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06-03-2011, 06:20 AM   #61
DustyKat
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I hear ya T...

I have said, on more than one occasion, that I truly feel that way Sarah presented masked the severity of her symptoms. Of course the normal test results only exacerbated that illusion. Sarah didn't complain, when asked she more often than not said she was okay, she didn't make a fuss and her pain, even when her bowel had ruptured, never exceeded a 7. I think this was the most heartbreaking thing to me, had she become so use to living with pain that it became a normal part part of life and nothing be concerned about. I believe it had.

Have a fab time with your sister and gorgeous kids hun, you so deserve it, you all do!

Loads of luck with JJ's appointment! I hope all goes well and you get solid answers!

Much love,
Dusty. xxxxxxxx
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06-03-2011, 04:11 PM   #62
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Ahhhh !!! FINALLY !! A doctor who is not afraid to just give a solid answer ! AMEN!!

The dermatologist appointment took all of 10 mins and we were out of there.
I gave him copy of all the recent blood work done on JJ..he reviewed it...looked at JJ's nails and the patch on his leg and said...Psoriasis.
I said are you positive?
He says, oh yes...his blood test PROVE it IS auto-immune disease and sometimes this is exactly how it starts, which is basically a pre-cursor to what's to come later.
Bingo. Done. Prescription written for the patch on the leg and we left.
He is calling both the pediatrician and the pediatric GI to let them know.

Now what was so damn hard about that !
Whew!....and......NEXT ! LOL
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06-03-2011, 05:08 PM   #63
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That is so fab T! Well not fab that he has...well you know what I mean!

YAY...for solid answers and action! Yeah, what is so hard about that?

Much love,
Dusty. xxxxxxxx
06-03-2011, 07:08 PM   #64
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He is calling both the pediatrician and the pediatric GI to let them know.

Now what was so damn hard about that !
Whew!....and......NEXT ! LOL
I hope he makes that GI feel about 2 feet tall!!! Way to go T!!!
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06-04-2011, 07:51 PM   #65
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That is terrifying. My daughter was diagnosed with psoriasis of the scalp when she was 6. She had a huge bald spot and thick scales. Once we treated it, it pretty much went away but goes in a cycle with occasional flares. Hmmm, sounds familiar. She has no other signs that I can see, but now, I will watch a little more closely. She did say something to me about cramps the other day, but she thought it was her monthly cycle. I know that psoriasis and Crohn's are auto immune but I just never put it together till now.
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06-07-2011, 06:46 PM   #66
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Danny's GI appointment went well today. His doctor is very understanding, sympathetic and supportive. He thought that trying pancreatic enzymes was a good idea (many CF kids need this) and wrote a script, gave Danny a B12 shot to see if that helps with his fatigue, and ordered some stool studies that include parasites that have not been tested. He did not think that it was time for a repeat colonoscopy yet. So we will give this a few weeks and call him back. I will ask about other imaging (MRI) then ... I forgot to bring this up today. He still thinks that Danny has something that is beyond current medicine's ability to detect ... but I like that much better than "if it is not IBD then it is IBS". He does hope that this will just go away as mysteriously as it came and that he has seen that be the case in a few people he knows.
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06-07-2011, 07:17 PM   #67
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I'm so glad to hear that you like the GI doc Jeanne
That's so important!
Hopefully now you are one step closer to getting some answers!
I'll have my fingers crossed that everything disappears mysteriously for your guy! We can dream!
06-08-2011, 03:39 AM   #68
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Oh Jeanne, this is so great to hear. There truly is nothing better than being listened to and having your concerns validated. And like you say...far better than...hmmm not sure, must be IBS!

I will be wishing with all my might hun that this does indeed become just a faded memory, how fab would that be! In the meantime I will be thinking about those tests and looking for your updates...



Much love,
Dusty. xxxxxxxx
06-08-2011, 05:30 AM   #69
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@Jeanne, I'm in the "hope it all just disappears camp" too!! Glad this new guy is serious!!

@Rachel, how old is your daughter? I hope you have no further reason to keep your radar up about her!!
06-08-2011, 03:49 PM   #70
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I received the biopsy results from JJ's upper end and colonoscopy today.
In short:
Benign small bowel
Mild Chronic Inflammation in Gastroesophageal junction biopsy, mid esophagus biopsy, and gastric biopsy.
No evidence of IBD or Microscopic Colitis in terminal ileum, cecum, left colon, or rectum.

Drs opinion and orders ?? .... take some prilosec for 2 weeks .

Yep..that's it....dismissed !!


Austin is scheduled for a colonoscopy and upper end on the 20th. She (the doc) basically acted like it's a waste of her time and said the radiologist was "fishing" for CD when doing his SBFT/Upper GI.
Radiologist findings on test:
There is mild rugal fold thickening without appreciable nodularity or distinct ulcer crater.
**Impressions**:
1.Upper GI findings most compatible with mild, nonspecific gastritis.
2. Subtle findings of the terminal ileum but fairly convincing for slight narrowing and mild mural nodularity.

Ultrasound results:

**Impressions**
Hepatomegaly (enlarged liver)

I'm a bit pissed off and at a loss today...oh well...such is the life of CD and trying to diagnose CD I have learned (the hard way). I'm used to the hard way though, and this doctor, nor any others, will be chasing me off.
Even after her "blow off attitude" today, as she was walking out of the room, she turned to Austin and said...I want you to understand something very serious, even if your tests on the 20th come back perfectly normal, this DOES NOT put you in the clear. If you start feeling sick again a few months down the road, or whenever, you HAVE to take it seriously and get more tests done because you are at a VERY HIGH risk of having CD !
WTF ? She gives me a lackadaisical attitude and scares the crap out of my son! ayi yi yi....I know...run run run! Trust me...I'm putting my shoes on!
06-08-2011, 08:39 PM   #71
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T, I don't usually condone violence but I think that B needs a good old-fashioned ass whoopin'!!! Probably not, but I can dream can't I!!
06-09-2011, 02:40 AM   #72
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So why does JJ have reflux? Not exactly a normal phenomena for a kid. Plus it stills leaves on awful lot of small bowel that hasn't been visualised.

Hmmm, obviously the radiologist was having a slow day so had plenty of time to actually go fishing. Did she say anything about the enlarged liver? Or was that caught and bagged on another fishing trip!

The woman is a deadset wanker. Thank god you've got her measure T and know exactly what to do with it...

T! You're doing a brilliant job!

Much love...
Dusty. xxxxxxxx
06-09-2011, 11:45 AM   #73
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My thoughts exactly Dusty...why is it "ok" that my 13 year old son has heartburn so bad that he has his own supply of antacids and a favorite flavor? Hmm....she says "Oh everyone has an inflamed stomach?" (yes, she seriously said that !)
Argghhh...I hate this lady!

And Austin's liver she attributes to the CMV infection (MONO), but that's kind of idiotic to me because if it's just an old infection that is reactivated then why did he wake up this morning (a month AFTER "reactivation") with a lymph node swollen in his neck??

Dex, I'm not much for violence either but it was all I could do to hold back yesterday!!

Edit: BTW...she saw NOTHING with her own eyes during the scopes...and came out saying EVERYTHING looked great and said no meds needed! Then the stomach and esophagus biopsy's came back all showing mild CHRONIC inflammation. Not Acute...Chronic ! This lady is one dumb B for sure !
My husband is pissed off and says she's border lining on malpractice..

Last edited by Crohn's Mom; 06-09-2011 at 12:08 PM.
06-09-2011, 06:14 PM   #74
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Holy guacamole T!!! This just gets worse and worse!!!

I hope you're there yesterday! Yikes!

Much love,
Dusty. xxxxxxxx
06-11-2011, 12:45 PM   #75
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I'm probably over reacting but my little zach has been showing signs off and on for his entire life. Right now he's good, occasional diarreah and vometting but probably not much more than any other normal child. I'll go through his history though
10/3/2006- bundle of joy was born
11/3/2006- blood spots in his stool...gradually getting worse throughout the night. Taken to urgent care, then transferred to the ER. Was told that it is blood, told he can't digest milk protien changed from breast feeding to allementum
11/3/2006-when he started on table foods
Constantly throwing up formula, can't keep it down
10/3/2008- Begins crying in pain holding his stomache at random times during the day. Diarreah becomes presant and is LIQUID and is black, switch from milk whenever we go out to juice
8/2009-I become symptomatic
8/2010- I am diagnosed with crohns

He's shown some signs of having crohns or whatever but it also seems to lessen when we change to lactose free things. So perhaps it is a lactose allergy, but it's always in the back of my mind. Perhaps I am just a worrier lol
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06-11-2011, 03:26 PM   #76
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You're not a worrier Melissa, just a normal mom!! I hope it is just food allergies and you are able to pinpoint the problems! Good luck!
06-11-2011, 07:41 PM   #77
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Hi Melissa,

Awwww, join the club hun! We are all worriers here!

Do you keep a diary of Zach's symptoms? If not have a look at the suggestions we have in the wiki. It is so easy to forget the finer details when you are dealing with things day in and day out. A diary just helps to keep it all together...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Have you had any allergy testing done? Maybe that would be a good starting point. Start with the less invasive things like blood tests, allergy tests and stool samples and go from there if need be.

I sure hope it turns out to be something simple and easily treated. Good luck hun and keep us posted!

Much love,
Dusty. xxx
06-12-2011, 01:11 AM   #78
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Overreacting ? On this forum? I don't think that is possible!! LOL

Seriously, my middle son had the same reaction and symptoms to Allemumentum! (he is 16 now). This is the exact reason I have started this thread

I don't think we're over reacting necessarily, I think we are just so in tune with our kiddos that we can't help but think the things we do !!

It's a fine line between watching and waiting on the symptoms they do have, and over reacting on the ones we "think" they do! I always tell myself that it's better to over react than to under react !!

Keep a diary mom and don't disregard his symptoms just because you think you are over reacting !!

much love,
~T~
06-19-2011, 02:31 PM   #79
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I think Austin may be as brave (or dumb) as they come! LOL Even JJ said he's crazy!
He is prepping for his colonoscopy today, for tomorrow, and he decided to go hang out at the mall for a while! I tried to warn him ....

hahaha...gotta love these kids I tell ya !
06-19-2011, 03:27 PM   #80
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Oh okay, no offence T but is he blonde?

Ah, nothing like a 16 year old that thinks they're invincible! Oh wait, that's all 16 year olds!

I hope all goes well tomorrow hun. I will be thinking about you and Austin...



Much love,
Dusty. xxxxxxxx
06-19-2011, 04:10 PM   #81
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As a matter of fact Dusty.....LOL

I guess he was wiser than I 'cause he did just fine...and now he's outside playin some bball! The "kids" version of prep is really soo much easier on them ! Thank goodness !!

I feel like a bit of an ass today tho...I didn't realize when we scheduled the appt. that it was the day after fathers day; so of course my husband gets his choice of what I cook...and he requested my famous home made lasagna ! Poor Austin will be having his choice of orange or green jello served with a side of chicken broth ! OOPS !
06-19-2011, 06:40 PM   #82
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Hey T, wasn't Austin the one having the four day prep?? Couldn't be much left by now, I'd think Good luck tomorrow!!
06-19-2011, 09:17 PM   #83
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Good luck to Austin tomorrow! He sure is a brave one! Hang in there Mom!
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*Mike (22) 5/2009 emergency surgery IBS dx
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06-20-2011, 07:58 AM   #84
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Austin is all done with his upper end/colonoscopy and pulled through just fine! .. And mommy didn't even come home pissed off today! LOL
That lovely GI doc wasn't even a cocky, insensitive, jerk either !
When it was over she actually came into the waiting room and got me herself (which scared the crap out of me quite frankly!) But, Austin was still asleep so I guess she decided to talk before he woke up.
His colon is clean and looks good.
She said there is no narrowing as it showed on the SBFT, but there are "nodules" there in the terminal ileum that she biopsied, (we have pictures of them) but also said that she believes they are "normal".
His stomach however had quite a few mild ulcers and is red and mildly inflamed, (pictures of this as well)which again she said were "normal" (I personally think she likes that word way too much and uses it too often!). She says, Oh anyone can get those from simple things like drinking too much soda (he doesn't drink ANY soda) or from taking advil/ibuprofen (he is HIGHLY allergic)! I gave her those responses as she was saying that and she just says "oh really?, well it can happen from antibiotics, or any meds" (he takes NOTHING)
Anyhow, she took a lot of biopsies she said but expects them to be ...yep..."normal" (whatever !)
Then she proceeded to tell me that we will wait on the biopsy to "treat" him because we want to treat the problem and not him.
Well....what are we going to be treating if he's so normal ?!?!?! God I hate this woman!
I think she suspects the biopsies will be showing that he's not so "normal", but that's just my instincts because I have known her and how she behaves and responds to things for 9 years now. Probably why she was oh so extra nice to me today...a bit humbled maybe ?? hmmmm.....

So Austin is home now and sleeping away. He enjoyed the anesthesia a bit too much and kept asking if he could have some for home 'cause that stuff was way too cool! LOL what a character !
06-20-2011, 02:54 PM   #85
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T I am glad you are back home safe & sound! Oh & so totally NORMAL! WTF! Sorry but I will be insane on your behalf!!!! She is such a syco Doc! Look I like you & everyone else hope it all comes out good! But you would not be putting your child through ALL this just for the kicks! He is not feeling well & is having pain/problems ect. There seems to be evidence in his tummy! Yeah the biop hasn't come back yet as to what conclusively but come on Doc nothing???!!!! As you know her so well (too bad) at least you see her snake oil tactics for how she is acting!
Sorry I had too vent if not for you for the injustice that you can't at least have a 1/2 decent Peds GI!

T Big HUGssss!!! I hope you get answers soon. Julz
06-20-2011, 03:09 PM   #86
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Yeah, I don't think there's anything normal about a 16 yr old having several stomach ulcers (mild or otherwise)! I guess waiting on the biops is a normal procedure though. Just get the right answers!
06-20-2011, 03:29 PM   #87
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wow.. your story sounds so familiar to me.. I hope you get some answers so the relief can follow. All the Ped GI docs seem to think everything is normal, or wait they are to young for such a thing....
Good luck
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06-20-2011, 04:40 PM   #88
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Julz you can come here and go off on her any time for me ! I just can't seem to bring myself to do that just yet...and trust me I am capable !

I was going over the diagram she gave me of where she took biopsies from and this time (unlike with the other 2 kids) she made notes on the sheet. I think she accidentally gave me her copy because it has all of Austin's personal info on it as well...looks "official". Anyhow, she circled all the places she took biopsies which consists of the esophagus, stomach (9 gastric erosions/tiny ulcers), duodenum, descending colon, ileum, cecum, and rectum <the last three parts all had nodules> and she noted "lymphnodular hyperplasia" (LNH) and (NML ??) I don't know what NML stands for ?? mild something maybe ?? anyone have a clue ? LOL.

I can't wait for the biopsies to come in that's for sure !

Thanks gypsi...I've been following your thread and you sure have your hands full! How did your little one's tests go today ?? Any luck ?
06-20-2011, 09:19 PM   #89
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Hey T,

Good to hear all went hun!

Hmph, for a doc that likes the word normal it's a shame she isn't normal herself! And I'm not telling you anything by saying what she visualised in Austin's stomach isn't normal at any age. I don't know what the NML stands for but since she said the colon was clean except for nodules maybe it stands for Nil Mucosal Lesions??

I hope you get solid answers from the biopsies mate...I hope they're not like Matt's...! If they are then keep pushing hun 'cause something sure ain't right! Fingers and toes and everything else crossed!

Much love,
Dusty. xxxxxxxx
06-22-2011, 02:43 PM   #90
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My day couldn't get any better if someone paid me right now !!

Gab's IBD nurse just returned my call to see if she can start her Cimzia back again this week (yes she can!) and while I had her on the phone I asked if she had a few minutes for some questions and if Gab's doctor was accepting any new patients, and if he would accept a 16 year old. She said it depended on the case and why. I explained to her Austin's situation, and my complete disappointment in his doctor, told her of all the tests he has had done, what was found, and that we're waiting on biopsy results, and the pediatric doctor's lack of concern (to say the least) at the narrowing, ulcers, inflammation, mouth sores, sleeping, and nodules throughout his ileum and colon. She kept saying "oh boy, oh boy", and "are you kidding me?" (in response to the doctor saying he's normal!), etc...
Sooo....she requested that I get every bit of current records together of Austin's, and all test results and to bring them all with me to Gab's next appointment (July 12th) and she will get him scheduled in immediately !!!
I AM SOOOO HAPPY !! I don't feel like I am "fishing" any longer or over reacting !!
I told her straight up that this is exactly how Gabrielle started and was ignored by the same doctor...I so don't want Austin to have this, but I want someone to PROVE to me that it's not Crohn's! She absolutely agreed and can not believe the lack of concern from the ped. GI !
Ahh....I think I'm crying tears of joy right now! I have been pretty sad, and questioning my self over and over that maybe, just maybe, I am reaching for something that just isn't there out of fear; well deserved fear, but fear none the less.
Whoo hooo !! I have hope now that he won't end up silently suffering for years like his sister ! And also, I feel like once I get his foot in the door with Gab's doctor, then maybe just maybe, he will agree to see JJ too ! That may be pushing it a bit since JJ is only 13, but it won't hurt a thing to try. If nothing else, maybe he will have a great recommendation for someone else to take him to.

I hope everyone's having an amazing day like I am now !!
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