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

Jenn C
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 6/12/2009 2:21 PM (GMT -6)   
I can deal with running to the bathroom all the time, I can deal with the pain and arthritis, but I am sooooooooooooooooooo tired all of the time and that is really hard to deal with. I work full time, go to school part time, and have 3 kids, so I expect to be tired, but since this has all started, it is like I can barely keep my eyes open at work and that is with 8 hours of sleep. I am trying to not over caffinate, but what else can I do to combat the fatigue? I already take multi-vitamins and extra vitamin C and b12.

I can not afford to quit my job and they don't offer part time hours, and I am so close to finishing school and really need to finish, but if I quit I'll have to start paying my student loans back without the benefit of a raise for having a degree.

Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 6/12/2009 2:28 PM (GMT -6)   
I agree, I'm tired, too.

I also work full-time. I'm not going to school, though, and I've only got one kid. I have had a heck of a time sleeping > 3 or 4 hours at night, thanks to good ole Prednisone. Hopefully my taper goes well and I get some sleep soon.

Jen O
Age 34
Diagnosed with UC September 2008
Current Meds:
Prednisone 30 mgs in the am, 10 in the pm
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 6/12/2009 3:14 PM (GMT -6)   

I reaallllly reallly struggle with fatigue, its one of my worst symptoms. Thankfully my managers are incredibly understanding and allow me to go home if I need to, and are also amending my contract so I don't have to work more than 3/4 days without a day off, so that I don't get too tired.

I haven't really worked out a way to combat the fatigue yet but I do try to get as much sleep as I can, I also make sure I do simple things like get my 5 fruit and veg a day, drink loooads of water. I also plan my week out so that I don't do too much in one go, for example - generally I won't go out on any of the evenings that I have worked during the day unless I have a day off the next day. And I try to keep my days off for resting or just doing small things, rather than planning them out with lots of activities.

I find this very difficult mentally as I used to be the sort of person that went out quite a lot and never used to worry, but you gotta keep positive :)


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: 
20mg 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 
                             
                             


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 6/12/2009 7:56 PM (GMT -6)   

I understand completely how you guys are feeling.  When I had UC it was just plain ridiculous how tired and fatigued I always was.  I too worked, went to school, got up with my son at least once a night, and then there were the constant bathroom breaks during the night b/c of the UC.  I believe I averaged anywhere from 2-4 hours of sleep each night for many many months.  It is so hard, isnt' it?

I honestly never really found anything to help my fatigue.  I over caffinated as well, but that just got me through portions of my day.  I downed the dissolvable B12 tabs throughout the day in addition to taking a B-complex morning and night. 

UC really just kind of sucks the life right out of you.  Then the treatments and medications you are put on attack your body while trying to repair it.  Such a vicious cycle.

I'm sorry you guys are suffering right now.  I remember how that feels all too well. 

I just wanted you to know that you're definitely not alone, and that my heart goes out to you.  How are your treatments going?  Success???

smurf
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


storysinger81
Regular Member


Date Joined Jun 2009
Total Posts : 82
   Posted 6/12/2009 8:12 PM (GMT -6)   
The fatigue I had last week and this week have been the worst part of the disease so far. I agree the water has been helping and do avoid caffeine (it's hard at first, but it disrupts your body too much).

I'm feeling better now, but it's still a struggle.

Take care of yourself as much as you can. Take a nap when you need it. I hope you have some support and help for your children so this is possible. Ask your professors for some extra time if you need it.

Good Luck!
~Diana
 
28 year old American in South Korea.
Diagnosed with Mild UC May 2009.
Currently on Asacol 2 pills/3 times a day and nightly suppositories of the same.
Stage One:  Food Journalling and Research about UC
Preparing to begin Vegan Healing Diet


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 6/13/2009 9:13 AM (GMT -6)   
I am tired a lot too. I was very anemic a few months ago and taking large doses of iron has helped with my fatigue but it hasn't cured it. Maybe you should have your iron checked.
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...


gleam
Regular Member


Date Joined May 2009
Total Posts : 28
   Posted 6/13/2009 12:01 PM (GMT -6)   
I know all about the fatigue. I felt like a zombie after about 2 o'clock in the afternoon and especially after each BM. I used to drink anything with caffeine in it and drink Monster energy drinks so much that I could down one and go right to sleep.

I decided to go for a drastic change with my diet eight days ago. I cut out all non-natural sugars including the dreaded high frutose corn syrup, caffiene, and most starches from my diet. I drink a lot of water and suppliment that with Juicy-Juice. I try to eat something every few hours, usually Koshi's TLC cereal bars. My energy levels have never been this great in a decade. I'm not getting headaches from a lack of caffiene either. =)

It's not a fun diet but it's working so far (for the energy anyhow.)

quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 6/13/2009 12:58 PM (GMT -6)   
JennC...what meds are you on at this time?

Seems your superwoman energies are understandably waning...do make sure you get blood tests done to check iron/B12 as well as thyroid and Vitamin D.

I would suggest you take vitamin D as well anyway.

Do you have enough supports at home...maybe someone can come in and help with some of the stuff around the house?

ARe you taking classes throughout the summer?
 
Are you taking in enough food with proteins and carbs to help with energy levels?

I do hope you're getting holidays..maybe that will be a time for you to regenerate and your UC will be improving by then.

q


*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Jenn C
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 6/13/2009 4:06 PM (GMT -6)   
I have not gotten a diagnosis yet. My primary Dr is sure it is UC but the GI she sent me to thought just IBS. I have had an IBS diagnosis for over 14 years and never experienced any of these symptoms I've been having for over a year now. The GI Dr. Did a colonoscopy and biopsies a week ago but I will not know the results until June 24th. He did say there was inflammation and a large polyp which he removed. He did 12 biopsies so hopefully I will know something from those.

I am taking summer classes, I rest as much as I can on the weekends, take naps when I can. My husband helps out, but he goes away on business trips and I have no help then, no close family, they are all over 5 hours from me. I am supposed to go next week to my primary Dr. for blood work, not sure what all she is checking but I know Thyroid is one since she checks that every year for me.

Right now I am on HYOMAX-SL SUB 0.125MG, Tylenol Arthritis, Zyrtec, and an oral contraceptive pill, not much help for the UC like symptoms I am experiencing.

Post Edited (Jenn C) : 6/13/2009 3:16:13 PM (GMT-6)


windows63
Regular Member


Date Joined Mar 2009
Total Posts : 22
   Posted 6/17/2009 11:12 PM (GMT -6)   
Very tired. I have to slow down when I walk. Stairs kill me. I came home from work the other day early went right to bed and slept all night. I always nap after work. Shortness of breath too.

AngelaPaige
Regular Member


Date Joined May 2009
Total Posts : 28
   Posted 6/18/2009 1:36 PM (GMT -6)   
it is sooo nice to have people who relate to this. I am 20 years old and there have been times that i am out of breath after getting dressed, going up my stairs, or spooning out a salad at work (deli lol). It feels so unhealthy since im so young and i feel like other people don't believe how tired i really feel. I must say though that luckily lately i am feeling great and better than I have in a very long time. I am so grateful to have these weeks of energy. :) I hope all of you can too.

Jenn C
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 6/18/2009 7:48 PM (GMT 0)   
My energy and basic feeling better really peaked when I was on prednisone, I know you can't stay on it for a long time, but I think I may ask to go on it for another round. It's been 6 months since I took it and only then it was for 1 month. I am starting water aerobics soon, hoping it will help my aches and joint pain. I've done it before and it was really fun although it has been 8 years and I am about 50 pounds more heavy than I was then.

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 6/18/2009 4:37 PM (GMT -6)   
I understand. I am soooooo tired too.  I just stopped pred and even when I was on that I was tired.  My next option is remi(I see the doctor on the 26th).  I have three kids also and it sucks.  I go to sleep about 9:00 at night and usually sleep until 7-7:30(when the kids wake me up).  By about 9:30 in the morning I can barley keep my eyes open.  I take about a 2-3 hr nap and I still wake up tired.  It's pathetic.  I'm 29yrs old and I feel 80.  I feel your pain. UC is horrible.
mad   You just walk around in a daze all day.  What kind of life is that.  It's hard to concentrate.  Hopefully it gets better.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 7:49 AM (GMT -6)
There are a total of 3,005,645 posts in 329,247 threads.
View Active Threads


Who's Online
This forum has 161792 registered members. Please welcome our newest member, hanry.
272 Guest(s), 4 Registered Member(s) are currently online.  Details
cashlessclay, jberda1, Bloodyhell, Normal59