okay well my daughters father was diagnosed with UC in january. He was in the hospital for just about two months and they finally sent him home two weeks ago because he wasn't getting any better and he kept getting c-diff, so they thought he would be better off at home. anyways, yesterday he had to go back into the hospital because the pain was getting worse and his blood count dropped, and they came to find out he had c-diff again. his dr. says they want to transfer him to upmc to have surgery but he says he doesnt want to do it, he says there are too many risks and it's not worth it, he would rather just keep going to the hospital for the pain and stay on the remicade (that doesnt seem to be working). last friday we went to his sisters wedding and he had to leave within 20 minutes of being there because he was in such horrific pain, he can't hold our daughter because he's so weak, he can't even play with her or anythign because he is constantly in pain. his family and i have talked about surgery with him and the doctors and it seems like everyone is convinced that it's what needs to be done for him to get any better but he doesnt see it... well my question is at what point did any of you say enough is enough and decide to go through with the surgery? i know we can't force him to do something he doesnt want to do, but it just seems like the surgery is the answer to everyones prayers. please help....

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well my question is at what point did any of you say enough is enough and decide to go through with the surgery? i know we can't force him to do something he doesnt want to do, but it just seems like the surgery is the answer to everyones prayers. please help....

Regardless of when anyone else has said enough is enough--and many have said it well before getting to your ex's point--as you have noted, no one can say it for him or force him to do it--unless, of course, he waits until he develops toxic megacolon and becomes unconscious, or something equally drastic. I guess all you can do is collect and share the success stories you can find in abundance on this site--and hope for the best.

This message has been edited. Last edited by: Connie,

I'm with Connie on this. He has to see it as a positive step or he will likely have those complications he fears so much. A poor attitude can really drag down the success of a surgery.

I would suggest that you encourage him to seek a surgical consult. This is just a fact finding mission, not a contract to get wheeled into the operating room. While he fears the risks of the surgery, he also needs to be made aware of the risks of not having surgery. When the risks of surgery are less than the risks of avoiding it, then it is time for surgery.

Jan

When I talked to my GI doc about medication dosage, side effects etc. he told me that the greatest threat facing us UC patients is insufficient treatment. In other words, not treating the disease adequately is more likely to cost us our lives than using "aggressive" treatments. But this has to be his choice. Perhaps because he's only had the diagnosis since January, he feels he hasn't had it long enough to warrent surgery. If so, my message to him is to look at the quality of life (or lack of it) rather than the length of time he's had the disease, when considering surgery. My surgeries involved 8 months of hell, but it was all worth it. I don't regret my surgery at all. I only had UC for 4 years before being operated.

I too was pretty sick with UC and very reluctant to give up my colon despite the recommendations of several doctors. I had issues with having to wear a "bag" and all of the stigma I imagined came with that.
The deciding factor for me was my daughters. When I thought of the possibility of them growing up without a dad the decision became very easy.

The deciding factor for me was when I could not even make a five minute trip out of the house without having accidents. I was unable to work and unable to participate in my children's lives. I missed many baseball games and concerts. I missed daily life also as I spent most of it on the couch a few feet from the bathroom. I, too, was VERY stubborn about having the surgery. I did not want to give up my colon and face the potential of an ileostomy for the rest of my life.
Your husband has to make the decision on his own and he will. Remember that he is dealing with a lot emotionally that you can't see, along with the physical that you can.
Best of luck to you and your entire family. Continue to be the caring, supportive wife that it sounds like you are!

I echo Jan's thoughs as well. My dr told me I would probably be dead in six months without surgery and it was something they had pushed for years. I was young and stubborn but hearing the potential death sentence made me sit up and start investigating alternatives. Please check your pros and cons at this point in the game. Does your hubby read the posts here?

okay well he got out of the hospital saturday morning and went back in 2 hours ago..... he still doesnt think the surgery is worth it even after reading all the info i've given him.... and as if him being sick isn't enough our daughter has had pneumonia for the past week and he can't even be around her cuz his immune system is so low, so i've been passing the video camera back and forth with his mom so he can send her little messages and so she knows daddy loves her..... it's just so heartbreaking when she doesnt feel good and all she asks for is her daddy.... it about killed me last night when she was getting ready for bed, she picked up the phone and started mumbling something then she said "night night daddy, i love you, miss you" then blew a kiss into the phone and went to bed.... he hasn't been around her that much the past couple months so he doesnt see how much this all affects her..... i know he's going through alot with having this disease but i just wish he would look at what it's doing to everyone else.... ya there are complications with having the surgery i get that, but he acts like being able to be with our daughter and be an actual dad to her isn't even worth the risks.... i dunno... maybe i'm just being selfish....

Hi allies mommy,
I'm sorry you're struggling like this. Your husband may be feeling too sick right now to absorb the needs of anyone else. I was so sick after my first step that my husband literally had to break down in tears and beg me to go back into hospital (the last thing I wanted to do since I'd only had awful experiences there and honestly wanted to be left alone to die) before I consented and let myself be admitted to the ER again. I just couldn't see beyond my own crisis to realize what it was doing to my husband and kids to have to watch me waste away. I could only lie in bed and be a long-distance Mum to my kids, I was too weak for anything else. Looking back, I can see that this wasn't tenable, but at the time I thought I was doing my best and so be it. If you can get your husband to read this, please do. I can really, really understand him. But getting surgery has given me my life back. My kids look like a huge burden has been lifted off their shoulders. I know seeing me so sick scared them to death. I wish you all good luck and I hope that you can get through this together and come out strengthened at the other end. You're not being selfish. You're just being human. And the same applies to him. There's no right or wrong course of action, unfortunately, or someone would've been able to tell you both exactly what to do. The only thing you can do is try to understand each other's fears and concerns, and work through this together. Yes, surgery can bring complications but it can also open doors to a much better life.

That's a good point Soph. And here I was being a bit upset with him. I now recall that I was just like you, I was so sick that I had absolutely no idea what reality was and how I was affecting people.

However, I'm pretty sure your husband doesn't want to end up like me - toxic megacolon. That's when the decision was taken out of my hands and I had to have emergency surgery. This usually means a longer recuperation. But he needs to be ready for this surgery. I wish we had the answer for you all. We all know how difficult this is for everyone in your family.

I hope you find a solution soon.

kathy

Dear Allie's Mommy,

You are SO close to the Cleveland Clinic, where some of the finest j-pouch surgeons in the WORLD practice. Maybe that might entice him to schedule a consult? Do a search on the site for Cleveland Clinic and Fazio and Shen, just to name a few, and see all the fabulous raves about them. Maybe if he sees a few he might be tempted to just talk to one of the surgeons up there?