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Pre-op visit tomorrow for Step 2 of 3

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Posted 4/8/2013 6:25 PM (GMT 0)
Well, it's almost here... my pre-op appointment for step 2, which is scheduled to take place in 23 days (but who's counting?). As far as I know I'll be having a proctectomy (rectum removal), j-pouch construction, and the creation of a loop ileostomy.

Questions in mind so far:

- Explain exactly what will be done during this procedure
- Will there be new incisions? Will the new stoma be at the same site? Will the new stoma be the same size?
- How long will the operation take?
- How long will I be in the hospital?
- Will I need drainage tubes after this surgery?
- How long before I can return to work?
- What kind of pain management will I have immediately post-op and after discharge?
- How will recovery from this surgery be different from recovery after step 1?
- Will I need to take any new medications (e.g. steroids?)
- I have UC inflammation in the rectum now (pass bloody mucus 3-4x/day). Is it preferable to leave it alone as I've been doing, or would it be better to try to manage it with a steroid foam before surgery? [sidebar: my GI tells me this hasn't been studied so it's really a crapshoot as to which is worse for surgery, active inflammation vs. weakened tissue from steroid use, but perhaps my surgeon has a personal opinion on the matter]
- How much rectum will be left?
- How much time is typical to wait between this surgery and takedown?
- Are there different dietary restrictions for this surgery? Will I need to go back to GI soft and low residue like I did after Step 1, and for the same length of time (six weeks)?
- How soon after this surgery can I have intercourse?
- How many of your j-pouches have failed? How many pouch excisions have you performed? Are there any factors in common you've noticed among patients who have had problem or failed pouches?
- Is there typically drainage/mucus/etc from the pouch between surgeries? Are patients usually continent or will I need to wear a pad?
- Will I have the same restrictions on activity after this surgery? What about after takedown? When will I be able to resume heavy lifting and ab work?
- Would it be beneficial to start taking probiotics now/after Step 2 or might as well wait until after takedown?

All I've got so far... Any more suggestions welcome, and I will be sure to update with more info after my appointment!
Posted 4/8/2013 6:30 PM (GMT 0)
Hi Liz - I have nothing much other to say other than WOHOO!!

The only thing I know from other's experiences it that the stoma was moved.
Posted 4/8/2013 9:59 PM (GMT 0)
thats a whole lot of questions! seems like you have more than enough covered.

ok .. I do have one to add though.. how will your output be managed. Meaning.. will they make sure that your output is minimal enough before releasing you from the hospital so you don't have to get readmitted for dehydration management. This is a hugie with a loop ileo. Basically you don't want them pulling that iv filled with fluids and then sending you home two hours later. You have to know that your body is working properly so that you won't be getting dehydrated.

So good luck with the pre-op appt... and getting ready for the next big op.
Posted 4/8/2013 10:03 PM (GMT 0)

ActiveUCer said...
Hi Liz - I have nothing much other to say other than WOHOO!!

Well I'm glad someone is excited. I'm a mix between annoyed that I have to take a step back with my health and scared about having another operation and potential complications. I was so sick with UC before Step 1 that I knew virtually no matter what I would end up better off (and I count permanent ostomy as much better off than how I was living with my colon), but I feel so good now that I'm sure I will feel much worse after this op. Oh well.
Posted 4/8/2013 10:22 PM (GMT 0)
Pluot, go ge' em! I will be step oneing (and I may well decide to stop at one- depends on now everything works out) about the same time as you step two and we will sync our good vibes for healing. You kind of know the drill now at least even though now it is going to be a loop for a bit.
Posted 4/8/2013 10:56 PM (GMT 0)
Step 2 was rough for me, but I developed an abcess and got very ill. I feel great now. The new stoma is kind of annoying. I find that I empty a lot more, BUT you will only have to deal with it for 3ish months. Good luck.
Posted 4/9/2013 12:55 AM (GMT 0)
I can understand Pluot. I'm trying to get in shape (both for my general fitness and to lose weight so I can have my next surgery). It's hard to think...I finally get back in shape and then I'll have to be "sick" again and just when I'll start to feel better I'll be having yet another operation!

So yeah, I think it's ok to be annoyed. And it's definitely ok to be worried about ANY operation!
Posted 4/9/2013 6:17 PM (GMT 0)
I'm back! Pre-op went off without a hitch and I'm confirmed for May 1. I had a semi-irrational fear that I might have an RV fistula so my GI ordered a pelvic MRI last week, and the surgeon found the results in the computer came back negative (yay). He says he doubts I have one but that EUA is even better than an MRI so he will do that to be absolutely sure before they start anything else in the operation.

Operation will take ~4.5 hours and I'm expected to be in the hospital for 5-7 days, same as step 1. He says he expects the stoma will be at the same site. He had previously said he would try to do everything without any more incisions (my colon was removed through the stoma site during step 1 so I have *no* long incisions, only port sites for laproscopy) but now thinks he will do a ~3" vertical incision below my belly button for the rectum removal and pouch construction. He plans to leave 1.5 cm of rectal cuff and would like to wait 10-12 weeks after this to complete step 3. He says that because I will be more accustomed to the ileostomy and have more energy now, if everything is normal I will be able to return to work about 3 weeks post-op. Finally, he told me that he has made 700+ pouches and about 15 have failed, mostly due to chronic pouchitis.

The PA tried to tell me to do a bowel prep the day before surgery, LOL. I was like "uh, I don't have a colon" and then she understood, thankfully. I've officially gained 15 lb since my pre-op visit for step one -- very happily!!! Most of the rest of the weight that I lost (40 lb total during UC) was muscle that I can't regain until I start lifting heavy, so I'm happy where I am now.

I didn't ask about intercourse... because my parents were with me... and although I am 26 I obviously have the maturity of a 12 year old. I'm sure I'll find out sooner or later (and it doesn't affect my decision to have surgery, haha!)

Sara I'm so glad to hear you are doing well now, I felt awful for you reading your account of post step 2 :( Takedown soon!!
Posted 4/10/2013 4:06 AM (GMT 0)
Happy to hear the appointment went well...sounds like you are pretty much ready for step 2!! I lost about 45 pounds during UC and a good bit of it was muscle, but probably not as much as you. But...You saying you've gained 15 pounds back since surgery makes me feel like I need to slow down on the eating...BIG time. I blame the prednisone...yeah...that's it!! :)
Posted 4/11/2013 1:13 PM (GMT 0)
Hi Liz, That's both good news for you and encouraging news for myself as I'm going on May 13th for step 2. I, like you, was in bad shape before and after step 1 but am now in very good condition so my worst fear of course is getting a nasty infection like I did the first time. Best wishes to you and let us know how it goes.

Bruce
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