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exhaustion even in remission?

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Ulcerative Colitis
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Posted 3/25/2011 3:04 PM (GMT 0)
My son with UC has been having a rough time - and I've been having a rough time with him!
Several times a week he seems simply unable to get up for school. He needs to be up by about 7 am to get to school by 7:35. He has missed so much school - and even more of his first period class - that he is in danger of failing, which would endanger his high school graduation in addition to, argh: the two colleges he's applied to want his next marking period grades because his mid-year grades weren't good enough (because of missed days and make-up work not done.) So he's got to do mucho makeup work to bring up the grades.

We've had his blood tested for about everything that could be imagined, from D to iron and in between.... the doc sent us to a sleep specialist who has him pegged as having "delayed onset sleep syndrome" (kinda like being a night owl and having the lateness get more and more extreme), insomnia, and possibly narcolepsy.....?!(more tests yet will determine that.)

I am so busy with him, dealing, helping him to deal, taking him regularly to several doctors from sleep to psych... I've been less available to be on here than I would like.

So, I'm just wondering...... we're looking everywhere, but do others have this fatigue just from their UC, even in remission? Amazingly, in all this stress, he is still in remission. (The stress of this has me fighting off some minor inflammation......)
Posted 3/25/2011 3:32 PM (GMT 0)
I DO. I have been this way my whole life, even before I had UC. I remember not being able to stay awake in school. I must have CFS or something.
Posted 3/25/2011 3:45 PM (GMT 0)
I really think I don't have as much energy as I used to have pre-UC. I'm not so tired that I'm missing work. I still get up at 5:30, go to the gym and make it to my desk by 8. BUT, when I get home at night, all I want to do is veg out in front of the TV. Pre-UC, I wasn't able to just sit watching TV, I'd always have some sort of hand work to do (crocheting, needle point cross stitch ...). I'm so lucky my husband is willing to do the cooking and he is very neat so there isn't much mess to clean up.

Good luck with your son!
Posted 3/25/2011 3:57 PM (GMT 0)
Remission in UC does not means cured. It only means that the inflamation inside the colon is low enough for it to look normal.
So yes, you might link his fatigue with his UC, in my opinion. Those things happend to me also. But i am sure things will get better as long as remission period will get longer and longer.

Good luck!
Posted 3/25/2011 4:01 PM (GMT 0)
I feel more tired after my pre-UC diagnosis but I believe that is not from active inflammation but rather from the extra emotional stress UC gives as well as the the different foods I have been eating to accomodate my UC (sometimes eating the right foods is so difficult, I will just go without eating).
Posted 3/25/2011 5:56 PM (GMT 0)
If I am not physically active and if I do not get caught up in sleep it is very difficult to get going in the morning without stimulants. Less than 8 hours a night for several nights now as I have a very early commute. Going to the gym right now because if I do not, I will feel like taking a nap. I will be recharging over the weekend with minimum 8 hours fri/sat/sun of rest.
Posted 3/25/2011 6:02 PM (GMT 0)
Yes, I think this is normal with UC, for me, I had to get at least 10 hours of sleep to function normally, otherwise I could sleep 12 to 14 hrs/day. I think it's the body's way of telling you to take it easy, I'm trying to heal!

I'd even come home at lunch time from work to nap for about 20 to 30 minutes and I had no problem falling asleep quickly for it. Set my alarm clock mind you. Luckily I live close to where I work!

He should come out of soon when his body says I'm doing much better now!
Posted 3/25/2011 7:02 PM (GMT 0)
I would add that teenagers need a lot of sleep, and from my recollection of my daughter, don't like to get up really early. Could it also be possible that he is a bit depressed and anxious about graduating and going off to college? I think the added stress of contemplating major life changes can take a lot out of one.
Posted 3/25/2011 7:23 PM (GMT 0)
I just asked my GI this question this week. I'm always tired. Doesn't matter how much sleep I get.
He said he doesn't believe it's UC related because my inflammation is not really bad right now.
He did blood work and is looking for an underlying reason.
I personally think it's the UC. I feel completely different then before I got sick, however, I am a lot
less active then I was as well. I am going to try to get more exercise and now that the snow is clearing
up try to get outside into the fresh air more.
I don't want to belittle it but when I was a teenager I failed a few classes over the years. All happened to be a 1st period class.
It wasn't coincidence!
Posted 3/25/2011 9:01 PM (GMT 0)
Wow! I never knew there was a name for it! I have it! Delayed Sleep-Phase Syndrome. I don't get tired until 3:00 to 4:00 am, and then I sleep late. I've tried forcing myself to go to sleep early; however, I still wake up late. So if I don't want to end up sleeping 14 hours a day, then I have no choice but to stay up until 3:00 or 4:00 in the morning. I've always known my circadian rhythm was off, but I didn't know there was a name for it.

My older daughter has it too; so we've learned to work around it. She was homed schooled in high school, and she took afternoon and evening classes in college. Her husband has it too. We are all night owls.

The problem is not due to a mental illness, nor is it psychological. So your son will have extreme difficulty forcing himself to match your and most of the word's times. The only way I have learned to live with it is to accept it. I work in the evenings and get up late. I work on project-based assignments; so it usually works out for me. As long as I get my work done on time, my managers have been okay with it.

My boyfriend is the opposite from me. He keeps farmer hours. He's ancestors were farmers; so it makes sense that his circadian rhythm matches farmer hours. Sometimes I'm ready for bed when he is ready to get up. So I compromised for him. I go to bed when he does, wait until he falls asleep, get up again, and work until 3 or 4:00 in the morning.

If it were a UC issue, then your son's sleeping hours would match yours. He would just feel more tired than normal, be out-of-breath, and feel weak.

Also note that adolescents need more sleep. Their hormones are out-of-wack.

I do my best work from 3:00 pm to 3:00 am.

I read just read about it on Wikipedia:

http://en.wikipedia.org/wiki/Delayed_sleep-phase_syndrome

According to Wikipedia, I fit all of the diagnostic criteria. Where can I get diagnosed?

Post Edited (subdued) : 3/25/2011 4:15:00 PM (GMT-6)

Posted 3/25/2011 9:20 PM (GMT 0)
My extreme fatigue was due to food allergies. Once I got tested for allergies and eliminated the offending foods, my energy levels normalized quickly. Has he been tested for food allergies? It seems that food allergies and UC often go hand-in-hand.
Posted 3/26/2011 1:40 AM (GMT 0)

subdued said...
Wow! I never knew there was a name for it! I have it! Delayed Sleep-Phase Syndrome. I don't get tired until 3:00 to 4:00 am, and then I sleep late. I've tried forcing myself to go to sleep early; however, I still wake up late. So if I don't want to end up sleeping 14 hours a day, then I have no choice but to stay up until 3:00 or 4:00 in the morning. I've always known my circadian rhythm was off, but I didn't know there was a name for it.

Thats how I used to be. Now I usually reach a point where I am going to simply collapse somewhere and I am for the bed. Last night I tossed and turned. I used to use Restoral, they gave it to me in the hospital and it rocked but it is a mild benzo. Wears off in a few hours.

What I do now is take herbs. Bodybuilders MUST sleep so go to one of those stores not Max Muscle and not GNC - a bodybuilder nutrition store and get sleep aids they use like phenibut,GABA,Lean Dreams etc.

Now I get up around 4-5 and if I am reluctant I can usually remember crashing close to 8 hours prior. System is used to it and I have no alarm clock in use...not even my iphone.

IOW - Sleep phase was 180 degrees ouf of sync, now it is dead on.
Posted 3/26/2011 7:42 AM (GMT 0)
i am fatigued even when in remission. several years ago i was doing well but just exhausted all the time. i made an appt w/my gi and he told me it was just part of having uc. so there you go! you are not alone!
Posted 3/27/2011 3:45 AM (GMT 0)
When I was recovering from my two flares, I was constantly tired. My neighbor had UC also and told me that when he is recovering but in remission he would come home from work and go to bed almost right away. I was the same way. I would be in bed at 7 or 8 pm every night. I normally would stay up until 11 or 12. As I slowly got better I could stay up longer. It has been 3 years now and it took me over 2 years to really get back to where I was before. good luck finding a solution.
Posted 3/27/2011 12:27 PM (GMT 0)
I am one of those who is still very exhausted even in 'remission'. Everything seems normal but the one remaining 'symptom' (if you can call it that) is lingering exhaustion. Ive only been in remission for a few months so I dont know if it'll get better. Some days I feel fine but most days I do feel like I need to lay down for a half hour atleast and make myself just relax and do nothing. Some days my legs feel like led, like my body is heavy. I do think its UC related, for me anyway.
Posted 3/28/2011 3:06 AM (GMT 0)
The exhaustion for me has been there since I got my first flare. I come home and don't want to do much of anything. I would love to stay in bed all day most days, just because I am tired. I also have difficulty sleeping more than 5 or 6 hours, and so I struggle to get through each day :/
Posted 3/28/2011 1:53 PM (GMT 0)
This has been so helpful! Thanks, everyone.

Sometimes my kid is at 100% - getting up early, being on time, staying after school for rehearsal (almost every day), and going to the gym...... and then other days he just seems unable to get up, even whimpering with the effort. about 8 more weeks of classes.... and if he can pull a few grades up, graduation and music school.

Subdued - we've been going to a hospital-affiliated Center for Sleep Disorders for the diagnosis re. Delayed Sleep, etc.

What a wonderful group of folks you are! I feel so much less alone. :-)
Posted 3/28/2011 5:22 PM (GMT 0)
I'd second the comment about food allergies. There's also chronic fatigue syndrome and candida-related complex.

I've been mostly in remission for years and I still struggle with bouts of fatigue. I look forward to taking naps on the weekend and I try to get at least 7-8 hours of sleep a night.
Posted 3/28/2011 5:54 PM (GMT 0)
Thanks, princesa. I will keep those thoughts in mind and ask the docs.

I'm not expecting to find a doctor who can really answer this.... but the more medical documentation we have, the more lenient the school will be since he's missed many more than the allowable "absent" days from school.
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