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Ulcerative Colitis
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Posted 9/10/2012 2:09 PM (GMT 0)
I'm just curious but what happens after a j-pouch surgery? Do you still have to go to regular check-ups? Or are you symptom-free and don't need to see a GI anymore.

My GI is sending me to another hospital known for j-pouch surgery. He's telling me that he's sending me there for a second opinion because at the moment he feels that surgery is the best option for me. I don't quite get it but do GI docs normally do this?
Posted 9/10/2012 2:27 PM (GMT 0)
Have you tried Remicade or Humira, 6MP or Imuran? It doesn't seem that you have done the litany of drugs for UC unless your signature is not up to date. Why is your GI considering surgery at this point?
How sick are you currently?

I had jpouch surgery 11 years ago and have been completely happy and healthy since then. I have not seen my GI since surgery and I do get a scope of the pouch every few years.

Sue
Posted 9/10/2012 2:48 PM (GMT 0)
Hi suebear
No, I haven't tried the drugs that you mentioned and my profile is up to date. Well, I had a colonoscopy done last week and my GI found a polyp that may be cancerous (will find out this Saturday). He doesn't want me to go on steroids anymore due to the long-term effects, and he was thinking Remicade, but then my scope was so bad and the inflammation had spread, and he's telling me that even if I got the polyp out, I will still have issues and that things with me are not improving at all, so he feels I should just opt for surgery. He thinks I'll have a more higher chance of living longer. So, he's telling me that he's sending me to this hospital to get a second opinion. I thought clients get to ask for second opinions. I've never heard of a doctor telling me to get a second opinion....maybe he's trying to get rid of me :(
Posted 9/10/2012 2:51 PM (GMT 0)
Absolutely not!! I think your GI is smart to send you for a second opinion...my GI did that too when he felt he had exhausted all treatment options and I was still not improving. I think it shows that your GI is considering your best interests; and making sure all bases are covered before you have to make a decision for surgery.

Sue
Posted 9/10/2012 2:58 PM (GMT 0)
Thanks, Sue... I guess I'm just in shock of the news I heard from my GI today re cancerous polyp that they found and surgery so my mind is going a bit berzerk. I thank you for the feedback :)
Posted 9/10/2012 4:05 PM (GMT 0)
Yep when the meds don't work its time for surgery. Had my step 1 of two on August third. Once everything is fine and dandy after the takedown you go to the surgeon for a checkup 1x a yr. Thats it. No meds, no doctors, no anxiety.
Posted 9/10/2012 7:04 PM (GMT 0)
I am currently on my second clinical trial for a new biologic treatment. I have exhausted all other options and I feel this might be my last kick at the "medical intervention" can before I have to entertain the surgery option.

Part of me is screaming, "yes! Let's do this already!" after 4 years of hell (constant flare, getting worse and worse all the time, never a single remission)

and part of me is wondering whether I will ever feel "normal" again, or even remember what that feels like. My dad had the surgery when it was still experimental in Canada, back in 1985 or so, and he has lived pretty normally ever since, so I'm not sure what I'm nervous about. I guess I feel like after failure after failure with drug treatments, I'll be one of the 30% who can't do the reversible pouch and might be stuck with the bag forever. Which makes me feel really really sad.

Anyway, I hope your consult and/or surgery goes well.
Posted 9/10/2012 7:15 PM (GMT 0)
Hi Penny - I'm sorry everything is coming at you so fast. Your GI is definitely not trying to get rid of you! I think your GI is keeping your best long-term health in mind. My GI sent me to a surgeon as well for a consult...and the surgeon was 3.5 hours away as that's where the best jpouch surgeons are for my area. I live in a small sized city and have three major cities closer to me than the city where my surgeon is located - but he is one of the best in the nation. So, in other words, don't even worry about being sent to another hospital as that might be where the best surgeons are for you area.

When you visit, keep in mind that surgeons operate - in other words he/she is more likely to suggest surgery than others. On the same note, you don't often find GI's telling their patient to get an operation. The surgeon will tell you your options with surgery and educate you.

I think if the polyp is confirmed as pre-cancerous or cancerous than you might need to switch your mindset. You are no longer treating just UC...but treating a colon even more prone to cancerous polyps than a standard UC colon. :(
Posted 9/10/2012 8:23 PM (GMT 0)
Hi Penny,
It sounds like your GI has your best interest at heart. I had a GI doc send me off to a surgeon for a consult because he just couldn't help me anymore. So it's not unusual. Especially if you are dealing with pre cancerous polyps. That's nothing to mess around with. It's always good to be informed and prepared. It doesn't mean you have to commit to anything right away unless of course you are dealing with cancer. Good luck with everything.
Posted 9/11/2012 12:18 AM (GMT 0)
Penny a second opinion is always a good idea on something this serious! As for going back to the GI, I have a bag, but haven't been back since I got it. I am going to see him on Wednesday, but its not related to that.

Kc, don't be sad about the thought of a bag. I promise its not bad, I love mine! No one knows it is there, I wear, eat and do whatever, whenever. I see lots of people who let the fear of the pouch failing and having a bag keep them from surgery when they want it. Don't let that scare you!
Posted 9/11/2012 12:56 AM (GMT 0)
Penny, I too think your doctor seeking a second opinion is a good thing and is doing it in your best interest. However, I must say here that if you educate yourself enough with this disease you should get to the point where you tell the doctor what you want to do and not the other way around. In my opinion it doesn't really matter what your doctor thinks or what the second opinion doctor thinks. You could get a hundred different doctors telling you a hundred different things and who knows which one is actually right. You may have the only two doctors who push for the surgery where 50 of the others may not. Does that make them right? This is your life, not theirs. Now I'm not a doctor and my opinion doesn't really matter either but, I must say that given the evidence you have provided, I believe that having surgery is right for you so I actually agree with your doctor. You don't want to mess with the big C and that is where you are at now but I don't think you should just blindly follow orders with something that has such a major effect on your life. Look at the facts and decide for yourself.
Posted 9/11/2012 4:28 AM (GMT 0)
A big thank you to everyone.

Well, I've since calmed down after hearing what my GI had to tell me over the phone last night and also reading these posts.

So my GI told me that I had a polyp about 2 cm long right at my rectum but we won't know until this Saturday whether it's cancerous or not. I had a colonoscopy done this past March and at that time, my GI mentioned to me that my colon is inflamed but it's not terribly bad, but he mentioned that it may be best to put me on Prednisolone for about 2 months. So that's what we decided. Now, I confirmed this with him last night, but the polyp that was found this past Wednesday was not there this past March. Can something like that grow in 6 months time? I was also wondering whether taking pred had an effect on getting that polyp. Is that possible? My GI explained that the polyp may have come from the time I was bleeding my bum off when no doctor was able to diagnose me as to what was wrong (between 2006 - 2008). In that case, why didn't it show on the March colonoscopy that I had?
Posted 9/11/2012 4:34 AM (GMT 0)
Sorry...so many questions!

Does having a j-pouch hurt at all? Is it painful after surgery?
My GI was telling me that the surgeon that he wants to refer me to does surgery, but also leaves the rectum there...if that makes any sense?? I have a GI that speaks another language and I'm trying to translate what he said so it's a bit difficult for me to explain. My UC is left-sided.

How does a j-pouch work? Is there like a hole? How do you use the bathroom?
Posted 9/11/2012 5:36 AM (GMT 0)
No, the entire colon and rectum go, with the exception of 2cm of rectal cuff. Basically a jpouch replaces the rectum, not the colon, so elimination is the same as it is with a colon/rectum but with less holding space the frequency is higher. No pain or urgency like with UC, though.

Sue
Posted 9/11/2012 12:15 PM (GMT 0)
     I have a permanent ileo.  I just wanted to say, God bless your GI doctor!  The one I went to for twelve LONG years was very upset when I went behind his back and consulted a surgeon.  By that time I believe I was at death's door but didn't realize it.  All my GI doctor wanted to do was try more and more meds.  I was prednisone dependent, 6MP, Remicade and Humira all failed!
Posted 9/11/2012 12:48 PM (GMT 0)
Does anyone who has had surgery and has the sack know if you can swim with one?

Surgery (especially J-pouch) is always in the back of my mind as an option for my son. I often wonder how he will go to highschool, college and start a new job with the constant possibility of being in the middle of a flare. So far, the meds only kept him in remission for three months although the enemas seem to be helping. But how many college kids want to be doing two enemas per day!

The reason I ask about swimming is that he has a passion for it. He has been swimming competitively since he was 6 years old and I think he would be very upset if he had to give it up.
Posted 9/11/2012 1:13 PM (GMT 0)
Your son can continue to swim competitively no matter which surgery he might have; permanent ostomy, jpouch, or kpouch.

Sue
Posted 9/11/2012 6:11 PM (GMT 0)
@Penny - yes a polyp can develop that quickly. I had a polyp develop between January and June of this year. Individuals with UC tend to develop more polyps and at a quicker rate than "normal" people. It has something to do with the colon always healing itself.
Posted 9/11/2012 7:08 PM (GMT 0)
Susan a jpouch or ileo won't keep your son from doing anything at all! All the things you can do without one, you can do with one.
Posted 9/12/2012 2:53 AM (GMT 0)
@ActiveUcer: Did you already get your polyp removed??
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