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JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 660
   Posted 7/18/2009 8:22 PM (GMT -6)   
Hello,
Its been quite a while since I've been on here and I need some advice. I've been in a flair for quite some time. The past week or so no matter how much I sleep I need a nap in the day at some point. Does anyone else get like this from time to time with UC.
I've had UC almost my entire life. But never really understood the
tiredness of it all.
 
Thanks for any answers.
Donna turn
~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 7/18/2009 8:36 PM (GMT -6)   
I was like that when I was losing a lot of blood. I apparently became anemic because of this fun condition. Maybe you should get a blood count to see if that could be the case. Feel better!

JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 660
   Posted 7/18/2009 8:43 PM (GMT -6)   
I saw my GASTRO. doctor the other day and I am going for blood work on Monday.

I know this disese is so much fun ( sad face )
~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16730
   Posted 7/18/2009 9:57 PM (GMT -6)   
I am always tired too. I went to the doctor and I was very anemic but even now that my blood comes up normal, I still find myself more tired than I should be. I hope you get to the bottom of this and beat it. I've given in to living a life of fatigue
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 7/18/2009 11:32 PM (GMT -6)   
Maybe it's the UC or perhaps it could be something else. Might also have the doctor check for any thyroid issues. Earlier this year I was tired all the time and I could literally sleep anytime and anywhere. I had my blood checked and my Vitamin D levels were really low. Once I started taking some prescription-strength Vit. D supplements to get me back up to where I needed to be I felt like I had so much more energy.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/19/2009 2:29 AM (GMT -6)   
I loose all my energy when I'm flaring, both due to the inflammation and lose of blood.

Tiredness is a symptom of inflammation.

Inflammation stimulates the immune system, which reacts by producing large numbers of white blood cells and antibodies. All this takes much energy and can result in chronic fatigue.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/19/2009 7:12 AM (GMT -6)   
subdued said...
I loose all my energy when I'm flaring, both due to the inflammation and lose of blood.

Tiredness is a symptom of inflammation.

Inflammation stimulates the immune system, which reacts by producing large numbers of white blood cells and antibodies. All this takes much energy and can result in chronic fatigue.

I didn't realise this was the reason for tiredness with UC - thanks! It's good to at least know why I feel as tired as I do. It's got considerably worse for me the past couple of weeks as I've been coming off the Pred and I find it hard to function most days. And if I get too tired I end up shaky, lightheaded and headachey...not fun!!
23 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
5mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/19/2009 2:35 PM (GMT -6)   
     Have your blood count drawn.  I am also very fatigued but the doctor increased my 6MP to 100 mgm.  He wants that white count down.  When I started this flare in May, I was on 50 mgm of 6MP but my white count had gone up to normal level of 4.0.  My doctor explained to me that at this level my immune system goes on high alert and for some reason or other starts to attack itself smhair .  This make sense?  Guess it does.  Anyway, a few weeks ago my white count was down to 3.1 and that made doc happy.  Still in a flare though.  That itty bitty part of inflammation in my rectum is stubborn!  Not bleeding anymore though.  Only going once or twice a day, but still feel that discomfort.  Wondering if an ileostomy would help.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 660
   Posted 7/19/2009 10:01 PM (GMT -6)   
Hi Everybody,
Thanks for all your comments. I will get my blood work tomorrow. I thalsimia. Sorry don't know how to spell it. So I can't take iron pills so that could be another reason I get even more tired in a flair up.
So i'll see how all the blood work comes out :-)
~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 7/19/2009 10:25 PM (GMT -6)   
I'm tired 75% of the time & my bloods generally test o.k. Based on past threads discussing fatigue, I'd say most of us UC longtimers experience it off & on whether we're flaring or in remission. Glad that extra vitamin D is helping Scrap Girl-- but beware of taking it in the form of Calcitriol, which made me very sick a few yrs back. Vit D is toxic at high levels. / Old Hat (30 yrs with left-sided UC ... [etc.])

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/20/2009 4:50 PM (GMT -6)   
Maybe you could try B-12, in pills or shots?

I would get tired, too, and just let myself indulge in those naps. Can you do that?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16730
   Posted 7/20/2009 7:12 PM (GMT -6)   
Christine1946 said...
     Have your blood count drawn.  I am also very fatigued but the doctor increased my 6MP to 100 mgm.  He wants that white count down.  When I started this flare in May, I was on 50 mgm of 6MP but my white count had gone up to normal level of 4.0.  My doctor explained to me that at this level my immune system goes on high alert and for some reason or other starts to attack itself smhair .  This make sense?  Guess it does.  Anyway, a few weeks ago my white count was down to 3.1 and that made doc happy.  Still in a flare though.  That itty bitty part of inflammation in my rectum is stubborn!  Not bleeding anymore though.  Only going once or twice a day, but still feel that discomfort.  Wondering if an ileostomy would help.

that is weird, i thought 3 was considered low and 4 normal/low.


Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/21/2009 11:45 PM (GMT -6)   
Peety said...
I would get tired, too, and just let myself indulge in those naps.


Same here. I figure my body needs the extra rest.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


Lou95
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 7/21/2009 11:57 PM (GMT -6)   
I love my naps, too. I joke I could fall asleep standing up if I could lean next to a wall. I take Vitamin D-3 because I don't get in the sunshine much. I can't take iron pills at all so I try to eat liver at least once a week and vegetables high in iron. I've been borderline anemic all my life and I haven't tried the B-12 shots yet, but my Dad swore by them.
Age/Sex:  52 & female
Diagnosed:  2005 pancolitis
Medications:  800 mg. Asacol twice a day - in remission; Two 1200 mg. fish oil supplement nightly.   Effexor-XR 150 mg. daily
 


JLou
New Member


Date Joined Jul 2009
Total Posts : 10
   Posted 7/22/2009 2:27 AM (GMT -6)   
I have the same problem with being tired and needing the extra sleep. The loss of blood does tend to cause tiredness. I would recommend taking iron pills daily. Most likely the blood loss has made you somewhat anemic. I started taking iron daily and the tiredness began going away little by little each day.
Good luck

Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 7/22/2009 8:28 AM (GMT -6)   
Yep. Same as everyone here. Always tired. I'm not flaring right now, feeling almost 'good' or 'normal' actually. I take B12 and iron daily. I have been for at least a year now. No change...
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Taking Lialda 3x a day<---NOT ANYMORE. I got pancreatitis from them.
I stopped taking Lialda 8-19-08. Ugh!
All I take now is just my 3 Entocort in the morning, and 1 iron pill in the afternoon.

NOW back on Lialda as of 8-30-08, not the cause of pancreatitis.
Going in for an endoscopic ultrasound on 9-19-08 to check things out.
Still on Entocort and iron. Yay...

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
Taking Caltrate, Iron, and B12. I still take one Lialda a day.. Don't know why..
Something is giving me horrible headaches. =[ At least I'm off the Entocort.

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