Posted 2/15/2008 10:10 PM (GMT -6)
Im not flaring and I am always tired, I blame mine on all the meds. but not sure of that, I can be in bed 10 or 11 hours get up and 4 hours later tired all over again.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.

Posted 2/15/2008 11:34 PM (GMT -6)
If I could, I would sleep 12 hours a day. But life doesn't permit me that. Thanks for the reminder to call the doc on Monday for results of last week's blood tests...
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 2/15/2008 11:36 PM (GMT -6)

Hubby has not been able to get over that hump of constant fatigue too.  He played 9 holes of golf yesterday and came home and collapsed and went to bed and stayed there for the rest of the day/night.  He has a handicapped pass for his golf cart which he uses on the course on the last few holes when he gets too tired to walk the rest of the course.  It's great he was able to get that so he can at least play some golf otherwise he wouldn't be able to do that.

Rested all day today - Dr appt at 5 pm - had a light bite to eat and then a movie.  Those 4 hrs tonight was enjoyable but he had to rest all day so we could go out.

It is so weird that with all the sleep and rest he gets he never truly feels rested like alot of you say as well.

We took a cruise last month but he has to pace himself and get naps in between.  I find when there is a lot available to do and more people around it kind of motivates him to push a little harder and enjoy himself a little more.  I think it gets his mind off things and he somehow finds a way to have some fun.  If he is just sitting there and not much going on - he could doze right there in the chair.

I think the UC in of itself causes the fatigue as well as all the different meds??? 

The fact that he isn't in a constant state of urgency and frequency at least allows us to have some kind of a social life even though it is limiting and we have to plan accordingly. Our credit card bills are lower - not so many charges for eating out!!! 

How nice when people can just go and do what they want without having to evaluate and plan ahead and be able to be spontaneous.  It was just a few years ago that was the way it always was for us and many of you as well.

We sure have a different appreciation of things now and take nothing for granted now.

 


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

Posted 2/16/2008 8:21 AM (GMT -6)
Wow! And here I thought I was alone in this strange fatigue funk! I have been extremely tired lately and I don't know why either. I am not flaring, nor am I entering a flare - Uc wise I'm feeling pretty good. And the only thing that is bothering me at the moment is my SI joint again. The only thing that is different is that I started the generic Colazal. But I'm thinking of calling my GI soon and tell him to call in a script for the brand name because I don't like how the generic is making me feel. I feel as if I'm getting used to a new med all over again.

But who knows, maybe it's just the whole end of winter thing I'm going thru too. I HATE February because even though it's the shortest month, it feels like the LONGEST! :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

Posted 2/16/2008 8:26 AM (GMT -6)
Sherry! I switched to generic Colazal last week (or was it the week before). I see my GI in March...I'm going to ask him about it. I have been dealing w/ joint pain in my hands too. Interesting.....
Tabitha (Tab)

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

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

Posted 2/16/2008 9:02 AM (GMT -6)
I seen my consultant's registrar last week and mentioned the extreme fatigue. She said it was totally normal in UC due to the effect the inflammatory processes involved in the disease has on the body.
I asked if it could be the azathioprine but she was adamant it couldn't be.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3

Posted 2/16/2008 11:54 AM (GMT -6)
I still tire a lot more quickly than I did before UC, even though I'm in remission. Exhaustion is one of the listed effects of UC, unfortunately. Today is especially bad for me, because I had some dental surgery done yesterday and they gave me Demerol, Valium and Versed. Versed always makes me loopy for a couple of days. So today I'm even goofier than usual.
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

Posted 2/16/2008 2:25 PM (GMT -6)
I too am super tired! I go to bed at 9 and sleep until 9. I take the dogs out and could lay around all day. I have to make myself go to the grocery store and stuff and really have to psych myself up to go. I blame it on the Imuran but I also think that the cold crummy weather here in IL isn't helping! I almost want to go lay in a tanning bed to remember what it feels like to feel a warm sun on bare skin! :) Mid-winter funk. Hang in there everyone!

Becky
29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 10 mg!
-Re-trying Imuran; I'm at 75 mg now...but it's making me so tired!
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 

Posted 2/17/2008 6:42 PM (GMT -6)
ZZZZZZZZZZZZZZZZZZZZZ ... I feel like lying down all the time. It's immuno-fatigue. That HAS to be the explanation! Sherry's recent thread about long measles (rubeola) in childhood reminded me that post-measles was when I first experienced this overwhelming need to rest, rest, rest. Alarm clocks, jobs, & chores be darned!!!!!!!! But really, no one who needs to earn a living and/or keep house (garden) should get IBD ... / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 2/18/2008 7:02 PM (GMT -6)
I too join the ranks of the very tired! Its pretty bad when you sit down for a minute and start dozing off! Of course this nasty weather in MI does not help either!!!!!
Sue
Posted 2/19/2008 10:27 AM (GMT -6)
Hey Sherry... I can't remember if you've ever indicated your age, but if you're mid-30s or older, some premenopausal issues might be coming into play. The hormonal fluctuations can certainly cause fatigue and joint pain. May be worth having your levels checked along with the thyroid results.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 

Posted 2/19/2008 12:32 PM (GMT -6)
super tired all the time for me too... I'm in a sort of mini-flare, manageable in the sense that I am able to leave the house, go to work, etc. Flaring in the sense that I'm going to the bathroom about 6 times a day, up a few times at night passing just mucous. Have just taken my last dose of pred 2 days ago after being on it for about 6 months, so I don't anticipate the fatigue getting better anytime soon. I don't know if it's the February blahs, or what... I honestly feel like I've lost/am losing my will to live- sounds ridiculous, but every day, I get up & 2 hours later I just want to go back to bed. My joints ache so badly, my UC is only semi-controlled, I'm at the end of the med rope so to speak. Ugh... I'm just hoping I feel better mentally soon.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 2.5mgs every other day
Iron supplement
Culturelle
 

Posted 2/19/2008 9:44 PM (GMT -6)
regarding the sore joints - hubby too - he finds that using a "hugga pillow" as we call it as well as one in between his legs so his knees don't touch at night he sleeps much more comfortably -- just FYI

(I used to be the hugga pillow but some things are more important right now...like getting a more comfortable night's sleep...lol)

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

Posted 2/20/2008 8:43 AM (GMT -6)
Princesa, my screen ID sort of gives away my age :) lol I was 34 when I signed up with HW and I've been here for 4 years so I'm 38 now. But yes, I do believe I am premenopausal and have been for at least the past couple years. My SI joint has always bothered me, even in my early teens though I didn't know what it was at the time. So I can't blame that on hormones. However, I do think I can blame those darn hormones on my other joint pains. My right knee has been hurting something fierce and I can't lean on it or I end up on the floor and for some reason, my right pointer finger hurts too! The fatigue is a bit better today and I feel almost normal. But having sun here in Michigan is always a plus for me because I suffer from SAD which I guess can also account for the fatigue too.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

Posted 2/20/2008 10:42 AM (GMT -6)
Red_34 said...
Princesa, my screen ID sort of gives away my age :) lol I was 34 when I signed up with HW and I've been here for 4 years so I'm 38 now. But yes, I do believe I am premenopausal and have been for at least the past couple years. My SI joint has always bothered me, even in my early teens though I didn't know what it was at the time. So I can't blame that on hormones. However, I do think I can blame those darn hormones on my other joint pains. My right knee has been hurting something fierce and I can't lean on it or I end up on the floor and for some reason, my right pointer finger hurts too! The fatigue is a bit better today and I feel almost normal. But having sun here in Michigan is always a plus for me because I suffer from SAD which I guess can also account for the fatigue too.

Sorry. I don't pay much attention to numbers in screen names as you never know what they might stand for.
 
The chirpractor I saw said inflammation and pain in the si joint was definitely related to general inflammation in the pelvic area from UC.
 
Someone recently recommended Suzanne Somers book Ageless to me where she discusses bioidentical hormone therapy and interviews leading doctors in the field. It's something I'm looking into now as a way to control premenopausal symptoms and generally improve my health. As you know, hormonal fluctuations affect UC, and really, everything is interrelated, so I'm a big believer in doing whatever needs to be done to improve health from all directions, looking at the big picture. You might want to give it a read.
 
I also suffer from SAD. Do you have a full spectrum light box? I find eating breakfast and dinner in front of it during the winter really helps.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 

Posted 2/20/2008 10:57 AM (GMT -6)
I might have to give that book a read - it sounds interesting. Do you suppose they might have this at the library? And why yes of course I love my handy dandy little light box! :) It truly does help me when the skies here don't see sun in weeks. I have it here by my computer so I use it frequently - obviously since I'm always online! lol As for the SI joint inflammation, I've always had that even in my young teen years (wasn't diagnosed with Uc until I was 22) - I just didn't know it was NOT normal to have pelvic pain. But it really hasn't been bothering me much until this past year which is why I'm getting steroid injections - to help with the pain and back spasms.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

Posted 2/20/2008 1:56 PM (GMT -6)
Hey Sherry... yes, I found the book at my local library. Also, look for Sexy Years by Suzanne Somers. Ageless is newer, but they both cover similar ground. I'm starting bioidenticals this week and am getting off the pill, which I believe makes it more difficult to balance gut ecology. If you're interested, I'll keep you posted on my progress.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 

Posted 2/20/2008 2:11 PM (GMT -6)
Yes, please do. I might have to make a trip to the library then. I sometimes hate going to the library because they are all computerized now and the computers they use links the searches to every single library in their network. It's a pain to tell the truth! But if I don't find it, I will ask the librarian. Thanks :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

Posted 2/20/2008 9:09 PM (GMT -6)
I feel the same way - i have had days where i have been in bed all weekend ... when i started my new job in Sept. i would come home every day and go right to bed. It was terrible and it was also frustrating to my husband. I was too tired (or sick or both) to go out. We don't see friends as much as we used to, etc. We're waiting for me to get better.

Started Remicade in Oct. and have had 5 treatments. That medicine makes me tired on the day of the treatment and usually the next day or so. I HATE being so tired. I HATE not being able to go out and do the things that other people can just go and do. I hate that my energetic old self is gone. I want my life back in the worst way.

Sorry for complaining. i think when we get tired things seem so much worse. I'm glad i found this forum, though. Hopefully I will get better. I could SO go for some sunshine. I started back up on anti-depressants last spring because i was so lathergic and tired that i could barely get out of bed to go to work. I think that helped a little bit, but only a little.

I feel fat and sloth-like ... i've gained 10 lbs and i want to be able to work out again and get my body back in shape. I guess i should just force myself to do these things ... its so hard sometimes though. Just want to sleep.
33 year old female - diagnosed with UC 7 years ago. Misdiagnosed since i was 19.
 
Current treatment:
Colazal 3 tablets 3x/day
Remicade
 
In the past I have tried Rowasa (no response), and have been on Prednisone for up to a year at a time. I have been flaring for over a year and started Remicade in October, 2007.

Posted 2/20/2008 9:15 PM (GMT -6)
BTW - the posts about pre-menopausal symptoms are really interesting. I haven't had kids yet - i am really hoping that none of this (the UC) effects that. I'd like to be about 35 or so when i have kids. I'm really worried about that to with the UC. What did you guys do if any of you have children?

I never thought of pre-menopausal symptoms (hormones) as a contributor to my aches, pains and tiredness.
33 year old female - diagnosed with UC 7 years ago. Misdiagnosed since i was 19.
 
Current treatment:
Colazal 3 tablets 3x/day
Remicade
 
In the past I have tried Rowasa (no response), and have been on Prednisone for up to a year at a time. I have been flaring for over a year and started Remicade in October, 2007.

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