4 weeks to the day since total colectomy

  Hello all, today is the one month anniversary of my divorce from UC! I took the surgery option after

coping with UC for 22 years using no prescription meds until last year. Pred didnt work, (still tapering, down

to 15) and one dose of Remicade was enough for me to decide that I didn't want to be on big chemo type

drugs for the rest of my life. To be honest, I thought that I would feel better 4 weeks out, the surgery went

without a hitch, handled the pain with tylenol (after three days of epidural) stoma is good outside of some

skin irritation around it, but man am I weak! Making myself get up and move everyday but still get extremely

fatigued and light in the head after 15-20 minutes in the kitchen. Granted, I was in pretty rough shape, had

went from 175lbs to 140lbs in less than a year, was anemic, was having heart arryhthmias (which still haven't

resolved all the way) hypotension, tachycardia...... Looking at all of that I guess that I am asking too much

too soon, still I hear a lot of folks that say they felt great in two weeks. Any experiences shared will be appreciated.

                   -Mike

48 years old

left sided UC 22 years

managed with diet, Boswellia, Turmeric, and Stubborness until a year or so ago

 

Be kind to yourself! Err on the side of caution, since the more you push it the longer it'll take to get back to 100%.

I know it's hard when you just want to get back to life already - I haven't even had surgery yet, I'm recovering from a staph infection at the site of my picc line and have been out of the hospital for a week after being in for 10 days (plus another 11 a couple weeks prior to that due to a massive flare). Surgery's in less than a month and my docs and family keep urging me to rest as much as possible both post-hospital stay and pre-surgery...because they know that resting is not my forte. ;)

Take it easy on yourself and you'll get better much more quickly!

I wouldn't worry too much about the fatigue, as annoying as it is. I was in a pretty terrible state before my first surgery - I was 108 lbs the day I went in (my usual is 150-160), I was severely anemic (my hemoglobin was around 7 I believe - that was AFTER three units of blood five days before), and I had been in a horrible flare that left me stuck in bed every day for almost 4 months.

I was in severe pain and on pain killers for at least the first four or five weeks after surgery, and then I switched to Extra strength Tylenol at least once or twice a day for about two weeks.

But then, all of a sudden, around the seven or eight week mark everything started to change. The pain was just about gone, save for some random mild discomfort every now and again. And the fatigue got much better. I started PHYSICALLY feeling the need to get up and move around, play with the dog, go for walks, etc. and I was able to do more and more each day. it was much more than just the mental need to force yourself up. By three months I was basically back to my old self pre UC (I still didn't have much actual strength though, but most of my weight was back and I was walking all around the neighborhood for over an hour everyday, cooking large meals without having to sit down in between steps or just to cut vegetables, etc)

I know it's frustrating and incredibly annoying but you'll get there. Just be patient. One day soon you're going to wake up pumped and start doing all kinds of physical activity and it won't be until an hour or so later that you even remember you've just had surgery and were sick for so long.

Four weeks is a very short time for the bad shape you were in to reverse completely! I definitely still felt tired and weak at the four week point. I am almost a year out from all my surgeries now and I feel like I have healthy/normal energy levels maybe 75% of the time. I've heard many people say it takes a full year to recover from surgery, seems to be true for me. Go easy on yourself. You've been through a lot but made a great first step towards a better future. Good luck

      Give yourself time!  It took me a good six months to feel "normal".  I was very ill going into surgery.  A LOT more ill than I thought.  It will be four years for me on June 28th.  While I am not up to running marathons (I'll be 68 in August...so gimme a break)....I feel soooooooo much better than I did when I suffered with UP ...I had proctitis.

      You'll be fine, just take one day at a time.

You are still on Predisone which will definitely effect your healing process. My recovery situation was similar to your surgery, 10 mgs a day about the 4 week mark. I was still very weak at that point and was able to tapper to 0 mgs at the 2 month mark where I got some more energy back. I ended up going through Steroid withdrawal from 2-3 months and finally after 4 months I felt great and full of energy. Just in time for my 2nd surgery.

Mike,

I've had Pred withdrawal a few times and each time had different some similar and some different side-effects. Each time I would have severe tiredness and exhaustion after doing most things.

The worst side-effect last time was the joint pain, I solved some of it by taking a UC & arthritis drug called Sulfadiazine.

Previous times I would have problems sleeping at night and dealing with hot & cold items, it seemed like my internal thermometer was broken for a month or two after stopping Predisone.

Hey Lucky, thanks for the response. Cool story, always nice to find a caring and open minded doc. I

take a great deal of Mag and its seems to help some, but over the last few days I have really upped

my electrolyte intake and the arryhthmias have subsided quite a lot. Found a good recipe for a homeade

electrolyte drink that doesn't have all the fake stuff that gatorade does.

More important than all of that is a hearty best of luck to you from me (and I am sure everyone here) with

your surgery today, and may you have a smooth and speedy recovery!

                     -Mike

Pred made me a wreck too, not so bad now that dose is down, I wish that I could help you other than to

say get off of it as soon as you can. Best wishes and good luck with your next surgery.