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Ulcerative Colitis
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Posted 8/14/2011 5:07 PM (GMT 0)
Here's my story real quick:

Diagnosed 3 years ago. Besides a blissful pregnancy I have been in a roller coaster flare... Mostly extremely bad. Been hospitalized twice.

Been on heavy duty Meds and now I'm done. I'm very excited about the surgery and it could happen maybe this week!!!


For those who have had it please share tips...how was your recovery period?
Posted 8/14/2011 5:34 PM (GMT 0)
Hey lild,

I haven't had surgery but I want to wish you the best of luck. Use an experienced surgeon, that's the main tip I hear from all the post surgery folks. They all admit the recovery isn't easy but it's well worth it when you're feeling good and never have to deal with UC again. I hope you heal quickly.
Posted 8/14/2011 8:50 PM (GMT 0)
Good luck.  Praying for a quick and easy recovery for you.
Posted 8/14/2011 10:41 PM (GMT 0)
Congrats on the beginning of getting your life back! What surgery are you having? J-pouch?
Posted 8/14/2011 10:45 PM (GMT 0)
I had the surgery in two steps. The first was colonectomy and creation of j-pouch, the second was the reversal of ileostomy. My recovery for the most part went pretty smoothly. I did have a blockage from swollen bowels after the first surgery. That resulted with a NG tube for 4 days. Total hospital time was 10 days, then an additional 3 weeks of from work (4 weeks total). I didn't feel much pain after about the 5th day. I spent 3 1/2 days in the hospital for the second surgery. There was no complications after this surgery. I was out of work for two weeks which covered Christmas holiday.

My biggest tips are to be sure you have a qualified surgeon. Take eating slow while recovering. I was so scared of losing more weight I tried to force it down making things worse. After all surgeries are complete, if you need to gain weight you can do it then.

I wish you the best of luck!
Posted 8/14/2011 10:49 PM (GMT 0)
Wow! Good luck! I agree to do your research on surgeons and find someone really experienced. I hope it goes well!
Posted 8/15/2011 1:07 AM (GMT 0)
Karbear, how are you doing all said and done now? Do you find life "back to normal" relatively speaking? J pouch is still something on my mind long term and always like hearing how people do in terms of what they can eat, frequency and complications. Hope life is treating you well. :)
Posted 8/15/2011 2:16 AM (GMT 0)
Congrats to you for getting healthy and taking your life back and beating uc!
I had surgery 4 years ago, best thing I ever did. And yeah recovery hurts, but you had a baby so you know pain.. and think of it this way, yeah its gonna be awful for a few weeks but then it will be great for the rest of your life.
Most important thing isto make sure your stoma is in a good location, even if its only tempoerary. Be sure you wear your regular clothes not comfy sweats.
Good luck!
Posted 8/15/2011 3:15 AM (GMT 0)
I'm definitely opting for the j pouch. I can't wait.
I wish I was like others that have years of remission but that's not the case.

I just ever want my daughter to see me sick like this again. I'll do anything for her!
Posted 8/15/2011 6:32 AM (GMT 0)
Wow, this week is quick!

I hope all goes well.

q
Posted 8/15/2011 12:39 PM (GMT 0)
The sugery is tough but it's SO worth it in the end. I had mine done in two steps: First the colectomy and creation of the j pouch. I had the temp ileostomy for 3 months then the second surgery was the ileo reversal (takedown). For the first step I was in the hosptial for 8 days and they did an awsome job of keeping me comfortable (pain wise). After I got home it took some time to get used to the ileo...that was the hardest part for me but I knew it was just temporary so I dealt with it. After a couple of weeks I was up and about and going about my daily routine. The takedown surgery was MUCH easier and I had very little pain afterwards. I was in the hospital only 3 days for that. You go to the bathroom quite a bit in the beginning but after a few weeks it slows down a lot. ANd there is no urgency so it's not a huge deal. Two weeks after takedown I was enjoying a cheesburger and milkshake with fries...something I hadn't been able to do for years with UC. I would do it all over again in a heartbeat!!!

Best wishes to you! Let us know how you make out. :)
Posted 8/15/2011 1:17 PM (GMT 0)
make sure you take probiotics with all the antibiotics they're going to give you after surgery. have someone competent to listen and pay attention when the nurse is explaining how to care for your new attachments, in case you don't take it all in.
congratulations!! hope it all goes perfectly.
Posted 8/15/2011 1:27 PM (GMT 0)
I forgot to add: Have a home care nurse come to help you at home for the first few days when you come home from the hosptial. My insurance covered it. I was really nervous about changing my appliance, cutting the hole for the stoma, ect. and that really helped me a lot to have a nurse there. After I did it on my own with her there making sure I did it all right I was totally fine doing it myself.
Posted 8/15/2011 5:33 PM (GMT 0)
tiesto81: I finally feel like I am getting my life back. I've had some problems after surgery: cuffitis, abscess and now possible pouchitis. So far none of these have been as bad as my UC. I have not missed any work this year due to the set backs.

I pretty much eat all foods. I eat nuts, raw veggies and corn and raw fruit in small amounts though. I can tolerate some spicy food, but I feel the burn if I eat hot peppers. The only food I don't tolerate well is straight milk. I have no problem with cheese, yogurt and ice cream. But I had this problem prior to surgery as well.
Posted 8/15/2011 5:47 PM (GMT 0)
lild - Best of luck to you!! Keep us posted.
Posted 8/15/2011 11:18 PM (GMT 0)
Karbear,

Glad to hear you re doing well! Do you think that as time is passing complications are getting less? How is th frequency? Thanks for the info!
Posted 8/16/2011 6:14 AM (GMT 0)
I've had the surgeries described above for my j-pouch. The recovery time is longer than I anticipated but I've had some complications that are not the normal case. That all said - I wish I'd had it done years ago. Good luck and Godd Bless.
Posted 8/16/2011 6:16 AM (GMT 0)
I've had the surgeries described above for my j-pouch. The recovery time is longer than I anticipated but I've had some complications that are not the normal case. That all said - I wish I'd had it done years ago. Good luck and Godd Bless.
Posted 8/16/2011 6:18 AM (GMT 0)
I've had the surgeries described above for my j-pouch. The recovery time is longer than I anticipated but I've had some complications that are not the normal case. That all said - I wish I'd had it done years ago. Good luck and Godd Bless.
Posted 8/16/2011 4:58 PM (GMT 0)
I would say time has definately helped.  The surgeon told be it would take about a year for everything to adjust and some see continued improvement past that.

I'm currently dealing with pouchitis so my frequency is up a bit.  Before the pouchitis I was going 6-10 times a day depending on what I ate.  I'm not overly cautious with my diet when feeling good.  With UC I was going 30 times a day, so there is a marked improvement.

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