Never felt "sick" this long before

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/10/2009 10:19 AM (GMT -6)   
I guess I always had flares I could function through but over the last month I spend more time in bed, with fevers, and absolutely exhausted than ever before.
This feels like a prolonged major sickness and I am getting so behind with chores and stuff.

How long does it usually take you to start feeling energetic and "normal" again!
Diagnosed with Ulcerative Proctitis at 24 years old 1995/ Ulcerative Colitis in 1998.
In remission from 2005 - 3/2009.

Hospitalized for flare 3/2009.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/10/2009 10:34 AM (GMT -6)   
I'm sorry to hear you're feeling so sick! I didn't realize just how little energy I had until I started on the pred and got to feeling much, much better. But, I went from being pregnant and not sleeping well, to being a sleep-deprived new mommy, to being a sick sleep-deprived new mommy! So, I'd been so tired and run down for so long, I forgot what normal was like for me!

Have you had a blood test lately? Maybe you're a little bit anemic.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 4/10/2009 1:28 PM (GMT -6)   
Your sig indicates you were flaring bad enough to be hospitalized last month, so I'm not surprised you're still feeling low. In my experience, the more severe the flare, the longer it's going to take to achieve remission.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 4/10/2009 1:43 PM (GMT -6)   
My sympathies to you. I was hospitalized last year around this time (this time of year is not good for me for some reason-but I haven't been able to connect the dots as to why that is, if there is a connection, but I digress), was given two units of blood (anemia was the reason for the hospitalization in the first place) and was put on pred. Before going to the hospital, I couldn't do much of anything. I expected, after two units of blood and being put on pred and then starting a trial for Humira, which immediately stopped all bleeding, that I would feel great and full of energy. But that was far from the case.

My hemoglobin levels were still extremely low after the transfusions. I was given an iron tranfusion as well, and was on iron for months at home and was on an iron rich diet as well. I wasn't given the green light to go off the iron until my levels were normal again, and that took probably 3 months. I got worn out VERY easily, and it wasn't until a couple of months later that I really started getting my energy back. The pred did help give me some false energy (at least it kept me from sleeping, not that I was bouncing off the walls or anything), but really, it took a long time. I was hospitalized in late March, and when I threw my older daughter's 3rd birthday party in late June, I was finally getting to a point that I didn't have to sit down after doing one chore.

I completely understand your frustration! You want to get back to your life, but your body just won't let you do that. But try to listen to your body and take it easy. As difficult as it is to see the chores backing up and the house a mess, the last thing you need is to push yourself too far and end up back in the hospital.

I'm sorry you have had so many problems recently, and I hope you get your energy back soon!
Laura
 
33 years old, stay at home mom of 2 girls, ages 3.5 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Canasa suppositories-1000mg nightly for recent flare


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/10/2009 7:48 PM (GMT -6)   
Have you had a chem screen to see if you are anemic or anything like that, and have you thought about B-12 shots? I think they helped me.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Flaring, seasonal? Back on prednisone, tried to taper but now back up to 30 after several really bad days. Humira denied, waiting for approval to start Remicade. 


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 4/14/2009 12:11 PM (GMT -6)   
Shelliesv;
I read your post and can relate. I've been in a moderate flair for about 8 weeks - and am very weak.
My GI said my recent blood tests show a hemoglobin count of 9. I've been lower (7) , as I know many who have UC get very anemic, but 9 makes a grown, normally healthy guy, very tired.

My thought for you was, my GI doc has me on FERREX 150 FORTE, seems to be helping. It's a combo of Iron & B-12.
Also, a health food guru we know, suggested fresh beet juice mixed with spinach, which I get from the local health food store.

Supa-
with all due respect, your hemo must have been dangerously low to get a transfusion. As scarey as some of the potential side effects are from my drugs, so much recent research has been done on blood transfusions, and no-blood fluids and meds are steadily being approved. There are volume expanders and drugs that increase red blood cell production. Blood transfusions hold serious potential complications to patients.
An MD friend, underwent serious surgery a few years back. She told her husband, if things went bad, she was not to receive blood, unless her RBC dropped to like 3. Being an MD, she was well aware of the risks.
Daily: 100mg Immuron, 6x400mg Asacol.
Monthly: inject 400ml CIMZIA
5-lac Probiotic, Starting VSL-3, Spinach and Sunflowerseed Diet,
Omega Oil, Flaxseed Oil, Oil of Oregano, daily vitamins, strictly no alcohol.
Prayer.

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