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recovery time after total colectomy

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Posted 10/17/2012 8:25 AM (GMT -5)
Hello All,

I was wondering what the "normal" recovery time after total colectomy is. I had surgery ending with an illeostomy on 9/17.  I was a bit pooped (winded), but after about 3 weeks my windedness progressed t o the point that getting up too quickly would almost make me dizzy.  My heart rate's a bit faster than usual.  Doctor's say no concern with surgery, heart good, but have some sort of pneumonia that I'm being treated for.  After 4 weeks at home, I tried to work at office, but couldn't stick out long -- just too whipped out.  I've been told it could be stress although waking in the night and thinking I'd black out or get dizzy does not strike me as nerves/stress. Surgeon's office said that since I was sick with UC for good period before surgery and trying to lead a normal life) that it might take longer to recuperate.  Some think I'm just weak, don't have the will to get well.  I resent that.  Appreciate any feedback.  I pray for the best of everyone here.  Thank you.

 

Posted 10/17/2012 8:27 AM (GMT -5)
PS I'm told pneumonia that I have now somehow should not be causing symptoms that I am feeling.
Posted 10/17/2012 9:12 AM (GMT -5)
Recovery will be long if you were sick before surgery. But I also think what you are experiencing could be symptoms of dehydration. I would recommend that you start drinking Vitalyte. You can purchase it through www.vitalyte.com or at REI stores, or through Amazon. It's an electrolyte beverage and is considered one of the best. If you don't like flavors, order citrus, it tastes most like plain water. I like orange and grape best. I also encourage you to eat salty snacks or drink bouillon. Salt is needed to retain fluids.

Drinking plain water, for ostomates, is sometimes not enough.

Sue
Posted 10/17/2012 9:19 AM (GMT -5)
Hope,
Congrats on going through with the surgery! I think Sue's suggestion is great. Also, pneumonia is exhausting. My very athletic and fit son got it last year and it leveled him. How's your blood pressure? Low could make you dizzy. I know mine does. Just listen to your body and rest as needed. It's a big surgery and I'm sure you'll be so happy when you feel better and start living without UC. Take care!
~Cita
Posted 10/17/2012 4:29 PM (GMT -5)
Sue and Cita, I love you for your kindness and caring responses, and I wish you the best! Thank you! I will take your advice. -Steve
Posted 10/17/2012 5:32 PM (GMT -5)
Hi hope4change. I think I experienced something similar after surgery (and I think it started before surgery, but surgery made it more pronounced). I would get really dizzy doing simple things like going up stairs, bending over to get things out of the washing machine, get things out of a cabinet, etc. Oh yes, and getting up as well. My heart rate was floating around 100 most of the time, which concerned me and was atypical for me.

Before surgery, I talked to my GI and surgeon about it (they said it was likely pred and being sick). After surgery, I talked to my GP and the surgeon's office about it. They weren't concerned. What I got out of our discussions - you had alot of blood vessels cut (small tiny ones) and your vasculature has changed in your abdomen. Your body is still trying to figure how to move blood through. In addition, some the blood may have escape your blood vessels and gone into an unusable area (google/wiki "third spacing" and realize I'm talking about a very very minor form of it and don't let it freak you out). My GP said it's normal to have a high heart rate and feel crapped out after surgery. My dizziness/heart rate issue probably lasted for a month. But I wasn't dealing with pneumonia too. My goodness!!! I still find that I'm more tired than normal, even six/seven weeks out. I just went back to work this week.

Feeling these things is definitely freaky and scary. It bothered me quite a bit and worried me alot. I had had an EKG before surgery (everything was good!) and my docs listened to my heart after surgery. I was still worried that something was truly wrong! It's not in your mind, it is real, and those that think you are weak can just go poo poo on themselves (maybe not the choiciest words for this forum ;) ). They weren't so sick that they had to get their colon removed.

Just stay hydrated like everyone suggested (I noticed that I got worse when I wasn't drinking a TON) and be patient. It sucks being patient too. My surgeon's office told me to expect 6-8 weeks to feel functional again (not normal, functional). They've even extended the time off when necessary, so you aren't abnormal.
Posted 10/17/2012 5:35 PM (GMT -5)
Oh, and if the breathlessness comes with chest/lung pain or stays around for quite awhile when not doing anything (sitting on the couch) definitely go get that checked out.

They tell us to worry about signs of blood clotting (diziness, breathlessness) then we report them to have them seemingly dismissed (I don't think they are "dismissed" per-se...they just aren't what the consider worrisome). My docs told me they weren't as worried because it was not accompanied by pain and would usually resolves within a couple of minutes.
Posted 10/18/2012 7:13 AM (GMT -5)
Hi ActiveUCer, thank you so much for your response. The info you provided is quite comforting. Perhaps I should have realized it, but I was expecting 4-weeks before being able to return to work. The surgeon said, "4 weeks off" and I took that at face value. In either case, I am finally starting to believe that these lingering issues are in fact symptoms of having been sick for some time and then having surgery.

PS I forgot to answer Cita earlier, my BP fluctuates, but there were some "something" (100 maybe) over 60 readings a few times. My BP is usually normal. I don't know if my BP has been low outside the ER where I'd been a few times trying to figure out what was going on.
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