16 Year Old Daughter with Crohn's

[araceli]

hello all. First time in here writing but more than a year reading. My daughter is 16 and was diagnose 2 years ago.
she is on prednisone, asacol, nexium, flaxseed oil, aloe vera and 2 days ago start with remicade, Crohn's at terminal ileum. She does not have bad flare ups but now has perianal disease (anal fistulas). It took 6 months to diagnose due to no pain and going only 2 times or 3 to bathroom, also no blood in stools.

 

[Farmwife]

Hi and welcome.
So glad you decided to join and I'm sorry to hear about your girl.
I'm so glad she got a dx.
Some have bad symptoms from the start and still can't get a dx.
So has she had a bad flare in 2 years?
I also do alo vera juice but for Grace it doesn't work. Has she notice any relief from it?

 

[Catherine]

Welcome, I am the mother of 17 year old dx in january, also ileum disease.

Sarah symptoms are no classic, currently in technical clinic remission but on 30mg while they debate whether mri shows fistual in the ileum.

The parents on here are amazing.

 

[Sascot]

Welcome! I hope the Remicade works well for her and gets rid of the peri-anal fistulas. My son only had some stomach pain and fairly normal bm's, so took over a year to diagnose. He also is fine apart from a peri-anal fistula - our GI wants him on 6mp. Good luck!

 

[momoftwinboys]

:welcome::welcome:
Sorry to hear about your daughter.

My son is 11 and dx about a year ago. He had his 3rd Remicade infusion last week and also started Remicade due to a perianal fistula. His went away shortly after his first dose (knock on wood).

Hope your daughter responds well.

 

[araceli]

Hi aracelli and :welcome:

I'm so very sorry to hear about your daughter, bless her. :hug: I'm also sorry you had to find your way here but having said that it is a fab place for information, support and good laugh!

I hope the Remicade quickly brings the perianal disease under control. Is she feeling any relief with being on the Prednisone?

I hear you loud and clear about the diagnosis! It is one of my bug bears that those with ileal disease often face a long lead up to a diagnosis because they don't suffer with the so called 'classic' symptoms. My daughter was also diagnosed at 14 and she went undiagnosed for 18 months.

Good luck and welcome aboard!

Dusty. xxx

Thanks!
Well, since the day she had remicade she start going to the bathroom more often and loose, before she was fine, so I don't know what to think. Prednisone not working anymore, ESR very high. also high dose of asacol gives her chest pain. I read that is a very rare and serious side effect from asacol. Doctor did not know until I told him. :facepalm: Still learning whats good for her and whats not. :shifty-t:

 

[araceli]

Hi and welcome.
So glad you decided to join and I'm sorry to hear about your girl.
I'm so glad she got a dx.
Some have bad symptoms from the start and still can't get a dx.
So has she had a bad flare in 2 years?
I also do alo vera juice but for Grace it doesn't work. Has she notice any relief from it?

Hello! thanks for replying.::ysmile:
She was fine for a whole year. and then started going to bath more often, no more than 3 times a day, no pain and no blood. but I could see she was not fine in her eyes, started on prednisone since june 2012, got better on her belly but got perianal disease. I give her aloe and flax seed because they are good to reduce inflammation. even if helps a little bit is good. aloe first time in the morning with empty stomach, she likes it. (mango flavor) After first Remicade she got loose stools. she will have next dose in about 10 days, will see how it works.?????

 

[araceli]

Welcome, I am the mother of 17 year old dx in january, also ileum disease.

Sarah symptoms are no classic, currently in technical clinic remission but on 30mg while they debate whether mri shows fistual in the ileum.

The parents on here are amazing.

Hi! So happy she is on remission. Mri will show fistulas, but the radiologist will have to be very good, and the one who reads it, to have experience on those. I had hard time find one, and hard time with insurance to pay, but it was worth it. It's the only way to know since camera can not get in ileum completely. Hope she stays in remission forever.:medal1:

 

[upsetmom]

Welcome araceli.

I'm sorry your daughter is suffering .....:hug:

I'm curious to know what sort of chest pain she was having with asacol .
My daughter is on pentasa (I THINK IT'S THE SAME AS ASACOL) and about a month ago she was getting constant stabbing chest pain for a few weeks. I don't know if it was the pentasa or just a pulled muscle.

I hope things settle down for your daughter..

 

[crohnsinct]

Is she tapering the prednisone? I know when my daughter was on prednisone and starting Remicade when they tapered her prednisone loose bowels and blood started reappearing so we went back up on the prednisone and slowed the taper down. We went through that about 3 or 4 times before she was able to come off the prednisone without a reaction with her bowel movements.

We also use flax seed. Flax seed is very high in fiber. Maybe slow that down a bit until the bowel situation is resolved.

Just some thoughts...hope things get better for you.

 

[araceli]

:welcome::welcome:
Sorry to hear about your daughter.

My son is 11 and dx about a year ago. He had his 3rd Remicade infusion last week and also started Remicade due to a perianal fistula. His went away shortly after his first dose (knock on wood).

Hope your daughter responds well.

Hello. I am glad he responded well. Only things I noticed after first infusion, are red cheeks and more trips to the bathroom. So will see. :frown:

 

[araceli]

Is she tapering the prednisone? I know when my daughter was on prednisone and starting Remicade when they tapered her prednisone loose bowels and blood started reappearing so we went back up on the prednisone and slowed the taper down. We went through that about 3 or 4 times before she was able to come off the prednisone without a reaction with her bowel movements.

We also use flax seed. Flax seed is very high in fiber. Maybe slow that down a bit until the bowel situation is resolved.

Just some thoughts...hope things get better for you.

No, she is still on same dose prednisone, I will slow down on flax seed and see how she does. Thanks!

 

[araceli]

Welcome araceli.

I'm sorry your daughter is suffering .....:hug:

I'm curious to know what sort of chest pain she was having with asacol .
My daughter is on pentasa (I THINK IT'S THE SAME AS ASACOL) and about a month ago she was getting constant stabbing chest pain for a few weeks. I don't know if it was the pentasa or just a pulled muscle.

I hope things settle down for your daughter..

She started on 2 400mlg 3 times a day asacol, start having stabbing chest pain,(right in the middle) when it happened she had trouble breathing, as soon as Doc. lower the dose, It stop. So I am pretty sure was due to Asacol.

 

[upsetmom]

Thanks areceli
My daughter had the same problem only her pain was more to the left.
Shes back on pentasa now....so far no problems.

 

[MUMINGA]

First time here-my son (26 years old)diagnosed in late August after anal abscess with Crohn's- now has prostratitis. He is losing weight and goes to his local GA doctor for first follow up tomorrow after being on Pentasa and steroid since then. I am very sick with worry and wondering if we should insist that he go to Mayo Clinic or find a specialist in Atlanta area. I don't think he should have this prostrate problem if Pentasa and steroid were reducing inflammation or swelling based on what I happened to read in this forum. His doctor uses a physician's assistant to give us information but it just doesn't seem to be enough or specific.

 

[Farmwife]

Hi and welcome!

So sorry to hear about your son.

Yes, sick with worry is something I'm very skilled at also. A mom's job is NEVER over is it!

I can't answer many of your question but I know more will be along,
David and or DustyKat I'm sure will be able to help.

Hang in there mom.

 

[MUMINGA]

Thank you for your reply. Really wondering about further opinions and the Mayo clinic. Also want to know if it it best to have definitive Crohn's diagnosis ( via extensive blood test) Can treatment be specialized further?The urgent care doctor said the prostratitis was probably not related to the Crohn's.

 

[araceli]

First time here-my son (26 years old)diagnosed in late August after anal abscess with Crohn's- now has prostratitis. He is losing weight and goes to his local GA doctor for first follow up tomorrow after being on Pentasa and steroid since then. I am very sick with worry and wondering if we should insist that he go to Mayo Clinic or find a specialist in Atlanta area. I don't think he should have this prostrate problem if Pentasa and steroid were reducing inflammation or swelling based on what I happened to read in this forum. His doctor uses a physician's assistant to give us information but it just doesn't seem to be enough or specific.

Hello and welcome. Sorry you have to go thru this.
Sometimes medicines don't work as good or as fast as we would like. First time my daughter got sick, prednisone and asacol were great. Second time did not work that good. that was the reason she is on Remicade now. (she also has perianal disease).If you have the opportunity to go to a specialist, take it. If you think he is not getting better, INSIST< INSIST< INSIST. I hope he gets better soon.:hug:

 

[DustyKat]

Hi MUMINGA and :welcome:

I am very sorry to hear about your son...:hug:

If you are in any doubt whatsoever about the treatment your son is receiving and/or you have no faith in the doctor then seek a second opinion sooner rather than later.

Just some questions to start...

What tests were done to diagnose Crohn's?

Where is your son's disease located?

I assume a urinary tract infection has been ruled out as a cause for the prostatitis?

I do not agree that Crohn's can't cause prostatitis. If your son has active disease, and it sounds like he does, then any organ or structure in the body that the inflamed bowel overlies has the potential to also become inflamed. If he has disease in his ileum and/or anal region then these two areas lie very close to the prostate gland and could have the potential to create secondary inflammation there.

Also request copies of all test and blood results. Has he had bloods done recently for inflammatory markers (ESR & CRP)?

Good luck!
Dusty. xxx

(sorry rushing a tad as I am about to head out the door to work)

 

[DustyKat]

I do not agree that Crohn's can't cause prostatitis.

Back again! I just wanted to expand on that statement. My son had some queried urinary system issues last year and one of the things they wanted to rule out prostatitis. I did some searching for any correlation between Crohn's and prostatitis and did find a couple of articles that made reference to it. I can't for the life of me find them again though.

Dusty. xxx

 

[Sandie44]

hello all. First time in here writing but more than a year reading. My daughter is 16 and was diagnose 2 years ago.
she is on prednisone, asacol, nexium, flaxseed oil, aloe vera and 2 days ago start with remicade, Crohn's at terminal ileum. She does not have bad flare ups but now has perianal disease (anal fistulas). It took 6 months to diagnose due to no pain and going only 2 times or 3 to bathroom, also no blood in stools.

Hi there, i was just wondering if you have any support systems in place for your daughter that are off her age. My daughters friend has Crohn's disease and IBS but have not been able to locate a support group for teenagers. Could you reply to me on [email protected]. This would of a great help to this young lady xx

 

[kimmidwife]

Muminga,
Welcome, I just wanted to say I agree with a second opinion if you are not happy with the first. I have heard great things about the Mayo clinic and if there was one near us I would take my daughter there.

 

[Sandie44]

Hi there,
I am wondering if there are any teenagers around that would be willing to converse with another teenager who has Crohn's disease and IBS. She has no one her own age to talk to about the problems that she is going through. Can anyone help here.

Sandie

 

[Catherine]

Sandiee

Maybe start your own thread here with a little information about her. My 17 year old girl is busy trying not to think about crohn.

 

[my little penguin]

Sandie
There is a teen forum
So if she joins she could " talk" to other teens.
My son is only 9 so no help there.

 

[araceli]

Hi there,
I am wondering if there are any teenagers around that would be willing to converse with another teenager who has Crohn's disease and IBS. She has no one her own age to talk to about the problems that she is going through. Can anyone help here.

Sandie

I send you my daughter's e-mail at your e-mail. I don't know if you got it.
Let me know.

 

[Patricia56]

Crohn's and Colitis Foundation of America (CCFA) has a website exclusively for teens. It includes a chat room.

http://www.ucandcrohns.org/