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Crohn’s fatigue


SqueakyandLiza
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Hi all, 

I have a question for my fellow Crohn’s people. Do you ever find yourself so incredibly exhausted for no reason at all?  Is it an effect of Crohn’s?  Some days I feel like it is all I can do to get up from a chair and do something. It isn’t all the time. Sometimes getting some exercise will help, but other times, it doesn’t help at all. 

I went for a walk about an hour ago and now I am totally done. Of course it is really hot here. It was 89 at 10am and it is supposed to get to 107 tomorrow (that is 41 for you Celsius folks). 

Thanks guys. I’m still learning the ins and outs of Crohn’s. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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garyh
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Posted by: @squeakyandliza

Do you ever find yourself so incredibly exhausted for no reason at all?  Is it an effect of Crohn’s?  

Fatigue can definitely be an effect of the Crohn's -- either directly (body is fighting off inflammation after all) or indirectly (for example, you may have gotten dehydrated or didn't sleep as well, etc.).  I find the latter particularly challenging because having lived with Crohn's for so long, I often overlook pain/discomfort that I think "normal" people would recognize quicker.  Yesterday, I was feeling well in morning but somewhat inexplicably not great in the afternoon. But then realized I hadn't eaten as much as usual and ate a protein bar and had some Gatorade and felt better soon after. 

Pretty sure my fatigue was just not enough food and dehydration. But other days the same routine wouldn't be a problem.  Which I think is one of the reasons diet and other lifestyle changes are so hard to make with Crohn's -- even when they help, you don't always see consistent or immediate results.  And that can make the change very hard to stay with.

 

 


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VeganOstomy
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Posted by: @squeakyandliza

Do you ever find yourself so incredibly exhausted for no reason at all?

No matter how you cut it, having a chronic illness will either directly or indirectly be the cause of this.

If you already haven't, I strongly suggest that you get your iron levels and b12 levels checked. Those are two things that tend to be low in IBD patients, and they happen to also be related to energy levels and exhaustion.

If you have any active disease, then your body is putting a lot of energy into managing it, which will naturally result in feeling exhausted. 

And don't forget to make sure that you're well hydrated. I've had instances where hydration has fallen behind and I immediately crash.

That said I can't imagine that the heat is doing you any favours. 😂  Do you tend to also get really tired when you've been out in the sun for a while? I noticed that something that I go through quite often despite loving the Sun.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
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Hi Liza...even though I don't have Crohns I most certainly understand fatigue. I agree with these good men, get your blood work tested & start there. If its not being done regularly ask your GP how often it should be done & stick with it. Check your results as well.  Remind him you have Crohns.  For now, Increase your fluids. V8 juice is great for helping in this regard plus it'll give you some extra vitamins. Add some salt & pepper if you like or a few of your fav.  Herbs. Even a bit of sugar won't hurt unless your diabetic. 

Often when too tired I have trouble eating let alone preparing a meal.  Any dip in the above suggestions can cause these symptoms when your already battling a chronic disease. 

Keep in mind you just came home from traveling this weekend. Believe it or not travel even a 1 hr. trip can play a huge part of exhaustion as well.  The packing alone can be a tiring event sometimes. Even though your " just"  sitting in a vehicle, believe it or not it can take a lot out of a person.  We eat & drink & sleep differently while traveling and while a guest. These all play a role in fatigue.  The jostling around our guts go through in a car is relevant also. All of this takes it tole. I have had it where a simple trip an hour from home forces me to rest for a week. No exaggeration. 

 I'm waiting for Iron Infusions to start again. It was 20 when I was told I needed them again but the approvals are terribly slow due to covid so now its at four. My B12 is shot too.  Its exhausting & disappointing to feel this deep level of fatigue. With Crohns, your bowel can leak blood.  Get some blood work done and listen to your body.  Rest.  Do what you can when & if you can.  I know its hard but don't push yourself too much!!  Allow your body to rest & heal. Hang in there, enjoy the reading or listening to an online novel & be kind to yourself. 

Linda


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kedikat
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Just a guess. But of course Crohns makes it very unpredictable as to how much value you will get from food intake. Even eating the exact same thing and amount does not mean you will get the same value from it one time to the next. When my Crohns was very active, transit time through my digestive tract was so erratic. Often it was just a total waste of food.

If it is very bad. You may want to concentrate on consuming what is most easily and quickly digested to get the most out of it. A base routine to get the minimum required. It will likely be a dull menu. But that does not mean you can't have treats as well. Just wait to eat the other stuff, till you have had time to digest and absorb the minimum. Maybe concentrate on getting maximum food value at breakfast. Take some Imodium with it? A light lunch that does not contain stuff that will shoot through your system. Then maybe splurge for dinner. You will be home and close to the facilities. Hopefully you have gotten good value from what you ate earlier in the day.

I was very lucky that my first surgery worked very well. But I still had fast transit time through the gut. I ate high protein and carb stuff. Low fiber. For 30 plus years I did quite well. I actually consumed most of my main food after coming home from work. A few light snacks during the day.

Just what worked for me. We are all different.

Why?


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kedikat
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Also...

I had an ileostomy about 2 months ago. So I am now very up close and personal with my output. I can more clearly know what is going through fast and relatively untouched. Processed carbs seem to do well. I eat a lot of Eggo waffles. It may be impolite to discuss my protein aspects on this particular site. But highly processed ones seem to not be digested as well.

Why?


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SqueakyandLiza
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@football99

Thanks Gary. I actually hadn’t eaten anything before I went walking since it was getting hot so I didn’t want to wait any longer. Also I was planning a shower and ostomy change so I wanted to do that before eating. 

Sometimes I feel queasy if I don’t eat. I never thought of it being from the Crohn’s. I’m pretty sure I have had Crohn’s for years, looking back at all the signs, but I’ve only known officially for just under 3 years. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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SqueakyandLiza
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@veganostomy

Thanks Eric. I do finally have my iron under control, and my doctor put in for a vitamin D test in 3 months. I will ask her about the B12 too. 

I’m pretty sure I do still have active disease. I did last year when they did the surgery to remove my sigmoid colon and the bit of my small intestines. And while I don’t know all the symptoms, I’m pretty sure it is still there. 

I have never done really well in the heat. It wears me out. Plus being on Humira makes me susceptible to skin cancer. I’ve already had one carcinoma removed. Plus the doctor prescribed azathyoprine to work with the Humira, and that makes me more sensitive to the sun. I’m trying to be super conscientious about staying hydrated and sunscreen. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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kedikat
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Just watched the video on hydration. And he mentioned fatigue due to lack of electrolytes. Maybe take a peek at it. Mentions good options for hydration.

Why?


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ChrisandBagpus
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Dr's have been discussing recently a lot about the gut biome and how the gut rules the brain. more nerve signals from the gut to the brain than the other way.

There are several books on the subject discussing the very strong influence your gut biome and its flora have on your day to day function.

So Liza in answer to your question if your guts aren't in the mood, then yep! your a couch potatoes. :lol: :mrgreen: 

Colostomy Jan 2020


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SqueakyandLiza
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@kedikat

Thanks for the great info and good advice!!

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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SqueakyandLiza
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@dlkfiretruck

Thanks for all the good advice, Linda. Yes, traveling can be exhausting. And even though we had a very nice long weekend, it was a 5 hour drive each way, and we even went into another time zone. I think I am still recovering. 😊

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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SqueakyandLiza
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@chrisandbagpus

Thanks Chris!!  You can always make me laugh. 🛋🥔  😂🤣

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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ChrisandBagpus
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@squeakyandliza

someone on the forum has the byline “May your day be bright and your bag be light.”

I try to think why stop there!

We have a saying over here "you can be a long time dead- so get on with life"

PS have you thought of putting waterproof LED lights in you bag then it can be bright and light :lol: 

Colostomy Jan 2020


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