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Is being knackered normal 3 months after surgery?

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Posted 5/24/2013 9:42 PM (GMT 0)
As far as I know I'm still Crohn's-free and my haemoglobin was good at the last blood test, so no anaemia. And yet I have no energy whatsoever. Think I'm gonna email my stoma nurse and get her opinion on it, too.

Still so wish I never needed this surgery.
Posted 5/24/2013 11:14 PM (GMT 0)
I didn't have surgery but I am so tired on a daily basis that I can barely function.
Posted 5/24/2013 11:23 PM (GMT 0)
Do you have active disease?

That would do it :-/
Posted 5/25/2013 2:52 AM (GMT 0)
NCOT, I am 8 months out and still completely exhausted. In bed by 9 every night...well except tonight. We went to,see a movie.
Posted 5/25/2013 4:12 AM (GMT 0)
In a word, yes. It took me many months to get my stamina/energy back after both of my major abdominal surgeries.

Don't forget that your body is still adjusting to the 'new', shortened digestive system. Your small intestine has to learn to do all the work as far as absorption of nutrients, vitamins, minerals, fluids, etc.

NCOT, have you had your vitamin and electrolyte levels (including magnesium) checked recently?
Posted 5/25/2013 2:55 PM (GMT 0)
Thank you both. Not that I want anybody else to have zero energy, but at least I know I'm not entirely alone in not bounding around like an 8-week-old puppy :-/

The thing which bothers me a bit is that everyone else will probably expect me to be 'over' surgery by now. Saying I think it will take a year to get over this fully sounds like an excuse, and yet I'm starting to really believe that. My stoma nurse did say once that it took people a year to feel like their old selves after surgery, but that was a while ago and I don't remember it very clearly.

@nenagirl - Nah. Well not entirely. I did have my B12 level checked some weeks ago and that was somewhere in the low 300s. It was in the low 200s a year or so ago, so it has gone up, probably because - thanks to Pred - I've been eating more. But I know it'll be at risk of slowly dropping again, as I had a portion of my terminal ileum removed.

Electrolytes have never been checked as far as I know.
Posted 5/25/2013 3:17 PM (GMT 0)
It took a full year for me to lose the fatigue.

Sue
Posted 5/25/2013 5:30 PM (GMT 0)
For anyone that has been on long-term or high dose corticosteroids there is the risk/chance of a relatively unknown condition called "adrenal insufficiency."

Symptoms: Unrelenting fatigue; "brain fog" and difficulties with cognition; musculoskeletal pain/aches; varied digestive unease; changes in skin/hair color; inability to adapt to stress; low blood pressure; heat/cold intolerance.

Cortisol, made by the adrenal glands, is suppressed in the presence of exogenous corticosteroids. Cortisol is used by virtually ever cell in the body.

Adrenal insufficiency is not to be taken lightly. I have both primary and secondary adrenal insufficiency.

A blood draw and baseline cortisol level + baseline ACTH level will provide first clues. A basic test that can be quite informative.
Posted 5/25/2013 6:22 PM (GMT 0)
Holy crap, I seriously have most of those symptoms. I don't think my skin or hair has changed colour, though. Does adrenal insufficiency go away if it was induced by steroids but you are no longer taking them? I've heard of it but don't know much about it.

Edit: Sorry suebear. Thanks! Wouldn't you have had two surgeries in a year though? Or are you taking the date from your last operation rather than your first?
Posted 5/25/2013 9:29 PM (GMT 0)

(Seashell) said...
For anyone that has been on long-term or high dose corticosteroids there is the risk/chance of a relatively unknown condition called "adrenal insufficiency."

Symptoms: Unrelenting fatigue; "brain fog" and difficulties with cognition; musculoskeletal pain/aches; varied digestive unease; changes in skin/hair color; inability to adapt to stress; low blood pressure; heat/cold intolerance.

Cortisol, made by the adrenal glands, is suppressed in the presence of exogenous corticosteroids. Cortisol is used by virtually ever cell in the body.

Adrenal insufficiency is not to be taken lightly. I have both primary and secondary adrenal insufficiency.

A blood draw and baseline cortisol level + baseline ACTH level will provide first clues. A basic test that can be quite informative.

I have secondary adrenal insufficiency also. After all the years on/off pred my adrenal gland was suppressed to the point of not being able to function properly on its own when the oral pred (= synthetic cortisol) was stopped.

NCOT, part of the reason I asked about electrolytes was re: the adrenal gland and how it's functioning now (or not). The other part of my resoning was because without a colon or terminal ileum, the whole delicate balance of fluids, including electrolytes, is upset. Regaining that balance can be challenging but is achievable.

Electrolytes are more than just potassium, chloride, calcium, sodium, magnesium and phosphates. Folic acid, B12 (and other vitamins/minerals) all play an important part in the balance.

It's important that your dr. realize that all the electrolytes levels need to be tested (not just the common ones) as well as those vitamins and minerals that affect electrolyte balance (there are many).

My biggest challenge today is maintaining electrolytes.
Posted 5/26/2013 5:20 AM (GMT 0)
My recovery was a full year from my second surgery.

Sue
Posted 5/26/2013 11:43 AM (GMT 0)
I feel good, but I lose my energy fast. I'll start doing something I normally would do easily, and can't finish it. I am getting ready for step 2 surgery this week and want to get things in order, but I'm finding my desire for a frantic pace and getting through my to do list is not in keeping with what my body wants :) My doc said a full year from final surgery to feel "normal." You are definitely not alone!
Posted 5/26/2013 1:38 PM (GMT 0)
After 6 months my husband's energy level was greatly improved but I would say the year is kind of a good indicator of getting back to what he felt as "normal" even though he has a new normal with his permanent ileostomy.
Posted 5/26/2013 2:46 PM (GMT 0)
Get your minerals checked I'm 9 months out from two surgeries and still suffering from magnesium and many other deficiencies
Lucky L
Posted 5/26/2013 5:30 PM (GMT 0)

PSUDOC said...
I feel good, but I lose my energy fast. I'll start doing something I normally would do easily, and can't finish it. I am getting ready for step 2 surgery this week and want to get things in order, but I'm finding my desire for a frantic pace and getting through my to do list is not in keeping with what my body wants :) My doc said a full year from final surgery to feel "normal." You are definitely not alone!

That's exactly how I feel. I get all raring to go in the morning and do about half of what I had planned... and then I have to go home and sit around doing nothing cool

ps not to derail but GOOD LUCK with step 2!!!
Posted 5/27/2013 1:13 AM (GMT 0)
I'm glad to hear from others that the lack of energy is common.

This may be an urban myth, but I read something that was supposedly by an endocrinologist that when going off prednisone, if there's some adrenal insufficiency, sitting in the sun for 20 minutes helps. So I've been doing that whenever possible. What the heck, even if it doesn't help it feels good to sit in the sun.
Posted 5/27/2013 2:20 AM (GMT 0)
NCOT-
I agree that without your terminal ileum that you need to keep a closer watch on your electrolytes as your malabsorption can affect those and cause horrible symptoms, not to mention, low levels if potassium (ESP) are dangerous. I do not have my terminal ileum as well as the opposite of Adrenal insufficiency...I have an excess of Aldosterone, another mineral corticosteroid produced by adrenal gland and my low potassium and wasting of potassium is actually one of symptoms that had them looking into endocrine system. I am having a terrible time with this new endocrine stuff and agree its not to take lightly and should get some labs.

I also agree it takes a full year to feel yourself. I've never really gotten to that point, with 8 surgeries in five years and now this I'm still beyond exhausted, but 3 months is nothing. I hope all is well and your enjoying this holiday wknd!
Posted 5/27/2013 4:35 PM (GMT 0)
Thanks guys.

I'd have to push for electrolyte/vitamin tests, or for testing for adrenal insufficiency, and I don't feel up to dealing with doctors who don't already know this stuff. I already asked my GP for a thyroid function test which I now regret, as I doubt a low thyroid is my problem.

I'm just tired and depressed again.

Edit: Sorry if that sounded a bit, well, depressed... :-/

Post Edited (NiceCupOfTea) : 5/27/2013 10:39:20 AM (GMT-6)

Posted 5/27/2013 11:13 PM (GMT 0)
You can get an inkling if the pituitary/adrenal axis has been disrupted with a basic blood (early morning 7 am) cortisol level.

If the cortisol level is low or even low normal then it is wise to look a bit closer with what is called an ACTH stimulation test (ACTH is the hormone produced by the pituitary that "tells" the adrenal glands to make cortisol).

Adrenal insufficiency can be a slippery downhill slope. Clinical adrenal insufficiency is not a snap shot moment where the adrenal glands stop functioning. Rather it usually presents as a slow loss of adrenal function, waxing and waning symptoms, waxing and waning blood chemistry values. Cortisol is life-essential and the pituitary gland/adrenal glands do not relinquish easily.

Anyone (everyone) who has had long-term or high dose exogenous corticosteroid use should keep adrenal insufficiency in their mind if/when vague lingering symptoms persist. It is not on MDs radars and is often undiagnosed . . . all the while the person affected has a poor/marginal quality of life.

I offer this as my diagnosis (both primary and secondary adrenal insufficiency) was long in being identified. A sad story. I hope better for others.

The learning: Keep adrenal insufficiency on your personal radar.

- Karen -

Post Edited ((Seashell)) : 5/27/2013 5:17:17 PM (GMT-6)

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