dex !!  Do it Dusty !
> 
> xoxooxoxoxox


Yeah right. :ylol:

My literary skills would extend to....Matt is in remission...The End! 

Dusty. xxx


----------



## Crohn's Mom

I think we all know better...you can't try and pull that off now ! :rof:


----------



## Dexky

Hell, you could fill a few pages with curse words alone!!


----------



## DustyKat

Renal ultrasound results are in and the Conclusion reads: 

No cause for symptoms has been detected - normal urinary tract examination. 
Kidneys - normal
Bladder - normal
Prostate - normal
Testis - normal

Which is all fab, so I guess we just put it down to a glitch...those sort of glitches I don't mind one bit! I will happily go back to being...:boring:

Onward and Upward, to infinity and beyond! :ybiggrin:
Dusty. xxxxxxxx


----------



## Dexky

Good stuff Dusty!!


----------



## Crohn's Mom

Super great news Dusty! 

big hugs !
~T~


----------



## STLGirl

YEAH !!!  That's awesome news Dusty


----------



## izzi'smom

Good to hear that the uS was normal!


----------



## Astra

:allright:Brilliant fab news Dusty!
Sounds like Matt is now in awesome remission!
xxxxxx


----------



## Nancy Lee

That's great news Dusty!!


----------



## Astra

Can you believe that over 14,000 have viewed this!
Way to go Matt, you're famous!
xxx


----------



## DougUte

Great News!


----------



## DustyKat

Thanks for all the well wishes guys! 

Streuth you're a fair dinkum fab mob! :thumleft:

No Joanie! Dex will be thinking he is famous 'cause he started the thread! Ugh, as if we can do with his head being bigger than it already is...he's a veritable boofhead now! LMFAO! 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## DustyKat

Well Matt had his monthly bloods done Friday and I am very pleased to say the results came back boringly normal. I so love not seeing astericks!

:boring:  you all to tears. 

Dusty. xxx


----------



## Dexky

Best yawn I've had in a while  Thanks for boring me to tears!!


----------



## DougUte

In this case   Boring is Good!


----------



## Crohn's Mom

:emot-dance::emot-dance::emot-dance::emot-dance::emot-dance:

Best news ever! I adore boring!


----------



## Paddy Holmes

Two lucky kids, despite having Crohns, they have a terrific Mum!
I hope that Matt manages to get through without too much surgery...
love Paddy


----------



## DustyKat

Awww thanks Paddy!  

Matt continues to do well and I too hope that his surgery days over for a very, very long time. So long in fact that the cure comes first! 

He has just had his monthly bloods done and all remains on a steady and boring course, no asterick!...anda:anda:anda: 

Enjoyin' the mundane and hopin' it stays that way!
Dusty. :ybiggrin:


----------



## AZMOM

DUSTY!!!!!  That makes me smile.    

J.


----------



## littlemissh

Splendiferous news dusty, long may boredom continue.


----------



## Dexky

I hope so too Dusty!


----------



## Paddy Holmes

Had a horrendous night.No control at all and so tired today. Wish I could be bored!

I'm meant to be going to the hairdressers today and not sure whether to risk it...


----------



## DougUte

Good Deal Dusty!   Humira has been making my condition much more boring itself.


----------



## DustyKat

Thank for the well wishes guys, it is so appreciated...:kiss:

My wish for you is a my mediocrity! :ylol:

Dusty. xxx


----------



## Dexky

That's easy for you to say!  Huh?


----------



## DustyKat

Thank you Mr Dexky. Do I get out of detention now?


----------



## Dexky

Umm, exactly what did you edit..., cause that last sentence hasn't changed!


----------



## DustyKat

*Grrrrrrrrrrrrrrrrr.*

Well following on from Matt's Vit D deficiency...

I told him the results and we commenced him on Ostelin 2 daily and repeat the levels in a month. Because the GP had spoken with me he didn't need see him. 

So come last Sunday Matt says to me when is his appointment to see the doc. I say "huh"...I thought we discussed you not needing to go and he says well he didn't think it would hurt to have things checked out, waving his hand over his abdomen. Okaaaaaay, he said he is fine but it has my mind ticking over so I make the appointment and off he goes to the GP yesterday, well it turns out he has noticed some swelling on the left lower end of his incision over the past couple of weeks. He has no pain and it is only appears occassionally but now the thought is he has an incisional hernia and it sure sounds like that to me too. :voodoo:

He goes for an ultrasound in the morning. I know it isn't huge in the scheme of things but I just wish he didn't need to have further surgery at some point. 

I'm fed up and sick of it, not for me but him.  
Dusty. xxx


----------



## Crohn's 35

Awe Dusty, this disease is hard on us but my kid having it, I would take it instead of my daughter having it.  Now you have double worry, you and Matt and Sarah.  Lets just hope the ultra sound is ok or at least find some answers! Keep us posted on his results. Big hugs to you!!!


----------



## happy

Hi DustyKat, 
Those sneaky young men--good thing you trusted your momma instincts and made the appointment for him. They try not to worry us and then they end up worrying us more! 

You and your kids need/deserve a longer break from dealing with Crohn's related issues.

Sending hugs and the hope that it is just a minor hernia. :hug:


----------



## crohnicaly stinky

Dusty. Hope it all goes well for Matt.  Sorry to hear that he is having even the hint of a problem.  He can never say he isn't lucky with a mom like you.  Good luck to you both and I hope this is just a little bump in the road.


----------



## MADiMarc

Grrrrrrrrrrrr.  Right along with ya, sister!  My 31 yo is going through some medical stuff and I was thinking when will this kid get some peace?  So sorry for our kids.


----------



## lseibert

Awwww Dusty,

I'm sorry to hear that, I know what you mean about another surgery!! This Crohn's stuff gets old real quick.... 
Wishing you and your son wellness!
Hugs....:hug:


----------



## xJillx

I am sorry to hear this about Matt.  I sure hope another surgery isn't needed.   

Please let us know how the ultrasound goes.  

XOXO


----------



## Terriernut

Dusty I'm very sorry to hear that, and lets hope it's not a hernia!  But....hernias arent that big of a surgery (compared I may say to our other chronie surgeries)...and hopefully they can nip it in the bud with a belt or something else to delay any need for surgery in the near future.  I'm sooo sorry, as a mum you must be a basket case!


----------



## Emily

oh no Dusty :frown: hopefully they can get rid of that hernia asap. I know I have a tendency to let symptoms slide until they get real bad and then I worry my parents sick about it when I finally come clean. You must be so worried for Matt! I hope they can get it taken care of efficiently and easily so he can be back to enjoying full remission without any complications.


----------



## Dexky

Poor Matt!!  What are you gonna do when he goes off to uni??  Come to think of it, what is Matt gonna do?  You're gonna have to get really good at reading him over the phone!!!


----------



## Crohn's 35

Dexky said:


> Poor Matt!!  What are you gonna do when he goes off to uni??  Come to think of it, what is Matt gonna do?  You're gonna have to get really good at reading him over the phone!!!


You can bet they will both have Skype!


----------



## archie

I'm 37 and my parents worry rotten about me but I have the best mum in the world especially when it comes to dr's appointments and keeping me right, matt's very lucky to have you I don't know were we would be without great parents. Good luck to matt and hope he gets sorted very soon.


----------



## DougUte

Oh Dusty, what else does Matt have to deal with! I am sooo sorry.  We are there for you if you need us.


----------



## SandyM

Wishing Matt all the best. Hope all goes well.


----------



## DustyKat

Wow! Thank you all so much for your kind words and well wishes...

The ultrasound went fine but short of having Matt stand on his head and whistle dixie they weren't able to get the ?hernia to show itself. The sonographer said he couldn't see anything and I didn't get a call from the GP so that must indeed be the case. The X-Ray place did give us the offer that if Matt was in the vicinity and it popped out to come in and they would fit him in there and then and do a another ultrasound. I don't know the likelihood of that happening, since we are 25kms away, but it was nice of them to offer and who knows, stranger things have happened with Murphy and that bloody law of his! 

I will give the GP a ring next week, if I don't see him in my travels, and see what his thoughts are. As he is asymptomatic at present I imagine they will wait until they are able to either visualise it or he develops pain. 

Thanks again guys...:hug:
Dusty. xxx


----------



## jordan29

Awe Dusty and matt was doing so well hope he is ok Dusty  Linda xxx


----------



## Manzyb

Hey Dusty! 

i just saw this today.  i hope Matt is okay and he won't have to have another surgery.  That'd be awful.  Hang in there!  I often feel fairly bad for my husband and my mom, I know the disease is really hard on them as well.  I can only imagine what you go through with both kiddos having this sucky disease.  You're such a great mom, and they're lucky to have such an awesome support system!! Hugs to you and Matt!!


----------



## Tesscorm

Hi Dusty,

I've been away and just saw the post re Matt.  I hope that it turns out to be 'something' that can just be left and will not create any more concerns for Matt!!  Sending best wishes!!!!! :ghug:


----------



## Grumbletum

Aw, I just want to let out a big string of sweary words :-( Praying that it won't come to surgery again. Xxx


----------



## DustyKat

Awwww, thank you so much guys! 

Well I received the ultrasound results and spoke with the GP yesterday. 

The sonographer was right, they couldn't visualise anything and no abnormalities were seen. While ever he is asymptomatic we will wait and watch and the radiologist also noted on the report for him to pop him if ever it was out and he was in the vicinity. 

Thanks loads for the love and support! :hug:

Dusty. :soledance:


----------



## happy

Good news!! :dance:


----------



## lseibert

I'm so happy about the good news!!!

:hug::dance:


----------



## DustyKat

Well it's one year ago today that our suspicions were confirmed that Matt has CD. 

It's been one helluva of a year and one I wouldn't wish to revisit BUT we now find ourselves solidly in remission and I am hoping, wishing, praying and everything elsing that he stays that way until there is a cure!!! 

He has finished school and university for the year and is now pursuing some Maths to do over the Summer! Oh well, each to their own. :eek2:
Bloods due this week but he has been too busy sleeping and swimming to be bothered about them, I think today will be the day though. :ylol: 

Much love, :heart:
Dusty. xxxxxxxx


----------



## Terriernut

I too am very grateful that Matt is in full remission....long may it continue!!!

Whooo hoooo Matt!!! 
:heart::heart::heart::yoshijumpjoy::highfive:


----------



## Emily

Yeah!! That's awesome. May he continue making the most of remission! Oh how I wish the US had summer vacation right now. Hope he has a great summer


----------



## Jessi

Remission makes for a very happy anniversary! :hug:


----------



## Crohn's 35

Hey, great news!  You must be sooooooooo relieved Dusty...long may it continue!


----------



## SandyM

Good to hear some good news. Maths! I'm lost without a calculator these days, lol. Long may it continue. Fingers crossed.


----------



## lseibert

That really is the best news, I hope it continues for a long, long time.......


----------



## scl

Congratulations Dusty.  I heard a song the other day where one line stood out for me, "Take me off your worry list, it will be better that way."  Told my mom.  You too.  Enjoy this time of summer vacation, swimming, and fun.  You've earned it and then some. 

Remission....no sweeter word.


----------



## Dexky

DustyKat said:


> He has finished school and university for the year and is now pursuing some Maths to do over the Summer!


Already having withdrawal symptoms??  

Here's to many years of smooth sailing for Matt and Sarah!!:cheers:


----------



## DustyKat

Wow, thanks for all the well wishes! You guys are the best! :ybiggrin: 

Matt did in fact take himself off for bloods yesterday, picked up the results today and all is fine, even my latest inclusion, magnesium, is normal, YAY!. Vit D was the only result not back so I will pick that up on Monday.
His hernia is still showing up occasionally but he still has no other symptoms accompanying it. :thumleft: 

@Dex...yes withdrawals! One of his uni lecturers rang this morning and he was away to the uni maths department at warp speed to commence his Summer of maths! :eek2: :lol:

Much love, :heart:
Dusty. xxxxxxxx


----------



## Tesscorm

Great news Dusty!!!   I hope all continues well for him for many, many years!  :highfive:


----------



## Crohn's Mom

Wonderful news ! I'm so happy that everything continues to be so well and "normal" for him!! :dance::dance::dance:

much love,
xoxoxo
~T~


----------



## DougUte

Awesome news!


----------



## DustyKat

Thanks guys.  

Well finally got his Vit D results today and after taking 2,000 ui daily for a month his level is now lower than it was previously! Not by much mind but still lower. The reference range the lab uses is 60-160, last time his level was 53 and now it's 51. He is compliant with taking his meds so that's not the reason. 

The doc wants to see him so an appointment has been made for Friday afternoon. To say Matt is less than impressed would be an understatement! :eek2::lol:

Dusty. xxx


----------



## scl

My vitamin D levels are somewhat low too and I live in Hawai'i and take supplements.  I will be curious what the doctor makes of Matt's levels.  Keep us posted.  

Very happy for you and your kids.  It sounds like they are both doing well.


----------



## Dexky

Maybe a little less math and a little more sunshine

I hope it's a simple explanation Dusty!!


----------



## Crohn's Mom

Me too.. What Dex said... I hope is a simple explanation!  

Thinking of you... Good luck!


----------



## DustyKat

Haven't updated in a while, must be because things are boring! :boring: YAY!

All continues to go well, , he has a bit of a cough at present but nothing else. Uni has finally started up and he is keen as mustard! :ysmile:

Bloods were done last week and all is well. Vit D slightly better but still not fab. He stills spends a large amount of time in his cave but then it has been so wet here of late that the sun has been a rare commodity. Maybe things will progress a little faster when soccer season starts up. 
I spoke with his GP and we decided no need for further visits with him unless necessary. I didn't see LFT's included with these latest results but the GP swears he wrote them on the form, I have them faxed straight to the lab so didn't see the request, so I will chase that one up. If it was done he will now go to 2 monthly bloods, the GP doesn't want them any farther apart than 8 weeks and I'm happy with that, if not then next month again and then start the new regime. 

The hernia is still popping out every now and then but isn't causing him any bother, I hope it stays that way when he starts playing soccer! :eek2:

Onwards and Upwards! 
Dusty. :heart:


----------



## DougUte

Sounds like things are good.With Crohns things are never perfect. Keep on him about vitamin d.


----------



## izzi'smom

Love to hear good news! Hoping his D levels perk up before long.


----------



## Crohn's Mom

Great news !  

Am I the only one In this group that gets a twinge of fright when I see this thread has been updated ?? Lol

So very happy he continues to do well!


----------



## Tesscorm

That is great news!  I so hope it continues forever for him!!! :highfive:


----------



## kimmidwife

So glad to hear the good news!


----------



## LilyRose

That is great! thank you for sharing. I think it really helps everyone to see good news and lots of remission!

Take care,
LilyRose


----------



## Dexky

Phew!!  Thank goodness, it's still a snooze!!


----------



## izzi'smom

^^Agreed!


----------



## DougUte

Good deal.


----------



## DustyKat

Yikes! Didn't mean to scare ya! :yfaint: 

He has just finished his intensive school at uni and starts first semester lectures tomorrow. He's excited! Doesn't get better than that! :biggrin:

Thanks for the well wishes guys, it is so appreciated! :hug:
Dusty. xxxxxxxx


----------



## AZMOM

Third for the good news. I confess though that I'm with T - twinges of fear....  Ha ha

J.


----------



## DustyKat

Talk about jinx yourself!!! :eek2: 

Damn, blast, curse and feck! :voodoo: Matt has been having monthly bloods for ages so after discussion with the doctor we decided that after his last lot, last Friday, we would finally go out to 2 monthly. I got his results yesterday and he has dropped below normal with WCC and neutrophils. Not by much mind and the GP and GI don't want to do anything just yet as these sort of "one off's" can happen to anyone. Soooooo we will repeat the bloods next week. I know at this point it is no biggie in the scheme of things and there would be many of you reading this thinking, I wish that was our only issue! and rightly so! But man oh man I hate seeing the disappointment in his face.  (((sigh))). 

Am I worrying? Of course not! :shifty-t:

Dusty. :heart:


----------



## Crohn's Mom

Ummmm...well, I would NOT be one of the parents thinking I wish this was our only problem ! We don't get to pick and choose our emotions ~ and we certainly don't base them on "whose worse off" ! :hug:

Oh man, I know this has to be bugging you! I've got everything crossed that this is just a "fluke" and next week all will return to "normal"! Matt and Sarah are my success story heroes and very dear to my heart !! :ghug:


----------



## Tesscorm

Sending lots of wishes as well that this is just a one-time issue!!  Probably no real cause for concern yet but...  it's just that nasty grey cloud hanging above for the next week!  :mad2:

:rosette2:


----------



## ChampsMom

Praying for stress-free days and sleep-filled nights - aka - NO Worries - for us ALL!


----------



## lseibert

:hugusty,

I'm wishing you good thoughts for next week, that this is a one time thing.....Try to relax, and don't worry....


----------



## Dexky

Dusty, I'm gonna risk sounding like a moron here (shut up) but in light of Sarah's annual back to school issues, do you think Matt's blood changes could be attributed to  stress/excitement of beginning university?  Whatever it is, I know you're gonna worry until proven otherwise so try to relax!!...if you can't I'd love a nice tightly knitted brown scarf to wear with my uniform.  Just plain brown yarn please...no frills!!


----------



## DougUte

Dusty, I know easier said than done, but try to relax. The bloods are not way out of line.Could just be a blip on the radar screen.


----------



## AZMOM

Aaaaaaaw CRAP! I'm praying for a blip on the radar screen too. But even superwoman has to worry some days........

Love u -

J


----------



## Manzyb

Well, damn dusty!!!  Hopefully it is just a fluke and things will correct themselves.  

Keeping my fingers crossed for Matt, dusty!!    big hugs to you guys.


----------



## kimmidwife

Dusty,
I am keeping my fingers crossed that this is just a fluke and hopefully the next set of labs will be fine!!!!


----------



## Tesscorm

Hey Dusty,

How's Matt doing?


----------



## DustyKat

Hey Tess, :bigwave: 

Matt seems perfectly fine mate. 

He is going for his bloods today and funnily enough I am wishing so mightily hard that they are normal! :lol: He always leaves it to Friday which means, assuming there is nothing drastically wrong, I don't get to eyeball the results until Monday! Ugh! Nothing like putting Mum through the torture of waiting a couple of extra days...:ylol:

Dusty. xxx


----------



## Tesscorm

I'm sure it will all be fine!  But, WTH, why not worry an extra couple of days!  :lol:


----------



## DustyKat

Yeah, what's an extra couple of days in a lifetime of worry! :yfaint: :lol:


----------



## Astra

Aw I hope this is just a one off thingymebob too Dusty!
Try not to worry, (fallen on deaf ears I know)
You're a Mum, and it's what we do, it's a pain in the crack sometimes!
:kiss:


----------



## Kip1

Sending you a big hug Dusty. 
What a wonderful mum your children have though. 
You are an inspiration to many people on here.
Will send lots of prayers your way.


----------



## polly13

Dustykat -fingers crossed here that you will get good news on teh bloods and it is just a one time thing. 
Polly


----------



## kimmidwife

Dusty,
 Keeping my fingers crossed that his blood's come out normal and that you get good results Monday!


----------



## DustyKat

Thanks guys...:hug:

I didn't get a call from the GP yesterday so either there is nothing drastically wrong OR he doesn't have the results yet. Roll on Monday!  

Dusty. xxx


----------



## Dexky

What a shame!!  To have to wish for Monday!  Hope the news is good!!


----------



## DustyKat

Monday is here, the results are in and I am doin' the happy dance! 

	
	
		
		
	


	

























In case you hadn't already guessed all is back within normal limits.  I would have been so disappointed for all the obvious reasons but also because they would not have reflected what I am seeing in front of me. 

Thanks for all the well wishes. It is so appreciated. :rosette1::rosette1::rosette1:
Dusty. xxx


----------



## happy

DustyKat,
So yah...now you gotta find something else to worry about! So happy for you and Matt. :congratualtions:


----------



## polly13

Great News Dusty - delighted to hear good news:dance:


----------



## Kip1

Dusty

You are a star. I am so pleased both your children are feeling better. 

Will keep my fingers crossed that you can get back to having some easier kind of normality in your life.

Take care


----------



## Dexky

That's awesome sis!!!  Now, go and enjoy your life of leisure:wink:!


----------



## lseibert

That is wonderful news......so happy for you and your family


----------



## Astra

Totally fab news Dusty, now go and chillax!
xxx


----------



## izzi'smom

So glad to hear the good news!!!


----------



## Tesscorm

:medal1:    Woohoo!    :medal1:   So glad to hear!


----------



## imaboveitall

I like the other dancing kitties way better :biggrin:

Happy news RULES. Worrying bites :soledance:


----------



## littlemissh

Excellent news!
Would put a break dancing teddy on here but I'm not as clever as you!


----------



## AZMOM

Woo hoo!!!!!


----------



## kimmidwife

Fantastic. Sooo Happy for you guys!!!!


----------



## DustyKat

*Surgery Anniversary. *

Well it is 1 year ago today (7/4) that Matt had his ileocaecal resection...

	
	
		
		
	


	





In some ways it seems so long ago but in others just like yesterday. Matt has gone from a young man that was very underweight, in pain and developing a growing dislike to the percutaneous drain that had attached itself to him to now being pain free, healthy and full of life and vigour, he fair bounces around the place at times! :lol:

Am I stating the bleeding obvious in saying I don't ever want this to end!!! Long live remission!!!...:worthy:

Dusty. x:heart:x:heart:x


----------



## Crohn's Mom

Best news ever !! 
Happy Anniversary to Matt's health and mom's sanity! :heart::heart:

:biggrin:


----------



## Manzyb

:heart:That is amazing!!!!  

Long live remission for Matt!     This really is great news, Dusty!


----------



## Sascot

Great news, it must be fab!


----------



## imaboveitall

Incredible story and an incredible result. I bet he never has another issue. Permanent fixes RULE :cheers:


----------



## izzi'smom

Happy Anniversary!!!


----------



## AZMOM

Yay for Matt! Yay for mom!

J.


----------



## G's mom

Congrats!  So glad to hear all is well.


----------



## dannysmom

I just read all these posts here Dusty ... I feel bad I only dabbled on this forum at the time you were going through this with Matt and I did not support you. You give all of us so much support - even in the middle of your crisis you supported me, thank you. I am so happy everything has turned out very good for both Matt and Sarah. May it stay that way forever!


----------



## DustyKat

Good heavens Jeanne, you deserve a medal! :medal1: :lol: 

No need to apologise hun I understand but thank you just the same. :hug: 

And thank you sooooooooooo much everyone for the lovely words, thoughts and well wishes. You guys are the best! 

Dusty. :heart:


----------



## Tesscorm

Congrats!   I'm sure this is only the beginning of a very, very, very long remission!!!  :medal1:  Way to go Matt & mom!! :ybiggrin:


----------



## DustyKat

Matt was due for bloods in the next couple of weeks and I thought he would be bound to procrastinate about the whole thing so picked up the request a couple of weeks early. Lo and behold he picked the form up off the table yesterday and went and had them done! :yfaint: 

Still monitoring the B12, I picked up the results today and all were back except that one. They are all normal! :ybiggrin: I can now breathe a little easier for the next few weeks until the tension starts to build again. :eek2: 

Dusty.


----------



## Tesscorm

Great news, Dusty!!!    Feels like a weight is lifted when you get those good results - all seems good in the world! :sun:

:lol:  AND, he did them on his own initiative!!!  WOOHOO!!!


----------



## crohnsinct

Great news Dusty!  And what a responsible young man...going on his own.  Enjoy a week or two with no worry!


----------



## izzi'smom

Wonderful, and what a great relief that they are looking good! Hoping the b12 comes back fine as well...hooray for Matt!!


----------



## Sascot

That's great that the blood tests are coming back good!  Long may it continue.  Glad he's enjoying being well!


----------



## G's mom

Great, great news.  I can't believe it did it on his own.  You must be proud!


----------



## polly13

hurray for Matt - what a great guy for doing it himself,  glad they are all normal must be a weight lifted:thumright:


----------



## Livilou

Congratulations Dusty!! I am so happy that Matt and Sarah are doing well!!! I pray that 
 this wonderful bliss continues forever!!!!                        Kim


----------



## DustyKat

Happy Birthday Matt! (22 July)








19 Years Young!  


Dusty. 

	
	
		
		
	


	



​


----------



## Grumbletum

He hasn't changed much, then! Cute as a button. Happy Birthday, Matt x


----------



## Crohn's Mom

Happy, happy birthday to Matt - and hopefully many blessings
To come his way!


----------



## Farmwife

HAPPY BIRTHDAY MATT and many more to come!!!

Farmwife


----------



## crohnsinct

HAPPY BIRTHDAY MATT!  What a cutie patootie!  :bdayparty:


----------



## Livilou

Awww...Happy Birthday Matt!  My Trevor also turns 19 on July 29th!!!   Kim


----------



## Catherine

Happy Birthday Matt.


----------



## Tesscorm

:bdayparty: Happy Birthday Matt!!!!!!!!!!!!!!:bdayparty:

Have a GREAT day!:lol2:


----------



## izzi'smom

Happy Birthday Matt!!!!!


----------



## Kip1

Happy Birthday Matt.

Still so cute!!!!


:bdayparty:


----------



## AZMOM

He's so handsome!


----------



## upsetmom

:bdayparty:      HAPPY BIRTHDAY MATT


----------



## DustyKat

Well the 2 monthly bloods have been done and dusted this past week and all is good! All within normal limits :ybiggrin: Try wiping that grin off my face! :lol: 

His B12 is in normal range but still on the lower end and I am not happy about it. His current GP will be retiring in a few of weeks so I will wait to the new chap starts and start moulding him to my way of thinking! :ylol: 

Dusty. :boring: and luvin' it!


----------



## upsetmom

Great news Dusty  :ybiggrin:


----------



## Sascot

That's great news!! :yoshijumpjoy:


----------



## ellie

Great news re the blood tests!
As for "boring", I recall hearing there was an ancient (?Chinese) proverb.. "may you live in interesting times"!! 
I'm a big fan of normal path results and boring 


 HD


----------



## crohnsinct

Oh my gosh!  I was just thinking this morning how there are certain threads that when they get updated your heart skips a beat hoping that everything is O.K. and how this used to be one of those.  

So happy the results are good and you go get that new doc Dusty!


----------



## Farmwife

Glad to hear the good news!!!


----------



## Clash

Great news, Dusty!!:thumleft:


----------



## momoftwinboys

Thanks for sharing your great news.  I have become a fan of boring too!


----------



## Manzyb

That is great news dusty!!!  Very happy to hear it!


----------



## my little penguin

Great news


----------



## Crohn's Mom

Hip Hip Hooray !


----------



## KazT17

That's fantastic xx


----------



## Tesscorm

Great news!!!  Always so good to hear of our kids who are doing well!!  Woohoo! :banana:


----------



## Tink572

Great news!
(Another fan of boring!)


----------



## kimmidwife

Boring is awesome! So happy to hear good news. May it only continue!:thumright:


----------



## G's mom

I am so glad to hear all is well.  I just love seeing that check in the normal range.


----------



## DustyKat

Well we met with the new GP today. Matt is due to have bloods done and since to doc is new he wanted to eyeball him before going to me just ringing and asking, fair enough. He seems a nice chap and was very accommodating.  

I spoke about my concerns with Matt's nutritional status so he ordered all the usual...

FBC
E/LFT's
B12
Folate
Iron Studies
Vit D
ESR
CRP

He has added

Vit C
Calcium
Magnesium
Zinc 
POH4

I am happy with the order but Matt isn't! :eek2: poor thing. The GP  said the Vit C result may take up to two weeks to be returned. He wants to see Matt again in 3 weeks to discuss the results. 

I spoke about my displeasure that his B12 is persistently in the low to mid 200's. He is happy to supplement so no doubt based on what these bloods return he will discuss at the next appointment. We talked about testing his Methylmalonic Acid and I told him if he starts umming and ahhing about supplementation then I will expect that he orders the test at the next visit.  

So all in all a good consult. 

Happy Dusty!


----------



## polly13

Glad it went well dusty - hope the blood work is good.


----------



## Farmwife

I FEAR the Doc that doesn't give Dusty what she wants.:ytongue:

Glad it want well!:ysmile:


----------



## Mumof4

Glad it went well. I hope his blood results are good.


----------



## Crohn's Mom

Fingers and toes crossed for great results ! :thumleft:

xoxox


----------



## Livilou

I am so glad things went well with the new practitioner...fingers and toes crossed for good lab results!       Kim


----------



## Tesscorm

Glad all went with with the new GI...  and hoping the results are as good!!


----------



## Clash

Happy to hear it went well with new Doc! Hope all the results are good as well!!


----------



## upsetmom

Farmwife said:


> I FEAR the Doc that doesn't give Dusty what she wants.:ytongue:


Me too...

I'm glad things went well with the new GP.
Hope the bloods are good.


----------



## Catherine

We just have to work out how Dusty trains them to her way of thinking


----------



## jmckinley

Glad it all went well!


----------



## Sascot

Sounds good, long may it continue!  Just a few vials of blood then :shifty-t:. Hope the results are good.


----------



## hawkeye

Did your old GP retire?  GPs are hard to come by here.


----------



## Jmrogers4

Glad the visit went well.


----------



## Farmwife

Jmrogers4, Love the new pics


----------



## Jmrogers4

Thanks Farmwife, he was still willing to go on a "date" with his mom to dinner and a Broadway show (TapDogs).  I guess I better take advantage while I can because most of the time he would rather be with his friends guess that is what I can expect now that he is a teenager


----------



## AZMOM

Dusty - I have NO doubt you'll whip the GP into shape in no time.  :voodoo:

Love, J.


----------



## kimmidwife

Glad to hear it went well with the new doctor! Hope all the labs come back good!


----------



## DustyKat

Thanks guys, you are the best!  

@hawkeye - the GP retired. We have problems too in the rural areas. I don't think the city suffers with it though.


----------



## DustyKat

Well all of the results are in barring the Vit C, which was expected. It has been a bit of a journey this time...he had to have some of the tests repeated as they stuffed up with the blood tubes the first time. 

I have also done some soul searching since his appointment and decided that I really need to step back. If Matt wasn't going to a local university he would have to be in charge of his own health and so I feel it would be remiss of me not to hand over the reigns now while he still has me close at hand to fall back on should he need it. 

I have explained all this to him and told him that I will always be here if he needs me and should he want me to go to any appointments with him he only has to ask, otherwise the decisions and choices that may need to be made are in his hands. The only thing I have asked of him is that he do his own reading and research and whenever he does have a consult that he go in with both his eyes and his mind wide open. 

With that all said...

FBC - All well within normal limits except lymphocytes 0.7. They are sitting within their below normal range, considering the Imuran. So all good there. 

E/LFT's (Serum Chemistry) - All well within normal limits except Albumin (NRR 38-50g/L) 51* and Calcium (NRR 2.13-2.63mmol/L) 2.64*. Both just a snig above normal so may just be a one off. 

B12 - 238. So Still at the lower end of normal. This was one of the things that prompted my soul searching. I know Matt was a tad 'thingy' about supplementing so even though I am not happy with the level I have decided it is his responsibility to discuss it with the GP and make the choice as to what needs to be done, if anything. 

Folate - (NNR >630 nmol/L) 752

Iron Studies - 
Iron - (NRR 10-30 umol/L) 14
T'ferrin (NRR 27-53 umol/L) 30
T. Sat (12-45 %) 24
Ferritin (20-300 ug/L) 71 
...All within normal limits but hedging toward the lower end so something to keep an eye on in step with the B12. Matt is aware of this. 

Vit D - Normal - 100 nmol/L. We are slowly getting there David, Judith! Continuing to supplement with 2,000iu a day. 

ESR - (<30 mm/hr) 3

CRP - (<6.0 mg/L) <4 

Vit C - No Result

Calcium - As above

Magnesium - (NRR 0.70-1.00 mmol/L) 0.86

Zinc - (NRR 10-18 umol/L) 9.8*

POH4 - (NRR 0.80-1.40 mmol/L) 1.04

All in all very good results. As I have said, there are some things that I would like to see tweaked but I have armed Matt with the information and it will be up to him to choose what path he follows.

The doctor has asked that he see him next week, as opposed to the week after, to discuss the results. 

If you have reached this far then you get one of these!...:medal1:

Dusty. xxx


----------



## crohnsinct

WAIT! This doersn't mean your leaving us does it?  Leaving us and starting your own new forum...Parents of Independent Adults with IBD...and taking your dancing poo with you?


----------



## David

Hi Dusty   Various things:

1.  What is the result of the vitamin D?
2.  Did you end up having him do the methylmalonic acid test?
3.  Like vitamin B12, the magnesium reference range isn't too good if you subscribe to this paper's opinion, which I do.  It's excellent reading.
4.  The zinc deficiency isn't surprising to me.  It's somewhat common in Crohnies and much more prevalent in people with TI resection.  Excellent reading on Zinc.


----------



## Tesscorm

Glad to see his results are good!  It's such a relief when all is good! 

And, what a mom!!!  I aspire to be you!  :worthy:  

I so hope when the time comes to loosen those apron strings (and its not now  :lol that I can be the calm, reassuring guiding light you are to your kids! :Karl:  They're so lucky to have you!!!

But, as Crohnsinct asked...  you're not leaving us are you?!?!?!?


----------



## Manzyb

Dusty wouldn't leave us! 

I know that has to be hard on you to take a step back, but I think it will be good for him.  And knowing you are always there and you are always supportive, well, both of your kids are lucky to have such a great mom and support system!

Glad to hear Matt's bloodwork came back good . Big hugs to you and hose beautiful kids of yours!


----------



## awmom

Glad to hear Matt's results are good.  You are wise, and he will do well taking on more of the decisions....he has learnt from the best!


----------



## Catherine

I see David has provided some light reading for Matt.  I love to hear his opinion.


----------



## Judith

YaY!! Congratulations!!


----------



## xmdmom

I agree that it's important for young adults to take charge of their health and learn to advocate for themselves.  That said, I think it can be daunting to speak with a doctor and many adults bring support people with them, as extra eyes and ears.  

I don't know how it works in Australia, but in the U.S. my son (19) needs to sign a release to allow doctors to speak with me.  He still wants the doctors to talk with me too, but that may be because I am a physician.  In any case, you may still want to talk to your son prior to his appt to help him organize his thoughts, write a list of questions etc.

Here's a list of useful questions:
http://my.clevelandclinic.org/patie...appointment/questions-to-ask-your-doctor.aspx


----------



## upsetmom

Glad all the blood work came back good..

Your kids are lucky to have an amazing mum ....:Flower:


----------



## DustyKat

Thanks guys...:ghug:...I've said it before and I'll say it again...you are the BEST! :thumleft: 

Firstly, you are stuck with me for the foreseeable future! It's not that easy to shake off an addiction! :lol: 

@xmdmom - I hear you loud and clear.  I am in the mindset of it being a work in progress and I will remain on alert to any signs that may need a subtle intervention on my part. 
We don't need anything signed here, it is verbal consent on the part of the patient. 

That leads me into what you are asking David. Matt is a man of very few words. I often have to remind him that he wasn't born with a finite number of words so please feel free to speak openly and voluminously. :lol: So my approach will be to give him the information, with my opinion as I hand it to him :ybiggrin:, and then play it by ear from there. 

Is it killing me? Damn straight it is but as I said previously, it would be remiss of me if I didn't give him the tools to be a strong and confident advocate for himself. 



David said:


> Hi Dusty   Various things:
> 
> 1.  What is the result of the vitamin D?
> 100 nmol/L
> 
> 2.  Did you end up having him do the methylmalonic acid test?
> No. I spoke with the GP when he did the blood request and suggested to him that it might be prudent to do the test if the current results continue to sit at the lower end of the NRR.
> It isn't the only reason but certainly one of the reasons I did my soul searching. Matt is not one for doctors, tests, needles etc and even though he has exceeded my expectations to an incredible degree with the way he has handled everything since his diagnosis I am still very conscious of pushing him too far and shutting down the lines of communication. At this point he does tell me the things that I need to know and I don't wish to loose that.
> So with the seed sown with the doctor I will leave it to the doctor and Matt to discuss what may need to done, even if I am present at the appointment.
> 
> 3.  Like vitamin B12, the magnesium reference range isn't too good if you subscribe to this paper's opinion, which I do.  It's excellent reading.
> Thanks David.  I will show it to Matt and discuss it with him.
> 
> 4.  The zinc deficiency isn't surprising to me.  It's somewhat common in Crohnies and much more prevalent in people with TI resection.  Excellent reading on Zinc.
> Again, thank you and I shall also show Matt this article.  I don't why the GP wishes to see him earlier than planned but I am assuming it may be the zinc result? Either way I will start looking for a decent supplement that includes both zinc and magnesium and also see if the GP has any recommendations.


Thanks again everyone for being here and for who you are. :hug:

Dusty. xxx


----------



## David

Oops, I was misreading the vitamin D line you wrote, sorry about that   100 nmol/L is a lot better than he was last time.  I forget the exact number last time but I know it made my face scrunch.  100 nmol/L doesn't make me smile, but I'm not scrunching either so yay for progress!

:banana:

I'm sorry I was the grump in the bunch but I had to be talk about him being low end to mildly deficient in as many things as he is.  It's likely simply a manifestation of his resection, I just like giving the body every tool it needs to maintain a healthy immune system and overall health.  

If he can incorporate foods into his diet that would help with the magnesium, zinc, and iron, (click those) that would be best.  I'd be a little wary of a multivitamin but that's just me.  A low dose zinc and a separate magnesium supplement might be the next best alternative.  Careful with the zinc as zinc toxicity is a very real thing.  I'll be curious to see what your GP recommends.


----------



## DustyKat

Good grief David, you aren't being a grump.  

Matt's Vit D progression has been 53, 51, 58, 85, 100. So at least we are heading in the right direction!  

I hear you loud and clear mate and would also like to tweak many a thing myself. I have been looking to diet as a way of trying to boost things along so thanks for the added push in that direction. At least by going down that path it is a way that I can have input while at the same time still allowing him to maintain a level independence. 

I will update after the appointment next week. 

Dusty. xxx


----------



## mom2nick

So sorry to hear this!!!!  hang in there.  Saying prayers for you and your family!


----------



## DustyKat

Well Matt went to the appointment...ON HIS OWN...:lol: 

The GP spoke to him about his zinc deficiency and has prescribed a zinc supplement. He is to have a repeat blood test in 6 weeks so that will link up with his 2 monthly ones. 

In the meantime he is looking well and bouncing around the place so you can't ask for more than that! 

Dusty.


----------



## my little penguin

Good news- glad he was able to handle the appt by himself.
I goal to achieve for all of us parents.
Good news he is doing well


----------



## Farmwife

So glad to hear your bouncing baby boy is doing well.:soledance:

Good for you for letting him grow up.:thumright:

Grace however will always need her mommy, RIGHT?:frown:


----------



## kimmidwife

Great to hear Dusty! It is so hard to let them grow up isn't it? MY oldest is 17 so I know some of what you are going through.


----------



## David

What is the dosage of zinc and how often?


----------



## DustyKat

Thanks guys. 

I'm glad you asked that David cause I know bugger all about supplementing zinc...

It is Zinc Citrate 30mg 1 capsule nocte. 

Dusty.xxx


----------



## David

What does, "nocte" mean?


----------



## my little penguin

Latin every night


----------



## David

Cool, 30mg once a day should be fine.  50mg and above you start to worry about potential toxicity.


----------



## DustyKat

:lol: Just after I wrote nocte I went to the wiki and added medication prescribing terms under abbreviations. 

Yay! Thanks for that David. 

Dusty.


----------



## Tesscorm

So great to hear he's doing so well, Dusty!!!!  May it continue for ever and ever!! :banana: :banana:


----------



## Crohn's Mom

Awe Dusty I'm so very very proud of you !! 
Oh, and of course Matt too ! LOL

Wtg momma !
You know I'm right there with you with Gabs being 2 hours away and having to do some of her medical visits on her own over there :ywow:


I think we're growing up too ! :soledance:


----------



## DustyKat

:lol: We surely are T!  

You would have thought with Sarah taking that step three years ago it would be a breeze this time but nah! I reckon it's harder with Matt cause he is still in the house so the temptation to intervene is never far away! Don't desert me willpower! :lol: 

Dusty. 

	
	
		
		
	


	




 < me in my straight jacket!


----------



## DustyKat

Calling David.  

Do have any thoughts on Vit C reference range levels and Crohn's? 

Dusty. xxx


----------



## David

I'm afraid vitamin C isn't one I've delved very deeply into yet   I'm happy to do some research for you though if you provide specifics.


----------



## DustyKat

I don't have the result at hand but IIRC: 

35 umol/l (NRR 10-115) Not sure if the value stated is correct. 

I was just curious if you felt these reference ranges were a fair statement in the clinical context of CD. 

Dusty.


----------



## David

I know that if someone was lower end and showing any symptoms of deficiency, I'd increase intake.  And if someone was iron deficient, I'd increase vitamin C intake as it increases absorption of heme iron.  

I did a little poking around and here are a couple old studies:

1.  http://www.ncbi.nlm.nih.gov/pubmed/3760522 - Not uncommon for people with Crohn's not to get enough vitamin C in their diet.

2.  http://www.ncbi.nlm.nih.gov/pubmed/2702887 - Vitamin C supplementation in Crohn's isn't necessary unless intake is low.

Conversely:

3.  http://pmj.bmj.com/content/55/639/26.full.pdf - 7 of 10 Crohn's patients were deficient.

But as for the actual reference range, I haven't seen anything suggesting that it's bad.


----------



## David

Well, scratch that.  Give this a read over once or twice.

http://www.riordanclinic.org/research/articles/89024082_jom.pdf


----------



## DustyKat

Thanks for providing those links David.  

I shall mull things over a wee bit. Please don't feel obliged to research, I will have a look around when I have the time and you have more than enough on you plate. 

Dusty. xxx


----------



## DustyKat

The time for bloods has come again and the results are in:

Haematology: All well within normal limits. Lymphocytes within below normal range. 

Chemistry: All well within normal limits. 

CRP: 6.2 mg/L (NRR <6) So an ever so slight snig above. I am telling myself it is a one off and will be normal again next time! :eek2: That and listening at every opportunity for a sniffle and a cough! There has been the odd one! 

ESR: 6 mm/hr (NRR <30)

B12: 237 pmol/L (NRR 180-740) :yfrown:

Vit D: 106 mnol/L 

Zinc: 12.7 umol/L (NRR 10-18) 

He looks well and says he feels well so all is good. Hang on! I think I just heard a cough! :lol: 

Dusty. :sun:


----------



## Dexky

That's awesome Dusty!  I'd just assumed this old thread had become NA since Matt is healthy as a horse!  What did you come up with per Vit.C?


----------



## Manzyb

Glad to hear that he is doing well, Dusty!!


----------



## David

Hey Dusty,

They have found a correlation between CRP and magnesium levels.  Not only are people with Crohn's disease more likely to have magnesium deficiency, but magnesium is primarily absorbed in the terminal ileum.  Note that the serum magnesium test is pretty much useless in my opinion so sending him off to the doc for that is pointless.

It is REALLY HARD to get the RDA for magnesium in today's western diet.  Then with the additional losses and reduced absorption caused by Crohn's disease, in my opinion, just about everyone with Crohn's disease is deficient.  In fact, I believe it plays a critical role in the pathogenesis of Crohn's disease, for many.  

Nice to see the zinc up a bit.

Not bad on the vitamin D, would still like to see it higher.  Thing is, magnesium is a co-factor for vitamin D so that could be affecting that if he is indeed low in Mg.

*walks off muttering about B12*


----------



## Tesscorm

Great job Matt!!!  

Pretty soon you'll have to put away your corner rocking chair, Dusty, doesn't look like you'll be needing it any time soon!! :thumright:


----------



## Clash

Way to go Matt!!! I agree with Tesscorm, you may have to evay that corner chair!! Glad to hear he is doing well!


----------



## CarolinAlaska

Great news!  Very interesting about the magnesium...  I know PPIs (prevacid, prilosec, etc) can cause lowering of magnesium after chronic use...


----------



## kimmidwife

Great news! Interesting how different the reference ranges are that you guys use.


----------



## Catherine

I love the different range too.

The range for Sarah B12 is (150-700) and Kerry at 13 years the range is (200-700)
:ack::ack:


----------



## DustyKat

@David:

This was Matt's magnesium in November - (NRR 0.70-1.00 mmol/L) 0.86. 

What is the best way to supplement and how much daily? 

@Dexky:

I haven't done anything about Vit C as yet. :ack:

Dusty. :heart:


----------



## AZMOM

Great update!!!!!


----------



## David

Dusty, based upon this paper, *Matt is deficient in magnesium*.  They believe that that reference range is outdated and 0.9 mmol/l should be the lower end.

Taking it one step further, the problem with serum magnesium levels is the body does everything it can to maintain a constant serum magnesium level because it's so critical.  To the point of robbing from bone and muscle.  As such, serum magnesium is very often normal yet body stores are negative.  Getting most doctors to conduct a magnesium test that isn't blood based is really difficult.

Do an experiment.  Total up the foods your children eat a day and then figure out their magnesium intake based upon these magnesium rich foods.  Then look at the RDA for their age and sex (lower on that page).  Then multiply that RDA by say 1.5 because of their resections (magnesium is primarily absorbed in the terminal ileum) and we'll use that as a ROUGH estimate of how much they should be getting per day.  That'll help you get an idea if they're getting enough magnesium or not (I'll bet just about anything they're not).  

Pretty much any magnesium supplement is ok except magnesium oxide as it isn't absorbed very well.  I like to split it over 2-3 times per day in smaller doses.  The first paper I referenced suggests 600mg per day.

Supplement magnesium and I bet his CRP goes down and his vitamin D goes up and he does better overall.  Increasing dietary sources is also a good idea.


----------



## DustyKat

Hey David...

If I was to supplement, can you have too much magnesium? 

I have been looking at this preparation: 

Magnesium Citrate 61.8mg
Magnesium Chelate 23.4mg
Magnesium Aspartate 7.1mg
Magnesium Orotate 6.56mg
Total Elemental Magnesium 98.86mg​
Well Matt went to the GP about 2 and 1/2 weeks ago because his hernia had reared its ugly head again. This is the hernia that was thought to be an incisional one when it first popped up a few months after surgery. As it was the GP was able to palpate this time round and he said it was inguinal. This doesn't surprise me as Matt had a repair of a right inguinal hernia when he was 12 months old and at the time they (doctors) had changed their thinking on doing both sides at once. Wish they hadn't now! :lol: 

So he went for his ultrasound 2 weeks ago and it confirmed he had a left inguinal hernia. Then yesterday he to the GP for follow up. He gave him a referral to a surgeon and to his GI.
Uni has started back up so now all we need to do is work out the best time to organise the appointments. The surgeon is close by so he can pretty fit that in any time but surgery is a whole different matter. As is Port, Matt is fine but he hasn't seen his GI since he was diagnosed so his new GP wants to touch base with him and have him do a long term plan of care. Sounds good to me.  

Dusty. :heart:


----------



## David

Hey Dusty,

You can absolutely take too much magnesium.  It'll result in diarrhea.  This is a really interesting paper on magnesium absorption.  Basically, it shows that the more magnesium you take at a time, the less is absorbed.  We've evolved to get a little magnesium from our food and water throughout the day, not get 600mg from the horse pill we take now.  Which is why the preparation you have there is very interesting to me.  Is that JUST magnesium or does it have other minerals with it as well that you're not listing?

I hadn't realized Matt hasn't seen his GI since diagnosis.


----------



## DustyKat

Ah okay, thanks David.  

The preparation is only magnesium as listed. 

Matt did see plenty of GI's and and a couple of Crohn's specialists between his diagnosis and surgery and then had a final consult with the team in Sydney 6 weeks post op but nothing since. He hasn't had the need, as such, and the way it generally works, due to the distance involved but also as a general rule here in Oz, is that GP does all the ground work (bloods, imaging etc) and cc's the GI into the requests so that he also gets a copy of the results. We then only go to Port Macquarie on a needs be basis. I also have the GI's mobile number and can call him anytime I have concerns. 

Dusty. :heart:


----------



## David

Very interesting preparation of magnesium!   I like it.  If you were going to suggest it to him, how many times would you suggest he take it per day and how often apart if more than once?


----------



## DustyKat

Now, that is what I was going to ask you David! Great minds and all that...:lol: 

On reflection I think I will start out slowly for two reasons. Firstly, Matt is sitting solidly in the middle of the NRR we were given and not too far below your recommendation of 90 David. Secondly, given the first reason I believe it would be better to start with one tablet daily and then test every 8 weeks and adjust accordingly rather than start out too hard and risk the side effects. 

Your thoughts?


----------



## David

Does he take his normal Crohn's meds and supplements once per day or multiple times per day?


----------



## DustyKat

Once a day, about 1.5-2 hours after psyllium.


----------



## David

Would the conservative route be the way to go?  I really don't know.  This paper which I referenced regarding the adjusted reference range suggests 600mg per day.  But I also understand your desire to be conservative.  If he did split dosing of meds, I was going to suggest taking one of those each time for 200mg more per day as that would still be very conservative.


----------



## DustyKat

Food for thought David. I shall ponder things I think.  

The specialist appointments have been made and since neither is urgent I have been able to fit them in with his mid semester break and his end of semester break. 

The surgical consult is the 23/4 and the GI 26/6. His current GI is winding down his workload so he can concentrate on a political career. There will be a new GI coming into the practice so I have chosen for Matt to see him. They have put Matt down as a new patient so that he will have an extra long appointment, should be interesting blooding a new doc...:biggrin: 

Dusty. xxx


----------



## Dexky

Oh, to be a fly on the wall!!!  Good luck…new GI!


----------



## ThankGoodness

David said:


> Would the conservative route be the way to go?  I really don't know.  This paper which I referenced regarding the adjusted reference range suggests 600mg per day.  But I also understand your desire to be conservative.  If he did split dosing of meds, I was going to suggest taking one of those each time for 200mg more per day as that would still be very conservative.


My GI tests for a bunch of different minerals and vitamins.  He has me on 400mg of magnesium a day but I'm going to take that article in to him.  Thank you for it!


----------



## DustyKat

Matt has been complaining of some lower back pain of late and also the odd upset stomach. He said it is a little like his first presenting symptoms but he doesn't think it is Crohn's. Trying hard not to engage my brain into overdrive here! :lol:

The pain seems to have coincided with the start of uni so I don't know if it is due to sitting for long periods or whether it is making an already existent problem more noticeable. (((shrug))) Anyway he asked that bloods be done and that happened last Thursday. I don't have all the results back but the ones that should show an issue have been returned and his inflammatory markers are normal (made a blunder with the values Dex and T) as are his haematology and serum chemistry.  Last time his CRP was a snig above normal at 6.2 (NRR <6) and this time it was 5.6. Could that be the magnesium effect David?? Even though it is only a small dose and not long commenced. I don't have his Vit D result or other Vitamin results yet. 

Although well within normal range his ESR is slowing creeping up 3...6...9 with a NRR <30. I saw the GP at work and had a talk with him about EIM's that run independently of intestinal activity and more specifically those that affect the spine so he will see Matt about it. Now did I say something about my brain and overdrive??? :lol: 

Other than that all is going well.  

Dusty. :heart:


----------



## David

DustyKat said:


> Last time his CRP was a snig above normal at 6.2 (NRR <6) and this time it was 5.6. Could that be the magnesium effect David?? Even though it is only a small dose and not long commenced.


Yep.

Just to check, these new symptoms didn't commence at the same time or shortly after he began the magnesium, did they?

I sure would love to see him get a fecal calprotectin done.


----------



## DustyKat

I have thought about that David and I having a feeling the back issues have been around for a while and uni has exacerbated them. 
The stomach issues are newer though and I am not sure if they coincide with the commencement of magnesium or not. I did look to see if that was listed as a side effect and there is no obvious mention of it that I could find. The other thing that I thought may be a contributing factor is he is not eating breakfast on weekdays but rather opting to eat around mid morning. As a result he is taking his meds on an empty stomach before he leaves home, so starting a few days ago he is now taking them at tea time. Being the weekend it is hard to gauge the effect as things are out of the weekday routine but his appetite appears to have improved to me. 

I shall discuss the FC with him and hopefully he will raise it with the GP. 

Thanks! :heart:


----------



## kimmidwife

Keeping my fingers crossed for him that it is not the crohns and just a side effect of university!


----------



## Dexky

Did Matt do summer classes?  I can't imagine Matt getting too worked up over resuming classwork, unless he's just overly excited to get back at it.


----------



## DustyKat

No Dex, nothing over Summer as there was nothing suitable. 

I don't think his stomach issues are related to uni. He does have a large workload, as mentioned in the My Life post...5 units, tutoring and marking 60-80 assignments a week...but he says he is fine with it all, we shall see. 
I think his back issues may be exacerbated by uni though due to the long periods of sitting and his work isn't helping with the situation either. (((sigh)))

Pressing on Dusty.


----------



## AZMOM

Big hug and prayers its just a blip on the radar screen that has nothing to do with Crohns!!!! I agree with David that an FC is an excellent idea. It's been a great early warning system for us. 

J.


----------



## Manzyb

Hey Dusty  I do hope that Matt's symptoms are nothing to get too worried about.  I do know how us moms worry about everything though!  Matt and sarah are so lucky to have you on their side!


----------



## DustyKat

Calling David and anyone else that would like to chime in. :biggrin: 

Collected the rest of the results today: 

B12 - 237...again. (((sigh))) I have spoken with Matt about this but I imagine he is not pushing it with GP...actually I doubt he has mentioned it. Me: blah, blah, B12, blah, blah, blah. Matt: It's normal. Ugh! 

Zinc - 14.2.  

Vit D - *103. Now the thing is this result is lower than the January one which was 106. Is this just a one off glitch or something else at play? I was expecting that it would continue to climb as it has since supplementing and more so in view of the fact that we are now supplementing with Magnesium. 

Dusty. xxx


----------



## Catherine

Sarah had a similar b12 level, gp said supplement wouldn't hurt, so We did.  B12 is now in 400s and hemoglobin is the highest it's been in years.

I asked GI whether we should continued b12 supplements and she said yes.

I'm not  sure what I am trying to say here but GI is now telling us to keep supplementing when b12 which are now much high than Matt.


----------



## David

Dusty, have you printed out any of the papers that showcase that B12 is NOT normal?  If you printed out 2,3,4,5 papers showcasing that it is not and put it in front of him, maybe that would help?

Matt is on 2000iu of vitamin D, right?


----------



## Sascot

Sorry to hear your poor brain is back in overdrive! Don't think our kids ever fully realise just how much time we actually spend worrying about them :smile:.  Hope the tummy and back issues ease up!


----------



## DustyKat

@ Catherine - I know exactly what you saying hun and that is where I would like Matt to be at. Thanks.  

@ David - I did print out a couple of things a long time ago but nothing recently, I will revisit that. I will also show him his results in the three months post op (580) and then the steady fall off and plateauing at 237/238. 
Yes, he is taking 2000iu of Vit D daily. 

I think one of the most challenging things I have found with this disease is dealing with it when they are teenagers/young adults. Mind you I have not dealt with it when they were of a younger age so I may well be speaking out of turn there! :lol: 

They are at an age when keeping the lines of communication open is paramount and so you find yourself walking on egg shells much of the time in attempt to keep an even keel. They are beyond the age of saying...because I said so...as that will more often than not result in shutdown. Then add to that the need to hand over their care at some point and this is now where I am at with Matt, that does not mean I will not step in if needed and if push comes to shove then I will speak with the GP. 

As you would know Sarah has been managing her disease for some time now and is doing very well with it but I need to recognise that Matt is a whole different kettle of fish and my approach will need to change. I do believe that much of the problem with Matt lay in the 6 months from diagnosis to surgery, his repeated setback after setback and the associated hospital stays, procedures, bloods, drain and on it goes...his mindset since that time has been if it ain't broke don't fix it, he sees his blood result and it is in the normal reference range. I can see where he is coming from with this but it is now my responsibility to steer him away from that way of thinking and instead recognise that it will be far more beneficial for him to take a proactive and preventative approach to his disease rather than the wait and see approach and then forever be playing catch up. 

Dusty. xxx


----------



## David

I personally think 4000iu or even 5000iu of vitamin D per day would be worth trying.

This paragraph in the vitamin B12 entry of the wiki has the references you can print out:



> Vitamin B12 deficiency leads to a serum build-up of methylmalonic acid and homocysteine. Because of this, Homocysteine and Methylmalonic acid levels are considered more reliable indicators of B12 deficiency than the concentration of B12 in blood. Upwards of 50% of patients with vitamin B12 levels between 200–400pg/ml (147.6-295.2pmol/L) will have a vitamin B12 deficiency on the basis of elevated levels of homocysteine and methylmalonic acid.[7] Other studies and papers suggest the same with slight variances on the levels.[11], [12], [13], [14], [15], [16]


----------



## CarolinAlaska

David said:


> I personally think 4000iu or even 5000iu of vitamin D per day would be worth trying.
> 
> This paragraph in the vitamin B12 entry of the wiki has the references you can print out:


Why go up with the vitamin D if he's already over 100?


----------



## David

CarolinAlaska said:


> Why go up with the vitamin D if he's already over 100?


Dusty is in Australia where they use pmol/L.  100pmol/L = 38pg/mL (divide by 2.6) which is the US unit of measurement for 1,25-Dihydroxyvitamin D.


----------



## crohnsinct

DustyKat said:


> but it is now my responsibility to steer him away from that way of thinking and instead recognise that it will be far more beneficial for him to take a proactive and preventative approach to his disease rather than the wait and see approach and then forever be playing catch up.
> 
> Dusty. xxx


HA!  Unfortunately many are trying to teach their docs the same thing. :ymad:


----------



## Dexky

David, w/o me doing any research which just gives me a headache anyway…Is it more common for methylmalonic and homocystein acids to be elevated in crohns patients?…and if so, is there a better B12 value range suggested for them?


----------



## David

Homocysteine is a better determinant of folate whereas methylmalonic acid is the big one for vitamin B12.  As methylmalonic acid levels are a much better determinant of B12 deficiency than serum B12, and considering how often people with Crohn's are deficient in B12, I would say yes, people with ileal Crohn's commonly have elevated methylmalonic acid levels.  The problem is, getting a doctor to run methylmalonic acid AND having the insurance company also go along with it is pretty damn tough.  As such, considering methylmalonic acid levels are often elevated at B12 levels of 400pg/ml and below, I suggest everyone get their level above 400 and even better, 500 to be safe.


----------



## Dexky

When you did your B12 survey, I posted that EJ's went from red-flagged as too high in Sept. last year at 1037pg/ml to 863 high normal in Dec..  Can you foresee any problem with a level too high?  It has never been discussed by the GI.


----------



## David

I admittedly don't know all that much about high B12 levels, sorry.    I only focused my research on low levels since that's what people here tend to see.


----------



## Farmwife

Dexky said:


> When you did your B12 survey, I posted that EJ's went from red-flagged as too high in Sept. last year at 1037pg/ml to 863 high normal in Dec..  Can you foresee any problem with a level too high?  It has never been discussed by the GI.


I had the same question early this year. Grace to our SHOCK was high over 900 for her b12 and was NOT supplementing.
Here's a link explaining some causes. It might fit with his PSC.:yrolleyes:
Plus one of the causes have to do with Eosinophils. That fits Grace.:yfaint:
http://www.livestrong.com/article/300753-what-are-the-causes-of-high-blood-levels-of-vitamin-b12/


----------



## Dexky

Thanks FW!  PSC isn't mentioned but I looked into the protein carrier theory.  Tacrobalamines I and II blah, blah, blah….I know how Matt feels.  It's normal at 863!!


----------



## DustyKat

Soooooooo...

Strike me down! After all my talk of encouraging Matt's independence I spoke with the GP yesterday about his B12. :eek2: 

After a bit of toing and froing I made my point, :lol:, and he is happy to start supplementing him via injections. He will also discuss it with Matt and explain the reasons why. 

Happy Dusty.


----------



## Sascot

Bet he was really happy with that! :smile:  Point for mom!


----------



## AZMOM

I just love you Dusty. Matt couldn't hand pick a better momma!


----------



## my little penguin

What b12 can be too high ?????
DS's last two levels were 1148 in feb and 1251 in march
He does not supplement more than what is in his peptamen jr.
No one said anything about it


----------



## CarolinAlaska

No, can't be too high.  Maybe too high to need supplements?


----------



## David

Yes, you can have too high of a vitamin B12 level.  It may be nothing, it may be a sign to cut back on supplementation if you are supplementing, or it may be the sign of a serious condition.  I don't mean to scare anyone with that, but feel it's necessary to post it.


----------



## CarolinAlaska

Not sure what I think about that, David.  I think many (most?) people's vit B12 tend to be higher than the "normal limits" of their labs.  The article is not specific about what a "high" cobalamin, but it does make me wonder...


----------



## Crohn's Mom

Hey Dusty , sorry to highjack here, but I thought this might be the perfect place to ask since you talk so much of vitamin levels in re of Matt 

I got JJ's blood results the other day and I have been trying to figure out what the deal is.  His Endocrinologist said that his Vitamin D level is quite low.  He's at 19 with normal range being 30-300.  
He recommended that we supplement with 1500-2000 mg (?) per day ?? 
I know you and David seem to be quite well versed in this area...Is there a specific Vit D you would recommend that I get for him ?  He has just turned 15 (not sure if that matters) 

Also, what the heck would cause this ?? We live in Florida ! He is constantly outside with his friends ... :yfaint:


----------



## my little penguin

Vit d can be low for many reasons including crohn's or other autoimmune disorders.
It can also be low if you have general inflammation going on in the body such as asthma or allergies .


----------



## Crohn's Mom

Thanks MLP 
Not sure on Crohn's, however, he does have asthma, allergies, and psoriasis ! Maybe that's it ? His allergies have been awful the last month +. Although, no issues with asthma or psoriasis lately...
Interestingly, his endo doc did mention the possibility of malabsorption.


----------



## my little penguin

We were told by DS Gi prior to dx 
If a kid has inflammation going on from whatever the source ( including asthma )
The body has to work harder ( needs more calories) since it is so busy fighting the inflammation ( and using the vit d levels up btw )
Hope you get to the bottom of it soon.


----------



## DustyKat

Hey T...:hug: 

I am assuming that JJ has fair amount of skin exposed when he is outside and he isn't using sun screen? 
If that is the case then I too would be thinking along of mlp, perhaps his allergies are playing a part. But in view of the fact of where you live and JJ is an outside kid I would have thought that is a significant deficiency to have so would also be looking to a malabsorption problem and why. 

I am not as up on Vit D as David.  Ensure the type you supplement is *D3.* I looked into it and found that tablets were not the most readily absorbed but rather gel caps were the way to go. We have not tried injections or sub lingual drops. These are the type of caps we use...







...the brand is Ostelin but I imagine that is an Australian product. 

I don't know that 1500-2000iu would be sufficient straight up, David would be better able to advise on what would be a preferred dose and perhaps a brand to go for. The gel caps we use are 1000iu.

Dusty. xxx


----------



## my little penguin

http://jcem.endojournals.org/content/96/7/1911.short

this one covers ALOT on Vit D


----------



## Crohn's Mom

Thanks a bunch Dusty ~ I thought it was D3 but I wasn't positive.
Do you think I should start him with more than 2000 iu at first ?

MLP thank you for the link ~ I will read it for sure


----------



## DustyKat

I think David may recommend more than 2000iu straight up but I would like his opinion on the results. 

Dusty. xxx


----------



## ChampsMom

The only thing on Alex' bloodwork that consistently is low is his Vitamin D level - his is 11 :yrolleyes:  He was on Vitamin D supplements is 50,000mg (one pill) per week.  Interestingly enough both my Mum and stepDad take the same dose (prescribed by a different doctor - non-Crohn's related).

His B12 was also over 1,000 - but the doctor wasn't overly concerned about it.


----------



## David

Crohn's Mom said:


> Thanks a bunch Dusty ~ I thought it was D3 but I wasn't positive.
> Do you think I should start him with more than 2000 iu at first ?


You could start him at 2000iu if you want to be conservative.  But then get him retested in 4 weeks.  If it was me, I'd probably be looking at 4000iu.  Or, if they're not on a thiopurine, 2000 and more time in the sun with trunk exposed.

Note that there are vitamin D cofactors including zinc and magnesium that Crohnies are commonly deficient in that are required for vitamin D to function properly.


----------



## Crohn's Mom

Thanks David
He's not on a thiouprine, hes only on human growth hormone injections and omeprazole right now, so I think ill start with the 2000iu.


----------



## David

Dusty, I thought of you and Matt this evening.

If I recall, Matt is supplementing zinc due to deficiency.  Well, it turns out that nickel can interfere with zinc absorption and too much nickel is VERY bad.  Give this thread a read.

Is Matt taking in too much Nickel?  I don't know.  But I think it's a possibility.


----------



## DustyKat

Thanks David.  

I have had a quick browse, time is my enemy at present :voodoo:, and nothing jumps out at me but I will reserve my opinion to when I can give the topic and question the time it deserves. 

Dusty. :Flower:


----------



## DustyKat

I haven't forgotten David! I am still ingesting the info. 

Update: 

Matt saw the general surgeon today. He was a very nice chap and was happy to answer all our/my questions...:biggrin:...and explained everything to Matt about the op. 

He had no trouble feeling the hernia, due to Matt's lean frame, but it is still small in size so doesn't feel the procedure is urgent. I think we will go private so Matt can decide to have the op at a time that suits him. 

The surgeon said it should be very straightforward. It will be day surgery with only a small incision required and if all goes according to plan the procedure itself should only take about 20 minutes. He will only be in for another couple of hours after that. He will be given antibiotics during the procedure and one dose after. 

He won't be able to drive for about two weeks and then just go back to doing normal activities as he feels he is able. 

It will be up to Matt to decide if he has the op next semester when his workload is much reduced, compared to now, or wait until after both the completion of the soccer season in September and the finish of uni in October. 

Matt was actually quite animated and interactive today which was good to see. 

Best response of the day (is it any wonder I accompany him :lol: 

Surgeon - Where did you have the resection done?

Matt - Sydney. 

Surgeon - Which hospital? 

Matt - I dunno, somewhere in Sydney. (He was only there a total of 5 weeks as an inpatient, not to mention outpatient visits!) 

So all in all a good appointment. :thumleft::thumleft::thumleft: 

Dusty. :Flower:


----------



## Dexky

DustyKat said:


> Surgeon - Where did you have the resection done?


Too bad he didn't raise his shirt, point to his scar and say "right here"!!


----------



## DustyKat

Feck me! How did I know you would say that?! 

I must be bloody psychic! :lol:


----------



## crohnsinct

Oh yeah he has to plan this operation very careful with his "library" schedule and all:ylol:


----------



## DustyKat

:kissgrits: cic!.....and leave my sunny dreamworld alone! :lol2:


----------



## crohnsinct

AW!  I have missed your grits!


----------



## DustyKat

Well since the sun shines out of my...I must always bring light to your life. :sun:


----------



## ChampsMom

Dexky said:


> Too bad he didn't raise his shirt, point to his scar and say "right here"!!


LOL!!  That is *exactly* what I was expecting and am certain what would come out of my son's mouth!  :yfaint:


----------



## Sascot

Glad the appointment went well.  Plus I had a good laugh reading the posts afterwards - thanks for that!


----------



## DustyKat

Well today was the appointment with the new GI. I am pleased to say all went well and he is very approachable and friendly and he has given us his mobile number and email address. The consultation lasted about 45 minutes. I would put the GI in his early thirties which I expected after googling info about him. :ybiggrin: 

He had initial concerns regarding the fact that Matt has not been followed up for 2 years by a specialist and in view of the Matt's age of onset and severity of disease if biologics had even come into the equation. So it was at this point that we had an in depth discussion of the timeline of events from diagnosis till now. 

He is very much of the opinion, for the same reasons as above, that we must do our utmost to maintain remission due to Matt being in a high risk group.

Now to treatment:

Imuran - He will stay at his current dose for now. He wants to consult with Matt again at the end of the university year, so late October, early November. He will then have metabolites done and if need be he will up his dose accordingly. 

He wants to add Pentasa into the mix, 500mg twice a day and has written a script. I mustn't have had my poker face on because he asked if I didn't like Pentasa. So again at this point we had another long discussion about Pentasa and its value in ileal disease. He pulled up a couple of studies regarding the use of Pentasa following ileocaecal resection and the results were pretty positive. He did acknowledge that it is no wonder drug and not overly effective but argued that in Matt's specific case if we can increase his chances of staying in remission by even 1% with a relatively inoffensive drug like Pentasa then he is all for it. Matt said he doesn't mind at all taking tablets so we will add Pentasa. 

B12 - He wants Matt supplemented. I asked about MMA and he said it is something he doesn't routinely test for but if need be he will. 

LDN - He is on the fence about this. He regards it as experimental but is not closed down about it. 

Diet - He doesn't think diet has a role in Crohn's at all and I politely disagreed. I asked about EEN and he then said, well yes, I agree that EEN has a role in the treatment of Crohn's. 

Supplements - He was pleased to see that Matt is taking Vit D, Zinc and Magnesium. I asked about probiotics and specifically about SIBO due to removal of the ileocaecal valve. He said whilst there are studies that support the use of VSL 3 for other conditions, such as some liver diseases, unfortunately there are few studies regarding the use of supplements, including probiotics, and their effect on Crohn's. He is however of the opinion that if they can be taken without issue then they will certainly do no harm and who knows what positive benefit they may have in increasing Matt's chances of staying in remission. 

He has recommended that we add to our supplements - Turmeric. 

Matt was happy with the consult and on parting the GI told him that whatever he does in life not to lose his Mother. How could I not like the GI now! :ylol: 

Happy Dusty. :dusty:


----------



## CarolinAlaska

DustyKat said:


> Well today was the appointment with the new GI. I am pleased to say all went well and he very approachable and friendly, the consultation lasted about 45 minutes. I would put the GI in his early thirties which I expected after googling info about him. :ybiggrin:
> 
> He had initial concerns regarding the fact that Matt has not been followed up for 2 years by a specialist and in view of the Matt's age of onset and severity of disease if biologics had even come into the equation. So it was at this point that we had an in depth discussion of the timeline of events from diagnosis till now.
> 
> He is very much of the opinion, for the same reasons as above, that we must do our utmost to maintain remission due to Matt being in a high risk group.
> 
> Now to treatment:
> 
> Imuran - He will stay at his current dose for now. He wants to consult with Matt again at the end of the university year, so late October, early November. He will then have metabolites done and if need be he will up his dose accordingly.
> 
> He wants to add Pentasa into the mix, 500mg twice a day and has written a script. I mustn't have had my poker face on because he asked if I didn't like Pentasa. So again at this point we had another long discussion about Pentasa and its value in ileal disease. He pulled up a couple of studies regarding the use of Pentasa following ileocaecal resection and the results were pretty positive. He did acknowledge that it is no wonder drug and not overly effective but argued that in Matt's specific case if we can increase his chances of staying in remission by even 1% with a relatively inoffensive drug like Pentasa then he is all for it. Matt said he doesn't mind at all taking tablets so we will add Pentasa.
> 
> B12 - He wants Matt supplemented. I asked about MMA and he said it is something he doesn't routinely test for but if need be he will.
> 
> LDN - He is on the fence about this. He regards it as experimental but is not closed down about it.
> 
> Diet - He doesn't think diet has a role in Crohn's at all and I politely disagreed. I asked about EEN and he then said, well yes, I agree that EEN has a role in the treatment of Crohn's.
> 
> Supplements - He was pleased to see that Matt is taking Vit D, Zinc and Magnesium. I asked about probiotics and specifically about SIBO due to removal of the ileocaecal valve. He said whilst there are studies that support the use of VSL 3 for other conditions, such as some liver diseases, unfortunately there are few studies regarding the use of supplements, including probiotics, and their effect on Crohn's. He is however of the opinion that if they can be taken without issue then they will certainly do no harm and who knows what positive benefit they may have in increasing Matt's chances of staying in remission.
> 
> He has recommended that we add to our supplements - Turmeric.
> 
> Matt was happy with the consult and on parting the GI told him that whatever he does in life not to lose his Mother. How could I not like the GI now! :ylol:
> 
> Happy Dusty. :dusty:


What a great first visit!  So glad to hear it went well.  Interesting that he doesn't believe diet has any part in it and then suggests turmeric... that is a spice, right?  Very interesting.  How much did he suggest?

Congratulations on finding a good GI for your son!  I think I like him too!:lol2:


----------



## littlemissh

Sounds like a good GI.
I had heard that turmeric had natural anti-inflammatory action but have no idea about dosing.

Be careful Dusty, he'll be radio-tagging you next.


----------



## upsetmom

Glad the appointment went well...:dusty::dusty::dusty:


----------



## DustyKat

@Carol - Yes, tumeric is a spice. He didn't suggest how much and I didn't ask. I didn't ask because I have read about it on the forum and researched in the past. 

I have a website saved and had looked at this formulation some time ago: 

700mg per capsule (498mg Curcuminoids) ~
1 Capsule per serving ~
100 servings ~
525mg Curcuma longa Extract (95% Curcuminoids), 175mg Piper nigrum ~ 
(3:1 Curcumin/Pepper Ratio) ~
No other ingredients of any kind ~
Freshly encapsulated when you order ~

...black pepper is mean't to enhance the bioavailability of the turmeric which is why I was considering this one. I will tag David and Dan (D Bergy), I know both use higher doses than 700mg but with Matt I would likely start with one capsule daily - thoughts? 

Dusty.


----------



## AZMOM

Fab appt Dusty!!!!!!!!!

Sounds like he is on the ball. 

J.


----------



## Crohn's Mom

So glad to hear all went well! 
It's really good that Matt doesn't mind the extra pills too - Gab can't stand them! LOL 
Lots O Love
Xoxoxoxox


----------



## Dexky

Wow!  So the new GI didn't leave feeling like *he'd* had a colonoscopy!!??  I'd say he must be a winner!  Glad you liked him and glad he isn't content to just let things alone until there's a crisis!


----------



## DustyKat

Now I didn't say he didn't have a pained expression on his face! :lol:


----------



## Dexky

I'm surprised he didn't offer you a position…well on second thought, he probably wouldn't want you *that* close!


----------



## DustyKat

Oh yeah...I'm sure the doc would love me greeting him every morning...

Good morning doc! Now drop ya daks, turn around, bend over and let's have a look where the sun don't shine! :ylol:


----------



## crohnsinct

DustyKat said:


> the GI told him that whatever he does in life not to lose his Mother. How could I not like the GI now! :ylol:
> 
> Happy Dusty. :dusty:


Because he wants you where he could see you!  His biggest fear is Dusty on the loose in Oz!


----------



## Livilou

Wow Dusty, this guy sounds like a keeper! Liv takes curcumin/tumeric too. We use the Jarrow brand, 500mg capsules. I had her on 2 caps/day, afternoon and bedtime along with her LDN. Now that she has started the Stelara, I cut her back to 1/day as per her MD...too many variables when trying to assess the efficacy of the Stelara. Liv weighs just over 100 lbs and tolerated 1000mg of curcumin just fine, no issues at all. Good luck with your new plan!                                                             Kim


----------



## 723crossroads

Tumeric is also a good at preventing alzhiemers disease. The incidence of it in countries that eat heavily laden dishes with curry and tumeric have virtually no alzhiemers. Now, that in itself is a good reason to take some everyday!
So very happy Matt is doing so well! I pray it stays this way forever!:thumright::congratualtions:


----------



## Farmwife

Grace takes it too.  She takes it three times a day.


----------



## CarolinAlaska

723crossroads said:


> Tumeric is also a good at preventing alzhiemers disease. The incidence of it in countries that eat heavily laden dishes with curry and tumeric have virtually no alzhiemers. Now, that in itself is a good reason to take some everyday!
> So very happy Matt is doing so well! I pray it stays this way forever!:thumright::congratualtions:


That may be, but those countries also have little of the processed foods and artificial ingredients that our foods have as well, no?  Lots of variables.  Yes, tumeric may be the trick, but then again our culture and food is much different.


----------



## 723crossroads

CarolinAlaska said:


> That may be, but those countries also have little of the processed foods and artificial ingredients that our foods have as well, no?  Lots of variables.  Yes, tumeric may be the trick, but then again our culture and food is much different.


So true!!!


----------



## kimmidwife

DustyKat said:


> Oh yeah...I'm sure the doc would love me greeting him every morning...
> 
> Good morning doc! Now drop ya daks, turn around, bend over and let's have a look where the sun don't shine! :ylol:


You Aussies crack me up!
Dusty, so glad to hear about things going well with this new GI. Interesting about the Tumeric. I am going to check it out. I know it has been mentioned previously. Interesting that it may prevent Alzheimer's. I wonder if it helps with Fibromyalgia forgetfulness? I may have to try it out.
I am glad to hear he is somewhat open to LDN.


----------



## Amy2

Turmeric is so bitter!


----------



## kimmidwife

Amy,
Is is bitter in pill form?


----------



## David

"Diet plays no part except for when you change your diet and go on EEN and oh, here take this spice that you add to your food and I'm glad you take those vitamins and minerals which you normally get from certain foods and not from others."



ANYWAY... I'm glad you like the new GI!  That's great   As for Turmeric, I was simply taking 500mg a day (now just use it in cooking) but there are much more knowledgeable people on it and Curcumin here.  Dan, then I think Beach and Kiny have both dabbled with it as well.


----------



## DustyKat

Ugh! I know David but hey, he is moldable and I only have to pull out the pieces of advice that I like! :lol: 

Really? I thought you were on 1500mg at one point. I don't know you better than you do, do I? :ybiggrin: 

Dusty. xxx


----------



## David

DustyKat said:


> Really? I thought you were on 1500mg at one point. I don't know you better than you do, do I? :ybiggrin:


Heheh, I may have been at my height, I don't remember now, though I think you're correct.  I'd go through my thread but my pregnant wife is hungry which means my life is at stake if I don't get dinner out soon!


----------



## DustyKat

Yes! Don't mess with the hormones!


----------



## Dexky

David said:


> I'd go through my thread but my pregnant wife is hungry which means my life is at stake if I don't get dinner out soon!


I'm probably the last person to know but congrats!!  When is she due?


----------



## Niks

He does sound like a keeper!!  Glad it was a good appointment   xx


----------



## ChampsMom

Wow Dusty!!  How awesome!  Made my heart leap to hear it went so well!  I have been worrying recently (though  my Mum keeps telling me, "Don't borrow trouble!") what happens when Alex is no longer eligible to see the pediatric GI and moves on to an adult GI...  

Thanks for sharing!!

((Hugs!)))


----------



## David

Dexky said:


> I'm probably the last person to know but congrats!!  When is she due?


Thank you   December 3rd.


----------



## Sascot

Wow Dusty, sounds like a good GI - and so young - should be around for a long time!!  Glad the appointment went so well.
Congrats David!


----------



## Tesscorm

Sounds like a great apptmt!!  It's certainly a relief when you like the doctor and feel you (Matt) are in good hands!   And, _yay _that he's proactive/preventative rather than waiting to treat a problem!! :thumright:


----------



## awmom

Gosh Dusty, he sounds like a great doc!  I'm glad the appointment went so well and that he seems very proactive, interested, and approachable, which is extra good for Matt!


----------



## DustyKat

Thanks guys.  

Pentasa and Turmeric started. 

I have finally nailed Matt down to a time at which I could start and make arrangements for follow ups. I was spurred on by the fact that he made a grand statement the other day...

Matt: You know that bloke I saw? 
Me: What bloke? The GI? 
Matt: No. 
Me: Who? 
Matt: That other bloke. 
Me: Bloke as in doctor? 
Matt: Yeah.
Me: The surgeon? 
Matt: Yeah. 
Me: Well what about him? 
Matt: They rang me a while ago. 
Me: How long? 
Matt: (shrug) I don't know, a few weeks. 
Me: What did they want? 
Matt: To know when I wanted my op. 
Me: What did you say? 
Matt: That I didn't know!

Bloody hell! Talk about like trying to get blood out of a stone! :lol:

So university wraps up for the year on the 21st October and he has follow up with the GI on the 28th October and his hernia op has been set down for the 6th November. 

Dusty. :bigwave:


----------



## Crohn's Mom

A man of many words indeed 

xoxoxo


----------



## Tesscorm

:rof:  :rof:  Too funny!!!  And this is why we _become _control freaks! :yfaint:


----------



## David

Dusty, has Matt ever had his thiopurine metabolites tested?


----------



## Farmwife

Well good golly...... he's part farmer.:rof:


----------



## Dexky

And that is why an 18, 19, 20 yr old kid should not have control of his own healthcare.  I assume you are the one who arranged the pre-op and op dates.  Did you consult W?


----------



## DustyKat

@Dexky - Got it in one Einstein! :lol: 

Did I consult W? He can barely get his undies on the right way round so why the hell would I consult him?! :wink: 

@David - No he hasn't but he will be having them done when he next consults with the GI, that was one of the first things he talked about when we were discussing meds. The GI seems very proactive and wants to see Matt at least every six months. I think he would have preferred 3 monthly as he said that is the interval he normally has all his IBD patients at but he understands the distance we need to travel and Matt's university schedule. He also said he wants to start doing other tests and mentioned bone density. 

Dusty. xxx


----------



## David

Cool.  One thing to keep in mind is Pentasa can increase metabolite levels.  I doubt it'll matter much in Matt's case though.  I was just curious to see if the increase was going to be monitored as I'd be interested to see how much it went up.


----------



## DustyKat

Thanks for that David.  

Any mention on how much Pentasa could cause this or just Pentasa generally?


----------



## David

Mesalamine in general: http://www.ncbi.nlm.nih.gov/pubmed/16633046


----------



## DustyKat

I now have that stored in my memory.  

Thanks!


----------



## DustyKat

We are going private for Matt's surgery, we are in a health fund, and I have just received a quote for the surgeon's services only, so not the hospital or anaesthetist fee. 

Total Fee: $795.00
Estimated Rebate: $636.00
Out of Pocket Cost: $158.95

I don't think that sounds too bad. 

Dusty.


----------



## kimmidwife

That really does not sound to bad! Boys, they really don't like to give details do they?


----------



## Catherine

The anaesthetist usually has the biggest out of pocket amount.  

Is the hospital in your health fund network?  If its in network you usually only have to pay the health fund plan excess.


----------



## DustyKat

Yes it is a partnered hospital. I will check things out. Thanks.


----------



## Jane and Nick

What a horrible thing to happen, so sorry that you are all having to go through this again. Thank goodness you are so experienced and unfortunately were able to recognise the symptoms and deal with them in such a super mom fashion. Sending you positive thoughts and hugs.
Jane


----------



## DustyKat

Sorry Jane! Ugh, I shouldn't assume everyone knows what I am blethering on about! 

The surgery isn't Crohn's related, it is an inguinal hernia. So just a quick day surgery.  

But thank you for your kind words! 

Dusty. xxx


----------



## Mehita

Very interested to hear how surgery goes, Dusty. DS has one as well that was discovered during his resection in January. It's not been an issue yet, but... it's on our radar.


----------



## DustyKat

I will surely let you know Mehita.  

Matt had the right side done when was 12 months old (1994). At the time the surgeon said that thinking had changed and where they once did both sides they now only repaired the affected side as bilateral hernia's only affected about 10% of sufferers. Of course now I wish the thinking hadn't changed! :lol: 

As it was the op didn't seem to affect him at all. Mind you he was a baby at the time so it was a bit like...what you don't know doesn't hurt you. I use to say my partner, if that had been you you would have got 3 months in a wheelchair out of that op! :lol: 

So yes, it will be interesting to see the difference between the 12 month old and the twenty year old! Mind you he has an open resection so I would hope it doesn't worry him too much! 

Dusty. xxx


----------



## Dexky

No soccer in Nov. right?  I imagine he'll lie still and do some light summer reading...like German tech manuals or collegiate calculus textbooks...nothing too taxing!


----------



## DustyKat

:lol: Yep, soccer season over as is uni but no doubt algebraic topology will be big on the reading list!


----------



## DustyKat

Well hush my puppies and prune my magnolia's. :ybiggrin: 

I am very much a believer in complimentary medicine, well some of it, and although I have no issue with chiropractic practice it is just something I have always been a bit meh about it. Anyway, we had some training through the week regarding manual handling and prevention of back injury. One of the speakers that came was a chiropractor and it got me to thinking about Matt's hip/lower back pain that sometimes rears its ugly head. I do believe it is Crohn's related and that he likely has some sacroiliac joint issues. 

I know many people that swear by their chiropractor and this bloke seemed very knowledgeable and switched on. So since there is no additional medication involved in the practice I thought I would talk to Matt about it and give him the guys card. Matt seemed very interested as evidenced by his response...cool...but I think the icing on the cake was that the fellow is on the younger side of life and plays soccer in the premier league. :lol: 

Matt is not having issues at present but it seems he may pop in for a visit next time it plays up. We shall see and I will keep you posted. 

Dusty.


----------



## my little penguin

Sounds like a good idea.
Rheumo has us do similar for DS
Range of motion exercise
Strength exercises 
Lots of swimming

Hope it helps when he needs it.


----------



## kimmidwife

Interesting, I'll be interested to see how it goes.


----------



## Dexky

Just keep the chiro away from Matt's neck!  We had a guy from work nearly paralyzed by one.  He's now retired and walks with a cane!


----------



## DustyKat

Just received a copy of the GI's letter back to the GP: 

- Due to Sarah's Crohn's and striking similarity to Matt's he is raising the possibility of a genetic mutation such as NOD2/CARD15 (early onset CD) 

- He feels that Matt's intermittent hip pain is unrelated to his Crohn's. 

- Next consult he will do metabolites and most likely bone density. 

- He has also mentioned in detail his adding of the 5ASA and the debate that exists over its efficacy in CD but has also set out his reasons for doing so. 

- I have rated a few mentions but I shan't go into that! :lol: Nothing bad mind! 

	
	
		
		
	


	





Dusty. :Flower:


----------



## kimmidwife

That is so interesting. Will they do genetic testing on them?


----------



## DustyKat

I'm not sure Kim. I don't know if it is something he may suggest pursuing or whether he is just stating it as a curiosity. 

I shall be asking at the next consult. 

Dusty.


----------



## crohnsinct

Hey Dusty,  O does fabulously well with chiropractic for her lower back and hip pain.  She also had issues with her neck and upper back...stiff more than pain.  There is a lot in the sports world that says proper alignment can increase sports performance by as much as 10%.  I can say without hesitation it has certainly had that affect for O and her running/swimming.  But sooo much of swimming is body alignment so maybe that is why.  

I do agree with Dex though that you have to make triple sure you have a good one.  Our chiro was on the team of docs for the US Figure Skating Team and has gobs and gobs of credentials.  Also a pediatric specialist.


----------



## DustyKat

I see I missed Matt's results from May. So I will add to the results received today: 

FBC - All well within normal limits except lymphocytes: 
May - *6.5
July - *6.4

E/LFT's (Serum Chemistry) 
May - Normal
July - Normal

Iron Studies: 
May - Normal
July - Normal

B12 - In May following one B12 injection it moved up from the usual 237/238.
May - 613
July - 401

Red Cell Folate:  
May - *1892 (NRR 776 - 1784)
July - 1760

Vitamin D - We are dropping:
May - 92
July - 82

ESR:
May - Normal
July - Normal

CRP: 
May - *9.5
July - *9.3

Magnesium: 
May - 0.85
July - 0.86

Zinc: 
May - 14
July - 14

In summary there are three issues: 
- A B12 that rose to what I consider an acceptable level after one injection but is now dropping again. To me this is a clear indication that he needs ongoing supplementation. 
- A dropping Vit D value. We reached a peak of 106 in Summer but has continued to drop off since. Is this a seasonal reflection? I am thinking that now he is taking meds twice daily that I will add another 2,000iu daily?
- CRP a slow climb to 9.6 in May and now at 9.3. He has changed labs but the reference ranges don't vary greatly so I do accept that it is reflective of the numbers stated. 

David - His Zinc and Magnesium have risen but now plateaued. Whilst Matt will happily take meds I don't want to push my luck too much. What are your thoughts about these three issues, how they interact and what you would do re supplementation. 

Dusty. :Flower:


----------



## CarolinAlaska

The vitamin D looks good from my standpoint.  I'm happy with anything over 50 in all my general patients (we live in Alaska and many of them are on 5000 units a day).  I'm interested to see what David's take on this will be.


----------



## Catherine

We use a different scale for vitamin d.  I agreed dusty some of drop will be due to the weather.


----------



## Johnnysmom

CarolinAlaska,  What is your reference range for Vit D?  Johnnys result is a 44.8 but standard range is listed as 20-60 ng/ml.


----------



## CarolinAlaska

Our lab says "optimum levels in the normal population are 25-80 ng/mL" (on test done at Mayo Clinic in Rochester)


----------



## CrohnsKidMom

This is an interesting discussion, and I have a question for all of you about Vit D.  We had a routine GI appt today and I mentioned to the nurse that when I give my son his Vit D each morning, that he gets more than one drop (1000 iu's per drop).  We're in a northern climate so I thought I was actually doing a good thing, but she said I was just making expensive pee, as his body would just get rid of the extra.  But Dusty, I see here that your plan is to increase by 2000 iu's, and CarolinAlaska, you mention others that take up to 5000 iu's.  I'm confused.  Can you help me understand?


----------



## CarolinAlaska

It is the general consensus among health care providers that if someone gets too many vitamins, they will just pass the extra in their urine.  If your son has a high vitamin D, that may be true, but I doubt it for a low dose like that.  I've seen people take as high as 10,000 units a day or 50,000 units a week and their body captures and stores it, so I think your nurse may be misinformed.


----------



## CrohnsKidMom

Thanks, CarolinAlaska.  The GI said my son's Vit D number looks good, but I don't know what the number actually is.  I'm gonna continue to let those extra drops of D fall into my son's morning OJ.  Thanks for enlightening me!

Dusty, I hope you get your Matt's levels back where you want them.


----------



## David

DustyKat said:


> David - His Zinc and Magnesium have risen but now plateaued. Whilst Matt will happily take meds I don't want to push my luck too much. What are your thoughts about these three issues, how they interact and what you would do re supplementation.


Hey Dusty,

I forget, were you able to get that fecal calprotectin done?

1.  The zinc doesn't worry me too much as he's doing pretty good there and should continue with his current regimen.

2.  He has never gotten to where I'd like to see him with the magnesium.  I'd add another dose at the opposite end of the day of when he is taking it now.  Magnesium rich foods would also be great.  I suspect as the magnesium level increases his CRP will continue to drop as well.  And IF I'm correct about my nickel/magnesium theory, it may help him as much as anything.

3.  Vitamin D.  For those out there wondering about his apparent high levels, Dusty and Matt are in Australia where they use nmol/L rather than ng/ml.  To convert nmol/L to ng/ml you divide by 2.496.  So Matt's 82 = 32 ng/ml which is way too low for a Crohnie.  Dusty, I'd add that extra 2000iu.

4.  The decreased vitamin B12 makes me agree with you that he needs regular shots at an interval to be optimized over time.  The question is, is that inability to maintain B12 due to his resection alone or is there another variable such as SIBO or inflammation coming into play.

*hugs* to you Dusty.  And if he hasn't received that fecal calprotectin, get it.


----------



## DustyKat

Thanks guys.  

*I forget, were you able to get that fecal calprotectin done?*

Haven't had it done David. I will be asking at the next GI appointment.  

*1. The zinc doesn't worry me too much as he's doing pretty good there and should continue with his current regimen.*

Thanks.  

*2. He has never gotten to where I'd like to see him with the magnesium. I'd add another dose at the opposite end of the day of when he is taking it now. Magnesium rich foods would also be great. I suspect as the magnesium level increases his CRP will continue to drop as well. And IF I'm correct about my nickel/magnesium theory, it may help him as much as anything.*

Okay, I shall add a dose with his morning meds. 

Foods: I am still struggling to get Matt of a diet that closely resembles that of low residue. It has always struck me as more than coincidental that he preferred this type of diet for such a long time before his diagnosis that I often think that he subconsciously knew something that we didn't. I will continue to prompt and encourage and hope for the best! 

*3. Vitamin D. For those out there wondering about his apparent high levels, Dusty and Matt are in Australia where they use nmol/L rather than ng/ml. To convert nmol/L to ng/ml you divide by 2.496. So Matt's 82 = 32 ng/ml which is way too low for a Crohnie. Dusty, I'd add that extra 2000iu.*

Thanks for validation, priceless. :ybiggrin: 

*4. The decreased vitamin B12 makes me agree with you that he needs regular shots at an interval to be optimized over time. The question is, is that inability to maintain B12 due to his resection alone OR is there another variable such as SIBO or inflammation coming into play.*

I like the bit before the *OR* and as much as I would like to I shan't ignore the potential issues after it! :ack:

_______________________________________________________

So topics for the next appointment, this is my diary after all! :lol: 

Tests: 
Metabolites
FC
Bone Density

Supplements:
Confirm where we are at with B12

Physical: 
Discuss weight

Any other thoughts or opinions? 

Thanks! 
Dusty. :Flower:


----------



## Dexky

You know what I think :dusty:....I think it's a good thing you and David are a lot smarter than me!!!


----------



## DustyKat

Ya reckon?! :ycool:


----------



## David

DustyKat said:


> Tests:
> Metabolites
> FC
> Bone Density


No other suggestions here.  I think those tests will give you a good idea of where he's at.


----------



## DustyKat

So I refilled the dosette today...yes me :bigwave:, cause in some areas the umbilical cord is still hanging on by a thread! Well maybe more than one thread. :ybiggrin: 

So I have added an extra 2,000iu of Vit D and another Magnesium cap to his morning meds. 

My next challenge was telling him and wasn't sure how I would, after all he is in the NRR for both Vit D and Magnesium and as far as he is concerned normal is normal whether you are one point above the lowest level or one point below the highest level. (sigh) 

As it was fate intervened! :lol: We were just finishing off dinner and I was in the kitchen when my phone rang, it was a call out. Matt had asked if I could pass him his tablets. Well I was a tad distracted and took his morning meds out instead of his dinner ones. He asked where the Imuran was and I said...oops, they are your morning meds. Of course he said...they don't look like my morning meds. At which point I told him the changes I had made, why I had made them and then ran out the door!  

Dusty. :shifty:


----------



## Dexky

Eh what's a couple more pills to a chronie anyway!!??


----------



## DustyKat

To a teenage/young adult male it is akin to a grain of sand under their foreskin. :ybiggrin: Assuming they have one of course, in which case if they don't you will have to find another analogy. 

Dusty. :tongue:


----------



## Dexky

Nice!!  I could have done just fine w/o that thought!!


----------



## DustyKat

Ahahahahahahaha


----------



## DustyKat

The two monthly bloods are in again and all is going well bar one glitch.  

FBC - All normal except the stock standard lymphocytes - 0.68 (1-4)

Biochemistry - All normal except cholesterol which is always a snig below normal. 

Glucose - Normal

Iron Studies - Normal

CRP - *Normal*, this has been a little elevated in the last two blood draws.

ESR - Normal

Vit D - Significantly raised from last draw at which point I increased from 2,000iu daily to 4,000iu daily. Has gone from 82 to 113nmol/l.  

Magnesium - Normal 0.80. David, I increased from 1 capsule daily to 1 capsule twice daily. Previous draw the level 0.86. 

B12 and Folate - B12 is continuing to drop off since last injection. Previous reading 401 now 291. Folate is climbing and is now above normal. Previous reading 1760 now 1807. In my mind it must be a B12 deficiency. 

Zinc - Pending
_____________________________________________________________

So CRP is back to normal and ESR even lower with the NRR. Changes since last blood draw. Vit D dose doubled, Magnesium dose doubled, Turmeric added. 

GI appointment is 29th October and these are the issues I am going to discuss:

-B12 and Folate levels, including the possible effects of the changes stated above. 

-Thiopurine metabolite testing. (Already flagged by GI)

-Faecal Calprotectin testing. 

-Bone Density testing. (Already flagged by GI) 

-Genetic testing: Due to likely hereditary factors with the kids is it worth testing and if so what benefits may it provide.

Any other questions anyone can think of? 

Dusty. :Flower:


----------



## Johnnysmom

Great news Dusty!!

I would love to hear what your GI says about Genetic testing and whether it is worth doing.


----------



## David

Nice.  I'm glad to see the CRP now normal.  I bet that is, in part, due to the increased dosage of magnesium.  If it was me, I'd maintain the magnesium dose and see what happens next draw with the level.

Keep in mind Turmeric can chelate iron so keep an eye there but I think its benefits are worth it.

Sounds like he may need more frequent B12 injections though and my thoughts in my post above still come into play.

*hugs*


----------



## Tesscorm

Great news!  Glad his CRP has dropped to normal!  I'm so glad to hear he's continuing to do well. 

Does Matt have FC tested on a regular basis?  If not, and just out of curiosity, with all good results, why will you be testing? Just as a precaution 'now'?  Or will you be requesting FC on a regular basis?


----------



## DustyKat

Thanks guys.  

@Johnnysmom - I will be sure and give a rundown of how the appointment goes. 

@David - Will do with the Magnesium. I will continue to monitor the iron. I will include what you have said in the B12 and Folate discussion. Thanks! 

@Tesscorm - Matt has never had a FC done. I would like it done for 2 reasons - Firstly, Matt's bloods have always been reflective of his disease activity but I would like to have a inflammatory marker that is specific to the bowel to see if that marries up with the serum markers. It would then give me a better idea for future reference. If it is within a normal range then I would not pursue regular testing but rather use it on a needs be basis. Secondly, David has suggested a look FC to see if that is perhaps tying in with his inability to absorb and maintain a sufficient B12 level. Matt's B12 has always been 'normal' but at the low end and what I personally believe is too low for young adult male. He was 580 immediately post op and then gradually levelled out at 237/238. I would like to see him consistently back up over 500. If FC is normal then judging on the last 4 months blood tests a 3 monthly injection should do that job nicely. 
Matt's resection was conservative in the scheme of things and I do think that diet may be a contributing B12 deficiency factor on top of the loss of terminal ileum. 

Dusty. xxx


----------



## kimmidwife

Dusty,
What brand tumeric is he taking? I did a lot of research on tumeric for my own illness and I found out that unless it is combined with an ingredient called Bioperene (actually found in black pepper) then it is worthless. Without the Bioperene it is not absorbed into the body at all. I don't remember if we have talked about this in the past or not.


----------



## DustyKat

Thanks for watching my back Kim.  The preparation that Matt takes does include black pepper. 

Zinc level returned today - **26!* (NRR 10-18) 
Matt was Zinc deficient, 9.8 or thereabouts, in November last year and Zinc supplementation was commenced with the preparation and dose being Zinc Citrate 30mg daily. His level rose to 14 and it has stayed consistently there until this draw. 

So 3 scenarios that I can think of: 

1. Could I have actually made a blunder and doubled up on the Zinc instead of the Magnesium? If so it would not have been for the whole 2 months since the last blood draw. The capsules are identical except for the size and Matt also did not notice a discrepancy with his meds. I have checked the purchase receipts and the remaining supply of both supplements and as far as I can ascertain they match with no error being made, well certainly not one that would have lasted longer than a week...

2. That being the case is the result a one off due to an artefactual error? Since serum Zinc has very specific storage methods this may well be the issue, particularly when incorrect storage results in elevated levels. I have not spoken with GP since receiving the result late this afternoon but will see him tomorrow so unsure if he will want it repeated or if he will just say to press on as there are no other clinical indications of a problem. Now, if human error is not to blame...

3. David, anyone, do you know if increasing Magnesium and/or adding Turmeric enhances the bioavailability of Zinc? 

Thanks! 
Dusty. xxx


----------



## Dexky

Do the pills come in a brown paper bag??  Since Mommy, or is it Mummy, fills Matt's pill boxes, surely *you*, of all people, wouldn't have made that mistake!!  I think you can safely assume No. 1 is out!

What are the storage guidelines for Zinc??


----------



## DustyKat

So you are actually admitting to all and sundry that I am never wrong Dex? About fecking time! :lol: 

Processing Zinc samples:



> Once the blood is obtained, a cold chain (2 to 10 °C) must be maintained.  Samples should be stored and/or transported in a refrigerator or a portable cool box (electric or with ice packs). It is recommended to keep a temperature log for temperature documentation throughout the process.
> 
> When the storage temperature is 2 to 10 °C, the sample is stable for up to 24 hours.
> If the cold chain cannot be guaranteed until the sample is processed, it is important to separate the serum or plasma from the red blood cells within 20-30 minutes.
> These precautions are important to prevent zinc being transferred from blood cells to serum or plasma, which leads to an artificial increase in the zinc content.
> After centrifugation, the plasma or serum should be transferred to a zinc-free polypropylene tube and stored in the refrigerator or freezer until analyses.


Dusty. anda:


----------



## Dexky

Duh!  Serum zinc!  I thought you meant storage of the actual supplement.


----------



## David

DustyKat said:


> 3. David, anyone, do you know if increasing Magnesium and/or adding Turmeric enhances the bioavailability of Zinc?


This is one of the most difficult aspects of supplementation.  Science really has no clue still about so much.  The answer to your question is, "maybe".  Vitamin and mineral interaction are so incredibly complex that science still has much to learn.  And when they do learn something, another study comes along four years later that contradicts that study for whatever reason.  Turmeric can chelate iron and iron supplementation may decrease iron.  So could iron chelation increase zinc?  Maybe.  From Linus Pauling: , "Supplemental (38-65 mg/day of elemental iron) but not dietary levels of iron may decrease zinc absorption (9). This interaction is of concern in the management of iron supplementation during pregnancy and lactation and has led some experts to recommend zinc supplementation for pregnant and lactating women taking more than 60 mg/day of elemental iron".

Attached is what is called the, "Mineral Wheel".  It shows KNOWN interactions.  Is there a direct, known interaction between Mg and Zn?  No.  But that doesn't mean they can't interact with other minerals which then causes flux.  Maybe Mg affected Ca which affected Zn.  Maybe Zn affected P which affected Mg.  :ybatty:  :ybatty: :ybatty:  Will a new line be drawn on this wheel anytime soon by science?  Very likely.  







And then of course there's the fact that tests can be off from time to time as well. :ybatty:  Finding that long term trendline and throwing out the outliers is important.  Just one of the many reasons why someone with Crohn's disease, a disease characterized by malabsorption and deficiencies should have regular testing to monitor all of these levels.  You're doing good Dusty.

I realize that really doesn't much at all.  I'm sorry


----------



## DustyKat

Thanks David. :hug: 

And please, no apologies! You have provided me with more information than Mr. Google has! :ybiggrin: 

Dusty. anda:


----------



## DustyKat

Firstly I must apologise for not being around much. Have had so much going on around here...my dad is not well and Sarah is moving back home so I have had to rearrange the house! Things are starting to settle now though and I am now trying to catch up...have you noticed that? :lol: 

So in amongst all of the above we had Matt's routine GI appointment, which always involves travel and a few days away. The appointment went well and we discussed quite a few things, even Matt was very animated and involved! ...

Nod2/Card15 - The doc doesn't think it is worth testing at this point as we already know the disease profile and targeted treatments are not available. If there were other unaffected siblings then testing would be worthwhile. Also he suggested it may be warranted when it comes time to start a family. 

FC - He personally does not see the point when asymptomatic even as a baseline reading. I don't disagree as Matt's serum markers have always been very sensitive to changes. I did discuss Sarah though and said in her case I would think that FC may be the way to go as her bloods are so unreliable, he agreed. In any case I left with a request for Matt to have it done. :shifty-t:

B12 - Spoke at length about this and we agreed to disagree about what an acceptable lower level is. He is happy for the GP to continue supplementing if that is what I want. Now I just sound like a dominatrix! 

remission - He discussed this at length with Matt. He explained to him what deep remission is and how they go about determining that state...clinical, endosopic and histopathological. If in doubt he prefers to go this route than rely on clinical factors alone. 

Immunosuppression - He spoke with Matt about the risks of the various drugs. I think they both enjoyed the statistical and logarithmic aspects of the data. :lol:

Matt asked quite a few questions including what he should be looking out for and described symptoms he sometimes has and if he should be concerned about them. The GI wasn't and Matt was happy with that as was I! 

The GI is happy with where he is at and wants to see in 6 months, all being well. He asked if I had met the IBD nurse, I said no (the practice didn't have one before), he said he would introduce us but felt that she would likely be no use to me. :lol: I did meet with her though and she was very nice and I now have her contact details.  

Matt has his hernia surgery on Wednesday 6th Nov so more fun times ahead! :eek2: I have no doubt all will be well.  

Dusty. xxx


----------



## DustyKat

Ugh! Left out that he will also have:

Thiopurine Metabolites done along with FBC, UEC, LFT's, CMP (Calcium, Magnesium, Phosphate), CRP, TFT's, Coags, Fe Studies. 

He has held off on the bone density at this point as it isn't a necessity and in view of Matt's history he would rather not expose him to further radiation unless required. 

Dusty.


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## upsetmom

Thanks for the update Dusty.

Good luck with Matt's surgery..:hug:


----------



## Tesscorm

Glad all is going so well with Matt! :applause:  and I bet you're so looking forward to hug Sarah back home with you for a while!

Sorry to hear your dad is unwell.  it is truly another worry for all of us at this age!  Hope it's something quickly resolved. 

And good luck with Matts surgery!  :hug:


----------



## DustyKat

Matt’s surgery went well.  

The anaesthetist was a rather austere woman but obviously good at what she does. She was speaking with Matt about post op pain and stated that this doctor’s patients seem to have little or no post op pain and she felt the reason for that was he was so good at working with tissue. Well so far that has proven right, he has the tidiest incision and up to now, fast approaching 24 hours post op, he has had no pain at the surgery site. :thumleft:

He was back home about three hours after arriving back in his room at the hospital and has been walking and moving freely since. The thing that has bothered him the most is the sore throat and a tad of nausea last night. If it stays at that…well it doesn’t get better than that!  

Onwards and upwards! 

Dusty. xxx


----------



## Sascot

Glad the surgery went well!  Hope the recovery is quick and continues to be pain free


----------



## Niks

Fab news Dusty.    xx


----------



## awmom

Glad all went well and continues good with Matt!


----------



## Jmrogers4

Glad surgery went well and he is home and feeling no pain.  May it continue.


----------



## momoftwinboys

Glad to hear Matt is doing so well!


----------



## Cross-stitch gal

Glad to hear about Matt!  Hopefully things will continue going well for him! :hug:


----------



## Tesscorm

Yayy!!!  Glad it's done and went well!!  And hoping it continues to go well!! :thumright:


----------



## upsetmom

Glad his surgery went well.


----------



## Mehita

Great news!


----------



## kimmidwife

So glad the surgery went well! Hope your Dad is improving and that Sarah's move goes smoothly!


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## Grumbletum

I thought things were a bit quiet on the Dusty front! I hope things will settle for you now and you get a bit of a breather. Big hugs x


----------



## DustyKat

Matt had his bloods done on the 4th November and all were normal except his CRP, it has crept up again to 21 this time, and his lymphocytes which are always below normal but have dropped off slightly more from the previous draw. His FC was normal, can’t remember the exact number now but nothing out of the ordinary. 

Metabolites: 6MMP was fine but his 6TGN was elevated at 885. I recalled what you said about 5ASA’s and increased TGN David but it wouldn’t account for that degree of increase. 
As a result his Imuran has been reduced from 100mg to 75mg daily. They are to be repeated in 2 months along with all his other bloods. 

He seems very well within himself and is due to go away for almost all of January to a mathematics summer school at ANU in Canberra. To be honest, with all else that is going on just now I really am turning my back on my Crohn’s at present and just playing things by ear. I will wait until he returns from Canberra at the beginning of February and have the bloods done then. 

He has continued to have no issues post op, so much so that he was to be reviewed 4 weeks post op, which would have made it this past week, but things have gone so well that I haven't even given it a thought to make an appointment, neither has he mind! :lol: Hmmm, I am sounding more than a wee bit apathetic, must be the Crohn’s effect. :eek2: 

Pressing on.  

Dusty. xxx


----------



## Manzyb

Hey dusty!  I'm glad to hear that Matt is doing fairly well 

How is your dad doing?  I'm sorry I haven't been around a ton lately, but I think of you Matt and sarah often


----------



## Tesscorm

I'm glad he's doing so well after his surgery!   I would imagine the trauma from any surgery, even as he's recovering well, can unsettle things in your body.  Hopefully,  the reduction of imuran will resolve the TGN issue and all else will settle soon as well.


----------



## DustyKat

No apologies Amanda…:ghug:…you have more than enough on your plate! 

Dad isn’t doing so well.  He has really gone down in the past couple of months, both mentally and physically. I think he has reached a point where everyday is a bonus but nothing is imminent at this point, it could well go on for some time like this. For his sake I wish he would go in his sleep one night. Mum is struggling with his behaviours, thank god my brother is living with them but I even see him struggling with it at times.  I am heading down again soon to spend Christmas with them. 

Sarah is home again and also seems to be doing well. She has a UTI at present (?honeymooners cystitis :eek2: I ain’t sayin’ nuthin’ :lol and her usual cranberry and copious amounts of water wasn’t hitting it on the head. Typical that the one time you need the doc he wasn’t available but as it was he did a script and path form for me and left it at the desk, seems I owe him one. :lol: As a result she is now getting on top of it. 

Dusty. :heart:


----------



## DustyKat

Sorry Tess, I had the page open for a while before I submitted and didn’t see you had responded. Thanks hun.


----------



## Tesscorm

I'm so sorry your dad (and family) are still struggling.  These situations are certainly heartbreaking and so tough on everyone.  I hope all goes well over Christmas!!


----------



## CarolinAlaska

Hi Dusty.  Glad to hear Matt's bloods were good  I hope all continues to fly well as he does his math course.


----------



## kimmidwife

Hi Dusty,
Sorry to hear about your Dad. Hopefully things will straighten out with Matt quickly!


----------



## Manzyb

I'm sorry to hear your dad is still not doing well  will keep all of you in my thoughts and sending Sadie bear hugs as always!


Sent from my iPhone using Tapatalk


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## Sascot

Sorry to hear about your dad. Hope Sarah's UTI clears up soon.


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## ellie

Also sorry about your Dad - it's where we parents of young adults are I suspect! (I have a 93 year old very vague Mum!!)
As for the "honeymoon" UTI, cranberry caps along with the antibiotics, and add a daily dose of probiotics!!


 HD


----------



## DustyKat

Thanks ellie. :ghug: 

Sarah: I received the MSU result on Monday and it wasn’t indicative of a UTI so she must have already been getting on top of things. She is back to normal now. Happy child, happy Mum! :lol: 

Dusty.


----------



## DustyKat

Matt had his bloods drawn about 10 days ago and all continues to go well.  

He had the full gauntlet done…

FBC, LFT’s, UEC’s, CRP, ESR, Iron Stores, Folate, B12, Vit D, Magnesium, Zinc and Thiopurine Metabolites. 

Just about everything was normal, including CRP this time, except…

His lymphocyte count which always sits at about the 0.6/0.7 level, although last draw it was 0.5 so it was good to see it lift again. 

His Zinc is still elevated at 24.6 so I am withholding for 2 weeks and am tossing up whether to reintroduce on alternating days or 3 times a week. David? 

Being Summer here he has been outdoors a fair bit so it was good to see his Vit D at the highest levels yet…120. Twilight soccer (It is still sunny! :lol started this week so hopefully that will keep him outdoors a fair bit until the soccer season proper starts at the end of April. 

Magnesium is holding steady at 90 with taking one capsule twice daily. 

B12 is in the normal range but has continued to drop off again. I don’t think Matt, the GP or the GI are pushing for higher numbers so a bit like banging my head against a brick wall there but I refuse to stop nagging about it to all three.  

Metabolites should be back about Thursday so it will be interesting to see what changes there are to the 6TGN numbers, if any, by dropping the Imuran back to 75mg daily. 

He enjoyed his month in Canberra at the mathematics summer school and will start his Honours year at uni this coming week, he has picked up further work this semester with marking assignments and tutoring. All in all he seems to be in a good place both mentally and physically. :dance:

Onwards and Upwards! 
Dusty. xxx


----------



## David

Dusty, what is the range for zinc there?

Great update overall, yay!


----------



## DustyKat

Zinc -  (NNR) 10-18 umol/l


----------



## David

I'd probably cut down on his zinc intake then, yes.  As long as the doctor is ok with that of course.

Let's see if we can maybe be scientific-ish about this though.  What was his level when he began supplementing and how much does he supplement per day?


----------



## DustyKat

IIRC his initial reading was 9. 

Started supplementing with 30mg daily, as recommended by the GP, and I have continued with that ever since. It brought his levels up to 14 and they pretty much stayed static at that until after our initial consult with the new GI. 

Now the things that changed since then and that coincide with his sharp rise in Zinc are:

1. Pentasa was added, 1grm twice daily.

2. Turmeric was added, once daily.

3. Magnesium was increased to twice daily.


----------



## David

How many months did they stay static-ish prior to the sharp rise?


----------



## DustyKat

Commenced Zinc around the beginning of December 2012 starting from a level of 9.

28/01/13 - 12.7

25/03/13 - 14.2

29/05/13 - 14

24/07/13 - 14

24/09/13 - 26*

We spoke about it here:
http://www.crohnsforum.com/showpost.php?p=705909&postcount=906

I did withhold his Zinc for 2 weeks at this time but recommenced at the same dose. 

November bloods were ordered by the GI and I didn’t realise at the time that Zinc wasn’t ordered, else I would have added it. 

06/02/14 - 24.6*

The other thing I changed at the same time as the other changes was increasing his Vit D from 2000iu to 4000iu daily.


----------



## Catherine

Can I add a guess here:

I believe the thiopurine metabolities will have dropped as the lymphocyte count has risen.

Any chance you got Medicare number for this test?


----------



## David

Zinc is a known vitamin D co-factor but it may very well work both ways somehow: http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/

Anyway, are you able to get the same zinc supplement but in a lower dose?


----------



## DustyKat

Why the caution on Zinc re: Immunosuppression? Do they think it may cancel out the effect? 
Good article David.  

I don’t think so but will have a look. 

@Catherine. I have asked twice but they never get back to me.  I will keep asking though.


----------



## DustyKat

Very little available in Oz in lower doses of Zinc. 

Is say dropping to 15mg better taken daily or is there no difference in taking 30mg second daily?? 

There is only one lower dose of Zinc Citrate available that I can find. Nothing that is Zinc Citrate only and the one I can find has Vit C added. 
Note: I have only had Matt’s Vit C done once and he was toward the lower end of normal...(NRR 10-115) 35 umol/l.


----------



## durwardian

Has anything changed in the diet?


----------



## DustyKat

No, nothing changed on that front.


----------



## DustyKat

Thiopurine Metabolites back.

Since reducing the Imuran to 75mg daily his results have dropped to the following:

6TGN - 527 (from 885)
6MMP - 548 (from 1130) 

GI has been in touch and wants him to stay at 75mg. I am still pondering about this given that ideal levels of TGN are below 450 but have asked that he write to the GP about the change in dose three months ago so I will see what he says in the letter. 

No consultation with anyone but after a two week withholding period I have recommenced the zinc. I have decided to drop it back to three times a week until bloods are next done in a couple of months. 

All continuing to go well on the Crohn’s front and life in general for Matt.  

Dusty. :Flower:


----------



## Sascot

Glad things are going okay. Our GI also seems happy with 6TG levels being 'a bit high'. I think Andrew has similar levels to Matt, and they are happy for him to stay on his current dose of 50mg. I suppose so long as the kids are feeling well in themselves it must be alright.


----------



## DustyKat

Thanks Sascot. Good to know what levels others are at and docs are happy with.


----------



## my little penguin

Our Gi was ok with a little high for a bit provided ast /alt were ok .
Once those numbers went high . The doc increased monitoring until it became apparent that something else ( namely allopurinol ) needed to be added to protect the liver .

Glad things have normalized .


----------



## DustyKat

Thanks mlp.


----------



## DustyKat

Matt had his routine bloods done last week…

*FBC* - All well within normal limits except Lymphocytes 0.7* (1-4), back to his regular low level. Hb 16.4 (13-18) A reference for you Tess. 
*LFT’s & UEC's* - All well within normal limits. 
*ESR *- 11 (<30) 
*CRP *- 6.6* (<6) He does have a cold. 
*B12* - 276 (180-740) Hmph.
*RCF* - 1087 (>630)
*Magnesium* - 0.83 (0.70-1.10) Has dropped off from the usual .90, not sure why. 
*Zinc *- 17.3 (10-18) Dropped back to three times weekly after last two draws showing elevated levels. 
*Vit D* - Always takes longer to get the results and have just realised I haven’t chased them up. :redface: 

*Iron Studies:*
Iron - 7* (10-30)
T’ferrin - 27 (*27*-46) 
T. Sat - 13 (*13*-45) 
Ferritin - 68 (20-300)
These have nearly always been in normal limits but never at brilliant levels so these results do not surprise me. 

He has his next GI visit the 5th June so I know what we will be talking about. :wink:

Other than that all is going well. Uni is very busy for him between course work and working so I won’t be sorry to see the mid year break come, plus soccer season has started. 

Sarah is continuing to do well, no signs that everything is anything but good. She is doing her first teaching prac and really enjoying it.  She has been saving her pennies hard and is in the process of buying a new car (oh joy…not! :lol and for her mid year break she is going to the US for 4 weeks and staying with friends that she met at UNSW. Not sure where or what she is doing but I think Colorado was mentioned. Travel insurance has been organised, phew, otherwise I told her at the first sign of anything wrong medically you get on a plane and get home! :eek2: :lol: 

Dusty. :Flower:


----------



## Catherine

Iron levels, the one out range is "iron" which is one that is considered by many as being unreliable.  For interest what time of day was the blood draw done.  "Iron" is the most reliable when blood in drawn at 8 am.


----------



## DustyKat

Thanks Catherine.  

Matt + Teenager + His Own World = Afternoon blood draws. The one consistent is he consistently has them early afternoon so at least that might be a reliable track! :lol: 

I know what you are saying about the iron and his other results including MCV are not indicative of Iron Deficiency Anaemia BUT, there is always a BUT! since I clearly have so little to focus on. :lol: I am looking at his Iron Studies overall and seeing him skating close to line so much that I think to myself do I take a proactive but conservative approach and catch him before a ?likely fall or wait and watch, and that is what I will throw into the GI’s lap.  

(((SIGH))) Maybe I have to get over my dislike of things not being at least mid range and above….damn you B12, Vit D, Zinc and Magnesium! You are destroying my outlook on things! :lol:

Dusty. ika:


----------



## Catherine

Could B12 be the one to work on?  Low iron, low sort of b12 and high folate.  I think Matt has high folate.

Still can't work why when we treat B12, iron increases and folate falls.  Maybe disease in remission helps too.

With Matt's being ferritin at 68 he doesn't have a problem with iron levels unless inflammation is playing a part and believe me when the testing people think inflammation they like to make lots of notes on the results:smile:

One thing to check does the blood order have a comment about monitoring level for Crohn's patient on aza.  Ours do went ordered by the GI but not when ordered by gp.


----------



## DustyKat

Ugh! B12! It is my nemesis! :voodoo: 

*I* want it at least twice what the level is but when I last spoke with the GI about it he went on about some loop effect thing and I wasn’t paying enough attention, probably thinking of my next question cause it wasn’t what I wanted to hear! :lol: 

Matt will take tablets until the cows come home but when it comes to needles he will happily give them a wide berth. I have nagged the GP about it and he is happy to give them but of course Matt makes no mention of them when he goes because, well…the levels are normal Mum! :yfrown:

I shall talk about the whole Iron Stores/B12 at the next GI visit. 

Yes, the referral states in the clinical notes that it is Crohn’s Disease, Right Hemicolectomy, Imuran or various combinations of that. 

He doesn’t have any overt signs that there is anything going on Crohn’s wise. 

Dusty. :sheep:


----------



## Tesscorm

Dusty,

Am so glad Matt continues to do well!!!  And only needs some minor tweaking! 

Re the B12, zinc, etc. - could the reason for his consistently low-ish levels simply be that he is unable to absorb more?   As he's had some bowel removed, is it possible the remaining bowel just cannot absorb more, even if supplements are given?

In any case, I'm glad he is healthy and doing all that he loves - school, soccer... 

And, glad the Sarah is moving 'full speed ahead'!    The U.S. trip sounds so exciting!  I'm sure she'll have a fantastic time!




> I wasn’t paying enough attention, probably thinking of my next question cause it wasn’t what I wanted to hear!


  This made me laugh as I've caught myself doing the same thing! :ybatty:


----------



## DustyKat

Thanks Tess.  

I think I have misled you with the supplements...bad Dusty. :redface: All but the B12 are at good levels (in my way of thinking) but I surely see what you are saying. I think he likely has the ability to absorb what is needed via supplements but can’t maintain the levels without continued supplementation due to not absorbing via the normal channels. 

I have chased up the Vit D and his level is 118.  

Dusty. xxx


----------



## AZMOM

Dusty - Unrelated to supplements.....I think I need your autograph!  :rof: Surely over 50000 views for your personal thread deserves an award!  

Love you.  :ylol2:

:congratualtions:


----------



## DustyKat

Okaaaaaaaay….






Dusty. :eek2:


----------



## DustyKat

GI visit went well.  

Spoke at length about the Iron Studies and B12. 
The GI is happy with the Iron Studies due to the Ferritin level and gave a very lengthy explanation as to why. 
B12 - We spoke about my observations of Matt, Matt said nothing, and the GI spoke to Matt about B12 and the difficulties of obtaining true levels. 

The GI asked Matt how he felt he was going and Matt said he felt that the past 6 months is the best he has felt since being diagnosed!  I did offer to leave the room but Matt said he didn’t need to talk about anything privately. They then went on to talk about Maths and other stuff. 

Plan:

All going well consult again at the end of the uni year (?Nov). 
Recommended B12 IMI quarterly. 
Next bloods to include TPMT again and a recheck of Quantiferon Gold and Varicella Titres but not the Heps. 
Meds unchanged.

Dusty. anda:


----------



## Sascot

Great update, glad things going well


----------



## Tesscorm

Great update!!  :dusty:  So glad all continues to go well for Matt!


----------



## Farmwife

YA for drugs when they work.
Great news.


----------



## Jmrogers4

Thank for the fab update.  Keep on keeping on...


----------



## my little penguin

Woohoo for the wonderful updates!!!


----------



## upsetmom

Thanks for the great update!:dusty:


----------



## Momtotwo

Great update. congrats. What is a quantaferin gold?


----------



## Maya142

Wonderful update! Your kids give me hope!

Momtotwo -- Quantiferon gold is a blood test to check for TB.


----------



## DustyKat

Thanks guys, you are the best!  

Sorry for the slow reply Momtotwo :redface: yep, TB test. 

Dusty. :Flower:


----------



## Trev

DustyKat said:


> Thanks guys, you are the best!
> 
> 
> 
> Dusty. :Flower:


yes we are (especially the Kiwis)  and don't you forget it......


----------



## DustyKat

Ewwwwwwwww. :sheep:


----------



## Trev

that was fast, your ears must have been burning.


----------



## DustyKat

And the rest of me Trev. :wink: :lol:


----------



## SupportiveMom

Wonderful to hear the great news!


----------



## AZMOM

Yaaaaa-hhhhoooooooooooooo!!!!!!

J.


----------



## Clash

Woohoo fab update!


----------



## Niks

Fab news Dusty :dance:  xxxx


----------



## kimmidwife

Yay for good news!!!!!! Always like these updates. Long may they continue!


----------



## DustyKat

Just back from seeing the GI for both Matt and I. 

Matt:

Bloods done a couple of weeks ago were all normal. Matt stated he has no issues and all is as usual.  
The GI Spoke at length with him about various things including the risks of Thiopurines in someone his age. This was raised, once again, due to the GI emphasising that his age of onset and the need for surgery so soon after diagnosis put him into the severe category of disease. He is to have metabolites done again to ensure he is on the lowest effective dose possible. Of course there is nothing to say that this lowers any risk further but it can’t hurt. 
This was countered with a more positive discussion on the statistics of recurrence of disease following surgery. The GI stated that if you get past the two year mark without a flare then the chances of flaring reduce considerably, for how long though is anyones guess. A lifetime would be good! :lol: 
I then asked about his views on FC as a marker of disease status. He feels that for UC and large bowel disease it is a very reliable marker and so he uses it primarily for those with UC and large bowel Crohn’s. However he doesn’t agree with the recommendations of some cancer associations in relation to scoping for this same demographic as FC doesn’t replace screening for their higher risk of colorectal cancer. Hence he scopes every 1-2 years. As far as Ileal/small bowel disease is concerned he doesn’t think that FC is reliable enough. He bases this on studies and his own observations. As far as I can ascertain, for some time now he and his IBD nurse have been running FC in conjunction with scopes. They have found very good correlation between the two with large bowel disease but not near as promising a marry up with small bowel disease. 
He also tried his darndest to get Matt to tell him what he was going to do next year, he finishes Honours in a matter of days, but it was to no avail. :lol: All I could say was welcome to my world of…I dunno. 
So plan at this stage is repeat bloods with metabolites, a view to scoping in the next 12 months and review again next June. 

Me: 

Well I had I scopes due to my issues with upper abdominal pain. The GP reckons I have Crohn’s and well suffice it to say I just looked at him and laughed and said no way. I believe it is a feral gallbladder. Anyway, prep was an absolute delight…2 Senekot followed by Picoprep, then Glycoprep and lastly more Picoprep. The term pissing out of your arse springs to mind! :eek2: But wasn’t the sedation a dream! The last thing I remember is the anaesthetist, he could put his shoes under my bed anytime!, saying to me…roll on your left side before you fall asleep. I was thinking yeah no problem, I am wide awake! I rolled over and that was it, I was gone. I hope they enjoyed the view.  
I saw the GI after the scope but he also did my review during Matt’s appointment the next day. He showed me pics and the basically upper scope is normal, just the tiniest hint of a hiatus hernia, so nothing to be seen that accounts for the pain. Biopsies taken. 
Lower scope was normal apart from one polyp in the caecum, which he removed. He had the pathology results and it was a precancerous adenoma. With that in mind I am to be rescoped in three years. Biopsies taken. 

So all in all a productive and good visit.  

Dusty. xxx


----------



## Clash

Great news that Matt is still symptom free and the positive news of less risk of flare this far out from surgery! 

Feral gallbladder...that is the most awesome term ever! I'm so stealing that to use! I hope your symptoms have abated and C would agree with you on sedation being a dream! Hee have a scope every six months if he could!


----------



## kimmidwife

Dusty,
Are they going to check your gallbladder?


----------



## Tesscorm

Glad both Matt's apptmt and your scope went well.  Great news re Matt passing that two year hurdle!  I'm with you in wishing it's for life!!  I wonder if he meant two years "post surgery" or just two years "post last flare" - I hope is it's the second and all the kids can get to that point! 

And, glad your scope went well   I hope your systems do alleviate, NOT to return!


----------



## DustyKat

Thanks all.  

@Clash: I haven’t patented that term yet so steal away! :ylol: 

@Kim: I had an ultrasound back in June that showed some gallstones, there was no sign of infection, disease or blockage. But in my mind that doesn’t mean they couldn’t mobilise and cause an acute blockage that then passes. I don’t really have any of the classic gallbladder symptoms and neither is the pain classic. Hence why I think it is feral. :lol: I will see the GP after he receives correspondence from the GI and discuss things then. 

@Tess: Sorry mate, he only spoke of two years post surgery but I agree wholeheartedly with your sentiment! :ghug:

The really spooky thing was…when I was going down to Port with Matt I realised that it was the exact same week 4 years ago that we were doing the same trip to the GI and he received the official diagnosis of Crohn's. I even had my scope the same day as he did! As I said to the GI when he was giving me my results…man I wouldn’t give to swap places with Matt. *sigh*

Dusty. xxx


----------



## kimmidwife

Dusty,
You could be right about the feral gallbladder. My doctor is making me do a HIDA scan for gallbladder even though my pain is not in the normal gallbladder spot but I have such terrible nausea.


----------



## Sascot

That's great Matt is doing well. Sorry to hear you are no further forward for yourself. Sounds just like my endoscopy :ysmile:, nothing showed but a small hernia. The GI said it was likely that causes the severe chest pain - who knows.


----------



## DustyKat

Things have been a bit topsy turvy at this end of late, hence my absence from the forum. None of it has been Crohn's related, other family related issues, but just when things seemed to be evening out a tad Matt has become unwell. 

In the past month or so he has complaining on and off of a 'sore tummy'. This has necessitated him cancelling a couple of tutoring sessions so I know it is more than middling. Also on the eve of Good Friday he told me he had had some blood that morning when opening his bowels. Bleeding has never been a symptom for him in the past and he has had one further episode since. The amount is only small and fresh and nature so it may well have nothing to do with his Crohn's. 
His appetite is waxing and waning but I see no obvious weight loss. He does not know how much he weighs and is far from interested in finding out. He has had no other intestinal symptoms. 

However he does have other 'stuff' going on, that being what appears to be a persistent state of upper respiratory issues. They are allergy/hayfever like in presentation with a runny/snuffly nose, sneezing and coughing. 

He has a couple of things trending out of NRR over the past 3-4 months. His last bloods were done the week preceding Easter. CRP has been elevated and at a consistent level of about 12-14 (1.2 - 1.4 US). Eosinophils elevated this run and Lymphocytes, which have always been sub normal but are now trending more and more to the low 0.5's - 0.6. All other bloods are normal including Hb, Ferritin, ESR, platelets, combined WCC and all his vitamin and mineral levels which were done at this last blood run. Thiopurine metabolites were done in December and at that time all was good. 

I sent an email to the IBD nurse over Easter outlining the issues Matt was having and asking what the likelihood was that his bloods were reflecting simmering intestinal inflammation, upper respiratory issues that have coincided with his declining lymphocyte count or both. I didn't really expect a concrete answer because to be fair how would you really know, it was more a case of me just putting out there. 

The reply in consultation with the GI was, in view of the fact that Matt is a man of few words and he has volunteered the information he needs a thorough review sooner rather than later. The GI is overseas at present and will be away for a couple of weeks yet. With that in mind his Pentasa has been doubled in the interim. Scopes booked for the 19th May and in the week or so preceding the scopes he is to have a full blood work up, including metabolites, a FC and an MRE. 

I am trying hard not to look at him and see things that perhaps aren't there but to me he does have that look about him he had 4 and half years ago...tired with dark circles under his eyes. Then Friday just past he woke from his sleep with a headache that presented as pain behind the right eye accompanied by nausea and one episode of vomiting. He has never had this occur before. Sarah and I both suffer with migraine so perhaps it was a migraine, he did not have an aura but then not everyone does. Many of the symptoms seem to match a cluster type headache but then again this was just the type of thing Sarah had pre-diagnosis. *sigh* Now, I did say I was trying NOT to read into things that aren't there didn't I? :eek2: 

He already had his 6 monthly consult booked for the 4th June and they want to keep that at present, just in case he does need face to face follow up regarding histopathology etc. 

TBH, overall he isn't that bad and he doesn't know himself if what he is experiencing is Crohn's as it is not what he felt last time.

Pressing on and keeping everything possible in a constant state of being crossed! 

Dusty. xxx


----------



## CarolinAlaska

Sorry to hear it.  It's enough to make a mother crazy, isn't it?!


----------



## hawkeye

DustyKat said:


> Then Friday just past he woke from his sleep with a headache that presented as pain behind the right eye accompanied by nausea and one episode of vomiting.


The headache thing rings a bell. I rarely get headaches that are bad enought that I have to take Tylenol.

I had a similar experience a few years ago when I was dealing with my stricture.  I would wake up during the night with a severe headache behind my right eye. It was so bad one night that I went to the ER. This continued for a few days then stopped.  This would have been when I was into my frequent “flares” due to the stricture. I don’t know what caused it - the only event that ties it to Crohn’s or treatment was that at about that time, my Imuran dosage was increased from 150 mg/day to 200 mg/day (it was later dropped back 150mg due to the white cell count dropping). 

My only other experience with this type of headache was about 3 years after diagnosis,  when I was pretty much in remission due to Imuran and 5-ASA, I kept getting a similar headache at the same time each day over the course of a few days. The only thing I could think of was that there was something in the particular university classroom that was triggering it.

Given the upper respiratory issues, could there be a sinus connection?


----------



## SupportiveMom

DustyKat I am guilty like you tryiNG to read into symptoms and what they really mean. So I don't  let my anxiety get the best of me I write all the symptoms down every few days to compare. The waiting on how the body will heal or not heal, and what that means to our kids will make you go mad. Waiting on possible answers is hard. Big hugs!


----------



## pdx

Sorry to hear all this.  Waiting is so hard, especially when your child is ill.  Hope things get better soon.


----------



## izzi'smom

Dusty, hoping that everything sorts itself out quickly, both for your family and for Matt!!


----------



## Farmwife

:ghug: I hope things get sorted fast.


----------



## Sascot

Thinking of you both. Do much better with your head in the sand, pity it doesn't get to stay there! Hope the scopes and tests go okay


----------



## kimmidwife

Dusty,
Thinking of you and Matt. Hope they figure out quickly what is going on. Would like to stick my head back in that sand as well!


----------



## my little penguin

HugS Dusty
Always hard when the water is sooo muddy.
Hope things clear up quickly


----------



## upsetmom

Just wanted to send you a BIG HUG...:ghug: I hope things improve soon.


----------



## Catherine

Think of you, hoping this is just a bump in the road.


----------



## Tesscorm

Thinking of you :ghug:


----------



## Poached Pear

Thinking of you Dusty. Wishing you and Matt a quick resolution to whatever is going on. Whatever this is, it will go away. Like everything else it will pass. I hope that you are not suffering too much. I heard someone say that when you have a child it is like part of your heart is walking around outside your body. Very true, no?


----------



## Niks

:ghug: hope all goes well Dusty.  Thinking of you xx


----------



## Farmwife

How's Matt? Update when you can.


----------



## DustyKat

Thanks guys. :ghug: 

Matt is getting along much the same, periods of good appetite and no symptoms interspersed with periods of decreased appetite and complaints of a sore stomach/just not feeling right. As far as I know he has had only one more episode of blood, small amount and fresh. His upper respiratory symptoms persist and are unchanged in severity. 

FC was done last Tuesday, still awaiting results. Bloods done last Thursday and all are back bar Metabolites. CRP has increased further to 29 (2.9), Lymphocytes down to 0.5 and all else is blindingly normal, including Platelets, INR and Ferritin, although Iron is trending down. 

His MRE is tomorrow. Different prep this time. He is to have one teaspoon of Metamucil in 150mls of water every 15 minutes for the two hours preceding the test. 

Scope on the 19th May and the irony of the date hasn’t been lost on me! World IBD Day, how fitting. :yfrown: A different prep this time round with this too, he is to have two lots of MoviPrep. 

So that’s where we are up to and while I want results I also don’t want them, Ugh! 

Thinking of you all so much. :Karl: 

Dusty. xxx


----------



## Sascot

Sorry things are still not good. Hope the scopes provide some definitive answers.


----------



## SupportiveMom

Dusty...I hope you get off this roller coaster soon. Up & down it is hard to plan anything. 

I get the wanting / not wanting. It stinks the kids are going through this and with no clear answers you start to let the mind wander. Thinking of you.


----------



## awmom

Gosh Dusty, I hope they can get to the bottom of this soon.  Its great that Matt has all the imaging scheduled right away and close together so you will have a complete picture.  In the meantime it's so hard not to worry......will be thinking of you.


----------



## kimmidwife

Dusty,
Sorry Matt is going through this now. Hope the MRE and Scopes give you some answers.


----------



## David

Fingers crossed for Matt, Dusty.  You're in my thoughts.

*hugs*


----------



## DustyKat

Thank goodness that is over! This MRE appointment has been nothing short of a PITA from the outset to the end. :yfrown: I don’t think I have ever said the phrase…it would be less painful to poke my eyes out with a pen…more than I have in the last month!

Over a month ago, when the IBD nurse rang me, I contacted radiology to ask if they do MRI’s. Being rural this is a fairly new service in our area so I rang to double check. The response was, yes we do. At that point I also asked how long the waiting list was and explained that it to be a week before his scope on the 19th May. I was asked to send the referral when I received it in the mail. No worries the wait was about 2 weeks. Plenty of time. 

Receive the request in the mail the following week. See it is an MRE so ring again and ask if they do MRE’s. The lass on the desk wasn’t sure so asked that I fax the referral up. Again I explained when I needed to have the MRE done. Fax the referral up and ring the following Monday, 3 weeks ago. Yes they have the referral and yes they do MRE’s. Again I explain that the MRE needs to be done on the 12th May. No problem they say, we will ring back to confirm the date and time. Waited all week, nothing, give them an extra couple of days the next week, nothing. Ring again to confirm the date, the MRE is not booked as we don’t have a referral. Um yes you do you were looking at it last week and telling me all would be fine. Yadda, yadda, yadda….well can you please put in a tentative booking for the 12th. No we can’t do that because we don’t have the referral, um yes you do. But I can’t find it. Not my problem just do a tentative booking pending receipt of the referral tomorrow when I drop it in there! 

Drop the referral in and told they will ring that day or next to confirm the date and time. No call received. Monday last week I ring again to confirm the date. No sorry, not booked. I explain the timeline of events and they transfer me through to the technician. Oh I’m sorry, the earliest we can do that is the 18th. Um no, we will be in Port then and Matt will doing his scope prep. Oh dear they say. At this point I asked if I was sounding really pissed off, to which she replied yes. Again I explain the timeline of events and she kindly books him into the slot set aside for hospital emergencies. 

Arrive today all prepped up, do all the paperwork and the lass at the desk asks when he is seeing the specialist. Next Tuesday for scopes I say. To which she replies, oh that explains why we had to fit you in. Um, I beg your pardon? We had to fit him in. No you didn’t have to fit him in, you didn’t book it for the 12th like I asked 4 weeks ago nor numerous times since then. 

Go down to the MRI room. Matt goes in and is in there for about 30 minutes and comes back out. Wow that was quick! To which he replies he hasn’t had it yet! What?! Well the technician asked if I had had two litres of milk for the prep and I told him no. Seriously? Didn’t tell him you have had prep though? No. Ugh! I go and see the technician and say what about the Metamucil? He says that is an older prep, now they use milk. But he has already had the Metamucil! Oh, I thought he hadn’t had any prep. That made for a very happy technician, and mother!, and finally the MRE was done but holy hell it took some time by the time he finished. 

So yes, it would be less painful to poke my eyes out with a pen! :mad2:

Report should be ready in about 48 hours. 

Feeling nervous about the report and the scopes but also wondering that even if all was to be well what are his chances of staying on Imuran given his Lymphocyte level. *sigh* 

Dusty. xxx


----------



## my little penguin

Wow Dusty
Wow!
Never experienced anything like that at all.

What is the milk prep?
Just plain milk or milk plus something ?
DS is allergic to the prep they do here so ....
Always looking for alternatives


----------



## Sascot

Unbelievable! What a frustrating experience. Glad it's all done.


----------



## DustyKat

@mlp, just plain milk.  

No other oral contrast just IV. 

Since Matt has psyllium everyday he found the Metamucil prep a breeze and much preferred it over barium. I don’t find that hard to believe! :lol: 

Dusty. xxx


----------



## SupportiveMom

OMG! What an ordeal. Thank goodness you took no prisoners and pushed them. It is just plain stupid we have to advocate for our kids like this. I worry about them doing this in adult care. Maybe listening to us nag & push & fight will get them prepared. Hoping answers come in 2 days and you aren't calling all over town for results. Hugs.


----------



## DustyKat

I have my results bases covered. A copy of the report goes to the GI and the GP, plus they can retrieve it online from radiology if there are any hiccoughs. The GP will email it to me.

Dusty. xxx


----------



## Clash

Holy hell,  Dusty! Forget poking your eyes out with a pen I would've been poking theirs out, after the procedure was done, of course!


----------



## Tesscorm

:voodoo:  Disgusting!  How do these people keep their jobs!?!?!?  Especially in the medical field?!?

I guess most of us have felt your frustration! :voodoo: But, so glad, in the end, it was done.

I hope you get results quickly and that what's shown allows for a fairly easy fix!  :ghug: :ghug:


----------



## DougUte

Unbelievable! I sometimes wonder if these people in the medical field can tell up from down. :yrolleyes: Hang in there Dusty!


----------



## crohnsinct

Bloody Nora!


----------



## DustyKat

I have not had a brilliant track record with this mob but my options are limited given they are the only radiology available without travelling some significant distance. That’s not to say I haven’t had some very good experiences with them because I have. 

If this latest episode had indeed turned pear shaped and the MRE was not done when I had asked I was going to make an official complaint, starting with them misdiagnosing Matt at the outset in 2010 and moving on from there, and believe you me a not so pretty exchange took place at that time. They wouldn’t remember it but I sure as hell do! :lol:  

As it was they received the message loud and clear yesterday that I was displeased with how things had panned out over the last month. :eek2:

Dusty. xxx


----------



## David

If there is one thing I would hate in this world, it would be to be on the wrong side of DustyKat when she goes Grizzlybear momma.


----------



## DustyKat

Me, yesterday. :lol:


----------



## 24601

Dusty - hope the report is all good! Sorry to hear how difficult they made this!

@SupportiveMom - my advice is (where possible!) to not let your adult kids do this thing alone. Having to fight like this for appropriate medical care is tough and even adults can need help at times with someone to advocate for them - especially when sick. It's always been the biggest irony to me that you often have to fight hardest to get help when you are least able to but most need it.

Not to say you can't be an independent adult but that it helps to recognize that even grown ups benefit from someone to advocate for them at times and for us all to be open to that


----------



## SupportiveMom

So does that mean I will be going to GI appointments for the rest of my life with D? Oh she would just llllloooooovvvvvveeeee that (insert sarcasm here). She is already asking when she can go to her GP appointments alone. I think I have too independent of a kid. She has made it clear in no uncertain terms I am going to the GI appointments as long as she has this current GI. She is afraid she would say something stupid. She really doesn't like her.

me I'm happy to take my kid as an adult as long as she lets me. I wonder how many people have a parent or SO go with them.


----------



## 24601

@SupportiveMom - I was an independent kid who was happy to go see my GI alone at 17 (and my mom thought it was great that I wanted to take control of it all too) but we both changed our minds within one appointment when he morphed from a kind and seemingly helpful doctor to a mad man ranting at me when I asked if he thought I could try dietary therapies for Crohn's (something he'd mentioned at an earlier appointment). That's coloured my view somewhat obviously! As have too many of the doctors I've had over the years who have these episodes. I don't think it has to be a parent who accompanies or that you need to play an active role but it's nice to have someone there to turn to and say "wait, did he/she really just say that?" It may be playing it safe, and I finally have a team of GIs that I'll see alone (except my somewhat temperamental but otherwise brilliant surgeon, classic bedside manner at times) but on average I believe you get treated better by doctors when there is another person present. FWIW my many hours sitting in the waiting rooms of adult GI clinics over the last 19 years say that the vast majority of IBDers take a parent, partner, adult child or friend into the appointment with them. But hopefully it won't be a lifetime of GI visits...call me mad but I'm optimistic 

p.s. sorry for chatting on your thread DustyKat!


----------



## crohnsinct

Thanks for that input 24601!  I will remember that.  

I think you are right because my friend was recently in the hospital with gallbladder problems.  She was either in so much pain or so drugged up that she couldn't concentrate on what the docs or nurses were saying let alone keep it all straight a few days in (complications). So I became her gate keeper.   I even caught the nurses/aides trying to feed her an hour prior to her surgery and had to remind them that she was NPO.  I also had to rattle a few cages looking for test or imaging results (this hospital is notorious bad with follow through and communication).  It got to a point where she wanted me there all day every day until she got out.  

Glad you pointed out the benefit of having your "person" there at routine visits as well.


----------



## DustyKat

My personal belief is that whilst ever a patient is willing, no matter the age, they should be accompanied to every specialists appointment regardless of the discipline. It is always better to have that extra set of eyes and ears in the room and you complement each other in one picking up what the other may miss. It also allows for a post appointment discussion and for thoughts to flow on how each interprets what has been said. It really comes into its own if it is an appointment where bad news many be given. It is understandable for a patient to be overwhelmed by a diagnosis or change of treatment and from that point on in the consultation ‘switch off’. 

My kids go to the GP alone but I accompany them to specialists. They are happy for me to do this and do look for me to do it. I don’t take control as such but rather give them the freedom and responsibility to conduct the consult in the way they wish. I will speak up if incorrect information is given or I feel a topic hasn’t been discussed or appropriate questions asked. 

I do always ask if either would like to speak privately and offer to leave the room. 

Dusty. xxx


----------



## kimmidwife

Dustykat,
I agree with that! Even adults should not go alone when it comes to specialists.
Glad Matt is done. Sorry you had to go through all the craziness. Hopefully the results come on time as promised!


----------



## Catherine

I go to all Sarah's GI appointments.  Maybe hard now she in the UK.

I attend most of my husband's specialist appointments, his specialist is currently seeing him every 8 weeks, so I miss a few.


----------



## DustyKat

F***

MRE results are back...



> Comment: Diffuse thickening and enhancement of the distal ileum extending from the enterocolic anastomosis and extending for an approximate length of 27cm proximally with increased mesenteric vascularity. Findings likely suggest changes of recurrent/residual Crohn’s disease. Enhancement of the wall and increased mesenteric vascularity suggest active Crohn’s disease. No significant proximal bowel obstruction or mesenteric abscess is seen.


The rest of the small bowel, stomach and abdominal organs are normal. 

Dusty.


----------



## Catherine

:yfrown:Sorry Dusty:yfrown:

How Matt feeling?


----------



## happy

Oh Dusty,
So sorry that you and your family are having to deal with this. May you soon have more info about options and next steps. :ghug:


----------



## Maya142

Really sorry to hear Dusty. What a nightmare MRE!!
Hope you can get this under control quickly and that Matt feels better soon :ghug:


----------



## Sascot

So sorry to hear that. Hugs


----------



## upsetmom

:ghug:.Just wanted to send you a hug...l'm so sorry to hear this.


----------



## my little penguin

Sending lots of hugs .
Hopefully after the scope the GI can come up with a solid plan .


----------



## 24601

Sorry to hear this Dusty! :ghug: Hope they can get Matt's disease activity under control quickly! Do you have an idea what the treatment options will be?

Also so much yes to everything you said about us all benefitting from another pair of eyes and ears at specialist appointments! Even with an entirely helpful doctor it's always great to have someone else to remember what was said and what questions should be asked and have someone to discuss it with later. I make a slight exception with my current GI because I email with him and have his mobile phone number so anything I want to check or that I think of afterwards, I have the ability to do that, as well as open invitation to all clinics. But so often we have these relatively brief and spaced out appointments and having someone else there helps to make the most of those opportunities which are critical to our treatment and the course of our disease. 

I'll stop rambling about that subject now but it just happens to be one of my hot topics. I also believe you should be wary of any doctor who doesn't want you to have someone accompany you to an appointment - there are some who don't like it and in my opinion that's not likely to bode well for their attitude towards patients and illness.

Really hope Matt will be feeling better soon!


----------



## crohnsinct

Oh man Dusty!  So sorry to hear this.  I was really holding out all hope that this was just a blip.  Crohn's Sucks:voodoo::voodoo::voodoo:


----------



## Mj1gaynor

Sorry to hear this.  Sending support your way.  Lots of hugs!


----------



## Farmwife

Dusty all I can do is send virtual hugs to you and yours.
Update when you can, I know you have a lot on your plate.


----------



## kimmidwife

Dusty,
Sorry to hear. Glad you got the results quickly. Hope they come up with a plan and get things under control quickly!


----------



## Tesscorm

I'm so sorry to hear this.   After so many good years, must just feel like a sucker punch to you and Matt! :ghug:

Wish I could say or do more than just send virtual hugs and tell you I hope it can be brought under control very quickly.

Sending lots and lots of hugs and thoughts your way! :ghug: :ghug: :ghug:


----------



## Jmrogers4

NOOOO!! Hope you can get things back under control quickly.  Sending big squishy virtual hugs.
Crohn's Sucks!


----------



## DougUte

:yfrown:Oh Dusty. I am so sorry to hear this news. That is not good.

What is next for Matt? I hope it is not surgery. Makes me sad.


----------



## DustyKat

I know I have had a dream run when it comes to my two post surgery, but needless to say this has dredged up a lot of old feelings and fears of those days pre surgery.  

I would be lying if I said this was unexpected even though I was hoping beyond hope that the result would miraculously return as normal. I must admit though that I am a little surprised and concerned at the length of bowel affected. 

As to Matt, he is going on much the same. I haven’t actually told him the result yet as I didn’t see much of him yesterday and I have yet to print it off. I shall do that today and speak with him tonight. 

I don’t know what the way forward will be or what the GI even thinks or does in these circumstances as this is uncharted territory for us. It has been a number of years since we have had the…we will do this and if that fails move to this talk. Plus it is a new GI to boot. 

My own assumptions would have to be that he will commence Prednisone to bring things under control, I don’t even know what this GI thinks about EEN or if Matt would be willing to go down that path, and then move on to a biologic. I would have to think that Imuran is now off the table as would this flare not suggest a failure of the drug? Plus there is the issue of the decreased Lymphocytes that have now reached the borderline at which the drug should be ceased should they fall any lower. *sigh*
I am now at that crossroads we all find ourselves at in not wanting to give up one scary drug for another! :lol: Or for the newbies, not wanting to start them n the first place!

Lastly, thank you guys so much for all the kind thoughts and wishes. It truly does mean so much to know that there are others out there that get it. :ghug:

Dusty. xxx


----------



## Catherine

Imuran I would think has fail Matt and would be off the table unless you could increase the dose amount but didn't it need to be reduced because the blood levels were too high.  May you could try using the other drug (sorry can't remember it name) to shunt it.

You could look at MAP treatment?

Assume there is enough small bowel involvement to allow the use biologic when you add the amount involve now and the amount remove by surgery.


----------



## crohnsinct

Hmmm...this reminds me of a conversation I had with O's GI way back at the beginning.  It was when she was super close to finishing Prednisone.  I needed just a tad more but the script was for a larger amount.  I asked if I should fill the larger script or if they could write one for a smaller amount (waste not want not).  He said I should fill the larger amount because if she flared we would probably do a stint of prednisone.  When she later added EEN he said the same thing...hit future flares with a course of EEN. 

So at the time this made me think that it is possible to have a momentary flare and get it under control with steroids and such and go back on your merry way with your maintenance med.  But that would assume they can tell the difference between a med failing and a flare...I guess maybe our doc treats as a flare and then if they can't get it under control declare the drug a fail?  

I am sure Matt's surgical history and his lymphocyte issues changes this a bit but just thinking out loud.


----------



## SupportiveMom

Sending my support. I know this has been rough. At least you gave some answers to move forward with. Sounds like prednisone might be the only quick fix until a maintenance drug can start to work. The doc give any suggestions or ideas of next steps? Glad there are no assesses or strictures. 

How is Matt doing with the news? I hope he is handling it ok.


----------



## my little penguin

I would think Imuran would be off the table
If he was having a little bleeding or numerous BM etc that would be a "flare "
But damage showing up to that extent on an mre probably shows things have not been good for a while without symptoms
Maybe I am wrong

Good luck with the scopes
Hopefully that will give the GI the compete picture 
Hugs !


----------



## DustyKat

Matt hasn’t seen the GI yet. 

When all this started the doc was just about to go overseas so he upped his Pentasa as an interim measure. We waited a couple of weeks and then started the tests two weeks out from his scope which next Tuesday the 19th. He will see the GI next Tuesday pre and post scope. 

He already had his 6 monthly appointment booked for the 4th June and we were advised to keep this in case he needed to see him for histology review. Based on his MRE result I imagine this appointment will remain. I am guessing the GI will do something next Tuesday to treat the inflammation and then perhaps discuss his long term treatment options on the 4th when he has all the results in front of him?? 

Which ever appointment time is the most appropriate to raise particular topics then I will be broaching EEN, MAP, a horizontal shift of meds within the same class and biologics. And yes, I don’t know what the options for remaining with thiopurines will be given his lymphocyte count. He has had no trouble metabolising the drug so upping it wouldn’t be the issue, just the blood counts. His latest metabolites are still pending. 

Matt had 28cm of bowel resected and now has 27cm affected. Sarah had 68cm resected back in 2006. 

Dusty. xxx


----------



## DustyKat

Sorry mlp, posting at the same time. 

My surprise at the length of bowel affected has me thinking the same way as you…this hasn’t just happened in the last couple of months or so. 

Dusty. xxx


----------



## Tesscorm

Just a question...  I don't recall if Matt has ever had an FC test??  If you and MLP are correct in that this has been happening for a while, it seems his labs didn't reflect that until very recently, fairly close to when he started showing symptoms.  Just wondering if he's had FC tested and if it reflected anything 'off' sooner than his labs?  I'm assuming no test or you would have followed up a high result immediately.

Won't help anything now but, certainly a confirmation that both labs and FC tests should be regularly done.  

:ghug:


----------



## Maya142

Biologics are hard to get in Australia, is that right?
Just wondering if he would be able to jump to Remicade or Humira to avoid more surgery...
:ghug:


----------



## DustyKat

He has never has an FC done Tess. 

We discussed FC at his last appointment, in December, and the GI said he has found that FC doesn't correlate well as a marker for inflammation in small bowel disease. He only does them when he schedules scopes. 

When I received the pathology request from the GI a month ago it didn’t have FC listed so I had the GP do one. The results are pending, it was done Tuesday last week. 

Dusty. xxx


----------



## Catherine

The FC test results usually take 10-14 days.    The timing of  FC should pretty much  match with the MRI which is good.


----------



## DustyKat

@Maya142. 

We have the same system as the UK. Because approved biologics are covered under the PBS, so heavily subsidised by the government, there are very specific guidelines as to their being prescribed. I would imagine that Matt shouldn’t have an issue being prescribed them due to his surgical and medication history. 

Dusty. xxx


----------



## DougUte

DustyKat said:


> Sorry mlp, posting at the same time.
> 
> My surprise at the length of bowel affected has me thinking the same way as you…this hasn’t just happened in the last couple of months or so.
> 
> Dusty. xxx


I was thinking the same thing. That has been going on for a while. :stinks:


----------



## DougUte

Dusty, 

I was thinking about you guys. I have been on Humira for 4 years next month. I started it about 8 months post surgery. It took that long to get approved for it. When I started Humira I also had a colonoscopy that showed new inflammation at the anastamosis site. The Humira was able to beat back that inflammation and put me in remission, which I continue to enjoy to this day. 

I just wanted to stress that while a biologic is indeed a scary thing to consider, many of us have had good experiences with them. I know the risks involved, but for me the benefits have out weighed the risks. 

I hope things begin to turn around soon for you and Matt.


----------



## 24601

I think it's good that you've done the FC test. I understand your gastro's point of view but I have small bowel disease and for me it's my only inflammatory marker these days so it certainly has a role to play for me. I hope it proves helpful for Matt.

Also when Matt had surgery did they measure the length of his small bowel? Or perhaps give an estimate from the scan. I think it's good to have that info mostly so it's not a surprise at a later date. Doesn't change the aim of the game of course which is preserve, preserve, preserve. Would be crazy not to approve biologics for him.


----------



## DustyKat

24601 said:


> Also when Matt had surgery did they measure the length of his small bowel? Or perhaps give an estimate from the scan. I think it's good to have that info mostly so it's not a surprise at a later date. Doesn't change the aim of the game of course which is preserve, preserve, preserve. Would be crazy not to approve biologics for him.


Not that I am aware of 24601. 

I spoke with Matt about his results last night and he has read the results of his bloods and MRE. He didn’t say much, he was more interested in what was for tea. I guess we have different priorities. :lol: 

Dusty. xxx


----------



## lenny




----------



## Farmwife

DustyKat said:


> Not that I am aware of 24601.
> 
> I spoke with Matt about his results last night and he has read the results of his bloods and MRE. He didn’t say much, he was more interested in what was for tea. I guess we have different priorities. :lol:
> 
> Dusty. xxx


Tea? See in America's he would have wondered about coffee.:yfaint:


----------



## DustyKat

:roflanim: Noooooooooo! Tea = Dinner.


----------



## Pilgrim

But is dinner = lunch?

I'm so confused. 

It sounds like Matt just takes it all in stride.


----------



## Tesscorm

:ack: don't get Dusty started on Aussie lingo...  she'll be all about fair dinkums, bubblers, Noras and roots!  :lol: 

Dusty - am so glad Matt took it in stride.  ALWAYS so hard to give your child bad news.  But then, he has good reason to take it in stride!  He's got the best mum advocate anyone could ask for!!!    He KNOWS he's in good hands - why stress when mum does it for you so well?!?!  

Sending lots of wishes that it can be brought under control quickly, quickly, quickly!!!


----------



## DustyKat

Stone the flamin crows Tess! :lol: 

Okay, and I quote:



> Lower-middle-class and working-class people, especially from the North of England, the English Midlands, and Scotland, traditionally call their midday meal dinner and their evening meal (served around 6 pm) tea, whereas the upper social classes would call the midday meal lunch (or luncheon), and the evening meal (served after 7 pm) dinner (if formal) or supper (often eaten later in the evening). In Australia, the evening meal is still often called tea, whereas the midday meal is now always called lunch.


So what I am saying is, I ain’t no upper class bitch but rather just a half breed Aussie that has bastardised the English language. :tongue:

Dusty. zythunder:


----------



## David

I'm sorry to hear the results Dusty 

*hugs*


----------



## Tesscorm

LMAO!!   Well, who would think a meal could be so complicated!  Lunch, dinner, tea, whatever...  as long as it's a nosh-up on the barbie, I'll be there with bells on!

Half breed Aussie, eh?  Hogwash!! You're nothing if not dinky-di!


----------



## Farmwife

Well I'll be by this definition I'm upper class......:dance:

Lower-middle-class and working-class people, especially from the North of England, the English Midlands, and Scotland, traditionally call their midday meal dinner and their evening meal (served around 6 pm) tea, whereas the *upper social classes would call the midday meal lunch (or luncheon), and the evening meal (served after 7 pm) dinner (if formal) or supper (often eaten later in the evening). In Australia, the evening meal is still often called tea, whereas the midday meal is now always called lunch*. 

Gotta let y'all go, storms a brewin and got to get my towels off the line across my barn yard.

Any again so sorry about the results......man can we get off topic.


----------



## crohnsinct

Hey Dusty!  Just sending mega hugs and letting you know I am praying for you guys today!  :ghug: Hope the news is better than expected!


----------



## Sascot

Thinking of you!


----------



## DustyKat

Well the scope confirmed what we pretty much knew.  

Matt struggled with the prep a bit, as in getting the amount down in the prescribed time. He was a glass short of the 2 litres but he was well running clear by then so it made no difference. His appointment was late in the day, 4:30pm, and they rang for me to pick him up at 7pm. By that time he was the last one there so while he was in the recovery room the GI came out and spoke to me in the waiting room. 

The inflammation is mild to moderate and chronic in nature and as a result he does not want him on Prednisone. He has no large bowel disease. He is to switch up to a biologic and it will be up to Matt to decide whether it will be Humira or Remicade. He has spoken to Matt about it and it will be further discussed on the 4th June as the histology results will be well available by then. 

In the meantime we are to carry on as is. Matt has been out of sorts and I don’t know if it was the prep, what the doc spoke to him about or both but now we are home again he seems to be in good spirits. Aside from the prep days he has been okay symptom wise, appetite good and no blood. 

I am in the process of formulating an email with a list of questions for our next consult so I think I will create a new thread and ask the brains trust to help me out so I cover all my bases. :wink: 

Dusty. xxx


----------



## kimmidwife

Sorry to hear Dusty! Hope whichever he decided on will work quickly and bring him to a long lasting remission!


----------



## DustyKat

Oh, I forgot to mention that I received his FC results on Monday.



> Faecal Calprotectin  ug/g                                       > 300*
> 
> BRI (</=50)
> 
> 
> 
> CALPROTECTIN IS HIGHLY ELEVATED.
> 
> An unexpectedly elevated Calprotectin should be followed up with
> 
> endoscopy or radiology.
> 
> 
> 
> BRI = Biological Reference Interval


I was a bit pissed that they didn’t give a specific number above 300 but hey ho, it’s better than nothing and something to work with when monitoring progress.

I also received his Metabolites this morning and I’m not sure what to make of the numbers. The GI wouldn’t have had these results on Tuesday so I don’t know what his thoughts are. 



> TGN                                281
> Units: pmol/8x10*8 RBC
> 
> 6MMP                               104
> Units: pmol/8x10*8 RBC
> 
> 6-thioguanine nucleotides (6-TGN or TGN) are active
> metabolites of azathioprine and 6-mercaptopurine.
> Concentrations above 235 pmol/8x10*8 RBC are
> associated with greater efficacy in inflammatory
> bowel disease. Significant leucopenia is more
> likely above 450, but can occur at lower concentrations.
> Unexpectedly low levels of TGN (in the context of an
> adequate prescribed dosage) can indicate poor
> compliance.
> 6-MMP is a thiopurine metabolite. Concentrations
> above 5700 pmol/8x10*8 RBCs are associated with
> hepatotoxicity. If the ratio of 6-MMP to 6-TGN is >20,
> therapeutic concentrations of 6-TGN may not be
> achieved with a dose increase.
> 6TG and 6MMP are now quantified by LCMSMS


He last had them done in December and they were fine, good solid numbers as has been the case since the outset. Whilst his TGN is considered a good enough number he has always been at least double this number as has his 6MMP (both in the 500’s) and it is in this context that I am making my observations. Non compliance is not the issue, whilst he may occasionally miss his morning meds he never, or almost never, misses his evening meds which contain the Imuran. His LFT’s are great so no liver issues feeding into it. 

What are the chances that diffuse thickening of a mild to moderate nature would affect absorption to that degree? 

Is Imuran in the process of just not working anymore? 

So this has happened in the last few months and coincides with the flare. His lymphocytes are a low despite low 6MMP numbers so I can’t see a dose escalation being on the cards unless Allopurinol is added?? 

Now that his 6MMP is much lower than usual will his lymphocytes recover whilst still taking Imuran?  

My questions are just me thinking out loud but any input would, as usual, be welcome. 

Of course this may be all hypothetical given his current situation. 

Dusty. xxx


----------



## Catherine

Hi DustyKat

We have always get a number for faecal calprotectin.

Our GI response to Metabolites levels was to increase Imuran dose but I don't know whether that would be possible with the lymphocytes level.

I don't think adding Allopurinol  would help because of the levels Metabolites.  Sarah's GI said something about have to get the Metabolites levels higher to see whether they are a shunter? first.


----------



## MamaHenn

Sending lots of good thoughts your way. I hope you get the next steps sorted out quickly and I hope Matt is feeling better soon.


----------



## Chester31

My son's lymphocytes dropped too low after only a few weeks on Azathioprine. He was then put on 6MP but they dropped again. After his recent flare he is now on weekly Humira, tapering steroids with the plan being to add in MTX once he gets down to 20mg Pred. Hope you get answers and a clear plan soon.


----------



## lenny

Good luck to your boy with whichever biologic he chooses!!


:kissgrits: Crohn's..


----------



## awmom

Just catching up Dusty,  I'm sorry to hear that things are rough at the moment.  Hopefully they will be able to start the biologic soon and get Matt well on his way to better.  Sending warm thoughts.


----------



## Mr chicken

Dusty
Is Matt taking it any better now that he has had a few days to digest the news??


----------



## crohnsinct

Good luck at the appointment tomorrow...or is it 6/4 already over there...I will never get used to the time difference.  :kiss:


----------



## positivemum

Hi Hope you get a way forward soon.

My son(16) was diagnosed at 12 did EN pred pentasa then aza. 2 years on aza and lynphocytes dropped too low so had to stop. that count has been low for 18 months. 4 months ago after routine scpoes we ended up with terrible results - severe inflammation so on to pred for 11 week course after 5 days IV and they added remicade ( could have had humira) - went with that as no needles except every 8 weeks. Has been a miracle so don't doubt that at all!

Good luck


----------



## upsetmom

Good luck with Matt's appointment.


----------



## Tesscorm

Good luck!  Thinking of you... :ghug:


----------



## Clash

Hoping all goes well, good luck!


----------



## Mr chicken

Update when you can


----------



## Maya142

Good luck! Thinking of you and Matt.


----------



## Farmwife

Thinking of you guys!


----------



## kimmidwife

Thinking of you!!!


----------



## Sascot

Also thinking of you


----------



## DustyKat

Thank you so much for all the warm wishes and thoughts. :heart: 

The appointment was a very lengthy one, I guess near to two and half hours, but a productive one. All the photos of the scope were viewed, the histology results discussed and all the questions I sent answered, ended up being 26 in all and the GI was tolerant enough to ask if there were any more I had. :lol: He has already sent a letter to the GP about the scope and histology so I shall obtain a copy of that. 

After much discussion about treatment options, including the pros and cons of each and their potential side effects, Matt has decided to go with Humira. The application was completed and this will take about 3 weeks to process. He has elected to go with the pen over the syringe. The IBD nurse gave him a dummy run through the process and also his Humira pack with all info and other stuff in it and a travel pack. We will go back when the script arrives for him to have his initial doses and be taught to self inject. He will do the next lot of loading doses and continue on from there fortnightly. Then back on the 20th August for review again and hopefully signs that it is working so a 6 month renewal can be made. 

He is to continue with his current medications regimen with Lymphocytes being closely watched. If all goes well Imuran would not be withdrawn for 2 years. 
He has some stricturing at the operation site as would be expected and inflammation is present in this area and proximal to it as evidenced in the MRE. It was because of this that the GI did not want to use Prednisone. He felt that Prednisone would have the potential to complicate matters as it may create further scarring in an already narrowed area.  

Both the GI and nurse were very good and upbeat with Matt and as usual Matt was very pragmatic. He said very little and asked nothing. He was pressed somewhat about how he was feeling about it all as they both acknowledged to him that it can be overwhelming, he just said…well I have to do what I have to do and that’s that..and then added…I just do as I am told! 

He has been a tad up and down emotionally but I can’t expect any different and imagine that won’t change as he strives to come to terms with things. 

Dusty. xxx


----------



## crohnsinct

DustyKat said:


> …I just do as I am told!
> 
> Dusty. xxx


You trained him well but really with you as a mother does he have a choice?! 

Sorry the results were so jarring and sending loads of prayers that Humira kicks Crohn's ass!


----------



## Sascot

Sounds like a very thorough appt. hope things go well with the Humira!


----------



## Farmwife

Well I'm glad that's over and you guys have a direction.:rosette2:
I hope it works and works fast for him.


Can I ask for the reason you decided on Humira over Remicade?


----------



## Jmrogers4

Hope the humira works wonders


----------



## Pilgrim

I hope he gets quick results. Tell him not to get discouraged by fatigue with the loading doses. It takes a few months to get a body used to it. 

Sending hugs down under.


----------



## Tesscorm

Dusty, am sorry that the appointment was necessary at all but glad the appointment was productive and that a firm plan is in place.

I hope the humira does the job quickly and that Matt find the self injections tolerable. :ghug:


----------



## Maya142

Good luck!! Hope it works like magic!!

My daughters always iced before and after the shot and that helped some. They also chose the pen because it was easier. They liked to watch TV while doing the shot to distract them.

 Like Pilgrim's daughter, my younger daughter also had a lot of fatigue with the loading doses, but once she got to the maintenance dose, she was absolutely fine.

Sending hugs.


----------



## Clash

Glad to hear that the docs were so thorough with everything. I truly hope humira does well for him!


----------



## Chester31

Good luck with the Humira!


----------



## lenny

Good luck!!!


----------



## Poached Pear

Hi Dusty,
Just checking in after vacation. I am curious about how much surveillance Matt had between is Imuran and last scope. Did he have a yearly scope. MRE? Also, my GI said that the FC did't correlate well with upper GI inflammation (same as your info), yet, it does correlate with Matt's inflammation now. Are you going to follow his FC with future tests? Does it make sense? 

My daughter had a FC of 125 in March and was told that the doc didn't think she should get another "mostly reflects what's going on in the colon." I am wondering if we should push for another one. 

Good to see you are back. I hope things go very well for your Matt.


----------



## Clash

Poached Pear, my son's disease was located at his terminal ileum and upward a bit from there. FC has been a great tool for him. We had one FC the same time as scope and MRE which gave us a baseline and showed that all the results correlated well.


----------



## DustyKat

Thanks again guys. :ghug: 

@Farmwife: The choice of biologic was up to Matt. The GI told him that in scheme of things there was little difference in efficacy between the two and that covered the question I had asked about the choice coming down to location of the disease and a history of fistulising Crohn’s. With that in mind in came down to the different delivery between the two. So the obvious to us was put to him…
-Remicade: 6 times a year with the need to go to the oncology department to have it administered via an infusion. The loading doses would have to be done at the normal rate but after that they could do quick infusions, the nurse had already sussed it out with the local hospital. There would also be an hour of observation post infusion. Being rural we don’t yet have infusion centres so it would be done at the rural referral hospital 20 minutes away. 
-Humira: You do it yourself at home but the trade off is 26 needles a year. 
I know Matt doesn’t like hospitals and IV’s full stop so I am assuming that is why he chose to go with the Humira. And the pen over the syringe would be because it is automatic as such and he doesn’t have to deal with the ‘needle and syringe’. 

Thanks Pilgrim and Maya142 for the heads up about fatigue. I would have to say that this is the probably the most troubling symptom for Matt at present. When they told him that so many of the patients they see feel so much better and their energy levels improve significantly when switching to a biologic Matt said…cool. That one word from him speaks volumes in how it must be affecting him. 

@Poached Pear: No he didn’t have scopes done yearly nor imaging. His surveillance up till now was purely clinical and observation based. I must add that during this time his old GP left the practice for a political career and this a new GI. If Matt hadn’t flared now he was scheduled for a scope this year any way. 
Regarding FC, I had a lengthy chat with the GI about this at his last check up in December. The GI was of the opinion that FC in small bowel disease doesn’t correlate well with endoscopic findings. By that he was meaning that he sees too many patients with normal FC’s that on scoping show active disease. As a rule though he does FC regardless of disease location when scopes are scheduled but not as a regular surveillance tool with small bowel disease. When I received the pathology request FC was not listed so I had the GP do a request for it. Given that he had a positive FC result then I will continue to use it as a surveillance tool to monitor both response to treatment and maintenance of remission as it proves it is useful in his case. All that said I do personally believe that FC is not as reliable a marker for small bowel disease as it is for large bowel disease. I do feel it is highly individual and hence why it is so important to know the nitty gritty of how your child’s clinical results match with what you see in front of you. In our case my daughter’s bloods essentially reflected nothing of the war that was being waged within her so perhaps she would be one for which FC proved futile as well? My son’s bloods on the other hand show everything and often before it is reflected in his well being. Perhaps with his level of sensitivity he is one for which FC in small bowel disease is as reliable as it is in large bowel disease.

Dusty. xxx


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## Clash

I would only add that my son's inflammatory markers are like Sarah's and show nothing of the damage being done inside but so far fc has been a useful tool. Also, I do worry since it is small bowel disease and CD is not static everything is always changing(my son started with symptomatic flares but the year before his surgery his was completely asymptomatic) that the usefulness of fc may not always be reliable for us.


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## 24601

Just wanted to add for Poached Pear that my disease is only in jejunum and ileum and FC is my most sensitive inflammatory marker and for me can be significantly raised, and correlates with MRE, when bloods show nothing at all. But agree that with this disease it seems it can all change - I used to have raised markers in bloods but not any more.


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## DougUte

Hi Dusty!
Humira is a good med. The trick I use to decrease the pain from the injection is to take it out of the refrigerator at least a half hour before the injection. It helps to warm up the med.

I hope it works wonderfully for Matt.


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## kimmidwife

Dusty,
I hope humira is his magic bullet!!! Keeping my fingers crossed for him!


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## Gmama

Hi Dusty,
So sorry to hear your news, but hopefully the Humira will be great for Matt. FWIW, we went round and round with LJ for over 2 years switching meds and doctors. Finally was able to move his care to CHOP. They put him on MTX right away & Humira a few weeks later (dang insurance approval) and it has all really given him his life back. He gets a lot out of the MTX, that kicked in for him within a few weeks, the  Humira of course took longer. He prefers the syringe, being able to control how fast you put it in helps with the sting. It does hurt, but it's over quickly. The MTX injection really doesn't hurt at all. As already said, we do take the Humira out 30 minutes ahead of time. There are lots of Remi fans here, but for us, you can't beat the convenience of doing a quick injection at home.
Also, LJ really didn't have any fatigue or issues with the loading dose. Best wishes & prayers sent your way!


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## crohnsinct

^ yeah, when discussing possible next steps for our younger daughter our GI explained that if the kids are younger he uses Remicade but if they are older teens or in college he goes with Humira as it is much more convenient for their scheduling etc.  

This school year we really started to feel the pinch with Remicade and O is getting a little antsy over the missed school and such.  No evening or Saturday appointments.  Even that wouldn't help much though with her schedule.


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## Gmama

^true CIC 
Our GI also said that they prefer to have their college kids on an injection over oral because the kids will still do an injection where lots seem to "forget" to take the oral meds once on their own.


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## theresad

@DustyKat - I just found this thread after Tesscorm referred me to it. I wanted to send my support to you and your son. I cannot believe what you have been through and your strength is just amazing. Your family is blessed to have you. Plus your sense of humor is just awesome 

Reading your story/journey with your son reminds me alot of me and my son. They are both the same age and seem to have a similar disposition. Your son has been through alot more upfront than mine as it were, but are in the same spot now w/ Imuran no longer effective and new biologic decisions. My son is to the point where he just wants to "not feel like hell every day." 

Anyway, I just wanted to send my support your way as you all continue through this madness. I hope you are achieving stability and get some much deserved relief and peace. 

All my best.


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## DustyKat

I’m so sorry to hear about your boy theresad. :ghug: But I have seen your thread about starting Remicade and you are right, they sound very similar indeed! I do hope with all my heart that it works wonderfully well for him and he soon finds long a lasting relief, bless him. :heart:


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## DustyKat

Update: 

The IBD nurse rang us on the 25/6 and the Humira script came in exactly on the 3 week mark. We went down for an appointment on Monday, 29/6. 

The nurse gave the first two injections and Matt gave the last two. He said they stung more than he thought they would but it didn’t last. He will do the next two loading doses before moving to his fortnightly one. He has had no side effects at all thus far.  

He had bloods done Friday 26/06 and surprisingly enough they are the best they have been since December. CRP not normal but very close to it and Lymphocytes have climbed back up to a much more acceptable level. He was quite upbeat in the lead to starting Humira and I will admit that it did surprise me. Thankfully that upbeat feeling has remained post loading loads.    

He has another appointment with the specialist on the 30/07 and then a major review on the 21/9.  

Onwards and Upwards! 
Dusty. xxx


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## Tesscorm

So glad to hear it's gone well!  And that he's been in good spirits throughout!  No doubt his mum has helped in keeping that positive spirit going!


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## theresad

Yay!!! Great news - keep the good vibes flowing


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## kimmidwife

Good news to hear!!!!


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## DougUte

Good to hear!


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## awmom

Glad to hear everything is going well!!!


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## DustyKat

Matt did his second loading doses last Monday with no issues. Was happy that there only two this time and is even happier that it will be one next time. :ybiggrin: 

Bloods due next week as we head back to the GI the week after. 

Is he any better? I don’t know. I have asked him and he says he feels the same but he hasn’t complained of any pain, appetite hasn’t increased significantly but then he isn’t saying he doesn’t feel like eating and I think the fatigue isn’t as bad. But maybe it is all attempt on my part to keep my bubble intact! :lol: 

Time will tell no doubt. 
Dusty. xxx


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## Clash

I hope time tells that things are turned around and long, stable remission is your reality for years to come!

Who knows on the CD side if Humira is working magic on our end but the rheumatologist thinks it's working it's tricks on that end so I am hopeful!

C still isn't as keen on humira as he was Remicade but doesn't say as much about having to do the shots (started in February).

Hopefully humira is kicking CD butt for both our boys!


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## DustyKat

Clash said:


> Hopefully humira is kicking CD butt for both our boys!


I second the sentiment 1,000,000% Clash! 

Sending much love, luck and well wishes that it works wonderfully well for your lad. :ghug: 

Dusty. xxx


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## theresad

Hi Dusty - hard to tell with these boys  my son has his second loading dose on Tues, and I keep asking him if he feels any improvement (fatigue, appetite, pain). I get a lot of "I dunno, I guess?" Argh.... 

I think we should trust our instincts and observations, and if it's just a hope bubble I guess that's ok too! I notice slightly more interest in eating (AKA I have to do less nagging) and he does seem to have more energy and better mood? I guess it all takes time and little signs of improvement are better than its been in awhile, so I'm going to take it!!

Keep the faith and positive thoughts your way!


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## DustyKat

theresad said:


> Hi Dusty - hard to tell with these boys  my son has his second loading dose on Tues, and I keep asking him if he feels any improvement (fatigue, appetite, pain). I get a lot of "I dunno, I guess?" Argh....


I so feel your pain! It’s like getting blood out of a stone! :ybatty: :lol:

I hope your observations prove to be spot on hun and your lad is responding, bless him.  

It will be an interesting journey for us both and even more so given that our boys have started it so closely together. :thumleft:

Dusty. xxx


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## awmom

Yup....like getting blood out a stone is right!!  I now depend on the "eh""s and "!"'s in his texts to alert me to trouble or good news!!

Hoping the humira/remi works wonders for your kids!


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## DustyKat

Well so far so good thus far…

Next shot due Monday which will see the start of his one injection fortnightly regimen. 

We head back down to see the GI this coming week and with that in mind the GI ordered bloods be done this week. The results have been returned and all that were out of whack or borderline are heading in a positive direction. His CRP is close to zero (NRR <5.0), Lymphocytes have risen again this draw (from 0.67 to 0.77) and his iron level, which has been sitting at the lower end of normal for some time has more than doubled (from 9.8 to 22.7 this draw??). The only thing that remains out of range is Eosinophils at 0.92. 

After this coming visit with the GI his next visit has been set down for the 24th September. I will have FC done before then. 

He played his first game of soccer today after a 4 week scheduled break, it is also his first game since starting Humira. After the game he said he felt it was the best he has played 
all year but he is still playing his cards close to his chest and not conceding that Humira may be the reason for it. I agree though that it is best not to count our chickens before they are hatched.

And the icing on the cake is Matt turned 22 on the 22nd! Hoping Humira is a long and lasting present to well being for him!  

Onwards and Upwards! :heart: 
Dusty. xxx


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## Farmwife

Aww happy birthday Matt!!!!!

Does your son have allergies? That might explain the high Eosinphils?


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## theresad

That's great news! So glad he's feeling good and most importantly hooray for beautiful lab work what a joyous update Dusty!!


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## Mr chicken

Hugs
Glad the humira is moving things in the right direction


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## Mehita

Happy Birthday!!


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## Sascot

Fantastic! Happy birthday to Matt


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## Maya142

Happy birthday Matt!! Hope Humira continues to work miracles!


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## Pilgrim

Happy Birthday to Matt. And wow isn't it amazing when our boys hit their 20's. This person who used to be a teenager is actually a great guy!


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## hawkeye

Happy Birthday Matt.  Is university in down there?


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## DustyKat

Thanks so much for the birthday and well wishes everyone.  

@Farmwife - He is prone to seasonal allergies and I have thought about the fact that he continues to have a snufflyness about him that has been present for some time now and perhaps this is what is feeding into the persistent elevated reading?? 

@hawkeye - Yes, university is in full swing. Second semester started 4 weeks ago. 

Dusty. xxx


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## Mr chicken

Dusty fwiw 
With Ds pollen season even when his allergies are under control
His eos bloods are always high ( except if he is on pred )
After pollen season they go back to normal

Allergist told us that was normal for atopic kids no biggie

Happy birthday to him !!!


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## Tesscorm

Great news that he's responding to humira so well!!  Lots of wishes that it continues for a very, very long time!

And, a very happy birthday to him as well!


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## kimmidwife

Happy birthday!!!! Glad to hear the humors is going well!!!


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## awmom

It's so good to hear that Matt is doing well.....does the heart good to hear them say they feel well and have the energy to play!!!  I hope the Humira continues to work as it seems to be doing so according to his lab results!


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## Jenn

Glad Humira seems to be working for him. My son had high eosinophils for about 6 months last year. The GI wasn't too concerned. He has seasonal allergies and his asthma was bothering him more than usual too. It's back to normal at the moment. Hope your son has a happy and healthy Golden year.


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## SupportiveMom

Late to the post, bUT happy Belated birthday! 22.. a fine year! Hope it is the best one yet.


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## DustyKat

Just back from the follow up with the consultant and the IBD nurse and they are happy with Matt's progress.  He has now been on Humira for one month. 

His flare up symptoms were never severe in the scheme of things so I think obvious in your face improvements will be hard to pick. Matt felt he didn’t really feel much different  but when the right questions were asked and he thought about it he has realised there have been changes for the better. I too have seen positive changes…Looks better (better colour in his face and the dark circles under his eyes are gone), less fatigued, better appetite and no pain. 

Next consult is the 24th September, that will be a more extensive follow up as it is the major review for his Humira approval. Hoping all continues to go well until then! 

Onwards and Upwards! :heart: 
Dusty. xxx


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## Clash

That's great C has a follow up the 18th. It will be 6 mos on humira for him. We too won't really have anything outward to gage since he's asymptomatic. He'll have repeat scope done in late Oct for that. But his rheumatologist was inclined to believe there was improvement on the joint side.

So hope Matt continues going strong with continued success!


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## Sascot

Great news. Hope it keeps going well


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## awmom

That is such good news!  I think sometimes it's difficult for them to see the changes in themselves and it is more obvious to us...especially the skin colour and appetite!  So glad he is doing better.


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## Tesscorm

So great that all is going well for him!!!  :thumright:


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## kimmidwife

Great news! Hope things continue along this way!!!


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## DustyKat

Finally back for an update. Things have been a tad all over the deck at our end, hence the absence. *sigh* 

Anyway, looking at the date of my last post means we have had three further GI consults since then with the last being the 18th February. As far as Matt goes things have been pretty stable. I have had niggly feelings that there has still been room for improvement but with nothing to base those feelings on. His Iron studies were trending toward iron deficiency anaemia in October and after Matt giving a flat out refusal to have an infusion, very odd for him, he did end up conceding to have his Ferinject infusion a couple of weeks later. This improved his numbers but didn’t really improve his feelings of fatigue. 

He has continued to cruise along and remains on Humira. I have been tossing up a couple theories over the past few months for my feelings and they include: Humira taking the extreme period of time to fully kick in. The stress of completing his thesis, Matt doesn’t really buy into this one but I think he may not fully appreciate the correlation between stress/fatigue/health. And finally the stress of having Sarah living at home, they do get on famously but it really is a case of polar opposites…Extroversion meets Introversion…and both at the extreme ends of the spectrum. 

However, last night he did say to me that he has felt better and more energised over the past couple of weeks. The things to change in that time are his thesis is completed, or close to it, and Sarah has moved out...to Japan! He is meant to move away to continue his studies at the end of this month but I just don’t see him meeting that deadline. 

His bloods are looking fab, all well within normal range. Even his lymphocytes have crept back into normal territory, the first time in years. 

I have continued with him having FC’s done. I know I stated previously in the thread that I was disappointed with the first FC result as they only provided a number of >300. I did end up sending an email to the company stating why I was displeased with the way they reported their results. His result two months after starting Humira, September last year, was 281 and his result at the end of last month was 24.  Interestingly, when I received the results last night his very first FC, done in May last year, now shows an actual numerical value: 2318 u/ug.

Dusty. xxx


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## CarolinAlaska

DustyKat said:


> I have continued with him having FC’s done. I know I stated previously in the thread that I was disappointed with the first FC result as they only provided a number of >300. I did end up sending an email to the company stating why I was displeased with the way they reported their results. His result two months after starting Humira, September last year, was 281 and his result at the end of last month was 24.  Interestingly, when I received the results last night his very first FC, done in May last year, now shows an actual numerical value: 2318 u/ug.
> 
> Dusty. xxx


What!  So glad they are doing so much better!


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## DougUte

Glad to hear Matt is doing well. Sounds like good news to me.


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## Maya142

Wow! What a drop in his FC. So glad he is doing so well!


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## kimmidwife

Glad to hear he is doing so well!


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## Sascot

Glad things have settled down, that FC result is fab. Glad things are going well. Sarah moved to Japan? Wow, my daughter would love to go to Japan!


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