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Crohn's Disease Forum » Parents of Kids with IBD » Son may have Crohn's...


06-19-2010, 09:47 PM   #1
tylersmom
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Son may have Crohn's...

Hello everyone..I am new to the forum and am looking for some insight/advice.

My son is 14yo and has had some bowel problems in the past..nothing major up until this past Nov 2009 when he started experiencing extreme lower abdominal pain. We ended up in the ER approx 4 times within a week(!)He had bloodwork, xrays and was diagnosed with pneumonia and told that that was what was causing his abdominal pain(?) He took his antibiotics for a week but the pain did not subside...back to the pediatrician who sends us to a GI who reccomends that if the pain continued to go back to the ER...at this point the Drs are starting to think it may be an abcessed appendix. Well, pain did not subside, we end up back at the ER where they do an ultrasound and see fluid around the appendix that shouldn't be there so they decide to take his appendix out..guess what..yup, appendix was fine. The surgeon also adds that he "did not see any signs of inflamation, so no need to worry about Crohn's disease."
So what is causing his pain?!?!? We end up at Childrens Hospital In Phil with a wonderful GI Dr who does more bloodwork (all normal) tests his stool (normal) and at first seems pretty sure that it is NOT Chron's as he doesn't have many symptoms other than extreme lower abdominal pain and all his test are normal...BUT thankfully does feel the need to do a colonoscopy, which they did the beginning of last week. I received a call this past Thursday that although the colonoscopy did not reveal any visual inflammation, the biopsy revealed that there IS inflammation in the ileatis (sic?) but they are not ready to diagnose him with Crohn's right now...he had another xray with contrast and we are waitng till monday to hopefully have the results of that.

I am relieved that he may finally have a reason for his pain...but very very sad that he may now have to deal with it for the rest of his life

I guess I don't understand why they won't diagnose him now...the did start him on Pentasa (to which he unfortunately had an allergic reaction and had to stop taking) but if there is inflammation isn't that indicative of Chrohn's? Or are there other causes of inflammation?

Thanks for reading this if you got this far! LOL!
I would appreciate any advice or information!
06-20-2010, 03:39 AM   #2
DustyKat
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Hi tylersmom and welcome to the forum.

I'm sorry I can't answer your questions but there are bound to others that will have a much better idea than me. I don't why the doctors are reluctant to make a diagnosis but unfortunately it doesn't seem that uncommon for many people. It's almost like it's let's rule out absolutely everything else first, that's not necessarily a bad thing but it is oh so frustrating particularly when your child is suffering.

In Roo's case all the tests she had in lead up to her diagnosis also came back grossly normal and I had to keep fighting and making demands to finally get the answers I was seeking.

I hope you get answers and soon. All the very best. Dusty.
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06-20-2010, 07:54 AM   #3
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Hi Tyler'smom welcome! Your son's ordeal sound exactly like mine to a T. It took a long time for a dx, a years tests and scopes, only my Gi believed in me. They took out my appendix too. What they dont realize is when there is inflammation in the Ileum, where do think the appendix is??? Right beside it! Inflammation markers sometimes don't even show, I have had Crohn symptoms since I was 15 but dx at 32. It crept on me, slowly.

You may have to be agressive with his docs, dont take no for an answer. Get a second opinion if you have to..I am assuming you are in the US? He is dealing with alot of pain and the longer it gets misdiagnosed the worse his flare will get. Pentasa is a very mild drug so is Entocort but better than Prednisone. Prednisone is great for short term but needs to be replaced with a longer term drug. So sorry you are both having to go thru this. I did, and computers didnt exist then, what I would give to have a community like this one, glad you found us, hope we can help you more. Please dont give up. Big hugs, and keep us updated! Hugs.
06-20-2010, 11:17 AM   #4
tylersmom
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Jettalady and Dusty..thank you for your kind words and encouragement
Yes, we live in South Jersey, about a 20 min drive from Childrens Hospital which is supposed to have one of the best GI depts in the country..

I will be hearing from them hopefully on Monday so I will keep you posted!
06-20-2010, 01:10 PM   #5
Keona
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Good luck Tylers Mom. Glad you found this forum - very supportive and someone most always has an answer to your questions and they listen to you!
I hope Tyler feels better soon and I know you have the strength to get through this! You sound like an awesome mom and very supportive!

Wendy
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06-20-2010, 01:38 PM   #6
tylersmom
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Keona... Thank you so much. Yes, this forum had been very informative and helpful (I've been lurking quite a bit before my first post
06-21-2010, 05:14 AM   #7
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Hi T's Mom, I'm glad you are here. There are several parents on here who know how this hurts you too. Let us know what you find out today. Good luck to Tyler and you.
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06-22-2010, 03:51 PM   #8
tylersmom
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I just spoke to the GI Dr treating my son and am sooo frustrated. Although he did have inflammation in the ileum they felt it was not severe enough to diagnose it as Crohn's...I should be relieved right?!! SO why do I feel so frustrated? I guess because there IS inflammation and I am soo afraid this is just going to get worse before it gets better.
They have put him back on Hyomax 2 pills up to five times a day as needed for pain relief. (which has not relieved his pain)

Anyone else have had an IBS diagnosis which turned out to be IBD?

Last edited by tylersmom; 06-22-2010 at 07:03 PM.
06-22-2010, 04:45 PM   #9
Astra
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Hi there
and welcome

sorry I've missed this thread!
Yes!!! I had a dx of IBS for 15 years!
I'm a mum too, and I would scream the place down if the docs were telling me BS like this!
I'm afraid you can't take no for an answer here, first he finds something, then he doesn't!! Your son is still in pain tho! and with no appropriate meds neither!
I would persist, or get a second opinion.
There is a lot of debate in a thread on here about the existence of IBS, and the word stress comes up a lot. stress seems to be a factor in IBS, but IMO what does a 14 yr old boy have to be be stressed about? mortgage? work? marriage?
have a read thro it
I wish you lots of luck, don't give up! and hope you stick around, let us know how you are getting on
lotsa luv
Joan xxx
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06-22-2010, 06:32 PM   #10
tylersmom
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ASTRA101..thank you for your support!
Yes, I have learned alot on this website, I am so glad I found it....so much support and information!
Yes, very frustrated by all this...because I see what he goes through and the Hyomax does not help at all

I will have to read through the posts concerning the IBS issue....

Last edited by tylersmom; 06-22-2010 at 07:03 PM.
06-23-2010, 12:26 AM   #11
Keona
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I agree with the 2nd opinion. If the Hyomax does't work than its not caused by spasms. I dont think that is a pain killer, I think it is an anti-spasmatic.
06-23-2010, 10:08 AM   #12
CDDad
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I'm so sorry your son is going through this. It sounds like they are really putting him through the wringer.

Does your son have the pain all the time? Or only after eating? It it relieved when he has a BM?

I was also just thinking that maybe minor inflamation in the ileum would not cause so much pain. I assume minor because it could not be seen on visual inspection. And if there was stricture or narrowing, they would have seen it. So maybe something else is going on here.

I hope you get a good answer form the docs soon.
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Last edited by CDDad; 06-23-2010 at 10:14 AM.
06-23-2010, 11:06 PM   #13
BLM
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Hi Tylersmom! And welcome...Im sorry your going thru this....I understand your frustation. I am newly diagnosed, well kinda, anyway, Tyler's story sounds like mine with the whole appendix and many times in the ER and NO answers. Hang in there...keep pushing for answers. For me, my Ileum would always inflame and cause serious bouts of pain, nausea, vomiting, diahrea, and fever....sometimes just severe pain. Docs treated me like I was a nut....after 15 years of this, earlier this year, someone decided to put me on Entocort EC, for Crohns in the Ileum....and its working!! I have never know what it was like to be pain free until I was put on Entocort EC. But until the meds started working Ive taken pain meds, like Percocet and dilaudid to get me thru. Now that the meds are working and inflamation is down, I dont have pain like I did...and life is finally getting back to normal. So hang in there, we all understand your frustration and Tylers pain. Keep us posted, and remember to stay strong~
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06-24-2010, 05:51 PM   #14
tylersmom
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thanks again everyone..
yes, his pain is daily off and on. It seems random but we haven't kept a real close eye on his eating habits and the pain...I guess he needs to start keeping a food diary. The xray did not show any narrowing or scarring so that's good. And yes, the inflammation is minor as they couldn't visualize it and I also wondered then why such severe pain??
06-24-2010, 06:58 PM   #15
DustyKat
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Hi tylersmom,

I think keeping a diary is a good idea, not only for food but also for his physical symptoms -

pain - time of onset, where is it located, duration, what is it like, severity on a scale from 1 - 10 (1 being the lowest), does the pain stop him from doing things (in other words is he curled up in pain and can't walk etc)

relief - did you try anything that relieved the pain? Was there anything you tried that didn't relieve the pain?

other symptoms - was there anything else accompanying the abdo pain - headache, vomiting, fever, joint aches and so on.

I have been there and know how easy it is to forget the progression of things as it can all become a blur especially when you are in the ER. The diary then becomes an accurate record of your son's history and difficult for the doctors refute.

Do you think it is worth seeking a second opinion?

Take care,
Dusty
06-24-2010, 07:14 PM   #16
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Hi tylersmom,

I think keeping a diary is a good idea, not only for food but also for his physical symptoms -

pain - time of onset, where is it located, duration, what is it like, severity on a scale from 1 - 10 (1 being the lowest), does the pain stop him from doing things (in other words is he curled up in pain and can't walk etc)

relief - did you try anything that relieved the pain? Was there anything you tried that didn't relieve the pain?

other symptoms - was there anything else accompanying the abdo pain - headache, vomiting, fever, joint aches and so on.

y
This is some of the best advice I have seen on here to date, especially for those of us who are rookies when dealing with doctors. Thanks Dusty.
06-24-2010, 07:44 PM   #17
tylersmom
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Dusty..yes, excellent advice! Thanks so much!

He has a follow up appt the beginning of August with his GI doc. I will be sure to bring his food diary and pain diary and go from there. At this point I am not seeking a second opinion just yet...I will wait and see how that appt goes.
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