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About 6 weeks post op, still very fatigued

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Posted 1/19/2015 2:25 PM (GMT 0)
So I am about 6 weeks post op from my 1st step surgery out of 2. I still get very tired. Just walking up the steps I have to sit as soon as I reach the top before I walk anywhere else. I feel like this should be better by now. I can't walk super fast or for very long without getting exhausted. Any tips on how to build my strength before my second surgery on February 16? I'm worried they won't be able to do it if I'm still in this condition.
Posted 1/19/2015 3:16 PM (GMT 0)
How did your taper from Predisone go? It took me a while and I ended up withdrawal which made me really tired, sore, joints hurting and just overall felt really bad.

It also took me a long time to build up my appetite again, someone pointed out to me that I might be so tired because I wasn't getting enough calories. I increased my calories and it really did help with my energy levels.
Posted 1/19/2015 6:13 PM (GMT 0)
It could be a few things. Like Keith pointed out, it could have to do with the prednisone tapering. Another medicine related cause could be painkiller withdrawals - were you taking/have you been taking a lot of pain meds post op up until now?

The loop is tricky because it's such a massive surgery to begin with - I remember after my step one I didn't really feel capable of doing much until around the three month mark (but I also had a three step, so can't really comment on combining the first two) - and having the loop can cause issues with proper calorie and nutrient absorption and hydration so it really could be just a matter of healing and getting enough rest/calories like Keith also mentioned.

Were you anemic at all heading into surgery or do you have anemia issues unrelated to your UC?

As far as tips on building your strength I would just be wary of any signs of infection (although at this point it's highly unlikely) and continue resting as much as you need and eating tons of protein.
Posted 1/19/2015 6:13 PM (GMT 0)
I can totally relate!!! Took me much longer to get my energy back than I thought it would. And I was eating a lot as well as drinking protein shakes (with ice cream) every night. I agree with Keith about the prednisone. I had been on it for a year at the time of my surgery (got it down to .25 mg the week before so haven't taken any since then)...I do think that contributes to the lack of energy. Although I doI think the biggest problem is that you are still dehydrated (no matter how much you drink!!!) when you have a loop ileo. It's so far up in the digestive tract that food & liquid go right through. I can't tolerate GatorAde or PowerAde...think it's the sugar (although I have no problem with ice cream or cake!). I finally found an electrolyte replacement pill that seems to be helping & I started taking Imodium again (usually just 2 pills once a day to slow things up)...either that or I'm just so pumped for takedown on Friday that I've got much more adrenelin pumping! But I'm also now at 3 months (my surgeon won't consider takedown before that time...not sure why).

I was worried about having enough energy for the 2nd surgery as well, but can honestly say that I am finally feeling great (played 18 holes of golf Sat, wall papered with a friend for 4 hours yesterday & did my entire hour of Zumba today without having to sit down between songs!). So yes...you will get your energy back. I also think that the whole loop ileo process is quite exhausting in itself. I had lots of painful skin issues which made me feel worse than the actual surgery! Good luck! It's only one more month for you!

Vicki
Posted 1/19/2015 6:21 PM (GMT 0)
It took me three months to get even a little energy back. It will happen. I found exercise was the best thing. Even if its just going for a walk.
Posted 1/19/2015 6:44 PM (GMT 0)
Amanda,

I wouldn't worry too much about it if you are going for the reversal, it's pretty common as you can tell from our above replies. Just mention it to your surgeon.

The surgery that you had was major surgery. I was off of work for 7 weeks after it and finally felt almost normal again the week before my take-down surgery....it was rough and I can't imagine going through Predisone withdrawal during it. I had a 3-step and step-1 was difficult because of the Predisone taper, where-as step-2 was difficult because it was such a big surgery and Loops are difficult to manage.
Posted 1/19/2015 7:00 PM (GMT 0)
Amanda, I'm at a similar stage to you post-op (though I just had a colectomy, no pouch creation) and I still have zero energy! Especially after lunchtime, I can hardly move or concentrate on anything. I try do anything I need to do in the morning (shower, bag change etc) just in case I'm too tired.
I'm still having issues sometimes with sleeping (having to get up & empty sometimes makes it difficult to get back). And eating isn't great for me either, I make myself eat more than wanting to.
I'm glad it's quite normal though, after reading these comments. I said it to my surgeon last week too & he said that it would still be from surgery. Plus I was very sick going into surgery & very anaemic. So there is a lot to recover from!
Posted 1/19/2015 7:05 PM (GMT 0)
You can still have effects from the anesthesia for 4-6 weeks after surgery. Especially with sleeping and staying asleep.
Posted 1/19/2015 8:26 PM (GMT 0)
I'm extremely exhausted just from dealing with UC. Can anyone comment on whether or not it's the same tiredness experienced when you had UC?
Posted 1/19/2015 8:33 PM (GMT 0)
Thanks everyone! It helps to know that you all felt the same way. I was really getting worried. I really think I just need to try to eat more, drink more, get in more calories and definitely more protein! I'm gonna try to push myself to do this even when I don't feel well cause I know how important nutrition is. Hopefully it helps a little!
Posted 1/19/2015 8:36 PM (GMT 0)
Ryan- I was on Percocet but only for about the first week I was home from the hospital. And yeah I was pretty anemic even before surgery. I've had to take an iron tablet once a day for a few years.
Posted 1/19/2015 8:46 PM (GMT 0)

Serialflusher said...
I'm extremely exhausted just from dealing with UC. Can anyone comment on whether or not it's the same tiredness experienced when you had UC?

For me it was totally different from UC, I was no longer sick and dealing with an illness. I was just recovering from an operation and Amanda's operation was a larger operation then mine because she had her colon removed and J-pouch created at the same time. I only had my colon removed and then months later they created my j-pouch.

I woke up from my first operation and I felt better. My GI told me before the surgery that you wake up and you feel that the monster is gone. I could actually tell that my body felt better after the surgery without my colon.

The exhaustion from the surgeries/recoveries were manageable for me, I could no longer go on with the sickness of UC, it was effecting me too much.
Posted 1/19/2015 9:01 PM (GMT 0)
Ditto what Keith said. The exhaustion after surgery was much different than the way I felt with UC. I no longer felt sick...my body was just recovering from a very difficult procedure (I too had both the colon removed & J-Pouch created in 1 step). As the surgery took 6+ hours, I'm sure the anesthesia recovery alone took quite a while!

Vicki
Posted 1/20/2015 6:07 AM (GMT 0)
Agree re: the exhaustion. It was a lot less of a miserable wanting to crawl inside a hole and never wake up exhaustion and more of a weight being off of my shoulders kind of relief and now I can finally just rest feeling.
Posted 1/21/2015 8:18 PM (GMT 0)
With recovery the recovery time is not linear as people might expect, but it can be ups and downs and should be measured in days rather than weeks, as in sometimes it can only take a day or two for a major turn around and the fatigue to pass.

I really do think if you can push your body to do anymore activity whether it be walking for a few more minutes per day or something more so physically challenging you will be rewarded by feeling better over all. I personally noticed I was semi dehydrated which was making we feel groggy, also once my hemoglobin levels finally rebounded from the UC days and surgeries them selves I felt a world better.

I have also heard it can take a year or more before you finally feel fully recovered from everything.

Post Edited (Virdent) : 1/21/2015 1:31:35 PM (GMT-7)

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