Seeking Tips for Post-Ileostomy Exhaustion

Hey guys, going on 7 months with a permanent ileostomy. I am still just as tired as I was when I was very sick. I could sleep the day away if someone would let me. It's not full body exhaustion, it's a feeling of being so tired and having a sleepy head. Any tips on how to pull out of this rut or hole I'm in? My family is expecting to see changes, and while I feel better in so many areas, this won't seem to let go of me. Thanks for any help you can provide.

Hi Feb, have you had any blood workups done since you've got your ileo? Your B vitamins count might be low. Also, when my wife would come home from work, she would lay on the couch and doze off and be lethargic on waking up. As it turns out, her thyroid was not producing enough hormones. Good luck.

Hello Feb9HH.
Thank you for posting on the subject of ‘exhaustion’ as this can have a devastating effect upon people’s lives and, in my experience; the medical profession are not very efficient at identifying the causes or the cures.
At one time, I can recall only too vividly trying to explain to the doctor that I was experiencing ‘different types’ of tiredness and exhaustion. But, because they did not know what was causing it, they insinuated that it was psychological rather than physical.
Fortunately, I know a great deal about mental health issues, so I did not accept the mental health diagnosis and set about trying to identify what was amiss for myself.

The first thing I found was that I suffered from sleep apnoea. After badgering my GP to have my theory tested properly, the specialist hospitals found that this was indeed the case and I was given a Continuous Positive Air Pressure (CPAP) machine. From the very first night of using this device, my exhaustion was markedly improved and I ceased falling asleep at inappropriate times during the day.

This device did not stop another type of exhaustion which intermittently came on at inexplicable moments during my day. I would feel so tired that I would have to stop & sit down for a period of time to ‘recover’ before I could carry on with the day. On one occasion, when in hospital, the nurses expressed their concern for my very low blood pressure. This was the first time I had been made aware of this condition and one of its many symptoms was the sort of exhaustion and/or passing out that I had previously been suffering.
With this knowledge, I was able to do something positive to ‘manage’ the condition so that, as and when it happened, I could take appropriate action to mitigate the worst effects.

The third type of tiredness arose from the chronic pain and discomfort emanating from my anus. People(like doctors) who may not suffer personally from chronic (long-term) conditions, are prone to disbelieve that they can cause tiredness and exhaustion. When conditions are temporary , there is much more ‘hope’ and ‘belief’ that things might get better; When conditions are ‘chronic’, it is much more difficult to retain that hope and belief – because it can often be ‘delusional’.
After my operation and stoma , this type of tiredness disappeared along with the original physical condition.
There was just one other type of tiredness that I suffered from, and that was accompanied by severe headaches; or more accurately ‘eye-aches’. Now! I might have diagnosed this as a form of migraine, were it not for a fortuitous observation by my wife that my glasses were (in her words) ‘filthy’. I dutifully cleaned the lenses and Hey-presto! The ‘eye-ache’ and accompanying tiredness was resolved.

Another story that springs to mind in this regard is that of a friend of mine who commiserated with me at the time because she was having similar symptoms of exhaustion. She was less fortunate than me, in that she had ‘confidence’ in the doctors when they diagnosed an ill-defined ‘mental’ (psychosomatic) condition. Indeed, she spent a period of time on a mental health ward of the local hospital taking all sorts of psychotropic drugs which did not help at all. Eventually she was diagnosed with Coeliac Disease and went onto a wheat-free diet. The ‘cure’ for her tiredness was miraculous.

There are, of course many other conditions like diabetes, anaemia, etc,  that can also cause symptoms of tiredness.  

The moral to this story must surely be: to pursue every avenue for potential physical causes, before concluding that exhaustion might be psycho-somatic.

As is my wont, I have written some rhymes on the subject of tiredness, so I will share just three of these that seem to be most pertinent to the field of stomas:

Best wishes
Bill

I GET TIRED.

My chronic illness makes me tired
and so it’s hard to get inspired.
So what I choose to do instead
is think that I should stay in bed.

But laying there I am inclined
to get more tired in my mind.
Then as that tiredness is built
I start to feel a twang of guilt.

To myself I chide and scoff
there must be people much worse off.
Just look around and you will see
there’s many people worse than me.

But then my mind will once again
focus on my chronic pain.
And whilst I may have empathy
my instinct is to apathy.

Because I do not want to shirk
I’ll force myself to do some work.
That’s in the hope that I’ll get tired
in ways that might be still admired.

So up I get and off I go
and smile, so people will not know
that all that time, way deep inside
my true feelings I will hide.

Because my feelings are repressed
I will tend to get depressed.
But still my duties I’ll fulfil
though I know it makes me ill.

But I get tired of it all
chronic illness, big and small.
And sometimes when it gets too rough
I simply feel I’ve had enough.

                                  B. Withers 2012

TIREDNESS AND ILLNESSES.

I think UC, Crohn’s and IBS
will all link up with tiredness.
Also there’s some affirmation
of this with bowel inflammation.

If you lose blood through your poo
when you sit down upon the loo
then you should take some extra care
and watch for other symptoms there.

If lots of blood runs from your bum
anaemia can sometimes come.
In much research it has transpired
that this can make you very tired.

With such diseases comes much pain
which causes energy to drain.
And if it’s with you constantly
you will tire consequently.

Chronic illness has some renown
for really dragging people down.
So if you don’t feel very well
within fatigue you may well dwell.

When your diet is not quite right
then you might lose your appetite,
and if you go right off your food
it’s likely you will be subdued.

Illness can create the stress
to put you under great distress.
Then there is the loss of sleep
where tiredness is what you reap.

These chronic illnesses aren’t kind,
they stress the body and the mind.
Because they are so difficult
tiredness is one result.

                                        B. Withers 2013

TIREDNESS. 3.

My tiredness can overwhelm
to make me feel I’ve lost the helm.
Sometimes it’s like a little boat
sinking fast but still afloat.

As there’s no one else around
to this sinking boat I’m bound.
Tossed and battered by each wave
waiting for its watery grave.

All around dark clouds of gloom
intensify my fears of doom.
In this relentless stormy sea
I foresee the end of me.

I’ve heard of instincts to survive
and hidden strengths to stay alive.
Mine’s never been a half-filled cup
instead I feel like giving up.

My time has come, I can’t pretend
my tether’s come right to the end.
The pressure’s caused my will to crack
like last straw broke the camel’s back.

I can no longer have belief
that I will somehow get relief.
I’ve reached the point where I can’t cope
and now I feel I’ve lost all hope.

The more I try, the more I find
that tiredness engulfs my mind.
Every muscle I have strained
but now I’m weary, worn-out, drained.

My exhaustion is so deep
that all I want to do is sleep.
So now I will lay down my head
if I awake, I won’t be dead.

                                  B. Withers 2012

Still early days for everyone. Everyone is different in the time it takes for our body to get over everything it's been through. It can take 12 months or longer for the body to adjust and tiredness to wear off. It is always possible that you could be low in B12. Only a blood test will show it, but low B12 doesn't always show up at first. Having bloods done is a starting point.

Feb... After all my crap was done and healed. I too fell into the same rut of just being. I finally just said to myself.... It's over, get your ass up and begin living again. Embrace all the things you've wanted to do but couldn't. I'm better, finally even though I have a body friend everywhere I go. No worries, your bag will accompany you. Good luck... get moving, Ritz

Feb. It very well could be depression. I don't know the circumstances for you having to get your ostomy in the first place; but I do know depression may cause you to feel very sleepy all the time. Anemia will cause this also. You may want to discuss this with your Dr. and get blood work done. As others have mentioned, thyroid and vitamin deficits may need to be tested also. Good luck and let us know how things are going. We are here for you.

Hi Feb

I'm with Panther. It can take 12 months just to get back to somewhere near a "new normal" after major surgery.

I had six in three years, and I lose around 15 kg after each. It just destroys me, but it comes back.

Stay on top of any deficiencies with blood tests, often B12.

Axl

With a change in your body's digestive system and the healing and your body finding the new norm, having blood tests to check that you're absorbing enough or too much of the vitamins and minerals is a must. Also, having your sugar and insulin levels checked is a good idea. I started to gain weight after surgery and still ate like a 20-year-old and started to see changes in energy levels and my random sleepiness in the middle of the day. I self-tested by reducing sugars and carbs and avoiding alcoholic drinks, and started to see a quick change. From a blood test, I found out I was becoming pre-diabetic and caught it early. I have lost 10 lbs in a month on the diet alone, and the weight is going down and energy is going up. No mid-day naps.

Hope everyone's insight helps.

Wow, that was really wonderful advice! Thank you! ♥ The poems were also fantastic. I appreciate your response. I don't believe mine is mental either as I feel I have already recovered from that. I am just really wanting to remember normal life again and hoped this surgery was going to leave me feeling great as I was told.

Be patient... you will get stronger and back to your old self.

Hi Feb,

I looked at your profile, but it didn't say why you became an ostomate... other than you were sick. So as you read above, there can be many reasons for what you're experiencing. You were experiencing this before your ileostomy, so more than likely you had a problem with absorption of something. Your ileostomy may have removed what was causing the lack of absorption, but that doesn't mean that what's left can now absorb what that other part of you was supposed to. So you need to find out what you're lacking nutritionally and then supplement to get it back. Since that part of the bowel isn't there anymore... and what's left can't absorb what you lack... you may need to find an alternate way to get what's missing into your bloodstream. Depending on what it is, you may have options... sublingual, IV, injectables, etc.

But before we go putting the cart before the horse, you need to find out what's going on. Have your primary care order routine bloodwork (which may show nothing, but helps rule out some things) and if that doesn't point you in a direction, then get with a dietician (not a nutritionist) and have them order micronutrient panels on you. This way they can pinpoint what you may be lacking... and it may not be one single thing... and then get you back on track.

So I'd say start there, and if nothing becomes obvious, you'll have ruled out a LOT of things, which will make it easier for whoever is in charge of your care to then point you in another direction. Let us know how it goes. I think you and your doc will learn a lot once you understand what your bowels can and can't do.

Regards,

Bob

Thank you for responding and giving me much to work with. I had UC for 17 years. All the meds they make...coming down to none worked and I ended up with a hole in the large intestine and ER - straight to the hospital. I have some recent blood work. I'm not really sure what I'm looking for though.

Hi Feb,

I went through the same thing, only with both my small bowel (Crohn's) and large intestine (UC). It's pretty funny that gastroenterologists know that these intestinal autoimmune diseases have three levels of severity, but they never let on as to how bad things can get. And they have a pretty prescribed course of action that they apply to all of us... a steady progression of meds, until nothing works. Then they introduce you to the colorectal surgeon. They are always treating the symptoms and not the disease. To be fair, doctors don't cure things, they just act as the intermediary between Big Pharma and us patients. And if meds can't fix it... surgery can. Or so we're told.

So back to you... you aren't supposed to know what to look for, that's your primary care doc's thing. Your recent blood work might or might not include things like a lipid panel and liver function testing. It's good to rule those two things out right from the jump. Your best bet is to describe your symptoms to your doc and they should know what bloodwork to order. If not... you're seeing the wrong doc. They can also order the micronutrient panel, but usually need a little prodding (from a dietician or such). Some are smart and will order it without breaking a sweat. Others... well, you know how that goes.

So go have that talk to your doc and get yourself all fixed up. It's never fun feeling like you're feeling. Take notes when you talk to your doc, and if you have any questions afterward (we all forget what to ask when we're actually talking to them) we'll get you straight on here.

Take care,

Bob

Hi, my name is Marsha, and I have had my ileostomy for more than 50+ years, since I was a kid of 15... I read your fatigue issue, and read all the good advice that others have written. When your body goes through a major change, it takes awhile for "it" to recuperate, but it also takes your mind/mood to get adjusted as well. Sometimes fatigue is emotional, and sometimes, when you are anxious and concerned, you're using your energy to cope with the changes. But the best advice is to make sure your doctors are aware, and that you've been tested for anemia (I was recently anemic... and that's why I was dragging). Make sure you drink enough water. Without a large intestine, we don't absorb enough fluids, especially during the summer months, and that can cause fatigue as well. If you are drinking water and your blood levels are good, speak to a nutritionist about dietary needs to boost your energy. I've also found that the more I "give in to the fatigue lethargy, the more I feel it. So once you're medically cleared, concentrate on increasing your activity. Best of luck to you....

Maybe you should check your nutrient levels. I was at nothing before my ileostomy surgery, so have that checked out. Best wishes.

I did have a blood workup, and they said it looked good. I need to go look into getting my thyroid checked.

B Withers....You sir are a very good poet. I felt like you were in my head writing for me. Has anyone ever told you that you should write a book of poetry for illness? You are very good.

Like I told you, I am on SSD. One of the major problems I have is exhaustion. I was recently diagnosed with Chronic Fatigue Syndrome. Plus, having no energy from Crohn's disease, plus constantly being on the verge of death with my iron and potassium levels. I literally have to rest or take a nap every four hours or so. The littlest thing like taking a shower zonks me out for the rest of the day. I have two very active nieces. I tell them all the time how I wish I could bottle even a third of their energy.

I take medicine for this, plus I am on Percocet every 4 hours since I happen to get a lot of kidney stones and kidney abscesses and infections. So then THAT makes me tired. So I can definitely relate to what you are dealing with.

Hello tiff041.

Thank you so much for reading my rhymes and even more so for the appreciative comments. 

As for writing books on 'illness', I suppose it depends onhow 'illness' is defined, but (if mental illness/disorder counts) it could be postulated that I have written numerous ones surrounding that subject. I wrote three books covering the subject of 'stomas' and then combined them into a 'trilogy'. I have also written one to cover my heart attack and subsequent triple heart bipass. However, most of my books have focussed on the variety of 'bullying' in our human societies. Thus, again, depending on one's definition of 'illness', I would maintain that 'bullying' is a 'sickness' (or at least it is 'sickening').

So, these might also count as poems about 'illness' because the behaviour of bullies invariably make their victims 'ill' and this is what I write about.

My present work is focussing specifically on 'kindness', which is also something that is intricately connected with 'illness', disability and vulnerableness.  

I hope this goes some way to answering your question.

Thanks again and best wishes

Bill   

Dear Feb,

I have had a long history of medical problems with nearly every (seemingly) organ in my body at some point. I also suffered from chronic, nearly disabling fatigue for years. I am not sure if it was due to my myriad of issues, but I was dismissed by several doctors (including my GP, gastro, and others) when I talked to them about my fatigue. I explained that I was so exhausted that if a fire were to break out, I could only muster enough energy to walk to the nearest exit. They would take blood tests which would come out normal, and chalk up my fatigue as my body just needing rest due to all my issues.

Thankfully, finally one doctor (gynecology surgeon) asked if I had my Vitamin D level checked. I told him that I had bloodwork done several times just that year, but no one mentioned Vit-D. He explained that a Vit-D test costs extra, and that doctors (in the US) don't order that test unless it is specifically requested. He stated that some of my symptoms (which include chronic fatigue) point toward Vit-D deficiency and ordered the test that day. Sure enough, I was severely vitamin D deficient. I was prescribed a high dosage that was monitored until my level rose to a normal state. It helped tremendously. I am so very grateful that one doctor, out of SEVERAL, finally tried to find the underlying true cause.

Keep talking to your doctors about it...ALL of them. You never know which one might have an answer for you (or at least try to find one).

Hope this helps and best wishes!!!

Angel

Hi Angel, my wife has thyroid issues and when her gynecologist ordered blood tests, they also found her vitamin D levels were low. So now she is on 10,000 units per day. When the thyroid issue was resolved, she feels much better.

Thank you. Yes, I get dismissed a lot. Including a year's worth of random health issues that led to my emergency surgery. Hole in my large intestine. Before this, I always just trusted what the doctors would say. I will look further into this, thank you.