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Hello --

I am the mother of a 14 year old boy who has been diagnosed with Crohn's in the last year.  While his Crohn's is managed with medication and he is NOT having a flare-up, he is experiencing extreme fatigue and is unable to participate in his usual activities as a result -- swimming, lacrosse, etc.  Is such extreme fatigue typical?  If so, any advice on how to overcome it? How long is the duration typically?

Thank you very much...

Eden Durbin

 Reply posted for Eden Durbin.

After getting Diagnosed with UC in 2008 I was sleeping something like 18 hours a day. It turned out that I was extremely anemic and ended up in 4 months of iv iron. I now take 3 iron pills a day along with B12s and its helped a lot. I don't play any sports, but I take marital arts and am actor/singer  and my tiredness hasn't been a problem for many months. 

 Reply posted for Eden Durbin.

All of this is very helpful..doctors have really pushed water and salt -- which we are starting to do -- as you say, hard with a teenager, but he is getting there...

Also, thank you to the young man who responded..my son read your response and found it very interesting...he says he can do tennis better than soccer or lacrosse (not as intense of cardio workout), so this may be what it is for us...still sports, but less hard-core cardio workouts.  This would be ok, because he still would feel engaged and healthy, but just not warn out.

I don't think the fatigue is connected to Zolof -- he has been on that for awhile, but will look into that...

Thank you all very much..

In the end, we are going to stop treating this like he is "broken and needs to be fixed" (which is the mode we have been in for a year) , but we are now learning to manage this disease and some days we will be tired, but other less-so..but we are still the same person we were, not "broken" and in need of "fixing."  I hope this new mind set helps.

Thanks...

Eden

 Reply posted for Eden Durbin.

I'm sorry you are going through this...I have a 13 yr old daughter and it is the worst thing in the world to see her lethargic and miserable. It sounds like you've got all the blood tests covered. How long has he been on Zoloft?  That could be making him tired. Also make sure he is not dehydrated.  I know it can be hard to get teenagers to do the things they don't want to do...I got to the point where I gave my daughter $1 for every bottle of water she drank   sometimes you just do what you have to do!  Best wishes to you

 Reply posted for Eden Durbin.

my name is greg and i was diagnosed with crohns when i was young as well, 12. i had to stop playing soccer because of fatigue and crohns related injuries. for a while i was very fatigued and tired which was according to my doctor because of iron deficiency, anemia. i took iron pills for a while and that helped. i have never played soccer again, but i now do other sports such as rock climbing and weight lifting. both are intense but lack intense cardio

 Reply posted for Eden Durbin.

All good advice..we are working on diet and small meals seems to help best...also switching everyone in the family over to whole wheat and grains - nothing processed and no white sugar or flour, etc...so at least when he does eat (sometimes an issue), he is getting really good stuff into his body..
I will double check into B12 and make sure we shouldn't be doing more with that...

Thank you all again...very much...

Eden

 Reply posted for Eden Durbin.

Has the iron count risen back up? Sometimes supplements are not enough. I had to get IV iron to boost back up my hemoglobin count, and I am now on just iron pills.  Do any of the medications list fatigue as a side-effect? Maybe if you switched to something, and he started feeling fatigued after he took it for awhile? Just some ideas. I hope it helps!

 Reply posted for Eden Durbin.

It seems that you are doing all of the obvious w/bloodwork, scopes, etc.  The only other thing I can think of is his diet.   My daughter does best when she eats smaller (more frequent) meals, and "safe" snacks in-between.   Maybe investigating into his diet would be a logical next step??  After all, we have to fuel our bodies for energy.   

Lizzies Mom

 Reply posted for Eden Durbin.

Thank you for your advice..we have been to two doctors besides our GI, had scads of blood work done -- testing for Vitamin D, iron, mono, lupus, lyme, etc. Was low on D and iron, so used supplements for 6 months, but didn't help much. Then did colonoscopy, endoscopy -- but nothing turned up.  So sad to watch him always fight being tired...and he is already on Zoloft, so it isn't depression either...don't know where else to turn..

 Reply posted for Eden Durbin.

I would place a call to his doc.   Perhaps some bloodwork may shed light on the fatigue.  My daughter at one point was low on Vit. D and she too was tired.  It may also be an iron deficiency or something else (blood levels,etc.)??  

Hope you have some luck.

Lizzies Mom