I have problems with energy, anyone else?

[sharon j.]

I hoping for some advice please. I had ileostomy surgery 5 years ago. In addition to losing my colon I also had a third of my small intestine removed. I realize that dehydration can be a major issue so I am really good at staying hydrated. My sodium levels can drop too low as well so I'm always conscious of that. However, I still have days, sometimes 5 in a row, where I have no energy. If you can think of something that might help I welcome your posts. Thanks so much! Sharon J.

 

[nogutsnoglory]

As someone with chronic fatigue syndrome I'm very understanding. Definitely keep hydrated given the stoma. You may also want to get hydrated by IV saline. That has helped me a lot in the past. A bit of a pain to go get an IV host for saline but they used to give me 2 saline bags at a time.

Aside from hydration, I'm not really sure what can help because for me it's an illness. Have you had blood work on iron, b12, thyroid etc?

 

[UnXmas]

You really need to figure out the cause of your energy problems to know how to treat it. What sort severity of fatigue are you having? E.g. are you working a full time job and just don't have the energy to do the active things at the weekends that you used to, or are you struggling to get out of bed to have a shower and get something to eat because the tiredness is overwhelming?

 

[grahamburgers]

You may just want to mention this to your doctor. It doesn't sound super serious -- it's not uncommon for people with Crohn's (or really any chronic illness) to just not have the energy of other people, even in remission. I've got something of a reputation as a flake because sometimes I'm just unexpectedly tired and I bail on my friends. My close friends get it, other people.... well, other people I usually make up vague excuses for. I've talked to my doctors about it and they've always said not to worry unless it makes life difficult -- getting out of bed, getting to work, etc.

Nevertheless, fatigue is also an early symptom of many health problems and it's better to be safe than sorry. (That sounded more comforting in my head. Reword that so it doesn't sound alarmist, thanks!)

There's more you can do for your energy levels than just staying hydrated, though it's a good start! Firstly, avoiding sugar and caffeine. The temporary energy burst you get from those is a complete lie fabricated by your brain and when you crash you'll be more tired for longer. That means don't hydrate with juice. (You can drink juice, just not as much as you're drinking water.)
Secondly, eat a lot of protein -- I still don't have the energy of all my friends but I find I'm a lot more energetic since I switched *all* of my snack foods into cashews. (Except I still have popcorn if I'm watching a movie. Or Scandal. Scandal is so bad for me, I watch it and eat popcorn and drink wine. Some day I'm going to die and they're going to see Scandal up on my Netflix and just nod at each other knowingly. )
Third -- exercise. I used to think that was SO counterintuitive. Like working out is going to make me have more energy? They call it working out, right? But it totally works -- and you don't have to become a gym bunny. Any sort of regular exercise will help. Experiment around, find something that works for you. (I don't know if the ileostomy limits the physical activities you can do, that's something to look into though.)
And lastly.... spend some time every day doing something that makes you happy. Nothing will drain your energy more than misery.

....this was probably more advice than you were looking for, huh?

 

[UnXmas]

I don't know if the ileostomy limits the physical activities you can do, that's something to look into though.

An ileostomy doesn't limit anything. Exercise is a great suggestion (assuming there's no other medical reason not to). My exercise is slow walking, but it still helps.

My first recommendation for energy problems is to make sure you're getting plenty of good quality sleep. A nap during the day can help, as long as it's not close to bed time, i.e. mid-afternoon at the latest and only for a short period, e.g. not longer than an hour, so that it won't interfere with your sleep at night.
Try to get a good sleep routine if you can. For me that means getting up early, as I'm a morning person, and going to bed early. Non-addictive sleep meds really help me too. In order to have energy, you need to sleep!

 

[UnXmas]

Also on the dehydration issue: it is possible to drink too much fluid with an ileostomy, you can actually become dehydrated if everything rushes through too quickly, and it can rush your food through too quickly too, making you tired from lack of calories due to malabsorption. My surgeon warned me about this, and I've seen posts on this forum about it too, so I think it's true. What is your stoma output like, in terms of volume and consistency? And there are other things besides too much fluid that could cause malabsorption - Crohn's itself can do that - which results in lack of energy from malnutrition. So definitely see a doctor if you have high volume and/or watery output.

 

[grahamburgers]

You raise a good point about the importance of reliable sleep too -- even if you're getting a lot of sleep, not having a steady sleep schedule can make you tired.

I have serious problems falling asleep at night (except the nights I take my Humira -- I know some people get insomnia, but I have like the opposite problem) so I have to drink a relaxing tea, listen to relaxing music (the "evening chill" and "sleep" playlists on Spotify are great for this) and I have to use this program called f.lux to change the color of my computer screen from blue light to red/yellow light. (The blue light is why computers and TVs make it harder to fall asleep, which is why they tell you to read before bed but I get so engrossed in books I will stay up for *days* if I get reading. )

 

[UnXmas]

I have insomnia when on steroids. Sleep medication was the only thing that worked for me.

 

[Nancye50]

Definitely get all your vitamin levels checked. There's probably more than one you're deficient in.
I started dabbling with magnesium and it's done wonders for my mood and adrenal system in general. I can tell if I've gone overboard bc I start to get D whereas I usually have to avoid constipation. Im trying to work it into my diet as well without overloading on leafy fiber. It's so important to pay attention to our own unique needs!

 

[sharon j.]

Thank you all so much for your responses. They have actually led me to more questions so I, again, would very much appreciate your replies. Regarding sleep, I don't know if anyone else goes through this but this has been my experience for the last 5 years. I cannot go to bed, no matter how tired I am, until my output slows down enough to where I can sleep for one solid hour without my bag filling up. After that I have to set my clock for every 2 and a half hours until I finally run out of output. This, in simpler terms, means that every night, all night, I have to get up to empty my bag or it will overfill and I'll wake up, as I did this morning, to an awful mess, which pardon my pun, is a really ****** way to wake up. I've had people advise me not to eat too late in order to avoid this. In order to avoid this I would have to stop eating at 2pm. If anyone has this experience please, please advise.

So getting good sleep has been out of the picture. Additionally, because of severe spinal arthritis and previous injuries, I'm on pain medication regularly, some heavy hitters, and although you'd think this would make me tired, it's actually just the opposite. When I take a certain amount of Rx, and my pain goes away, I wake right up! The problem is that I'm trying to cut back but when I do my energy just goes away. I do exercise as regularly as possible as I have a treadmill and an exercise bike in my home. I agree that this does help and I really enjoy it. It's just that when my energy drops too low it is so difficult to do. If I were to take my pain meds I could just jump right on, literally, but I'm trying so hard to wean way down and maybe someday, completely off. ****! I feel like such a ******* mess. I'm a grown woman and still I have a worried mother asking me constantly how my Rx reduction is going. When I have energy I'm unstoppable. But when I don't I can't move and I feel like such a failure. I hope someone out there can relate.

Sharon J.

 

[Nancye50]

Sharon, this sucks!! I'm going to project my issues on to you which is sometimes not helpful. But I started taking magnesium and it's awesome! It's a laxative. Would that help you empty out before nighttime? Can you talk to nursing care about a larger bag for sleep?
I wish I could relate better, I'm just throwing ideas out there!

 

[UnXmas]

Thank you all so much for your responses. They have actually led me to more questions so I, again, would very much appreciate your replies. Regarding sleep, I don't know if anyone else goes through this but this has been my experience for the last 5 years. I cannot go to bed, no matter how tired I am, until my output slows down enough to where I can sleep for one solid hour without my bag filling up. After that I have to set my clock for every 2 and a half hours until I finally run out of output. This, in simpler terms, means that every night, all night, I have to get up to empty my bag or it will overfill and I'll wake up, as I did this morning, to an awful mess, which pardon my pun, is a really ****** way to wake up. I've had people advise me not to eat too late in order to avoid this. In order to avoid this I would have to stop eating at 2pm. If anyone has this experience please, please advise.

So getting good sleep has been out of the picture. Additionally, because of severe spinal arthritis and previous injuries, I'm on pain medication regularly, some heavy hitters, and although you'd think this would make me tired, it's actually just the opposite. When I take a certain amount of Rx, and my pain goes away, I wake right up! The problem is that I'm trying to cut back but when I do my energy just goes away. I do exercise as regularly as possible as I have a treadmill and an exercise bike in my home. I agree that this does help and I really enjoy it. It's just that when my energy drops too low it is so difficult to do. If I were to take my pain meds I could just jump right on, literally, but I'm trying so hard to wean way down and maybe someday, completely off. ****! I feel like such a ******* mess. I'm a grown woman and still I have a worried mother asking me constantly how my Rx reduction is going. When I have energy I'm unstoppable. But when I don't I can't move and I feel like such a failure. I hope someone out there can relate.

Sharon J.

I can certainly relate to the painkillers - I even have a worried mother asking me about them too, though mine worries I'll run out because she knows how miserable I am without them. I take codeine, it's a sedative but it wakes me right up, gives me the energy to concentrate, plus of course it helps with pain, and now I get withdrawal if I don't take it. If I find a solution, I'll let you know. I asked my doctor for alternatives and I've tried a couple of things but no joy so far. (I've tried Modafinil for energy and Tramadol and Duloxetine for pain - I'm on Duloxetine at the moment. Tramadol is addictive but not as addictive as codeine.)
So I take codeine during the day to wake me up, and Amitriptyline at night to ensure I sleep no matter what other symptoms I have going on. Amitriptyline can work as a painkiller too and is not addictive.

I don't have the same issue as you with my ileostomy - I sleep all night without needing to empty. But some things you can try:

Larger bags - there are even bags that will drain like a catheter that are designed for very high volume output, they're usually used in hospitals but your stoma nurses may be able to get some for you. With these basically you have a normal bag worn as usual, but it has a nozzle on the end instead of the usual bag opening. The nozzle can be connected to a tube into a much larger bag which can be attached to a hospital bed. But I expect they can be used outside of hospital. If you can't get these or don't fancy the idea of them, at least check you're using a maxi size at night.

Reduce the volume of output (which means thicker output, which leaks less easily than watery output too) - medications that can do this include loperamide (Imodium) and co-phenotrope (Lomotil). (Codeine does this also, but perhaps you don't want another addictive painkiller). Some diet changes may help reduce the volume as well. I know where there are some good articles on this so I'll add the links in a bit.

Can you nap during the day? What is your output like in the daytime? If it's excessive, it should be something to bring up with a doctor. I only need to empty my bag twice a day. You shouldn't be having your sleep disruppted like this - it's not normal for an ileostomy and a doctor could investigate into the reasons for it. You deserve proper sleep!

 

[UnXmas]

Here's an article on watery stoma output. Watery and high volume usually go together (if you reduce the water content, you reduce the volume), so I'm assuming yours is watery, but correct me if I'm wrong. The article was written by a member of this forum. Dietary meassures are included in the tips for dealing with it, and so are gelling agents which I didn't mention before.

http://www.veganostomy.ca/2014/09/dealing-liquid-ostomy-output.html

 

[UnXmas]

Sharon, this sucks!! I'm going to project my issues on to you which is sometimes not helpful. But I started taking magnesium and it's awesome! It's a laxative. Would that help you empty out before nighttime? Can you talk to nursing care about a larger bag for sleep?
I wish I could relate better, I'm just throwing ideas out there!

I realise this was written with the best intentions, but laxatives are not a good idea at all for someone with an ileostomy, especially when it's already producing a high volume of output.

 

[Nancye50]

It was well-intended. And I don't think it has a laxative effect if taken at a lower dosage at first, it doesn't for me anyway. I thought it might either help empty out of help with energy if absorbed without laxative effect.
So glad there are larger bags available but from what you said, maybe there are options for getting the output under better control.

 

[grahamburgers]

Sharon -- this is a total whim, but do you have ADD or ADHD? I've read that sometimes in people with ADHD, things that ordinarily make someone drowsy (such as painkillers) will perk them up, whereas things like caffeine that usually make someone energetic can sometimes make them drowsy.
Not that introducing addictive chemicals into your system is a good idea to help you sleep, but I'm just sort of thinking out loud here.

I don't have any experience with ileostomies myself, but I agree -- isn't the whole idea to help you have a relatively normal life? That means you need to be able to sleep and if the bag is contributing to your sleep deprivation you need to talk to your doctor and find out what's wrong with it.

 

[UnXmas]

Sharon -- this is a total whim, but do you have ADD or ADHD? I've read that sometimes in people with ADHD, things that ordinarily make someone drowsy (such as painkillers) will perk them up, whereas things like caffeine that usually make someone energetic can sometimes make them drowsy.
Not that introducing addictive chemicals into your system is a good idea to help you sleep, but I'm just sort of thinking out loud here.

I don't have any experience with ileostomies myself, but I agree -- isn't the whole idea to help you have a relatively normal life? That means you need to be able to sleep and if the bag is contributing to your sleep deprivation you need to talk to your doctor and find out what's wrong with it.

Interesting: I'm pretty sure I don't have ADHD yet opiates (sedatives) give me energy and caffeine doesn't. At least I don't think caffeine gives me energy. I don't drink coffee, but I do drink Coke. I've not noticed Coke affecting my energy but unlike many I can fall asleep easily after drinking quite a lot of it.