Really really tired all the time

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gilbernick
New Member


Date Joined Jan 2008
Total Posts : 11
   Posted 3/27/2008 7:00 PM (GMT -6)   
Just diagnosed in Jan 08.  Came out of nowhere.  Never had symptoms and I'm 35.  Ended up with a 9 day hospital stay.  After finally tapering off pred and starting 12 pills of asacol a day I'm back in a flair.  I had 4 wonderful days of formed stools (just like back in the day) and then the D started again.  Now I'm back on the pred starting today.  Since I have been diagnosed, I've just been so darn tired all the time even if I do get enough sleep.  With the D I'm sure my body is not getting anywhere the nutrients it needs so that may be a contributing factor. Is anyone else experiencing this?
 
 

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 3/27/2008 7:01 PM (GMT -6)   
I'm tired all the time whether I'm in remission or flaring. I have had tons of tests done and my primary nor my GI can figure out why. I think it is the disease itself and the meds. It stinks, huh?!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


gilbernick
New Member


Date Joined Jan 2008
Total Posts : 11
   Posted 3/27/2008 7:03 PM (GMT -6)   
It sure does.  I a 4 yr old and a 9 month old.  I feel like its impossible to be the father I want to be right now.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/27/2008 9:36 PM (GMT -6)   
Lack of energy/constant tiredness is a feature of UC. Some people don't have it when in remission, some do. My energy level is better in remission, but still not what I would wish for.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/27/2008 10:16 PM (GMT -6)   
It's a feature of IBD in general, my GI says that even for patients who are in remission commonly still complain of being more tired then the average person.

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


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 623
   Posted 3/28/2008 6:03 AM (GMT -6)   
I've dealt with energy issues for years. I hate how I am now compared to how energetic I once was. :-(

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 3/28/2008 6:12 AM (GMT -6)   
Glad to hear other people suffer this symptom as well. I have become pretty depressed about being so tired all the time.. Going to work and coming home and going straight to bed.. only to wake up.. have supper and go to bed again just doesn't seem like a normal life !!!! Its worse now that I am coming to what I hope is the end of a flare up... but even in remission I have energy problems.
Ulcerative Colitis Diagnosed May 2004
400mg Asacol 3 times per day.... increased to 6 400mg per day Mar.11
Entocort 3 pills once a day
Daily Vitamin for Women


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 3/28/2008 7:21 AM (GMT -6)   
Have you had your iron levels checked?  Iron-deficient anemia can cause one to be very, very tired all the time.  I have been anemic, and now that my iron levels are coming back up, so is my energy. 
Proud new mom of a beautiful baby boy!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/28/2008 7:30 AM (GMT -6)   

Ditto.............hubby (and I) get so discouraged over this.  Seems like I never have the bed made!!  The open floor plan in Florida makes it "out there in the open" and a pain to always be looking at an unmade bed...lol. Sp I just shut the door and I don't see it.

Most times I just neaten it up and pull it together so he can easily slip into it and not be fooling around with all the pillows etc to unmake it.  More important for him to get the rest.

His doctors say the same thing - goes with the disease - I'm sure all his meds add to it to.  I find when we have things to do, errands to run, seeing friends for the most part his psyche kicks in a bit and he has more stamina. Afterwards he is pooped out though. If he is in the house with nothing to do then he is resting in bed or on the recliner on the lanai.

As a younger person with families and jobs and other obligations it has to be so difficult to try and push yourselves when the body is not willing.  Every day I hope and pray some major breakthrough will happen to help all of you out there trying to live your lives with this literal PIA.


61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/28/2008 1:22 PM (GMT -6)   
when I was on Asacol, I was fine no unusual tiredness, since my flare, I was a zombie, I am better now but I am very tired, I believe b/c of the meds I am on.

I am afraid how tired I will be when off the pred.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007 - partial remission since 03/08
Prednisone 30mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 3/28/2008 2:36 PM (GMT -6)   
 'm tired all the time as well, even when my iron levels are normal. I have to take naps everyday, especially during the school year b/c I am completely worn out after classes. It sucks--I wish I could have my normal energy level back sad
Diagnosed August 2007
3 Asacol 3x/day
1000 mg Canasa at night


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/28/2008 4:12 PM (GMT -6)   
I have had UC for 4 yrs...diagnosed. I have found that no matter what meds I am on, I have no where near the energy others my age have. I know what you mean..get up, go to work, go to part time job (3 days a week), try and talk myself into exercising...even though all I want to do is sleep! I really like to work out...it gives me more energy...but I swear it is like 'stick a fork in me, I'm done' and the bed wins 50 % of the time!
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/28/2008 6:02 PM (GMT -6)   
I concur. Boy, but when I get that spark of energy and feel good I go nuts, lol. I realize that is what I should feel like all the time though.
Proctitis DX 1998
Lialda 1x day
Hydrocort Enema As Needed


waterdog
Regular Member


Date Joined Apr 2008
Total Posts : 24
   Posted 4/28/2008 6:30 PM (GMT -6)   
My husband has very little energy either. He comes home from work and if he has nothing to do around the house as soon as he lays down with in 20 min. he is asleep. He didnt use to be that way until he got sick.

my3suns
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 4/30/2008 4:04 PM (GMT -6)   
I am extremely tired all of the time. I blame it on UC because I was never like this before, however, I wasn't like this when I was initially diagnosed in 06. It seems like over the last few months I have become more tired.
my3suns
 
Diagnosed with Ulcerative Proctitis in September of 2006
Canasa
Diagnosed with Pancolitis in April 2008
My current meds are Rowasa and Lialda
Current state - Flaring


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 4/30/2008 4:41 PM (GMT -6)   
Glad I am not the only one, although I wouldn't wish it on anyone either!! I got into the bad habit of drinking energy drinks like RedBull when I was feeling tired or when I wanted to have an "upbeat" weekend.. It got to the point I was drinking them ever few days then everyday of the weekend! Boy what a mistake THAT was! I think the flare I am in now might have alot to do with not getting the rest my body was crying for and all the caffeine that was in the drinks. Sigh......
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Prednisone 5MG 3 per day for next 10 days
Daily Vitamin for Women and Folic Acid


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 4/30/2008 6:56 PM (GMT -6)   
I just found this web site a few days ago, and it has been wonderful!! I had my first flare in fall 2004 right after getting married. It was cleared up (with pred) by Christmas and I was convinced I would never have another one. I never wanted to ever have to take pred again! Life was good for so long.
I had a perfect pregnancy and only took my maintence med - Dipentum while pregnant. After my pregnancy my GI and I talked about coming off the Dipentum with the posssibility that I didn't have UC due to the fact that my blood work was inconclusive. I was only off the Dipentum 4 months before my second flare started. Now I have a 15 month old daughter and still haven't gotten my flare under control. I'm SO tired all the time! I started 6MP 5 weeks ago and still haven't seen any results. I was so depressed to start 6MP because now I can't have another baby for at least 2 and a half years because that's how long my GI wants me on 6MP and I don't want to chance a pregnancy on that. I'm very depressed with the tiredness, uncertain family planning, and I still have this thought of...what if this is not UC and I'm on this serious medicine for nothing. My blood work during my first flare was inconclusive for UC and the blood work he ran during the second flare was negative for UC but he says based on what he sees on the colonoscopy it's UC. I have never told anyone besides my husband and parents about my medical condition because I feel so embarrased. That's why I'm so glad I found this web site! I thought I was the only person that keeps a basket of toys in the bathroon so my daughter will have something to do every time she follows me in there but I'm sure some of you have done similar. I saw someone mention hormones causing their flares and it dawned on me that I went on birth control just prior to getting married then I had my first flare and then after having my baby I went back on birth control and got my current flare I've been dealing with for the past 9 months. I'm really wondering about that now.
25 years old
Ulcerative Colitis since Sept. 2004
Currently taking 1000mg Dipentum, 50mg 6MP, and weaning off Entocort at 6mg, and Canasa


Yujin
Regular Member


Date Joined Feb 2008
Total Posts : 55
   Posted 4/30/2008 9:47 PM (GMT -6)   
I'm tired all the time.. so during my free time.. i prefer to just lay on my bed...
Diagnosed with UC on 2007. Undergone Fistulotomy on 2005. Taking Generic Asacol 400mg 3X a day... "HEALTH IS WEALTH"


mmccaus
Regular Member


Date Joined Apr 2008
Total Posts : 20
   Posted 5/1/2008 2:33 AM (GMT -6)   
I'm sorry to hear that so many suffer from this fatigue. I have only had that as a symptom last year when I was really sick and got extremely anemic. With normal blood levels back, I don't feel extra tired, and I've been in this flare for a year now. Like so much with UC, I guess it really varies from person to person. I'm curious about the UC blood work you mentioned. I've never heard about any blood test for UC. What is the test specifically? I was diagnosed back in 1989 from my colonoscopy, and then again last year when my 15 year remission suddenly ended, they confirmed the diagnosis of UC with a colonoscopy.
M, 44, SF, CA
ulcerative proctitis diagnosed in 1989, active 3 years, but controlled with Sulfasalazine and cortisone enemas
15 year remission off all meds 1992-2007
ulcerative colitis returned May 2007, no remission since
concurrent infections at diagnosis: c-diff, cmv colitis, both treated and negative
meds: asacol, 4-3x/day
started remicade 4/22/08


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/1/2008 11:15 AM (GMT -6)   
mmccaus, just curious. Your signature states that you were on sulfasalazine when first treated. Did you try this drug again when you came out of remission or were you just put on asacol?
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 4th night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 5/1/2008 11:47 AM (GMT -6)   
gilbernick,

if you're consuming sugars (soda, candy, cakes, cookies, fruit juices, etc.), try eliminating them completely from your diet and try reducing your starch intake...I can't guaranteen anything but it worked for me (and others here), so maybe it's worth a try.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


SteveDresser
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/2/2008 9:24 AM (GMT -6)   
I to suffer from fatigue almost had to drop out of school because I was so dizzy and tired driving home each day. Anyone who has had any success with dealing with this please post!

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/2/2008 1:47 PM (GMT -6)   
Oh, definitely. My boyfriend occasionally jokes that he's dating an old lady because I fall asleep early always; if I lay down I'm out. And I Just never have the energy to do the things I used to... Like exercise! It's kind of a catch-22... I know exercise will make me feel better and have more energy... But I don't have enough energy to get up and do it!!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
10mg Lexapro (for depression/social anxiety)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
10meq Potassium
 
 


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 5/6/2008 10:41 PM (GMT -6)   
I was tired all the time with UC. I was at the point where I slept 14+ hours a day, barely made it through work with my office desk job (couldn't go out into the field due to bathroom issues), and barely had enough energy to make a dinner for myself. Then I would just sleep on the couch afterward, wake up at midnight to go to the bathroom and then go to bed, repeat. That's what my life with UC consisted of.

After my diseased colon was removed. My energy levels are back to normal after 12 weeks post op. In fact I can do yard work again. I could barely mow my yard with a riding mower for 43 minutes last year without being worn out...I felt like a 90 year old at age 31. So now I'm catching up on 2 years worth of yard work.

Unfortunately, your body is waging war with itself, it wants to kill your colon and is using all of your internal resources/energy reserves to do this, that is why you feel tired all the time...whether in remission or in a flare or eating the best nutritional foods. My constant year in a flare really drained me gradually. My last 6 months prior to surgery were like I explained above, the first 6 months were manageable but I got more and more tired as time went on. It was so bad, that I would rather be dead than live like that...so that's why I did the surgery route...I figured I had nothing to lose but a colon...and it was worth it.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
Sept. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 5/7/2008 11:14 AM (GMT -6)   
Count me in on the nap list. I think some of my fatigue is disease, some of it is stress and some of it is just getting older. Kids never appreciate the value of a good nap : )
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