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Colorado J Pouch Surgeon

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Posted 2/14/2017 3:09 PM (GMT 0)
Looks like I may be looking at surgery in the near future as no medication has put me in remission in 4 years. Trying to do my research for a good surgeon to perform a colectomy but not seeing anything in Colorado. If I have to I will travel but id love to research some local options if possible as it would make things easier and cheaper.

Any feedback would be greatly appreciated, even if its just a recommendation on a surgeon regardless of location.
Posted 2/14/2017 5:18 PM (GMT 0)
Someone on J-pouch.org recommended Dr. Santosh Nandi.

You may want to travel out of state if you can't find a colorectal surgeon who is experienced with j-pouches.
Posted 2/14/2017 9:15 PM (GMT 0)
Many people travel to the Cleaveland Clinic for the j pouch procedure. Many j pouch "gurus" there.
my.clevelandclinic.org/departments/digestive/depts/ileal-pouch-center
Posted 2/14/2017 9:27 PM (GMT 0)
ks1905 - I have seen that group of doctors and am very curious as it looks like a good group of doctors at SurgOne, just struggling to find actual reviews. I will see if I can dig up more Thank You!

ByeByeUC - Yes that and Mayo in MN are two of the top places I have considered traveling too.

If you two don't mind sharing, where did you go and are you happy with the care and results received?
Posted 2/14/2017 10:07 PM (GMT 0)
I live in NJ and had my surgeries in Philadelphia at Jefferson University hospital. I was VERY happy and impressed with my surgeon, the hospital and the care I received there and equally happy with my j pouch results.
Posted 2/14/2017 10:13 PM (GMT 0)
ByeByeUC - was the final portion of your pouch (attachment to rectum) hand sewn or stapled? Ive seen a large debate over this.
Posted 2/14/2017 10:29 PM (GMT 0)

Hunting For Remission said...
ByeByeUC - was the final portion of your pouch (attachment to rectum) hand sewn or stapled? Ive seen a large debate over this.

stapled.
Posted 2/14/2017 10:35 PM (GMT 0)

ByeByeUC said...

Hunting For Remission said...
ByeByeUC - was the final portion of your pouch (attachment to rectum) hand sewn or stapled? Ive seen a large debate over this.

stapled.

Have you had any issues?
Posted 2/14/2017 10:39 PM (GMT 0)

Hunting For Remission said...

ByeByeUC said...

Hunting For Remission said...
ByeByeUC - was the final portion of your pouch (attachment to rectum) hand sewn or stapled? Ive seen a large debate over this.

stapled.

Have you had any issues?

knock wood....no issues. I go 4-6x a day. No urgency. I eat pretty much everything. No meds. (No Imodium). Coming up on 7 years with my j pouch. The surgeries are tough.....I won't lie....but for me it was definitely worth it.
Posted 2/15/2017 12:05 AM (GMT 0)
Were you on any prednisone going into the surgery?
Posted 2/15/2017 12:48 AM (GMT 0)

Hunting For Remission said...
Were you on any prednisone going into the surgery?

No, I had been off of it for a while (I ended up steroid refractory so no need to even bother with it anymore). I was on Remicade for a year. It worked half heartedly for a while then just stopped working altogether. I went off the Remicade in April that year and had my first surgery in June.
Posted 2/15/2017 1:32 AM (GMT 0)
Im concerned about how prednisone is going to effect the surgery and recovery. And what it will do as far as # of steps required. Ive been on 30-40mg for the last 2.5 years
Posted 2/15/2017 3:36 AM (GMT 0)
I had 3 steps, and while it seemed like the end of the world at the time, it ended up not being that bad. Actually, after the first step, my end ileo was really easy to deal with. it was the loop that made me NEED the takedown badly. I am over a year post at this point, and surgery was definitely the right decision for me. Of course, it's not the same for everyone.
Posted 2/15/2017 10:32 AM (GMT 0)

Hunting For Remission said...
Im concerned about how prednisone is going to effect the surgery and recovery. And what it will do as far as # of steps required. Ive been on 30-40mg for the last 2.5 years

wow that's a lot of prednisone. Most UC patients who are bad enough to need surgery are on prednisone prior to surgery. It's true it can slow down the healing process. Ideally it would be great not to be on it but with many patients that's just impossible. You would likely have to have a 3 step procedure because of that instead of a 2 step. That's a good topic to go in depth with when you have a surgical consultation.
Posted 2/15/2017 2:47 PM (GMT 0)
I am constantly tapering but I usually only make it to 25ish before issues begin to occur. This last summer after starting entyvio I was able to get down to 12.5mg before something happened and I had to jump back up again. since then its been the same struggle starting at 40 and going down.
Posted 2/15/2017 3:37 PM (GMT 0)
I had the same problem. In the beginning it worked great but then after time the taper down wouldn't work and I would only respond if the mg was super high like 60 or 80. I couldn't function being on that high dose of prednisone. It was just ridiculous. That stuff is pure evil!
Posted 2/15/2017 4:43 PM (GMT 0)
My husband was on the eve of J-Pouch surgery when he was able to get Xeljanz off-label and it put him min remission. He has been on prednisone like you for many years -- tapering has been a real challenge and he has an endocrinologist now to advise. She has also worked with UC patients after surgery to get them off steroids. Many GIs don't know too much about complications associated with prednisone tapers after long-term use.

Good luck to you.
Posted 2/15/2017 5:40 PM (GMT 0)
I was on Prednisone going into surgery, we weren't able to taper off before. They gave me a loading dose and tapered off after with success. No more steroids for me smile
Posted 2/15/2017 6:32 PM (GMT 0)
You need to get off of Prednisone as soon as you can. I am recovering from a hip replacement due to long term steroid use, see the thread in my signature.

If you can't find a CR surgeon that you are comfortable with then you should consider looking out of state. Traveling can be difficult after surgery but it may be worth it.
Posted 2/15/2017 6:43 PM (GMT 0)
I'm still under care of my surgeon 1 year later, you'll have to consider follow up appointments / possible complications that may arise. He also scoped my pouch recently
Posted 2/16/2017 4:45 AM (GMT 0)

ByeByeUC said...
I had the same problem. In the beginning it worked great but then after time the taper down wouldn't work and I would only respond if the mg was super high like 60 or 80. I couldn't function being on that high dose of prednisone. It was just ridiculous. That stuff is pure evil!

Did the high dose cause you to have to do 3 steps? How hard was it to taper after surgery?
Posted 2/16/2017 4:49 AM (GMT 0)

ks1905 said...
You need to get off of Prednisone as soon as you can. I am recovering from a hip replacement due to long term steroid use, see the thread in my signature.

If you can't find a CR surgeon that you are comfortable with then you should consider looking out of state. Traveling can be difficult after surgery but it may be worth it.

The prednisone is honestly my biggest factor in considering surgery. I can get by day to day and life isn't good but could be worse. the issues being is I have to be on a high dose of prednisone and all the long term side effect have kicked in and I'm miserable either sick on a low does or miserable due to prednisone on a high dose.

my wife is just finishing her doctorate of pharmacy and lectures me all the time on its long term side effects which I already exhibit too many.
Posted 2/16/2017 4:52 AM (GMT 0)

suzy-q said...
My husband was on the eve of J-Pouch surgery when he was able to get Xeljanz off-label and it put him min remission. He has been on prednisone like you for many years -- tapering has been a real challenge and he has an endocrinologist now to advise. She has also worked with UC patients after surgery to get them off steroids. Many GIs don't know too much about complications associated with prednisone tapers after long-term use.

Good luck to you.

thats interesting. what other biologics had he tried?
Posted 2/16/2017 2:40 PM (GMT 0)

Hunting For Remission said...

ByeByeUC said...
I had the same problem. In the beginning it worked great but then after time the taper down wouldn't work and I would only respond if the mg was super high like 60 or 80. I couldn't function being on that high dose of prednisone. It was just ridiculous. That stuff is pure evil!

Did the high dose cause you to have to do 3 steps? How hard was it to taper after surgery?

I don't think it's so much the mg of the dose that has to do with it but more so how long you have been on it and how recently you were on it. I had a two step procedure. My surgeon felt confident in my case to do a 2 step. I had been off prednisone for a while at the time of surgery.
Posted 2/16/2017 11:21 PM (GMT 0)
My husband had tried Remicade, Humira and Entyvio. None of those worked. Xeljanz has been like a miracle. He has been in full remission for over six months now, and is tapering off prednisone .5mg a month -- it has been extremely difficult to get off of it. He did get osteoporosis from being on steroids over 3 years.

When he was talking to surgeons, all said that a 3-step j pouch was the only way they would do it given that he was on steroids.
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