Andrew,

 

It took my husband about 2 to 3 months to get back up to speed after his ileostomy.  
Hang in there...

Handling post op pain is a delicate balance. You want enough relief so that you can make a reasonable effort walking, deep breathing, and coughing. Too much and you can wind up with complications like pneumonia, paralytic ileus, and opiate dependency. Six days is enough time to be transitioning to oral pain mends, but too soon to wean off completely. Another thing to remember is that more ambulation, deep breathing, and better sleep will reduce your pain in the long term. So, take what you need to do your job, and you can wean off later. 

 

You have more surgery coming so one step at a time!

 

Glad you are doing well!

 

Jan

Hi Andy, I hope you are feeling a little better.  My son had a reversal surgery on Thursday. This was his third surgery in 9 months.  This time, they had to shut down his j-pouch and put back the illiostomy.  He has been in tremendous pain Even with the IV pump with dilaudin for the first 12 Hours.  After the drugs kicked in he was great.  I don't know the dosage, but is was pretty high every 6 minutes.  Then on Sat, some genius decided he didn't need the pump and could just do the dilaudin by mouth..Wrong.  Sat after he was back to square one.  Intense pain, couldn't move, it was agony to watch.  The long and short of it was finally in the evening I got a resident to come up and look at him.  I had to do some negotiations but I got the pump put back on, but every 10 minutes.  He's doing great as long as he is on the pump.  Tomorrow we will lengthen the time again.  But, I have to tell you he has been on dilaudin since September when he had his drop down surgery.  We have had some complications, so that's why he has been on it it for so long.  When he had his original surgery in June, he was on pain killers for about 6 weeks.  Different ones and different doses.  Take your time, your body will tell when you don't need it anymore. 

 

Time is your best friend.
I never thought I would get anywhere back close to normal.
Still not there yet after 17 months but I will say I never also thought I would feel this good and have what I have now.
Time.  Like I said is your best friend... Have patience.
I didn't.  I wish I did cause mentally I was a wreck because I didn't have the patience. It all gets better.... But ever so slowly.
Good luck to you!

I ended up with a painful ileus. Three days post-op, they pulled my NGT, and whammo!  Lots of pain and it had to go back in. Day four thru five, I weaned myself off my PCA (quit using it), and used no pain meds after that (never filled my oral script - I know! crazy kid that I was).  But by day 6 I wasn't doing poorly at all, everything was moving, NGT was out, and I was tolerating moving around pretty ok. Around the week mark or a bit after, I was discharged to home.

I was pretty ok about 2 months after surgery, but again, I had no complication but the ileus AND I was 19 and despite bad UC, pretty healthy otherwise (if you can be "healthy" with badUC/pan colitis; I wasn't the sickest outwardly, as it goes).

Rachel, glad you are doing better.  They pulled the pain meds on my son too, only they did that on day 2.  I pitched a major fit.  I had to bargin with the surgical resident!  He had surgery on Thursday afternoon and pulled the pain pump on Sat noon, not even 48 hours post op.  He had been doing so well.  Then last night, something happened, I think he got locked out from pushing the button too much.  So he was not getting medication for 2 hours.  Boy, was he is severe pain all over again.  Then the dialodid ran out and it took a little while to get he replaced.  He called me at 6:30 this morning crying.  Then the surgical resident who pulled the pump in the first place wanted to do it again.  What is it with doctors and pulling pain meds, I'll never know.  I got to the hospital and started to find out what was going on etc.  the pain pump is still on, we are slowly weaning him off it and I think he might get to go home tomorrow!  don't understand why you stopped on your own! Crazy!  What is PCA and NGT?  My son does have a dependence to the dialodid but I will deal,with that later.  Just need to get the pain under control.  Then I'll get him off the stuff.  

PCA is the pain pump and NGT i am guessing her nasogastric tube. 

 

I am on day 8 post op. went for a walk today and havnt been been able to get the pain under control since, i take 4 mg dauldid every 4 hours and didnt sleep at all tonight I ended up trying to take 6 to see if it would work. I think i have a high tolerance to narcotics cause this is my first time ever taking them and it hardly phases me... 

they took me off the pain pump day two post op wasnt even 48 hours ,

 

I also had a bleed, almost two pints which left me with ALOT of bruising on my right rib cage that has now flown into my legs to. I really want to get off the meds but I cant seem to and i think by day 8 i would have been able to 

 

Jeffsmom, do you mind me asking how old your son is? 

Andy, my son is 24.  How r u feeling today?  Jeff is still in hospital, but will be getting out tomorrow!

 

PCA is the pump - patient controlled anesthesia. And, yes, NGT is nasogastric tube.

It's pretty common for about 48 hours to have a conversion to oral meds if the gut is working. IV pain meds work quickly but have a much shorter half life. Once you can transition to PO (oral) pain meds, you get much longer coverage, though of course they don't help as immediately as IV does.

I still don't know how I cut mine off so fast. My surgery wasn't laproscopic surgery; it was in the day of the huge open incision, too. My scar is about 14 inches long.

I am feeling better today a head of the pain now so I am going to stay a head for a few days then try and ween off again. I had to take doubl the dose what my doc prescribed to finally kick it back. For some reason the bleed I had is really setting me back but just gotta take one day at a time and I am not worried about becoming dependent on the Hydromorph so it makes it easier to take it 

Hang in there Andy. I'm you're age (21) and know just how hard it is... expect all your muscles to be sore from compensating for your abdomen. And other muscles to be sore for compensating for compensatory muscles! The best thing for me was two things:

 

A)walking. A lot.

B) Family. They were there to make the pain more bearable. They also kept my musclesrelaxed with nice massages.

 

Best of luck, buddy!

Andy, speaking from experience now.  Stay ahead of the pain.  Don't worry about the narcotics.  As long as you are taking the,may perscribed you won't have a problem.  Jeffrey has been on dialodid since Sept.  Addiction is the least of your problems.  You can't heal if you are in pain.  I think Jeffrey was on all that stuff for about 8 weeks.  He slowly got off of them.  Because he is autistic, he may have had a harder time with pain management.  He has sensory issues.  

But one day at a time.  Give yourself time.  You just had a herendous surgery, give it time and let your family help you.  You should be okay.  You're young.  Hang in there kiddo!  You will feel better soon.