Excessively tired/Crohns activity

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73monte
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Date Joined Mar 2007
Total Posts : 1494
   Posted 3/3/2008 9:12 AM (GMT -7)   
My daughter has pretty much been okay since diagnosed 1 year ago. I'm always worrying about her coming out of remission though. I really wish I could stop worrying about that. Everytime she's not feeling great, I tend to worry that it's the disease acting up. 
 
She has grown considerably in the past year, and entered puberty a couple of months ago. I understand that these are good signs. The one thing that concerns me though, is that she seems to excessively tired. Even considering that she's a young teen, she's still seems considerably tired. On the weekend , she sometimes sleeps 11 or 12 hours straight.
 
Does anyone know if this is something to be concerned about? Also, are their any definite signs that the Crohn's is recurring that would be cause for concern?
 
Thanks for any responses.   
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2008 10:29 AM (GMT -7)   
It is very common for teens to sleep alot.  But if you are overly concerned, see if her doc will check her blood levels and see if everything is okay.  I think all is okay, but it can't hurt to have a CBC ran to make sure she's not anemic or has low B12.

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Travisr6
Regular Member


Date Joined Feb 2005
Total Posts : 192
   Posted 3/3/2008 11:34 AM (GMT -7)   
Because of the malabsorption issues associated with CD, she could be lacking B12 and such.
As Nanners mentioned, have her dr. do a check.
It couldn't hurt to get a B12 shot monthly either...
-------------------------------------------------------------------------------------------------
Travis
Crohn's- Dx'd Sept.16th 2004

"Whatever tomorrow brings, I'll be there
With open arms and open eyes"


stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 3/3/2008 12:12 PM (GMT -7)   

Hi, I am Kitt,
I understand the worry, that old anticipatory worry.  I do it with my husband. the minute he gets a fever or abdominal pain I am sure we are head into a flare up of the Crohn's.  I have calmed down over the years and you will too.  Just be there for her. 
Take care of you too.


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


73monte
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Date Joined Mar 2007
Total Posts : 1494
   Posted 3/3/2008 3:40 PM (GMT -7)   
Thanks for the responses and suggestions. I've booked her an appointment with the Doctor as advised. Perhaps some bloodwork is in order.

My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 3/3/2008 3:42 PM (GMT -7)   
Starting puberty with chrones and being a teen ager all at once really seems like a good reason to be tired. I would have the doctor check her blood though because young girls can become anemic at puberty.

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/3/2008 4:59 PM (GMT -7)   
During periods of a flare, I am always very lethergic. This past weekend I slept 12 hours straight each day, which was a miracle as I have been waking up at night with loose bowel movements. By the time the weekend rolls around, I've exhausted all of my energy between work and this disease and I am TIRED and the weekend is my catch up time. I've had several rounds of blood work done lately and nothing out of the ordinary showed up to explain my lethargy. I think the tiredness comes with this disease.
Diagnosed in October, 2003 at age 31.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 3/7/2008 10:59 AM (GMT -7)   
My daughter was diagnosed when she was 12 so I know the concerns you have. I know that even though I'm in remission sometimes I could sleep forever. I just call them my down days. I'll go home from work, take a 3 hour nap and then go back to bed at my usual time. Some days I feel on top of the world. That has been my hardest adjustment. At least my children are older so I don't have to feel quilty about ignoring them when I'm tired.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/7/2008 11:50 AM (GMT -7)   
Even healthy teens need ALOT of sleep, they average anywhere from 12-14 hours, sounds like alot and it is but it's really only for a few years, it's because they're growing quickly into adulthood, afterall basically by the time you hit 18 you stop growing into adulthood.

It's completely normal and it's different with every teen too, some teens don't sleep that many hours (12-14 on average), it just varies from person to person, but it's totally normal, and because your daughter does have crohns, there is nothing wrong with getting it checked out...afterall, when a healthy teen sleeps that many hours, they generally feel very refreshed and can party or be active without feeling tired...when dealing with CD and being a teen, I'd imagine your poor kid never feels refreshed and that's a huge difference.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 3/7/2008 1:34 PM (GMT -7)   
My bloodwork is all normal and I still feel very tired...it really confuses me! I have a 19 year old and a 15 year old who do not have IBD or any other diseases. Given the opportunity, like on a week-end they both sleep over 12 hours! During the school week, they have to get up early, so I often think of it as "catch up" sleep. I would definitely get blood work for your daughter just to make sure everything is ok, but try not to worry too much. I tease my kids that they can try out for the Olympic sleeping team!!!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 3/7/2008 1:40 PM (GMT -7)   
<<<My bloodwork is all normal and I still feel very tired...it really confuses me! I have a 19 year old and a 15 year old who do not have IBD or any other diseases. Given the opportunity, like on a week-end they both sleep over 12 hours! During the school week, they have to get up early, so I often think of it as "catch up" sleep. I would definitely get blood work for your daughter just to make sure everything is ok, but try not to worry too much. I tease my kids that they can try out for the Olympic sleeping team!!!>>>
 
 
I hope it is just part of being a teenager, but I have booked an appt. for her next month. Thanks for responding.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Georgie123
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/3/2008 1:04 PM (GMT -7)   
Hi, iv recently been diagnosed with croins, and since have felt execivly tired and some days i cant get out of bed.

I noticed that you mentioned that your daughter is currently on pentasa, Well when i phoned up a croins help line and explained of my tiredness she told me that sometimes pentasa can make people execively tired, and she mentioned that people with croins can have stages where they feel low of energy.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/3/2008 6:18 PM (GMT -7)   
Hi Monte Just wanted to say I am so happy your daughter is growing and that sounds good. Some people here do seem to have some problems with there periods does she have bad cramping? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2688
   Posted 9/3/2008 8:58 PM (GMT -7)   
It is really normal for teens to sleep a lot. I remember doing that. However even when I'm in remission I'm fatigued. All my blood work can come back fine, and my doctor just feels it's part of having this. I realized just how tired all the time I am when I was on prednisone. The engery it gave me, made me feel like my old self again. Before needing that daily nap!

But I can totally relate with you on worrying about coming out of remission. That's common as well!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Just finished tapering off Prednisone *YEAH*, Asacol, Questran, Toprol XL (for high blood pressure).


Poohbear82
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/19/2009 11:49 PM (GMT -7)   
I have crohns and yes you should get her checked i slept that long before .. got off of work at 4 and didnt wake up until i went back i was 3 pints of blood short and needed a blood transfer so i would say she is bleeding and you are not over reacting because i was and still the same way and make sure she isn't lactose intolerant..



~MARK

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/20/2009 6:25 AM (GMT -7)   
How is her activity level otherwise?  Is she doing sports or dancing (some sort of physical fitness)?

Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


73monte
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Date Joined Mar 2007
Total Posts : 1494
   Posted 10/20/2009 11:56 AM (GMT -7)   
This is quite an old post, (1.5 yrs ago). She has seemingly recoverd for an abdominal abscess almost a year ago. Has been on Imuran since that time. Right now she seems to be doing quite well. She's a competitive figure skater, and has been doing quite well so far this year. 
 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/20/2009 3:17 PM (GMT -7)   
that is great to hear!
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


jsubeh
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/24/2011 5:42 AM (GMT -7)   
Hello, I am 30 yrs old and I was officially diagnosed with Crohn's Disease in June 2007. The first time I got very sick and hospitalized was February 2003 however, they didn't find the problems. I have currently been experiencing a flare up since September 2010 and getting increasingly worse. My specialist has suggested a resection surgery but the surgeon's are not 100% set on it. I have inflammation and ulcers in the small intestine... cat scans, colonoscopies, x-rays, etc have shown it. Now I'm so weak, tired, shaky, etc that I can't get out of bed!!! I lie here and feel like my body is still moving! I am so weak that I still here crying. Food will not stay in, if it does it hurts by cramping me. I have constant constant severe burning pains in my abdomen... a rash on my face. I don't know how much more I can take!!! I love my doctor and he's been doing so much. I actually just called his answering service about everything again. My ankles and knees are so sensitive that they hurt to touch! This is such a horrible way to live life and it's been going on and getting worse for months now. When will they do more or when will it stop. My options at this point are surgery.. remicade, humira or cimiza. Help... what do I do and what do I do to get the doctor's to realize that I know my body and can't take much more!!!!!
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