Argh...the fatigue!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/20/2009 12:50 PM (GMT -6)   
Anyone else really struggle with this? Since going back on the Pred my 'toilet' symptoms have improved so much, but I just can't seem to get rid of the fatigue, shakiness, and then eventually headaches and dizzyness as a result of the tiredness. I'm unable to manage more than 4 - 5 hours at work and as a result am having to reduce my contract and having to come off my management training programme. This headachey/lethargic feeling has been present for about 2 years now...it came just before my 'toilet' symptoms came in the beginning.
 
The feeling of being really tired and 'not being with it' is made worse when I'm on alot of medication like I am at the moment but it still doesn't seem to alleviate much at other times. I'm just beginning to wonder if this is how its going to be for me and that this side of the UC will never go away.
22 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: 
40mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository every other night, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety/depression), Probiotic Multivitamins 
                             
                             


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/20/2009 1:04 PM (GMT -6)   
Have you had bloodwork done to check your B-12 levels? Recently I had to start B-12 injection therapy because I am no longer able to absorb it in my colon...low B-12 levels can make you very fatigued....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided UC, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/20/2009 1:33 PM (GMT -6)   
I had a blood test done last week because of starting the Azathioprine, so will be having them regularly over the next few weeks. Would it come up on these tests?!

22 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: 
30mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository every other night, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety/depression), Probiotic Multivitamins 
                             
                             


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 5/20/2009 2:07 PM (GMT -6)   
For me, fatigue has been a characteristic symptom of my UC. Prior to being diagnosed I went to a couple of doctors trying to determine the source of my being tired all the time. They did blood work (testing for anemia) and could find nothing amiss. One PA suggested I consult a psychologist, assuming it was all in my head. That raised my spirits.

Long story short, after being diagnosed and treated for the UC, my energy levels slowly began to return to normal once I achieved remission. During my last flare (beginning in November) the cycle of fatigue started again. It was further complicated by the drugs I was taking - especially 6MP (which I have just stopped taking). As I am returning to health, my energy levels are getting better once again - albeit slowly.

I guess what I am saying is that once you get a handle on your disease and can begin tapering off some of your medications, things should get better.
Diagnosed with UC in 1990.

Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)

Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, probiotics.

Other: Raw Milk for breakfast


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/20/2009 2:36 PM (GMT -6)   
Thanks thats good to know. I'm just so sick of people telling me I look rough and tired all the time, and I've nearly always got big dark circles under my eyes and go really pale and visibly tired after being active for more than a few hours eg being at work.

22 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: 
30mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository every other night, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety/depression), Probiotic Multivitamins 
                             
                             


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 5/20/2009 2:59 PM (GMT -6)   
Up until about a year or so ago I had that crushing fatigue. I was anemic at one point and had a month long series of Venofir (iron) injections. Once I was off the Prednisone for a good long time I finally felt like I was bouncing back, but I still get tired if I don't take care of myself. Our bodies are always "fighting" the chronic inflammation, even when we are in remission our bodies work harder than healthy peoples'.

Make sure you get an adequate amount of sleep. I am in bed, without fail, bu 10 pm. I take vitamins and supplements and make sure I eat well balanced meals. Walk and work out in moderation, but it's important to move around.

Hang in there, it does get better.
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

15 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 4/25/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/20/2009 3:08 PM (GMT -6)   
The fatigue is unrelenting and awful.  It's the worst symptom.

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/20/2009 3:25 PM (GMT -6)   

For me it is the worst symptom too, its so debilitating (sp?!) I rarely go out anymore and am having to make sure I plan out days and days off around it...its so frustrating. Its weird because like I said in the first post I noticed I was getting tired after doing simple things like doing a bit of shopping or walking the dogs, and never really thought anything of it. I was then often getting sent home from work cos i looked awful and felt generally under the weather. And I guess I just got on with it for the next year and a half until my UC got really bad and I've now realised its that thats causing it, and am making sure I take more care of myself and not push myself too far.

For those of you that have this problem - other than eating right and getting a good nights sleep etc, how do you deal with it? especially the emotional side of it?!


22 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: 
30mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository every other night, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety/depression), Probiotic Multivitamins 
                             
                             


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 5/20/2009 4:36 PM (GMT -6)   
You ask really challenging questions!

For me, knowing the fatigue will not last forever is important. Thinking of all the enjoyable things in life I look forward to pursuing, or concentrating on being able to care for the people (or critters) who care for me also helps. Things like that.

It's not easy, but based upon your posts, I can tell you have the spirit to work your way through it.
Diagnosed with UC in 1990.

Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)

Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.

Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/20/2009 5:04 PM (GMT -6)   
ickypoo said...
You ask really challenging questions!

For me, knowing the fatigue will not last forever is important. Thinking of all the enjoyable things in life I look forward to pursuing, or concentrating on being able to care for the people (or critters) who care for me also helps. Things like that.

It's not easy, but based upon your posts, I can tell you have the spirit to work your way through it.

Haha sorry for my challenging questions, but its cos I know all of you on here have good brains to be able to answer them for me :P ...And you always do, its so helpful and makes it much easier to get on with this frustrating disease. smilewinkgrin
22 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: 
30mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository every other night, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety/depression), Probiotic Multivitamins 
                             
                             


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/20/2009 6:00 PM (GMT -6)   
Reading your signature, you seem to be on some of the same meds as me as far as the heavy hitters.... the pred and azathioprine can certainly leave the dark bags under your eyes.... almost immediately after taking the azathxxx i started sleeping till noon on the weekends and had huge dark bags under my eyes looking like someone "kicked me arse" as you brits would put it devil ... i would imagine that your blood may have been checked for b-12 with the normal blood work for the azathxx but look into it because it could help.... my b-12 therapy hasnt "kicked in" 100% yet, and i still have the fatigue - probably from the drugs and flare still...
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided UC, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Test Flyer
Regular Member


Date Joined Feb 2009
Total Posts : 27
   Posted 5/20/2009 6:40 PM (GMT -6)   
ickypoo said...
You ask really challenging questions!

For me, knowing the fatigue will not last forever is important. Thinking of all the enjoyable things in life I look forward to pursuing, or concentrating on being able to care for the people (or critters) who care for me also helps. Things like that.

It's not easy, but based upon your posts, I can tell you have the spirit to work your way through it.

 ickypoo - - you've had your disease about as long as I have, and also take Azulfidine, like me.  How has your symptoms changed since diagnosis?  and do you think the Azulfidine works well enough?  I find that taking the Azulfidine reduces my symptoms to only a couple of BM's in the morning (on a good day.. more on a bad day, with some bleeding and mucous) with lots of gas.  I guess what I'm getting at is are you better off now than in 1990?  I'm going for a colonoscopy next week (i put it off for 5 or so years and now I'm really nervous of what they'll find in there).  Thanks for the input.
Left side UC
diagnosed 1990
Azulfidine medicated
 


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 5/21/2009 5:30 AM (GMT -6)   
Test Flyer said...
ickypoo - - you've had your disease about as long as I have, and also take Azulfidine, like me. How has your symptoms changed since diagnosis? and do you think the Azulfidine works well enough? I find that taking the Azulfidine reduces my symptoms to only a couple of BM's in the morning (on a good day.. more on a bad day, with some bleeding and mucous) with lots of gas. I guess what I'm getting at is are you better off now than in 1990? I'm going for a colonoscopy next week (i put it off for 5 or so years and now I'm really nervous of what they'll find in there). Thanks for the input.


I've been fortunate in that for most of the time since diagnosis I have been in remission and have lead a normal life - so I guess the azulfidine (enteric form) had been working well for me. It was only after a flu shot last October that things went to hell. I had the most serious flare of my life - was even hospitalized for a few days to get things under control.

Now I'm more or less back to where I stared - at least drug wise. Frankly, my goal is to get off all my medications, including azulfidine. That's the main reason I am experimenting with probiotics and raw milk.

I wouldn't get too stressed about your colonoscopy. Your symptoms sound relatively mild. Personally I think it is better to know exactly what is going on in your gut and not have to speculate. Knowledge is power.

Best Wishes to you both (Test Flyer and qwerty1)
Diagnosed with UC in 1990.

Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)

Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.

Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


chattyhunter
Regular Member


Date Joined Apr 2009
Total Posts : 20
   Posted 5/21/2009 10:42 AM (GMT -6)   
hi! im in the same situation, ive been put on 2 months of steroids (even though i was told no more steroids!) and im one week in, i feel great exept very windy, a bit constipated lol, and very very tired. dont worry the symtoms will pass though. I just take each day at a time, because although the steroids make me feel better i cannot sleep at all, feels like i have sunstroke and the night sweats are terrible, also i too feel out of it, best thing to do is try and plod along and take your time doing things. it is hard though!

diagnosed with colitis 3 years  ago
taking 125mg azathioprine
12 asacol a day
can no longer use steroids due to bones thinning
thinks colitis is a pain in the arse!
 
female age 29
i live in the uk

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 7:22 PM (GMT -6)
There are a total of 3,005,260 posts in 329,204 threads.
View Active Threads


Who's Online
This forum has 161767 registered members. Please welcome our newest member, In-Pain.
275 Guest(s), 11 Registered Member(s) are currently online.  Details
SoMuchFun, In-Pain, Mind body spirit, bobmars, Michael_T, auzzie, 3timechamp, Pratoman, 18yearsandcounting, John-Can, fiddlecanoe