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Question for J-Pouch/Surgery Veterans

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Ulcerative Colitis
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Posted 3/25/2014 4:55 PM (GMT 0)
I'm heading to Cleveland Clinic next month for a J Pouch consultation.  Are there any questions that you feel are important to ask a surgeon concerning the procedure, recovery, etc?  I have questions about the mechanics of the procedure, the recovery time and how to deal with any complications since I live 3 hours from the hospital but I'm sure there are things that I might not be thinking of.
Posted 3/25/2014 5:14 PM (GMT 0)
My questions from my first consult, and UCWarrior's list of questions (another happy healthy poucher!) which is more complete, are both here: www.healingwell.com/community/default.aspx?f=33&m=2606824
Posted 3/25/2014 5:20 PM (GMT 0)
Thanks Pluot! Awesome! I did not realize that a list was already out there. Lots of great questions on that thread.
Posted 3/25/2014 5:21 PM (GMT 0)
Sure, no problem! I wrote about my consults a bit on the blog too (link in sig) but that thread is really helpful, I send it out a lot.
Posted 3/25/2014 5:28 PM (GMT 0)
Was the 3 step procedure mandatory because of Prednisone? I've been on at least a low dose of prednisone since diagnosis and would prefer a 2 step if possible.
Posted 3/25/2014 5:38 PM (GMT 0)
It's at the discretion of your surgeon. I consulted two surgeons and they both said they would not consider a two step procedure for me. They cited my use of prednisone and Remicade. I was also just in pretty bad shape. I was still having 10+ BMs per day, lost 40 lb, very obvious Cushings symptoms (thinning skin, giant moonface, etc), etc. It's possible if I had simply seemed stronger at the time they might have considered two step for me. Knowing what I know now about how hard step 2 was, I am 100% glad that I had three steps instead.
Posted 3/25/2014 5:41 PM (GMT 0)
Thanks Again. Your blog is great btw.
Posted 3/26/2014 4:24 PM (GMT 0)

Pluot said...
It's at the discretion of your surgeon. I consulted two surgeons and they both said they would not consider a two step procedure for me. They cited my use of prednisone and Remicade. I was also just in pretty bad shape. I was still having 10+ BMs per day, lost 40 lb, very obvious Cushings symptoms (thinning skin, giant moonface, etc), etc. It's possible if I had simply seemed stronger at the time they might have considered two step for me. Knowing what I know now about how hard step 2 was, I am 100% glad that I had three steps instead.

Me too, Our/my surgeon (Pluot and I had the same surgeon) would only do a 3-step procedure because of the Predisone and how sick I was. He did a great job on my first two surgeries.

I'm currently in the hospital right now recovering from step-2. The first step was really easy for me but step-2 is kicking my butt; I can't imagine combining everything into only 2-steps with being as weak as I was for my first step.

I understand why people want 1 or 2 step j-pouches compared to a 3-step but living with a temporary ostomy isn't as bad as you think, plus you'll feel so much better/healthier after the first surgery.
Posted 3/26/2014 4:44 PM (GMT 0)
ks, what's going on with step 2? How long have you been in so far??
Posted 3/26/2014 5:08 PM (GMT 0)
Sorry you're having a rough time ks. I remember how I felt. And I'm a two stepper so I had step 1 and 2 combined. That was hands down the toughest thing I ever and probably will ever go through. But so worth it. Hang in there!
Posted 3/26/2014 5:27 PM (GMT 0)
You will be in good hands at the Cleveland Clinic. I would ask your surgeon for a list of his/her jpouch patients that you could talk with. I think it's always great to meet or talk with a prospective patient. I've done loads of outreach for my surgeon...and surprisingly met lots of extended family in the process. Patients as well as their families love to see that I am healthy; they are so used to seeing the unhealthy.

Sue
Posted 3/26/2014 5:45 PM (GMT 0)

Pluot said...
ks, what's going on with step 2? How long have you been in so far??

Liz,

Just dehydration issues, nothing too complicated or serious. I'm on day 13 in the hospital, I was expecting to be out about 6 days ago.

I maxed out the doses on Loperamide & lomotil without it getting my output down to a level were they would release me. I'm still around 2 liters of output, my max was above 6 liters.

They just started me on Tincture of Opium this afternoon...this stuff tastes horrible, think of the worst tasting cough medicine that you've ever had times 100.

I'm in no rush to get out of here, I don't want to rush it and end up back in the hospital due to dehydration.

I'm off all pain meds (including oral Oxy), they even unhooked me from the IV pumps, I'm walking around and feeling good. I just have to get my output down to normal levels.

Post Edited (ks1905) : 3/26/2014 11:48:15 AM (GMT-6)

Posted 3/26/2014 6:06 PM (GMT 0)

ByeByeUC said...
Sorry you're having a rough time ks. I remember how I felt. And I'm a two stepper so I had step 1 and 2 combined. That was hands down the toughest thing I ever and probably will ever go through. But so worth it. Hang in there!

Marianne,

I keep telling myself that it is only temporary and it is worth it...I find that very reassuring and comforting to myself but it's been an adventure.

All this stuff is unique to me so please don't judge j-pouch surgery on my painful experiences....I'm still super happy that I had surgery.

Out of the operating room my epidural pain pump button wasn't working so after the anesthesia wore off I was in a world of hurt and it took them a couple of hours to realize that the button wasn't working and I wasn't getting the pain meds that I needed and they replaced the button.

The next day the same pain pump's power supply failed and it stopped giving me pain meds through the epidural. I ended up puking from the pain (which hurt even worse since I had abdominal surgery).

The third day my epidural fell out of my spine so I was without pain meds again.

The 4th day I ended up so dehydrated that I vomited again which hurt my abdomen. It felt like a really bad hang-over.

I'm on day 13 and I feel great now, I'm walking around, eating, doing some work and relaxing. I probably feeling about 80% right now and without any pain. I'm off all pain meds now.

I'll be back here in about 2 months for the reversal, they said that I'll be in for 2-3 days and it's a very minor procedure compared to the first 2 steps.

All of this is still better than UC. When the epidural was working properly I really had no real pain to speak of.

Post Edited (ks1905) : 3/26/2014 12:14:36 PM (GMT-6)

Posted 3/26/2014 7:40 PM (GMT 0)
Oh no, sorry to hear that buddy!

I actually kind of "sneaked out" before I was supposed to... my output was too high but I argued with the nurse and insisted they let me go home... actually I accused her of doublecounting my output because of shift change... not my finest hour but I really thought it was true!! Haha, anyway so then I got home and had to deal with my high output myself. It was not to the degree you're experiencing though, I definitely never got up to six liters! Wow! I hope the tincture of opium works for you. I know PSUDOC had a lot of issues with dehydration with the loop as well and she ended up doing at home IV hydration between surgeries, maybe that could be an option.

Random question -- do the stoma nurses do your changes while you're in the hospital, even though you're up and about now? Or are you doing them yourself? Just curious :-)
Posted 3/26/2014 7:52 PM (GMT 0)
Glad you're feeling better now and hopefully they will spring you from there soon. On day 10 of my hospital stay I, like Liz, pretty much insisted on going home. (I missed my kids and I just wanted to get home) They didn't want me to go home yet because of my high output. So I promised the surgical team I would drink a ton of fluids and they begrudgingly let me leave. My surgeon himself called me the next to day to make sure I was okay which I thought was really nice...he could have had a nurse call or one of his interns. I was fine....until the abscess developed. That's another story. And to think I would still do it all over again! That's how much my life sucked with UC!

I recommend having a home care nurse come for a few visits when you get home from the hospital if your insurance covers it. It's just extra peace of mind especially since this was a huge surgery. That was a big help to me.

***Sorry Indycat for highjacking the thread for a minute. Good luck with your consult at CC!
Posted 3/27/2014 2:41 PM (GMT 0)

Pluot said...

Random question -- do the stoma nurses do your changes while you're in the hospital, even though you're up and about now? Or are you doing them yourself? Just curious :-)

The Stoma nurse did the first change and then one of the nurses on the floor did my 2nd change because the stoma nurse was busy. I think they want the nurses(stoma) to do the changes instead of patients, they write up reports about the condition/size/appliances used, etc... of the stoma area. I saw one of the reports, it was 2 pages mostly of medical jargon.

I started Tincture of Opium yesterday and my output actually increased...ugh. I'm really not eating much, no appetite plus the Post-GI/low Fiber food here is gross.
Posted 3/27/2014 2:43 PM (GMT 0)

ByeByeUC said...

I recommend having a home care nurse come for a few visits when you get home from the hospital if your insurance covers it. It's just extra peace of mind especially since this was a huge surgery. That was a big help to me.

I all ready have a home nurse on order, they will come and check on me for the first week or two. I had a home nurse after the first surgery to help me learn how to change my ostomy.
Posted 3/27/2014 3:55 PM (GMT 0)
2 pages, wow!!

Sorry to hear that. You know that eating WILL slow down your output, right? Significantly! You gotta do it!

Two weeks post op, your risk of starting an ileus now is super low -- you should feel free to eat anything off the low residue diet. DID YOU KNOW that you can order delivery and have it delivered to the hospital? You just need someone to meet them at the main entrance downstairs. I ordered delivery for my mom many times. Lenny's is really good and FAST (they go back and forth to Cornell all day every day).

Eat anything thickening that sounds appetizing. Me, I'd go for some mashed potatoes, potato chips, pretzels, mac 'n cheese, a turkey sandwich, greek yogurt, peanut butter sandwich, sliced banana... Any of that sound good yet?
Posted 3/29/2014 2:54 AM (GMT 0)
Cleveland Clinic saved my life (literally...probably would have died elsewhere). I've interacted with three of their surgeons :P Ashburn, Remzi, and Hull. All are awesome in their different ways.

After your consult they'll give you some literature. A jpouch book (produced by Cleveland) and if you decide to have surgery, they'll give you a literal binder full of info. Some specific to bowel surgery, some specific to Cleveland.

I've spent about 70 days total in the standard CR ward. If you have surgery, you'll likely have a roommate. There are two beds per room and one bathroom. It sucks in a way but worth it for the care. You are on a floor of about 50 other color-rectal patients so they are used to dealing with those specific problems. The stoma nurse will likely see you the day after your surgery. Before that point you'll have a standard "post surgery" bag. The stoma nurse will set things up for your specific body. They'll take care of your changes while you are there, either guiding you or doing it themselves. They'll send you home with tons of supplies.

Most of the nurses and PCNA's are great and they are really fast about turning over your food orders as the kitchen is on the floor. So when your surgeon clears you for "soft foods" you can order it at the next meal...and sometimes they'll even give you food between meals if you need it.
Posted 3/29/2014 3:48 AM (GMT 0)
How many days after surgery should someone stay with you in the hospital? Are you normally through the worst of it a dayor two after surgery? I have two young kids at home so I'd want my wife home with them as soon as possible. I would not want any other family members to have to pay for a hotel just to keep me company.
Posted 3/29/2014 4:41 AM (GMT 0)
I didn't have anyone stay with me at the hospital and I went home after a 7 day stay and didn't have anyone stay with me there either. You should be fine.

Sue
Posted 3/29/2014 12:33 PM (GMT 0)

Indycat23 said...
How many days after surgery should someone stay with you in the hospital? Are you normally through the worst of it a dayor two after surgery? I have two young kids at home so I'd want my wife home with them as soon as possible. I would not want any other family members to have to pay for a hotel just to keep me company.

I was in the same position as you with two kids at home. My husband spent the day of surgery of course, that night and the entire next day. My in laws had our kids. I think on the third day I made him go home for a while. (We were about an hour and half away from home) I was happy to have him there though those first couple of days....it was rough. Just to have his hand to hold was a comfort. I didn't have any other family members come since it was a good drive and didn't want them dealing with city traffic.
Posted 3/30/2014 1:14 AM (GMT 0)
Thanks for the feedback. More and more, I feel like I should just opt for surgery now. Tired of the interrupted sleep, tired of mapping out a bathroom everyplace I go, tired of eating restricted diets. The potential of vediolizumab is the only thing that gives me hesitation.
Posted 3/30/2014 1:18 AM (GMT 0)
Are you ready to take vediolizumab for the rest of your life?

You are fine being in the hospital on your own so you don't necessarily need anybody there. The nurses and aids are there to take care of you! I did find it helpful to have help at home for a week or two.

They typically clear you with insurance ahead of time for a four day stay. After my colectomy, I stayed five. After my most recent surgery, I stayed a week.
Posted 3/30/2014 1:34 AM (GMT 0)
If it got me into remission, I'm ok with taking vedo or another drug for the rest of my life. I do understand it is a bit of a gamble with long term side effects but I am ok with the risks.
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