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Surgery help please

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Posted 9/1/2016 3:03 AM (GMT 0)
Hey all. I'm going to be getting a 3 step j- pouch surgery on the 13th of September. If anyone has any tips or advice of what to expect after surgery, I'd really appreciate it. Comments on here, or direct messages would work as well. Thank you so much!

Tiny bit of background. I was diagnosed colitis about 10 years ago to the date. I've tried asacol, lialda, humira, entecort, uceris, entyvio, mercaptopurine, and probably more stuff that I can't even remember. I have been on prednisone A LOT. I have only been off of it completely for about 2 weeks total in the last 3 years. I've tried tapering down before surgery, I'm at 25mg a day now; currently I'm having the worst joint pain that I've had in my life. I am just hoping that my body will recover well after the first surgery. I really don't know what to expect.

Again, thanks in advance for any comments.
Posted 9/1/2016 2:05 PM (GMT 0)
I had a two step last October. It is a rough surgery so be prepared for some soreness and pain. You must get up and walk when they allow you to, it helps get your bowels working again and it will help with any pain. It will be a bit rough at first but it will help. Become good friends with your ostomy nurse, she will be a wealth of information to help you with your appliance and any issues that may arise with your stoma. I had a few rough patches after surgery, there is no telling what can happen. I had to get open surgery due to scar tissue in my abdomen from a previous surgery. He couldn't tell till I was under. My surgery for the most part went well. I did develop a couple infected abscesses in my abdomen which required two seperate hospital stays. I had a blood clot issue as well. It was determined a jpouch staple came loose and caused the infection so they had to do exploratory surgery to find the leak. All in all, I had reversal surgery this past Feb and I'm doing well. I am dealing with a bit of pouchitis but it's tolerable compared to where I was prior
Posted 9/1/2016 4:27 PM (GMT 0)
If I could give any advice it would be these two things:

1.) Hope for the best but plan for the worst. (Meaning just in case of complications)
2.) Have LOTS of patience with yourself while healing and adjusting.

I had a 2 step procedure done 6 yrs ago. After my first step I developed an abcsess/infection that needed to be drained and took some time to heal up. I just wasn't expecting that so that's why I mentioned to plan for unseen things.

My step 2 (takedown) went smoothly....no issues with that procedure. But just expect things to be a bit nutty for a little bit after takedown. That's where the patience part comes in!

The end result for me has been great. I'm so happy I had the surgery. I would say that for me the hardest part was the temporary ileostomy. I just didn't do well dealing with it.....hated it. But I made it through. It's tough going through it all but the end result is very much worth it. Best of luck!
Posted 9/1/2016 7:03 PM (GMT 0)
I had 3 steps and I am doing great now. The surgeries are not easy, and living with the ostomy isn't the easiest (simply because you're focused on getting to the next step), but overall, it's a small period of time in the overall big picture. I have been able to do so much more since i had surgery. I can travel, go out, see friends, work full-time, avoid doctors... I was living like someone twice my age prior to surgery - always seeing doctors, on drugs, getting constant blood work. It wasn't me. Actually the first ileo, the end, is very easy and you will likely get used to it quickly. I was so comfortable with mine, at a certain point, I thought about not going forward with the rest of the steps. I ended up doing it though and it was for the best in my case. I am very thankful to have my life back. When people fight tooth and nail against surgery, at this point, I don't understand it. Before I had surgery, I was the same way, I would have done anything to save my colon. I am so much better off without it, without the drugs, without the expense, and without the loss of time, career growth, opportunities, confidence...

My advice is to find a surgeon with A LOT of experience. Go on a few consultations and make sure you feel comfortable with the surgeon you choose.
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