My colonoscopy results (surgery or meds?)

Sometimes, I wish I could meet the person facing surgery face-to-face and have them witness me going about my day and going to the loo so that they can actually SEE that life is so much better since surgery as I realise it's so hard for them to imagine without actual proof. To empty my ileostomy takes 2 minutes at most. I'm in the loo, empty and I'm out of there. No pain, no sitting there for ages. I have no excuses to get any reading done while in the loo :(

I empty my bag approx 6-8 times a day but there is no urgency (I don't HAVE to be there within 30 seconds... nor 1/2 hour usually) and no pain and no blood. You couldn't pay me enough money in this world to go back to my UC days.

Sue,

Thanks! I am out living my life. I do like to check in every once in a while, especially when people are making this hard decision. You helped me and I am eternally grateful. I don't think I could have done this without seeing what great success you had, so thanks! I still think my pouch is "maturing" and getting better, but I am very happy with my results so far.

As far as surgeons, Dr. Geisler is in Pittsburg and it looks like he was a top doctor in 2011. Here's the link...http://www.pittsburghmagazine.com/Pittsburgh-Magazine/Health-and-Wellness/2011-Top-Doctors/index.php/name/Dr-Daniel-Geisler-MD/listing/36355/

He was supposed to do my surgery when he was at Cleveland Clinic and when I met him, I was so impressed. He specializes in doing the keyhole lapro surgery so very minimally invasive. I was heartbroken when they called and told me he was moving. As life works though, I had a wonderful surgeon who I can honestly say I love :).

Good luck to you!

It means they do the surgery through a few small incisions. Way preferable for someone like me because I scar so badly.

I would love to meet some post surgery people. I think it's hard to understand what it's like without meeting someone but I am thankful that I have the perspective of those who have been through it who continue on this board. It helps me to remember that you don't NEED a colon to live comfortably. I am not rushing to remove mine but I am aware that if I need to, life will go on. It took me a long time to realize this and the more I've researched, the more I've seen it to be true. Go on google and look at pics. There are some great blogs written by people who documented their entire process. Some of the images are disturbing but once it's all said and done, they are off living their lives. I am generally a wimp when it comes to looking at stitches or bruises.

Wyhat about her fear of rectal infllamation indicating no j pouch. Did the successful j pouches have that same symptom and fear. I do as well. I feel as if the rectal inflammation for me is so acute, the surgeon will get in there and say they should not connect, even in the second surgery. But most uc ers have bad rectal issues, right?

allswell said...
Wyhat about her fear of rectal infllamation indicating no j pouch. Did the successful j pouches have that same symptom and fear. I do as well. I feel as if the rectal inflammation for me is so acute, the surgeon will get in there and say they should not connect, even in the second surgery. But most uc ers have bad rectal issues, right?

My UC was very active and severe in my rectum. Thats why I had so much blood loss. With the j pouch surgery they remove your rectum. I haven't had any issues at all thank goodness.

We must have been typing at the same time. :)

Thanks

Conquer UC said...
Interesting discussion, great to hear so many happy stories and that there is life after a colectomy.
Just wondering, so what decides then if a person is going to get pouchitis? Coz clearly its not related to having proctitis with uc. Is it related to how good the surgeon is?(how the plumbing is connected) or what then?

I honestly don't think there is any rhyme or reason to it. It's strange how some people get it frequently and others never get it at all. My sister has has her j pouch for over 20 years now and she said she's never had pouchitis. When I asked her if she ever had it she had no idea what I was talking about. I'm going on two years now and knock wood, I haven't had it. I asked my surgeon about it and he said about 40% of j pouchers will experience pouchitis at least once. He also said to have chronic pouchitis is rare.

Hi,

Just posting my two cents worth. My son was very sick with UC and ended up with a colectomy and a J pouch at 18 yrs old. It was truly magical how the day after his colectomy you could see the health returning to him.

Surgery is very complicated and there is the possibility of complications. However most complications just mean a slightly longer hospital stay and do not result in long term problems. You should though have a serious talk with a first rate colorectal surgeon (you want someone who has done a zillion of these operations) and get ALL your questions answered. My son did have more than his fair-share of complications but our only regret is that he did not have the surgery earlier. It was not until he regained his health that he realized just how sick he had been and how much UC had controlled his life.

He is now about 3 years post his colectomy and is healthy in every way. He is off at university and not one of his new friends has any idea what he has been through (unless he tells them). He is working for a landscaper and taking flying lessons this summer (up in a little airplane for hours on end). Both of these are things that he never would have been able to do when he still had his *%^$* colon.

Anyway, this is a huge decision. Talk to as many people as possible. There are those on this site who will say that surgery should be the very last thing. Many of us are here to say that we do not agree and that we are living very full, healthy lives with either an ileostomy or J pouch. There are pros and cons to both surgery or drugs. Become educated with facts and between you and your doctors make the decision that is best for you.

All the best,
Cathy

IndianWaldo,

I do not want to lead you astray. I did not say the life after surgery is "sunshine merryland". There are definitely life changes and with any surgery comes the possibility of complications.

However, in our case, surgery completely gave my son his life back. He has a "new normal" that means numerous trips to the bathroom a day and usually being up once during the night. We know that we have to be on the watch for pouchitis but also know that it is usually dealt with with a 2 week course of antibioitics. And anyone who has had any sort of abdominal surgery has to be aware of possible obstructions.

For us, the paramount aspect to this whole ordeal is that my son is now healthy in every way. He has regained all his weight, goes to the gym, has every blood test come back completely normal (his family doc has stopped having blood tests done), has more energy than he can remember and simply is living life exactly the way a young man should.

I fully believe that the most important part of this equation is to have an extremely skilled surgeon. This is really major surgery and there are so many judgement calls along the way.

Wishing you the best,
Cathy

Surgery is not a cure and should not be presented as one.
Please do your homework and talk to people on both sides of the issue.
Here is a link of a study discussing some of the not so great results from surgery:

http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html

"The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."

Somedude said...
Collicat,

how many trips...normal should be between 4-6. I don't call that numerous, I used to go 3 times before being sick.

I don't consider 4-6 numerous either. My hubby has a healthy colon and he goes 3x a day. And he has more urgency than I do! :)

24 hours / 4 hours = 6 BM

6BM is a standard.

Seems good to me.