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Please help. Recovery after step 2 j pouch surgery

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Posted 7/4/2018 4:07 AM (GMT -6)
I have just had step 2 down for j pouch surgery and will have my 3rd and final stage done in about 8 weeks. I am really struggling with the recovery after my last op which took place on June 5th. My op took 10 hours and the j pouch was created, the rectum removed and given a loop ileostomy. Was devastated when I woke up as I expected to be fully finished but they decided to let my j pouch heal. I ran into a few complications and had two infections and was pumped full of antibiotics. I also developed a blot clot. I was sent home on the 16th of June and I'm practically bed ridden. I feel so tired all the time. I was in bed pretty much the whole time in hospital so I know I have muscle wastage but can that really make you feel so run down. I find it so hard doing little jobs and sometimes I feel faint. Everything takes so much effort and I end up giving up and going back to the couch. My body feels sore and my legs get stiff and restless and I feel like I can't get comfortable even lying in bed or on the couch. Is this normal. Will it get better? I miss having energy and it's depressing me that I am so helpless and can't do anything without feeling faint or sweating. I was tapered off prednisone quick quickly just before my op. Could this be the cause. Is there something my GP can give me for a boost. I have been home for two weeks and don't feel I have improved much. I'm doing okay with pain and I'm eating and drinking. I just feel rubbish and need it to stop soon. The days seem long and I'm struggling to see the light at the end if the tunnel. I know recovery is different for everyone but is what I am feeling normal and will it get better. Thanks for reading. X x
Posted 7/4/2018 6:19 AM (GMT -6)
719 seems what your going thru is similiar to my experience. I had surgery #1 in January. #2 April 9th. #3 should be soon. Issue for you and me now is you only have half of your upper intestine absorbing all the vitamins,nutrients etc we need on a daily basis. That is bc half of upper intestine was connected to your butt which doesnt absorb anything while new connection heals which made recovery longer and having a much looser stool common. Took a good 5-7 weeks for me to feel almost 100%. Last Saturday here in New York temps were in 90s. I'm a contractor,we were working outside and had no choice but to work in the sun. Was a tough day. I drank and drank and drank. The heat let me know I'm not 100% and this is almost 3 months after surgery 2. Let your body heal. If your wiped out from moving then stop and relax. I don't like sitting. I like to move. My surgeon and my drill sargaent visiting nurse got mad at me bc they thought I was moving around too much. They are right. If your body is saying I'm tired then rest.Infection can't help speed up recovery so take it easy You will be fine. Good luck
Posted 7/4/2018 6:19 AM (GMT -6)
Hey cuit,

Don't be too hard on yourself. You've had a really major op, two infections, a blood clot....and they took your pred away!
It would take anyone a few months to feel better after all that.

Listen to your body and get lots of rest. Take small walks and give yourself time to heal.

Your pain is ok, and you are eating and drinking. That's awesome.

Hopefully in the next few weeks, you will gradually get some energy back.
Take it easy.
Posted 7/4/2018 6:26 AM (GMT -6)
It’s a tough surgery, especially when you have complications. I was in the hospital for 22 days after my step 2.

We all managed to make it through the surgery and you can too. It took me 7 weeks to get back to work.

Eat protein, stay well hydrated and do as much walking as possible.
Posted 7/4/2018 9:44 AM (GMT -6)
Step 2 of the process is the most involved step and it’s a HUGE procedure. It takes time and lots of patience on your part to heal. I remember when I was in the thick of it and feeling like it was never going to end. I just wanted to feel normal again. It will all be in the rear view mirror before you know it. I think many people go through a little bit of depression too during the process. I think I did. I talked to my doctor about that and he said it’s very normal. Hang in there....the end result of not being sick anymore is totally worth all the hardships of the surgeries. I’m 8 years now with my j pouch and love it.
Posted 7/4/2018 1:35 PM (GMT -6)
The 8 weeks following my 2nd step were tough. The loop is difficult and things travel really quickly through you. I always felt dizzy and dehydrated. Please get yourself some hydration drops and add that to your water. Dehydration is the #1 reason people get readmitted. With everything you've been through, it sounds like you're doing really well. There were some tricks I used to tolerate life with the loop. I would never get up quickly, avoid alcohol/caffeine, add salt, chew food thoroughly to avoid blockages. I'd sit on the end of the bed and wait a minute before walking around - otherwise I could get very dizzy. My blood pressure was always very low. I would also take imodium a few times a day (ask your surgeon if this is an option for you). I used one-piece ostomy bags. Though I always preferred two-piece systems with my end, with the loop, I was changing it constantly because of leaks, and one-piece was easier and quicker. I kept a lot of different rings and pastes around with the loop. I didn't need any of that with my end ileo, so needing it suddenly was strange. Most importantly, take it easy and take the time you need to heal. Don't lift anything heavy.
Posted 7/4/2018 2:05 PM (GMT -6)
Thanks everyone for the replies. I have taken all the comments on board. I bought hydration drops and make sure I have salt. I am using the one piece dansack lile I did with my end ileo. I was told to use convex bags with a belt but I kept leaking. I'm wondering if I should by some sort of seal that I know people use. My skin is a mess. Did anyone else suffer headaches. Could be due to all the lain killers. I'm cutting down though. Should be med free in a week. It's nice to know this comes to and end. I knew I would get depressed as I did the last time but I know when u feel better and get back to normal u mentally start to feel better. I hope I end up with a good pouch because I'm quite frankly sick of being sick and watching my life pass by without me. It's a very traumatic experience these surgeries and I may get some help dealing with it. Thank you so much. I'm seeing a bit of light now. X x x x
Posted 7/4/2018 2:43 PM (GMT -6)
your headaches may be the result of dehydration -- common symptom.
Posted 7/5/2018 7:19 AM (GMT -6)
Yes could be withdrawals from pred if you were on it a long time before.

However, the faster you get up and get around the faster you'll recover......nurse told me to walk as much as possible to make sure I recovered quickly. If you give up and go back to the couch you're just hurting yourself more. You need to keep at it and walk as much as possible since that aids recovery in this case.

Obviously don't overdo it and land yourself in a bad situation but have someone walk with you and get out there. After my jpouch creation I made it a goal to make laps in the hospital and every day I'd try to get another lap in and another lap. Then once home I started walking the golf course with my parents. Not pleasant but helped tremendously.
Posted 7/5/2018 7:33 AM (GMT -6)
Add Tylenol to your regimen and slowly reduce your pain meds. You don’t want to be on opides for too long.
Posted 4/10/2021 6:27 AM (GMT -6)
Hey 719. Been awhile. Wondering how your doing??
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