Surgery

Hi. My son, who is 18 is scheduled for surgery this Oct 7, however it may be done sooner. He was diagnosed with ulcerative proctitis 2 years ago and has gone through 3 flares, all of which have gotten worse and worse. His colitis is now through his whole colon and he can no longer find relief with drugs. He has been through 3 rounds of pred and we have gone the remicade route but he has finally decided that enough is enough and he wants to take control of his life again. Originally we were all very scared of surgery, and I have to admit that now that it is approaching very quickly, I am getting very nervous again, but the more reading we have done and the more people we have spoken with, it seems that the major complaint is that they did not do it sooner. Of course we are very worried about complications, but most can be dealt with and I truly believe that just about anything would be better than the way he has lived the last two years. I actually have a question for all you guys out there that have had surgery. Did any of your doctors suggest that you freeze sperm samples? I understand that there is a small, but significant, risk that men can come out of the surgery sterile....something like 1%. Just seems strange that no one has suggested it to us. I am about to ask our doctor, but just wondering what you guys were all told.

I am sure that you will have a lot of people add to this thread and I, also, am very interested in what everyone has to say.

I am currently in Rochester, MN being seen at the Mayo Clinic and hoping to have surgery this Friday (Aug 21). I was dx'd in Nov 2007 with severe pancolitis and have been flaring pretty much ever since. I have been on 4800mg of Asacol since diagnosis. I didn't take azathioprene (Imuran/6MP) due to a family and personal history of skin cancer/precancerous cells. I started Remicade in Feb 2009 while in the hospital for severe anemia as I was in a pretty bad flare that wouldn't go away. I have been on 5mg/kg every 4 weeks since the initial doses. It isn't doing anything for me. As of my last cscope my doc confirmed that I wasn't responding to it and due to the severity of my disease and the fact that I only respond to prednisone (steroid resistant/dependent at this point) and am still anemic he recommended surgery - soon. That was July 23rd...and here I am. I currently have D 5-30x/day with urgency and often don't make it to the bathroom.

I'm planning on having j-pouch surgery and am hoping that everything will reach once they get in there as I am willing to deal with a permanent bag, but I'd prefer not to. I'm expecting a 2 step surgery so I will have to come back later this year for takedown surgery. This was a difficult but quick decision for me as the effect that this DD has had on my life this year are such that I am looking forward to getting my life back. I am nervous and scared, but also excited. I know that it will be a major life changing event for me but in a good way. Mentally while I am prepared for this I still have a part of me that asks...what if...and then I run for the bathroom which shuts that little part up.

So far my experiences with my GI, my GP, my hematologist, and the Mayo GI have been fabulous. I never felt the need for a second opinion although I am getting one by default while here at Mayo (part of their process). I do wish that I had kept better personal records of my time on steroids, when I took what drugs (I did take Xifaxin a couple of times), symptoms that came and went, and just a basic record of my journey as it would have made answering some of the Mayo GI's questions a little easier. I have to admit that carrying in my book of medical records was a bit daunting for someone who hardly ever saw a doctor until I got UC.

I have tried making modifications to my diet and the removal of some foods has led to an improvement...but my overall quality of life is horrible compared to what it was and as I said, I'm looking forward to getting my life back.

I don't know if you have been there yet but both jpouch.org and jpouch.net are great sites for information on surgery. The information can be a little scary but you have to remember that it's like this forum...people that don't have problems generally don't hang out on the forums...they are out living their lives to the fullest. I will admit that it is nice to be able to read information provided by people like suebear and summerstorm who are both enjoying life and providing information on the forums.

I wish you luck in your pursuit of information and a solution that works for you.

Collicat - I am female so freezing sperm is not a concern for me but I have read on more than one site that people have done it and recommend doing it - just in case...

well i had surgery a little over 2 years ago, i have a perm ileo, which means i will always have a bag.

yeah its scary, yeah it hurts and yeah recovery is a b*(^&,

That being said it is SOOOOO worth it!!!

I went through 8 years of misery wiht that stupid colon that didnt want me, and then i finally realized i didnt want it either!  and i decided to beat the disease and literally take my colon to the trash!

Its awesome now, i can eat anything, go anywhere, do anything, wear anything, and nooone knows!  i promise!!!

Can it be a bit annoying sometimes? yeah.  Was it my life long dream to have a bag?  NO, but let me tell you it sure beats UC, and its really convenient, lol.  While other non UC people are in the bathroom missing stuff, im inand out 2 or 3 minutes, lol.  Much easier!

I wish i had done it the minute i saw blood, i wish i had just gone and said, just take it out im not wasting all my time on this stupid thing.  but i didnt and i cant undo that,but i can live my life now, to the fullest!!!

if you have questions and want more detailed answers come to the ostomy board and read over some of the posts already there and then ask all the technical quesitons you want we will all try our best to answer!

I had surgery on the 28th May 2009. Which removed my colon and i have two more surgeries to go to form a J-Pouch and close my stoma.

It was my first experience of any type of surgery. If you are so sick that you are continually flaring, and tried the strong medications and that is still not helping then i think surgery is a good answer. I kept thinking of the long term damage the medicines do to the rest of your body. I thought why should i ruin the rest of my body for the sake of my colon.

I dont regret at all having my surgery. My body is so much healthier with my colon gone. The body spends so much energy attacking the colon and when its gone you feel so much better.

Surgery is not easy for the first few weeks afterwards you are in quite a lot of pain. I had two complications which were some blockages but they cleared up and i can life a much better life now.