Hi everyone,

Just thought I would drop in a little background about us here. My wife and I have been married for almost 4 years. She is 27 and was diagnosed with UC when she was 12. She also has PSC. She has either had an allergic reaction to or not benefited from any of the treatments, medicines, etc. She has only been hospitalized once for it (when she was a senior in high school). She has seen quite a few different doctors. We were going to the Mayo in Scottsdale, AZ and were handled pretty well there. I think we will continue to go there for the liver stuff, but the GI doc we weren't really impressed with. He was ok, and I am sure he knows what he is doing, but just not the doc for us. The last visit, he flat out told her he wouldn't write any more Rx for Prednisone(yes,we understand the long term effects of this, and know she needs to be off of it, but it is the only thing that seems to at least somewhat help) and she absolutely needs to have the surgery. He highly recommended a 2nd opinion and said UCLA would probably be our best bet. Of course we set the appt., made the trip and hear the same story-- "Surgery is your best and really ONLY option." So here we are. Two days home from the consult with the surgeon where we basically said: "let's get it done and over with ASAP" now, she is having 2nd thoughts about it. I believe she will benefit greatly from having the surgery, but also understand that, as with any surgery, there are risks and possibilities of complications. I know she is scared and quite honestly I am a little scared myself, but I feel if this is the answer, she needs to have it done ASAP so she can begin the recovery and her life without UC sooner. I also can not stand the thought of waiting until she develops cancer or whatever else could happen, and then having to do it. She is still young and a wonderful woman. I feel she has had to deal with this long enough and needs to be able to "LIVE" not tied to a toilet 24/7.

UC Hubby,

I think all of us who opted to have this surgery done electively have felt the way your wife feels. I can't recall anyone in our situtation jumping up and down with joy at the prospect of surgery. I had UC for 12 years, 10 of those years were in complete remission. Then I got the flare that ended it all, became prednisone dependent, and did not respond to the immunosuppressants. My GI had been recommending surgery but I blew him off, basically I was scared and feared that I would no longer be able to lead an active life (hiking, backpacking) post surgery. Finally, on my first and only hospitalization for UC I met a nurse on the ward who had j-pouch surgery for UC. She spent over an hour with me describing her improved life. I was shocked that she was a marathon runner, that she had a baby post surgery, and that she looked so damn healthy! Just by meeting her face to face I had a glimmer of hope that life could be better so I made an appt. for a surgical consultation. It was the meeting with the surgeon that sealed the deal as he looked at me and told me my quality of life would improve dramatically.

Here I am 7 years later and very grateful for the opportunity to have had the surgery and for being in good health. Surgery and recovery were not easy but going through the process was manageable because I was healthy. Since surgery I have engaged in several international hikes (100-200 miles), backpacked, particpated in marathons, and traveled extensively abroad. I could not have done any of these activities had I opted to stay on prednisone and live with my low quality of life.

I am a firm believer in UCers becoming convinced of their need for surgery and buying into the whole process before going under the knife. Get educated, do your research, and no what surgery and recovery will entail. You won't get much of the recovery information from the surgeon or nursing staff, it's best to network with those of us who have gone through it.

Sue

Kudos to that GI who refused to keep prescribing prednisone!! Prednisone is not considered a maintenance drug for UC and it is not in the best interest of the patient to keep ordering it just because there is a fear of the surgery.

It is a rough thing to accept that surgery is the best and only option, but when it is true, you just have to suck it up and get on with it. I know, I was there, and faced the same demon. But, like Sue said, it is also important to be fully on board with it before you sign up. Knowing what you may face helps you deal with any complications that may arise. Just understand that 99% of the time the complications are temporary. Prednisone complications can be permanent and not show up for decades, so don't be lulled into a sense of euphoria from prednisone use.

Jan

I am with you all the way on cutting out the prednisone. I am all for her being off it and she knows she should be too, but the only way to get off it for her is the surgery. I think she is about to come around, it's just taking her a little longer(understandably so) to come to terms with having the surgery done.

John

As my surgeon said, in opposition to my GI at the time who wanted me to try prednisone, etc. ... it is not a matter of "if" but rather a matter of "when." Both of my parents battled colon cancer, and I saw no reason to go through miserable years of therapies only to come back full swing to face surgery later, maybe even under worse circumstances. I had a fast evolving flare of U/C and had my colon out in less than 4 months after onset. I believe that decision saved my life.

Here's hoping you have good information and feel confident in whatever decision you make.

UC Hubby,
I can relate to how your wife is feeling. I wonder about me letting the doctor talking me into waiting until he gets in there to decide if a resection will be better for me than the step1 towards a j-pouch. My gastro is the one that feels I should have my colon removed. It is so tough to make the decision. It is so final when you have it taken out. I have had uc for appox 30 years and never had to go into the hospital for it and it has been many years now that I have had only 3 to 5 bm a day so really I have been feeling very well as far as you can with uc. But I have been there with the Rowasa enemas and oral steroids, it is not fun and the side effects can be awful. Just keep supporting her and stand by her no matter what she decides. My husband has been pretty good about not giving me his thoughts on my health unless I ask. Maybe that is b/c we have beem together 381/2 years. Good luck with deciding.
babcha

I was 26 when dx with UC and within 6 months was having j-pouch surgery. Since I was critically ill at the time and had never had a remission in that 6 months, there wasn't really a choice. IN some ways I think that is easier than the folks like your wife who have to decide to do the surgery.

Bottom line, though, is that I was so much healthier and happier once the surgery was done. It wasn't easy and I"m one who had issues and eventually went to a perm ostomy, but even still, I'm glad I tried the j-pouch and I'm thrilled with my ostomy. I've been able to have one child (he's 2) and I'm pregnant with my second. COuldn't have considered this when I had UC. I've traveled, in the US and out, hiked, kayaked, worked full time till I had my baby, basically lived a normal life even when I was having issues with my pouch.

While it is a tough decision, I think most people would say that once they had it done, the j-pouch was far better than UC, even if it isn't perfect.

Well everyone, it is settled. My wife will be having the 1st surgery for a 2 step J-pouch March 26th. Thanks for all the info here.

John

Hi John,

Well, you couldn't have a much better support group than what you have here on this site. We will be sending you and your wife healing vibes, and wishing her a good recovery.

Please holler or use the jpouch site if you need anything and keep us updated with her recovery.

Now, the million dollar question, how are you doing? you hanging in there?

Megan

I hope all goes well with the surgery.Good luck and God bless.