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Posted 11/26/2018 10:00 PM (GMT 0)
Hi all,

Just a quick question I'm hoping you can help with. I've been in a bad flare the last 18 months and thankfully my uc is pretty much under control now, but I feel completely exhausted and my mood is often a little low too which is unlike me. When I wake up I'm tired although it's not the yawning tired, more like a complete lack of energy & motivation. My limbs feel heavy.

I don't think I'm anemic again as when I was in hospital 2 months ago, I had an iron infusion and I'm guessing it couldn't drop that quick when I haven't been bleeding.

about 6 weeks ago I managed to taper off pred completely after 18 months usage. Do you think it could be down to that and I'm still adjusting to life without steroids?

I know a lot of people get fatigued with their disease but I've never suffered with it before unless I've been badly flaring or anemic
Posted 11/26/2018 11:22 PM (GMT 0)
I'd ask my PCP for some blood work to see if you still have low hemoglobin, I had a blood transfusion and and iron infusion and I was still anemic ... just not as bad as it was
Posted 11/27/2018 12:04 AM (GMT 0)
Oh ok, thanks for that, I didn't realise that was possible. I'll give them a call today
Posted 11/27/2018 11:17 AM (GMT 0)
Sometimes it can take a while for our bodies to reset after prednisone. I do agree you should have some bloodwork done. Get your thyroid levels and glucose levels checked, too.
Posted 11/27/2018 4:10 PM (GMT 0)
It's possible that you're still anemic and that would explain the fatigue, you can get a blood test to check your blood-iron levels and ruleout/confirm this.

It's possible you have adrenal-fatigue/withdrawal after the prednisone taper. Prednisone is synthetic-cortisol, while we are on high doses of pred the adrenal system ceases producing cortisol, as we taper the adrenals are supposed to wake up again and begin normal cortisol production. If the adrenals are still asleep, or under-producing cortisol then we will experience fatigue and body aches and pains (that is prednisone withdrawal and/or adrenal-fatigue which are multiple phrases for the same thing).

If you are not fully recovered a month post-prednisone then I would reach out to an endocrinologist-specialist doctor who deals with hormones within the body, of which cortisol is a hormone. An endocrinologist can measure your blood cortisol levels and see if there is a problem, and intervene as is needed. Often they put you temporarily back on hydro-cortisone in a more controlled fashion taper you very, very slowly and measure cortisol production throughout.
Posted 11/27/2018 6:57 PM (GMT 0)
Have complete bloods, not just minimal.
Have your D and B12 done for sure.

Have you cut out any foods?

q
Posted 11/27/2018 7:50 PM (GMT 0)
No I haven't cut any foods. I've been stuck on pred this whole flare which has been masking everything, so it's difficult for me to find out what foods affect me in a positive/ negative way. It's something I've always struggled with finding out as I'm either sick and on pred, or well and can eat anything.

I have an appointment with my dr for some bloods today. I didn't think it could be anemia with the recent infusion but it does feel similar, hopefully it'll be that as I've no idea where to find an endo dr here in Australia, but I'll bring this up at my appointment today too.

Thanks for all your replies, hopefully I can get this sorted soon as being so tired all the time is no fun with two toddlers to chase after, they are tiring enough!
Posted 11/28/2018 3:19 AM (GMT 0)
ya, if you haven't tried any food elimination since you were dx'd, it might a good idea to give it a go - giving up certain foods for a bit won't hurt you in the least and it might just help - only one way to find out ;-)

some folks actually do quite well avoiding certain foods -
Posted 11/28/2018 11:24 AM (GMT 0)

TroubledTurds said...
ya, if you haven't tried any food elimination since you were dx'd, it might a good idea to give it a go - giving up certain foods for a bit won't hurt you in the least and it might just help - only one way to find out ;-)

some folks actually do quite well avoiding certain foods -

I have attempted it but I just can't figure it out. When im well I can eat anything without having any problems, but when I get sick I go down hill really quickly and am literally pooping all day (25+), even if I live on just broth & chicken, it makes no difference.
Inevitably I'll end up on pred within a couple of weeks which will mask all my problems and I can eat anything again, even if I eliminate something at this point, I can't see if it's made any difference or if its the pred. Does that make sense?
I'm not sure how to work out what foods work for me under these circumstances, any suggestions?
I understand some people do an elimination diet but if I do one when I'm in remission there is no difference. I don't have the time to try one when I start flaring as things get bad too quickly and then when I'm on pred I can't tell either way either. I'm really stuck with the diet thing, I've found nothing to have an affect either good or bad yet and I've had this disease for a few years now
Posted 11/28/2018 2:19 PM (GMT 0)
I've been at this whole UC thing for about 8 years now, have tried various diets and used food diaries (to try and correlate symptoms with food intake) and never found anything useful from those efforts. I know some swear by certain diets. It is just UC in a nutshell. You have many possible tools to try within your toolbox, but no guarantee that any one tool is universally perfect for every job. Try and see, and move on when it isn't the best treatment for where you are at.

When you're flaring badly pretty much everything you eat causes discomfort and awful symptoms. I'd say trying diet changes during the worst of a flare (like your described 25+ bms a day) is almost a futile endeavor. Much easier to attempt diet mods when having mild symptoms and when you need a slight carry/assist over the goal line.
Posted 11/28/2018 4:28 PM (GMT 0)

ausruby said...

TroubledTurds said...
ya, if you haven't tried any food elimination since you were dx'd, it might a good idea to give it a go - giving up certain foods for a bit won't hurt you in the least and it might just help - only one way to find out ;-)

some folks actually do quite well avoiding certain foods -

I have attempted it but I just can't figure it out. When im well I can eat anything without having any problems, but when I get sick I go down hill really quickly and am literally pooping all day (25+), even if I live on just broth & chicken, it makes no difference.
Inevitably I'll end up on pred within a couple of weeks which will mask all my problems and I can eat anything again, even if I eliminate something at this point, I can't see if it's made any difference or if its the pred. Does that make sense?
I'm not sure how to work out what foods work for me under these circumstances, any suggestions?
I understand some people do an elimination diet but if I do one when I'm in remission there is no difference. I don't have the time to try one when I start flaring as things get bad too quickly and then when I'm on pred I can't tell either way either. I'm really stuck with the diet thing, I've found nothing to have an affect either good or bad yet and I've had this disease for a few years now


you experience the same cycles I did till I changed my eating habits - i'd flare after eating anything I wanted, go on meds, get better, go back to the same diet, rinse and repeat - haven't been on any meds for 6+ years by doing the things in my signature -

will my method work for you - hard to say - but again, only one way to find out - just do something different than what you have been doing -
Posted Yesterday 10:58 AM (GMT 0)

iPoop said...
I've been at this whole UC thing for about 8 years now, have tried various diets and used food diaries (to try and correlate symptoms with food intake) and never found anything useful from those efforts. I know some swear by certain diets. It is just UC in a nutshell. You have many possible tools to try within your toolbox, but no guarantee that any one tool is universally perfect for every job. Try and see, and move on when it isn't the best treatment for where you are at.

When you're flaring badly pretty much everything you eat causes discomfort and awful symptoms. I'd say trying diet changes during the worst of a flare (like your described 25+ bms a day) is almost a futile endeavor. Much easier to attempt diet mods when having mild symptoms and when you need a slight carry/assist over the goal line.

Yes I agree, you need to be in a milder flare to get the best info out of diet modification. I've never been in a milder flare and I think that's why I've struggled to work the diet thing out. My uc seems to go on and off at the flick of a switch, one moment I'm ok, then really sick and then after many failed attempts at weaning pred, eventually one day it just works and I'm ok again!
Posted Yesterday 11:09 AM (GMT 0)
you experience the same cycles I did till I changed my eating habits - i'd flare after eating anything I wanted, go on meds, get better, go back to the same diet, rinse and repeat - haven't been on any meds for 6+ years by doing the things in my signature -

will my method work for you - hard to say - but again, only one way to find out - just do something different than what you have been doing -

Wow six years med free, that must be amazing to find something that works so well for you. Your diet/ lifestyle sound incredibly healthy, I also try to eat well but I haven't managed to kick the bread yet, it is my weakness but certainly worth it to get rid of all the meds.
Posted Yesterday 2:16 PM (GMT 0)
Every boy wants to be a NFL quarterback when he grows up, but few get to be one as adults. Same goes with all of this med-free with UC business, very few of us succeed in being med free with UC (although there are a few strong proponents who can). Just remember the first rule of UC: what is one's miracle treatment does absolutely nothing for another, and might even make another's symptoms a whole lot worse.
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