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Crohn's Disease Forum » Parents of Kids with IBD » Update on Dusty's Matt


 
11-25-2010, 08:53 PM   #1
Dexky
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Update on Dusty's Matt

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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Last edited by DustyKat; 01-04-2015 at 12:04 AM.
11-25-2010, 10:25 PM   #2
Entchen
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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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11-26-2010, 03:50 AM   #3
Dras
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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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11-26-2010, 06:19 AM   #4
Dexky
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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.
11-26-2010, 11:53 AM   #5
Manzyb
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Thinking of you Dusty!!!!

Thanks for the updates, Mark. Keeping her and her family in my prayers.
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11-26-2010, 12:57 PM   #6
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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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11-26-2010, 01:10 PM   #7
Dallies
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I'm here for you Dusty. Love ya xxxxxxxxx
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11-26-2010, 01:20 PM   #8
DustyKat
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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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11-26-2010, 01:24 PM   #9
Welsh-bird
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Hang on in there Dusty (I know easier said than done!),
Sending a BIG virtual hug to you,
Andrea xx
11-26-2010, 02:55 PM   #10
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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
11-26-2010, 07:30 PM   #11
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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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11-27-2010, 03:08 AM   #12
Rebecca85
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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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11-27-2010, 11:29 AM   #13
Cat-a-Tonic
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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.
11-27-2010, 03:03 PM   #14
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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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11-27-2010, 05:50 PM   #15
BLM
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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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11-28-2010, 06:32 PM   #16
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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,
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11-28-2010, 08:38 PM   #17
crohnicaly stinky
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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!
11-29-2010, 08:16 PM   #18
Manzyb
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Still thinking of you,, Dusty!! I hope your son is doing better.
11-29-2010, 08:35 PM   #19
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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.
11-29-2010, 09:04 PM   #20
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.... 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"......


....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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12-03-2010, 03:11 AM   #21
DustyKat
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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
12-03-2010, 05:18 AM   #22
DustyKat
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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,
Dusty
12-03-2010, 05:30 AM   #23
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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.
12-03-2010, 05:41 AM   #24
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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
12-03-2010, 05:43 AM   #25
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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.
12-03-2010, 06:21 AM   #26
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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.
12-03-2010, 06:22 AM   #27
DustyKat
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@ 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.

Last edited by DustyKat; 12-03-2010 at 06:25 AM.
12-03-2010, 07:34 AM   #28
georgiegirl
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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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12-03-2010, 07:42 AM   #29
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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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12-03-2010, 07:42 AM   #30
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Dusty:
You are one amazing mom...hang in there.
xoxo
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