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04-18-2013, 10:34 PM   #1
Pattycakes
 
Join Date: Feb 2013
Location: Morristown, New Jersey
Tired of the tired

My 16 year old son was diagnosed with mild Crohns Disease in November. He is on Pentasa, Flagyl, and for the past 4 weeks, Methotrexate. Some of his more bothersome GI annoyances are less than they were. He is extremely fatigued though and that isn't changing. How long does that take to go away? He is an athlete, and the fatigue is cutting into his performance, but I am more concerned that it is impacting his school work. Can anyone tell me if that will change? If the inflammation goes away, will his energy return?
04-18-2013, 10:59 PM   #2
awmom
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Join Date: Sep 2012
Location: College Station, Texas
Yes, his energy will return once the inflammation is under control. When they first diagnosed my son fatigue was one of his main complaints ( much more so than gut issues). Inflammation takes a lot of energy for the body to deal with.....my son was also very anemic. Staying awake in school was a huge struggle for him during this time....it was painful to see how tired he was. Once these problems were taken to a better level he started to have more energy. I do believe it took close a year mainly because of the way his meds were handled. Apparently the meds are doing something if you son's GI issues are improving. Are his labs better? I'm not sure if methotrexate has fatigue as a side effect, but if it does, that also might improve with time. I sure hope he begins to feel like his old self soon!
04-18-2013, 11:04 PM   #3
Catherine
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15 months on from dx my 17 year old swimmer is just starting to PB her times from over 2 year ago.

It does time but look at hemoglobin, iron, b12, folate levels. As these levels started to improve for Sarah so did her energy levels.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-18-2013, 11:12 PM   #4
bear831
 
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Join Date: Apr 2013
Location: Bloomington, Indiana
I used to be a competitive swimmer before my diagnosis of Crohnís Disease back in 2009, I am now 18 and while I havenít resumed my swimming it was not entirely the fault of the Crohnís (I also have a chronic pain issue), I can say from experience that fatigue comes with the disease. This does not mean that he will not get better as the meds continue to take effect, but I would be surprised if his energy levels returned to where they were. Even after being put on meds that helped considerably I still continued to have GI issues that just sucked the energy out of me.

Even if his symptoms are improved it doesnít mean that he is doing great. The GI issues could also be contributing to slight malnutrition; when I am having issues I have absolutely no desire for food or any sort of physical activity. Experiencing a flare can feel debilitating. Even after the roughest part of the flare is over he probably still feels exhausted and disinterested in metal task of homework. As his inflammation goes down he will feel better and have a larger amount of energy.

From my experience I will leave you with this last bit of advice: support and understanding from my family has definitely helped me get through the worst of the disease and it can be hard to function even without the pressures of getting good grades and excelling at sports; this is not to say they are out of reach. Understanding from my parents through the early parts of the disease helped me focus on my health and then academics second. By taking this time to understand my own limitations I was able to pull my academics together and go from a C average during my freshman year to holding a 4.0 GPA every semester after my sophomore year (which was a B average).
04-19-2013, 02:54 AM   #5
Sascot
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This is an issue we are also dealing with at the moment. My son has no GI symptoms at the moment - just the tiredness (and a fistula which is causing no issues). We are on week 11 of 6mp and if anything it seems worse - but then a hormonal teenage boy can be tired too.
Has your son had his iron levels checked. My son's iron levels are very low and he takes a supplement every day (if I forget - his levels dip again). I think that contributes to the tiredness. My son plays football and has missed quite a few training sessions over the last few months.
I can only assume if you have full remission that these things improve - I hope both our boys will get there soon.
04-19-2013, 09:17 AM   #6
Tesscorm
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Welcome to the forum!

I really encourage you to try supplemental enteral nutrition (EN). Fatigue was definitely one of my son's symptoms prior to diagnosis but, even with continued inflammation (but no obvious symptoms), fatigue has only bothered him once in a while since diagnosis. (My son is also very involved in sports.) His maintenance treatment since July 2011 was only supplemental EN. The EN formula provides him with 1500 calories (and most of the necessary nutrition) per day, 5 days per week. (He very recently began remicade as there continued to be inflammation but will continue with EN as well.)

I do believe that the EN has kept his nutritional needs at a good level and this may have helped fight off fatigue and other symptoms. In my son's case, he ingests the formula overnight through an NG tube and eats a regular diet during the day. However, there are various shakes that can be taken orally, ie Peptamin, Boost, Ensure.

Many kids on this forum use supplemental EN together with their maintenance meds.

However, I do believe methotrexate can cause some fatigue as a side effect. I don't have experience with mtx but I believe folate is taken with mtx (not at the same time!) and it may be to help reduce the fatigue??? But, I'm not sure...

Is he on weekly shots? Is it possible to change the schedule of the day of his shot? Perhaps if he is most fatigued following the shot, a change in day would alleviate some of the impact on his lifestyle.

I'm sorry it's your son's illness that brought you here but glad you found this forum. Lots of great members and parents with tons of advice!

Good luck!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-19-2013, 10:02 AM   #7
Pattycakes
 
Join Date: Feb 2013
Location: Morristown, New Jersey
Thanks. This is very helpful insight. It gives me encouragement. Since my son is in his junior year of high school and has ambitions of rowing in college, the Crohns diagnosis could no have happened at a worse time. He pushes himself physically in order to get to where he was last spring. The more he falls short of his goals, the more he pushes himself, the more tired he becomes. Vicious cycle. Hearing that once the inflammation subsides, he will feel better, is comforting. His red blood levels are at or just below the range. His doc feels that is fine. No need for extra iron. He eats high protein diet. He was first diagnosed as Celiac, which turned out to be wrong, but he is still avoiding gluten in large amounts. I worry that he isn't taking in enough calories given his workout regimen. I do think the secret is in the food, but I just am not getting that right.
04-19-2013, 04:14 PM   #8
ChampsMom
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My son was diagnosed with Crohn's at the end of his ice hockey season (age 13). He was back on the ice the following season, but I would say he wasn't completely back to full strength yet. His numbers were "ok" - not great (still slight inflammation) - but by the following season his inflammation was great as was his performance on the ice. This season he lead his team with goals and assists!

Getting food right and making sure he hydrates (if he's pushing himself that hard, make sure he is staying on top of his hydration!).

Good luck!
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Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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04-19-2013, 05:35 PM   #9
Artisan105
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My 16 year old son was diagnosed with mild Crohns Disease in November. He is on Pentasa, Flagyl, and for the past 4 weeks, Methotrexate. Some of his more bothersome GI annoyances are less than they were. He is extremely fatigued though and that isn't changing. How long does that take to go away? He is an athlete, and the fatigue is cutting into his performance, but I am more concerned that it is impacting his school work. Can anyone tell me if that will change? If the inflammation goes away, will his energy return?
In high school I played football, basketball, swimming and tennis. But when I am sick... I don't have motivation for anything. I know I have physical limitations because of my disease so I have less desire for competition. I just want to get better but after being sick for a while, you don't realize when you are healthy so you continue to act fatigued.

Continue to motivate him. Make him nutritious meals. Force him to clean his room, clean himself, eat, and work out. He might think it is annoying at first but giving him a daily routine/structure will help him to get back on his feet.

Make sure he is taking liquid vitamins in gel-caps so he has the basic minerals to help him get going. No soda -_- Soda makes you drop into fatigue mode fast right after the sugar rush. Try replacing the sugar with agave nectar or honey. Try making juices with veges and fruits with ginseng for energy

I hope all of these things helped. Oh let him hang out with a competitive friend who can help him to rediscover his passion for sports. Also let him hang out with a smart friend to help him out with his homework. Remember steel sharpens steel

Ok ttyl
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Steven

Current Meds:
(Remission)
-Asacol 400mg 2/day.
-Remicade 500mg 8weeks(IV).

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