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Ulcerative Colitis
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Posted 10/20/2009 1:30 AM (GMT 0)
Hello everyone

  I had my surgery consult today...  I met a really fabulous Surgeon.. Dr. Ho at UC Davis Medical Center in Sacramento... FABULOUS! He was SOOOO Kind and SOOOO nice...  He really made me feel at ease and explained everything to me that I was asking about.. took as much time as I wanted and I left feeling better than when I walked in..

   Anyhow, he did suggest that I eventually get my colon removed.. I don't have to make a decision right away, but with how badly my disease has been behaving, my chances of getting cancer in the future are way higher... He did tell me to go ahead and start the Remicade (which I start this Thursday AM... YEA!) and see if I can get into a good remission..  He also suggested that I have the surgery while I AM in remission to make the surgery and recovery easier than if I were to wait and have it when I should ever get sick again...

   ALSO.. he said they can do the colectomy and J-pouch all in one surgery.. he did say that some surgeons won't do that, but he has and the studies show that there is no difference in outcome if they do it in one or two procedures...  It takes an entire day for the surgery and it does require an extra week in the hospital afterwards because of the re-construction that has to  heal versus just getting a iliostomy with a bag... but I have to make the decision which way I want to go, either getting the J-pouch or a permanent ileostomy...   I am an avid horseback rider so I've got to do research on which surgery would be less interfering with that particular activity... I'd have a bag forever if it meant I could ride my horse... lol...  Anyhow..  I figure I've got a couple of years to decide on which surgery I'll have... depending on how the Remicade works and all that...

   Sooo... that's it for now..    I am really looking forward to starting the Remicade this Thursday.. I am a bit nervous, but anxious to get started on that so I can get of this darn Prednisone!!!  LONIE..... Wish me luck!!!!!! I'll be thinking about you a LOT on Thursday  ~:)

  

Posted 10/20/2009 3:14 AM (GMT 0)
there is absolutely no reason you cant ride your horse with a bag!
Im glad you had a good consult!
Posted 10/20/2009 6:03 AM (GMT 0)
Yes Summerstorm.. that's what I was thinking... I think with the J-pouch, there would be too much risk of damaging the reconstruction if I rode my horse the way I like to ride... I not only trail ride, I do western competitions such as Team Penning and ride VERY hard and fast at times... I am thinking it would be too much impact for a J-Pouch.. Plus, all the instability of the whole BM thing afterwards. He told me that for at least a year, It would be hard to tell if I was passing gas or pooping... and at night I could have spotting.. (in otherwords... pooping my pants... )Gosh..... I'd hate to be on my horse and poo... lol...

Still gonna do the research though and try to talk with people who have had either surgery to help make my decison.. :)
Posted 10/20/2009 12:11 PM (GMT 0)
Be sure to visit jpouch.org for more information about the surgery as well as to talk to more people with the jpouch. You can also ask some questions on our Ostomy forum since there are some Jpoucher's there too. Good luck with the Remi and I hope it works quickly for you.
Posted 10/20/2009 1:03 PM (GMT 0)
There is no problem being an active equistrian with a jpouch! There are several of them at www.j-pouch.org if you want to talk to them. I would question your surgeon's experience. If he said your surgery would take "all" day it sounds to me as if he doesn't have much experience. My surgery, from a top CR surgeon, took a bit under 2 hours.

I'm glad you got your questions answered!

Sue
Posted 10/20/2009 2:47 PM (GMT 0)
You know what they say, surgeons will always recommend surgery as treatment...but thanks for sharing, it was interesting info.

Good luck with your Remicade!! Think positive!!
Posted 10/20/2009 9:02 PM (GMT 0)
Thanks everybody!

I did post a question on the J-Pouch forum regarding my horseback riding and having a J-Pouch...

Also, Suebear, the surgeron I talked too is the chief of staff and director for the CR unit at UC Davis so I'm confident that he knows what he's doing. He said he could take out a colon in 45 minutes if it were an emergency, but to do a colectomy and J-pouch all in one surgery, he doesn't have to hurry and it would take most of a day to complete.. I'd rather a surgeon take his time than hurry through a procedure and possibly miss something.. I am still processing everything he said to me and my husband was there too for an extra ear so we have been comparing notes since the meeting, going over details and we both feel comfortable with him.

Regardless.. I'm not having the surgery right away, I'm going to see what the Remicade does for me and if it can get me into a good remission, then I'll probably stay on it for a while and see what happens. I can understand the surgeon reccomending that I have the surgery while I'm in good shape.. as far as making the surgery easier for both him AND myself.. So I've got a lot to think about but plenty of time to do it at least.. lol.. It feels good to have a clearer picture at least of what's going on since talking with the surgeon.. :)
Posted 10/20/2009 9:33 PM (GMT 0)
Your plan makes good sense.

I would also ask anyone at www.j-pouch.org if they have had your surgeon. I know there are some great surgeons in the Sac area but his name is not one I am familiar with. Like you say, get all of your leg work out of the way in the event you have to choose surgery at some point.

Sue
Posted 10/20/2009 9:36 PM (GMT 0)
Oh, and I hope the surgeon would have pointed out that doing a 1-step on a patient who has recently been on prednisone is not a good idea. Generally the best results for a prednisone patient is a minimum of a 2-step. The factor here is pred-use not surgical skill.

Sue
Posted 10/20/2009 10:17 PM (GMT 0)
Is this guy, by chance, speaking of a laparoscopic procedure? I had mine done at Mayo (with good results), and the first step (of two) did take about six hours. And I think the rest of his work day was pretty much blown, as surgery went--the surgeon's scheduling secretary told me at the time that he won't schedule more than one of those in a day, precisely because they are so detailed and taxing to perform.
Posted 10/20/2009 11:48 PM (GMT 0)
Susiebuddy,

Sounds like you received good info at your surgical consult. Hope everything goes well on Thurs with the infusion.

I am still waiting for my insurance to approve Remi...my Rhuemy is sending them a letter to move things along. Hoping to start Remi by the end of the month because my mother in law is coming to town and I would like her here in case I have any sort of reaction she can help with the kids.

Good luck!!
Posted 10/21/2009 1:50 AM (GMT 0)
Good luck with Remi! Have you read Paul L's posts about his surgery last October? In Toronto they took good care of him at the hospital for as long as he needed extra attention. That's contrary to many Step 1s in the U.S., where the hospitals want to throw patients out in 5-6 days; then if they have sudden problems with the stoma, bag leaks, or worse, they need help from family/friends to rush back to the emergency room to deal with the problem. Also, Paul has just described the post-Step 2 recovery situation in his newest post that Dr. Ho warned you about (RE leaking stool for a good while due to gas). Recovery likely takes longer for middle-aged patients so it seems Ho gave you a realistic explanation regarding the time frame. Hopefully, Remicade will get you back in the saddle long-term and you can do what you most enjoy in good health. / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 10/21/2009 3:07 AM (GMT 0)

i was always afraid to have surgery done.

Susiebuddy said...

   Anyhow, he did suggest that I eventually get my colon removed.. I don't have to make a decision right away, but with how badly my disease has been behaving, my chances of getting cancer in the future are way higher... He did tell me to go ahead and start the Remicade (which I start this Thursday AM... YEA!) and see if I can get into a good remission..  He also suggested that I have the surgery while I AM in remission to make the surgery and recovery easier than if I were to wait and have it when I should ever get sick again...

Posted 10/21/2009 4:10 AM (GMT 0)
Thanks so much for all the input Suebear~! Yes, the surgeon did tell me that he wanted me off Prednisone for a while before considering surgery as it hinders the healing processes.. That's why he wants me to go ahead and start the Remicade, so I can wean myself off the steroids once and for all. I will ask if anyone has heard of this doctor on the Jpouch forumn and see what anyone has to say.

And Thanks Charlotte! That's a question I didn't think to ask, about if it's laporospic or an open surgery.. OOPS.. I can always call or make another appt to see him and find out more information.... He even suggested I come in for another consult and speak with him again before actually scheduling the surgery. I'm hoping it's laporospic, but I don't know if they can creat a pouch without opening you up..

Thanks for the well wishes Old Hat.. and Yes, I did read Pauls post about his surgery and you are correct when you say that this surgeon expalined it pretty much like Paul was saying.. lol..

I do feel very scared to have the surgery and I'm not looking forward to it by any means.. .... I'm hoping the Remicade works and I can enjoy a remission for a while before taking the plunge.. I hate feeling sick and being down and it sounds like I can expect to be down for about a year following surgery if I opt for the J-Pouch surgery... I don't know if I can go a year without being on my horse... lol... It's the only thing in my life right now that brings me peace... (as sad as that sounds, it's true)...
Posted 10/21/2009 3:12 PM (GMT 0)
you know, think good thoughts- I was in your shoes too, & Remicade has given me another 2 years. It's bought me a lot of time & made me much, much healthier overall. I haven't had to take steroids since Feb. 2008- that's a long time, considering I was on them non-stop for about 8-9 months. It's very likely that Remicade will get you right into remission, & hopefully continue that way for years to come- I have noticed a decrease in the effectiveness of my infusions, but hey- it still works well enough for me to continue them. And, now that you've had a surgical consult, if it ever comes to that you're already a step ahead in the game. I found the surgeons I spoke with to be very good at easing my fears- not that they were touchy-feely hand-holders, but that they were so matter-of-fact about it- yeah ok, so we need to take out your colon, no big deal. To me it was this huge life-altering thing, & to them & the OCN nurses, it's something they deal with EVERY DAY. anyway, good luck!
Posted 10/22/2009 12:21 AM (GMT 0)
i wouldnt think you will be down a year! i had the same level of energy i had with UC within about 6 weeks after surgery. And within 6 months i was feeling close to back to pre UC.
Posted 10/22/2009 2:03 AM (GMT 0)
Aw, well if you couldn't ride your horse for a while, he would still love you and you could always brush him and give him some good love. We couldn't ride our horse for quite a few years due to his bad arthritis and we just loved on him as long as it was realistic. He was 30 =) So I'd try not to worry, you could still be at peace with him, just go chill in the barn and stuff, hehe. Also, just ride easy for a while. I'd say no posting... bleh I never liked that anyways!
Posted 10/22/2009 2:13 AM (GMT 0)

Susiebuddy said...
I'm hoping it's laporospic, but I don't know if they can creat a pouch without opening you up..

It can't be done for everyone, and it can't be done by everyone, but it definitely can be done--and if that's what your surgeon does, it would easily explain why he says that the surgery takes "all day."

You are best off with someone who has the most experience with these surgeries, but if you have access to a surgeon who has done many laparoscopic j-pouches, I can't say enough good about it. I was back to work in under two weeks both times, and needed no narcotic pain medication--even in the hospital. There is also some data to support the notion that laparoscopic surgery leaves you less likely to suffer a late post-surgical obstruction (the risk of which, IIRC, is otherwise about 25%).

Either way--good luck! It's amazing how much less onerous UC feels once you start talking to surgeons. Suddenly (for me, at least), all I could think was: "Why haven't I done this yet?"
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