How did you spouse react to wanting surgery?

   I think I made a mistake not letting my husband know about how bad I felt. It was nothing more then some blood at first but then I was bad for a time, at least for me but I am a wimp. I hate the part of being tied to a toilet due to the urgency. I did not tell my husband about the accidents, urgency or the nausea. I did not want him to worry about me. Well then I got quite a bit better. No cramping nausea and I had mostly formed stools. I really thought I was on my way to getting better. A couple of weeks ago I started getting gas then mucus and gas. Now I am back to feeling sick to my stomach, cramps urgency and D. So even though I kept up with my meds I spiraled down again. I want to be done with meds and feeling like this. But my husband is now very sad. He is looking like I told him I want my legs cut off. Part of it may be when I had bowel surgery in 05 it was because I had a ruptured colon due to an infection and I was very very sick. I had a 106 fever so he was terrified I would die. I am wondering if some of those memories are coming up and that is why this affects him like this. I asked him if the thoughts of me having a bag again bothered him and he said no but the thought of me loosing my colon made him sad. Well it makes me sad too. I wish I never got this. After years of diverticulitis and infection after infection I thought I was done with colon problems after my colon resection. If I knew then what was in the future I would have told the surgeon I was done with my colon then and leave the ileostomy.

         So is this normal for spouses to be sad like this? I thought he was going to cry this morning when I was telling him about the different surgeries.

My husband doesn't really get it either. I asked him yesterday if he thought I was making a mistake trying Remicade. Meaning, if he thought I should just get my colon out and be done with it and he looked at me like I was being ridiculous. I keep trying to make him understand that me getting me colon out at some point is a VERY REAL possibility and he just can't quite wrap his head around it. In fact he's a little condescending when I mention having my colon out. Like "Yeah, yeah honey. Uh huh. Suuuuure. They're going to take your colon out." I think part of the problem is, I'm fairly stable at the moment but I'm on prednisone. He thinks I'm "better." I can't quite get him to understand that being stuck on prednisone doesn't mean I'm "better." So, I think when/if it does come to surgery he's going to lose it, too because he's not really even accepting that it's a possibility. :o(

I think Imagardner2 and Quincy have given you some great advice. I'm not married but I kept the severity of my illness and all its gory details from my family because in the early days they just couldn't understand why I wasn't getting better and insisted that it must be the doctor's fault or my diet. As I became more educated about my condition it was just easier for me to deal with it on my own. Distance helped, my family is several hours from where I live. When I did finally opt for surgery my family was aghast as they should have been. They never heard the horror stories surrounding my 2 years of being sick and just assumed I was better. So I kind of pulled the rug out from under them and once I was convinced surgery was the best option they were left trying to catch up and deal with their emotions of my announcement. Anyway, up until the night before the surgery they were still not on board but when they saw me after surgery and saw that I finally looked well (yes, 12 hours later I looked great) they all came around and admitted that I had done the right thing.

I'm not sure I could have told anyone but my GI about the accidents I was having so I understand your reluctance to share that. But I think now is the time to explore why you kept the information from your spouse and try to explain it to him so he understands and doesn't feel left out.

Sue

I told my husband a couple of years ago that I would probably end up needing my colon removed. I wanted to plant that seed early on to give it time to settle in. Even after all the medicines failed I'm still not sure he thought it would happen until we met with the surgeon and he said it should come out. Something about hearing it from someone "official??" He got on baord and a week later my colon was gone. I've noticed that even in the nearly 10 weeks it's been since I had it removed, that some people will feel sorry for you, mainly because you have to have a bag. People think these are for grandpas and grandmas, not younger people. It's really no big deal, though, and mine is temporary. But I would take the bag over UC any day.

I think it is hard for people to understand how bad UC is. I haven't had any accidents in about a year(thanks to remicade) but I was so embarrassed. I wasn't going to say anything to anyone but my kids were in the car and they told. My brother just said to me once(someone also said this to my mom) just hold it. Yeah sure. I think people just think we go to the bathroom alittle more than they do. I also get the if you would just eat better it would all be fine. My husband thinks I should try all medications before surgery(so does my mom). I'm the one who is more scared. Will he think I'm gross if I have a bag. He never said that and never would but I worry about it. He doesn't talk about it much because he said he can't handle me being sick. He gets freaked out. I tell him everything and he is very supportive. I think it is just hard for people in general to understand how our lives are. I'm sure I will need surgery. I'm on remicade and it isn't healing my colon. It has stopped the bathroom problem but my colon is still severe uc throught my whole colon and I've been on it almost a year. UC sucks I wish I never got it also and I ask why me sometimes. I wish you the best of luck your not alone.

 Thankfully when I showed my husband the side effects of the drugs stronger then the rectal meds and 5 asa he point blank said I do not want you taking those.  I am giving this just a little bit more time since I do have that nagging feeling of what if I suddenly get better? I am close to making an appointment with my doctor but I am waiting to see if this latest crash is a hiccup or a  spiral downward. I did make sure to tell my husband that my stomach has been giving me fits for the last few days when he asked how I was. That is so hard for me since I see it on his face how sad he is that I dont feel well.

     How long did it take those of you who had surgery to be up and around pretty well. I know the first few days are ugg awful I have been there done that but I had an awful infection making me feel much much worse. It was several weeks before I had any strength.

Post Edited (mom_JnJ) : 6/7/2010 9:09:29 PM (GMT-6)

mom_JnJ said...
I am giving this just a little bit more time since I do have that nagging feeling of what if I suddenly get better?

I think that feeling is very common, because flares can come and go. One day the body starts attacking itself, and then another day it stops attacking itself. It's hard to know when it will decide to attack or not attack.

I've been stuck in "good day, bad day" mode for quite awhile now. Sometimes, while in the "good day" mode, I eat things I KNOW I shouldn't and I pay dearly for it. Saturday I had a terrific day and we went to Atlantic City. I ate at the buffet, but good stuff until I hit the dessert line. I ate 1 canoli and some ice cream with chocolate syrup which I hadn't eaten for months. At 1:30 in the morning all HELL broke loose...I was up till 6:30 am on the john....and I know I have no one to blame but myself, but OOOOOH...it was sooo good going down..NOT so good coming out. Thought for sure Sunday I would wind up being hospitalized but I struggled through it.
Getting back to this topic though. My husband of 41 yrs has been nothing but supportive in my fight with UC. He's very concerned about my going through the surgery but happy with the colorectal surgeon that I chose to perform the surgery. I wanted someone with vast experience. There are never any guarantees but I feel I made the right choice. I just cannot live on prednisone forever and I have become prednisone dependent. The sad thing is, my UC only affects about four inches of my rectum. The rest of my colon is terrific, no inflammation, no dysplasia, no polyps. Unfortunately, they with UC they have to remove the entire colon anyway for fear of the UC manifesting its ugly self somewhere else in the colon if it loses its home in the rectum...such a bummer

tell him you are NOT giving up! I hate that people think of surgery as giving up! Its the ultimate win! I say this often, but its literally kicking your colon to the trash! Taking back control of YOUR body, instead of letting a colon that doesnt want you control your every move!

If 'giving up' means being healthy and in control rather than being sick and living a life of misery tied to the loo all the time, then so be it.

If I had my life over, I'd 'give up' again in a heartbeat rather than live the 5 years with UC that I did before surgery (I'm pretty sure my parents would agree too!).