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I understand. My energy level comes and goes. After all the surgeries, its just part of the healing process. People recover faster from heart surgery than they do intestional surgery. Patience and a hobby are the key...preferably a hobby where you can rest at the same time.
Thanks for the responses. I am going for a physical next week and will get my vitamin levels checked for sure.

Dog - I hope things get better after 6 months. It has been almost 3 months since my takedown and I am still so limited on what I can do. Lucky if I get out a few hours each day in the afternoon. I am still having, well, accidents at night and still constantly have that pressure/sensation feeling like I always have to go. I don't see anyone else discussing these things at 3 months out so hoping that this is not what I am going to be stuck dealing with forever.

Surgery is definitely tough. Was not prepared at all for what this entailed. Wish I would have been on this web-site before my surgery.

Christine
Christine-
Make sure they check your blood for more than just the usual stuff. Check zinc, magnesium, B12, iron stores, electroylytes, etc.. You very well could have some depletions that are affecting your fatigue. Also, how is your hydration? Dehydration can definitely cause fatigue.

Also as the others have said.. you went through MAJOR surgery. Your body is still healing. Think about when you have simply had the flu in the past. Remember how much you needed to rest. So be patient. Listen to your body. Rest when you need to. It will get better.
Dog,

Have you looked into sleep apnea or had a sleep study done?

I don't like wearing a sleep mask but it really doesn't bother me and I sleep better when I use it. I was hoping my big weight loss after my surgeries had eliminated my problem. It didn't.

All this pain and suffering from UC and the surgeries, not to mention fibromyalgia and all of my other health problems - I do not want to add heart problems to the list.

Sorry, you probably know that's why we need to treat sleep apnea, I just posted in case you didn't know.

BTW, I'm still exhausted - even using my machine. It's worse without it.
Getting all your levels checked is a very good start. I think we often chalk a lot of the tiredness up to having major surgery, but the truth is, there are often other things going on as well. For instance, with me, I fatigued quite easily for a year after my sub-total colectomy. I'd go to work but I was so drained when I came home, I didn't have much of a social life or really do anything else. It was get up, go to work, come home, crash. I had been for all my follow up appointments, so I passed it off as just the trauma and after effects of the surgery. However, it turns out that when I went to my GI for bloodwork 6 months earlier, his office neglected to tell me that my hemoglobin was only 93, and my iron was 9. So I was literally walking around for 6 months with very low blood counts. It was only when I went for my physical and had repeat bloodwork done that the oversight was discovered. My GP immediately called my GI and sure enough, there had been a note in the system to call me to tell me to start taking iron supplements immediately, but this was overlooked. I was furious, especially since I'd required 2 blood transfusions after the surgery. You'd think they'd be monitoring me a little more closely, considering. Needless to say, I was started on iron and B12 immediately. It took a while but there has been a noticeable difference with the supplements. I will probably have to take them the rest of my life.

Anyway, sorry to go off on that tangent, but it's a good idea to get everything checked out and not be too passive. Yes, surgery takes a toll, but it's quite possible that one or more of your blood levels are low and a supplement can help you feel a little better.
Thanks Spooky and everyone for their advice. I am going for a physical next Monday and will be sure my dr. checks all my levels. Wishing I had more energy. Everything seems to take a toll. I guess I am a little afraid that this is the way things are going to be. I'm about 3 months post takedown and seem like my recovery has kind of hit a roadblock and things are just "staying the same". I just hope my quality of life will not be like this forever. I hear so many people feel so much better 6-8 weeks out and it scares me that I don't. Frowner

Christine
I had fatigue for a full year post surgery. I napped every day after work and more on weekends. I believe my fatigue was more related to the 2.5 years I was sick prior to surgery, rather than the surgery itself. In that year I continued to work and exercise but I always listened to my body and took a nap when I felt tired. The fatigue did lift but it took a long time. Get your CBC, and be kind to yourself.

Sue Big Grin

If you are easily fatigued or weak something is going on and a complete blood panel should be done. 

I was the same way.  For over two years after my surgery. 

Had blood work done and came back it was simple as low iron levels.  Started taking iron and have not looked back. 

Just a thought. 

I should have had it checked sooner.  But as usual just figured it was the surgeries. 

Richard. 

Thank you so much.  I have my yearly appointment coming up in October.  So I requested any and all blood work done ahead of time so we can go over it there.  Even before my UC then to having a jpouch I was have had low vitamin d.  But taking that is not helping at all.  I'm desperate.  Thanks for all the advice.  Other then that I am doing great.  

The term dehydration is often misconstrued and first thoughts are thirst and the need to replenish fluids.

I've come to the conclusion that it actually means a loss of electrolytes, especially potasisum; maybe its always meant that and I'm the one who misunderstood.

I never actually feel thirsty, the closest I get is a dry mouth, which I only notice when talking.

Within minutes of eating a huge meal I will still feel hungry and snacking on foods I shouldn't.

Since my many episodes of dehydration, I now believe that my constant hunger and snacking is my brain, body or whatever, confusing the sign of thirst with hunger;  which is also a theory suggested by my GI Consultant and my body is managing to extract enough salts and fluid from whatever I''ve eaten to provide a quick fix.

Our electrolytes, especially potassium require replenishing and once dropped to such a level, creates exhaustion or fatigue and the consumption of fluids can dilute the electrolytes even further and exacerbate the level of exhaustion.

Today, I awoke not feeling refreshed and was enduring episodes of sleep, like a micro sleep and jumping out of it, as quickly as I fell into it.

Once I force myself to consume a rehydration drink;, it appeared to work, not instantly though but my Doctor dismisses this.

Last edited by Former Member

Different sorts of exhaustion are caused by different sorts of deficiencies...I have chronic exhaustion but not always...meaning I expect it but when it doesn't come, I am thrilled.

I have found that yes, the number 1 cause is dehydration and loss of electrolytes...and yes, I confuse hunger and thirst very often. I tend to snack when I should be drinking water. I snack when I am tired instead of drinking. So, I am probably over eating and under-drinking...meaning that I am often dehydrated...my only sign is dry-mouth, yawning, and dizziness...then it moves on to 'heavy legs' and a desire to sit down (or collapse). By then I have usually figured it out and drink...And eat something salty.

But depression can make you tired, so can boredom, anxiety (funnily enough) and sadness. All of these can contribute. 

Sugar too. If you tend to eat sugar instead of drinking fluids (those confused signals again), then you may be causing yourself your exhaustion through sugar high/low cycles.

Do not neglect the thyroid...if you are hypothyroid you may find yourself dragging around the room in exhaustion too. Even if your numbers are just at the limit of normal it is low enough to cause you symptoms. Do not allow your doctor to blow you off just because you are a couple of digits short of clinical...it can also throw you into depression, chopped up sleep cycles, dizziness & moodiness.

I try to watch out for low-grade infections too. They knock the stuffing out of you if they go on for a while. Years ago I was brewing a nasty infection but I didn't know it...no pain or discomfort but I could barely drag my body up the subway stairs then up another 2 flights to my apt...I became short of breath, angry with myself (I was only 40) and frustrated...hubby used to call me 'sleepy' (the dwarf)...every time I sat down I wanted to sleep. I didn't want to go out, eat or talk to people...they thought that it was depression or anemia but it turned out to be a massive infection...it took them a year to discover where it was coming from and deal with it (necrosis of the abdominal wall behind the pouch).

So, I try to rule things out as I go. If it is not this or that then it must be X or Y...

My last question would be hormones...they can do it too...

Make a checklist and go over each item until you find what works for your body.

Sharon

 

There are somany causes of fatigue that it is impossibe to list them all here. But, the most common and likely have been mentioned. One cause that is often overlooked is chronic inflammation, such as pouchitis. For me, inflammatory arthritis was a big factor and severe fatigue is a signal for me that my arthritis is flaring. When you have chronic pain, you tend to block it out, so a flare can sneak up on you. Sometimes I need a short course of prednisone to snap out of it.

Jan

I was more tired than I wanted to be at about a year after my last takedown.  I am not sure what changed, but I feel much more energetic during the day now.  Yes, I doze off watching television at about 10:00 at night!  But I sleep well.  A true sign that I feel good is I invent putter projects.  I am also exercising a bit more, ten mile bike rides (I try to keep a good pace) almost every day the last few weeks.

The advice here is great, but for me I find that exercise gives me more energy, but always need to remember to drink fluids!  Being low on iron is also something I've had to watch and I learned a bit about B12 on this board.

 

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