Looking for some Help

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want 2 understand
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 1/7/2008 10:02 PM (GMT -6)   
Hi Everyone,
                  my wife recently had a total colectomy and has been dealing with it by herself with all of your help. I want to thank you for all the support you have given her. I'm happy she has a place to turn to where everybody understands her troubles.  
        The reason I'm posting is because I want to understand better what she's going through. I know I'm probably not supposed to be here but I want to be able to understand what she goes through so she does not have to be alone at home. I guess that came out the way I meant. As you can see I'm not sure how to word this properly.  I hope you all do not mind that I'm posting here. I don't know if other spouses have posted or not. I'm just trying to learn more to be more supportive if that's possible. But I have read some of the postings and have gotten an idea of what she's going through but was hoping for some additional guidance from all of you. Do you tell your spouses how you feel? Do you help them understand better because they have not gone through the surgery? Or do you not let them in to try and be more supportive? I understand to a point but I know I cannot understand fully unless I have gone through the surgery. I want to be supportive and help as much as possible but really don't know how to go about doing this. She seems to constantly be going to the bathroom. She goes between 10 - 15x pr day. I'm sure that's a hard thing to do for anyone. I can't imagine the pain or discomfort she has to endure. I have helped her apply medication when asked and done whatever she needs when I'm home.
 She is working and is concerned about having this condition with work. I'm sure she's worried about constantly going to the bathroom while at work. She has a bag just for work. She's found that alot on here.
 
I guess what I need to ask all of you is how can I help her more here at home? I do alot of the household things so she does not have to. I let her rest when she needs it and take care of our boys when I'm home. I work from home when I can to make it easier when she's home. When I do have to go into the office I feel badly because that usually ends up being a bad day for her with everything.
 
Thank you in advance for any help or guidance. It would be greatly appreciated. 
 
Just trying to help her
 
 
Want 2 Understand

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/7/2008 11:07 PM (GMT -6)   
well i think it is great that you came here to find out things like this. I am sure she would appreciate that. Different people deal with this in diffrent ways though. she may not want any help in getting used to it, or she may just be waiting for you to offer to listen. Personally, i dont' really like to talk about it. I talked to my Mom some, my husband is a nurse, so even though he knows the technical stuff about thigns like this, he isn't good for moral support, lol. But really, i got tired of talking about it to my Mom even, because it just made me think of it more. this board has been great, because these guys do know exactly what this is like. and try as someone might, they cannot explain the things that change when you do this. I think it is great that you are doing the housework and stuff for her, i am sure she is tired, it's hard recovering from surgery!
Did she have a j-pouch? i'm not really sure why she is going to the bathroom that much or how she could just wear a bag to work. Anyway, i think it sounds like you are doing plenty to help her at home, and it's good that you want to help her emotionally, i think that you need to ask her if she wants to talk about it, and if she says, no, then don't press it, change the subject or something.

want 2 understand
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 1/7/2008 11:20 PM (GMT -6)   

thanx for the quick reply. I have offered to listen numerous times. But she does not want to talk to me about it. I feel helpless when she gets like this. That's why I'm happy she has this forum to turn to since she won't come to me yet.

She did not get a bag. They just re-connected a small section to her rectum. Thankfully she does not have to get a bag. I can be patient as long as I need to. I just hope she will confide in me sometime soon.


want 2 understand
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 1/8/2008 9:32 AM (GMT -6)   
Thank you all for the replies so far. I see why she loves this forum so much. You're all very helpful and have much insight into this. I already do most of those things now. I want her to rest. She does what she feels she can. If she's not up to it she usually tells me and I will do it if I already did not plan to do it already.
 
Can anyone try to describe to me what she feels inside? That's really what I need to understand better to help her more I think. I know she has to watch certain foods and liquids. We have been doing that already. I just can't seem to put myself in her shoes with the exception of what I can see she goes through. If anyone can possibly describe to me the other half of what I'm missing that would be a great help. I know everybody has a different type of surgery and different healing process. Hers was laproscopic and has no bag with a total colectomy. I'm just trying to get some additional guidance if at all possible. She means the world to me and all I want to do is help if I can.
I would tell you her id, but I do not want her to know I'm doing this. I figured if she does not want to talk to me about this I would get help from all of you since you have helped her so much already. I can only read so much online about it. I need to hear from people who can talk about it so I can understand her pain and discomfort better. Then knowing this I will be able to care for her the way she needs. I hope.
 
Thank you again for your help and suggestions!
 
want 2 understand

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/8/2008 9:41 AM (GMT -6)   
If your wife had the surgery due to Ulcerative Colitis then I can tell you quite honestly that "inside" she feels a lot better. Frequency is an issue but other than possible skin irritation, and a few months of recovery, there should be no pain involved. Emptying the pouch is as quick and easy as urinating.

Speaking from my own opinion, I think you are trying to hard to figure out how she feels and I don't think any of us can speak for her. Recovery is different for everyone. I think others have given you great advice, help out more with the kids, make sure she has the freedom to get plenty of rest (I napped every day for one full year after surgery), and either get hired help to do housework or pitch in and do it yourself.

Like others, I didn't want to talk about my surgery either. I had been sick for 2 years and all I wanted was to feel well again and focus on recovery. Recovery and adaptation will take about a year so be patient.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


want 2 understand
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 1/8/2008 10:57 AM (GMT -6)   

Thank you for the insight. I did not expect too much on how she feels. I have gotten some great advice and have already been doing just that. So I guess I'm on the right track. I will continue to do that and more if she needs the additional help. I don't want to smother her either.

 

Thank you again for your posts I will post periodically to let you know how things are going.

 

 

want 2 understand

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