Looking for assistance

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New Member

Date Joined Dec 2008
Total Posts : 2
   Posted 12/8/2008 1:53 PM (GMT -7)   
Good Afternoon ... I hope that this posting finds everyone in good spirits ...

While I am unfamiliar with openly posting about certain issues, I find myself in a position where there seems to be nowhere that I can find out how to deal with my particular situation ...

Although I am not the patient, I am married to a wonderful woman who was diagnosed 3 years ago with endometriosis. We had only been married a short time, and are both fairly young. She had the surgery, which successfully removed the growth (but involved having a colostomy), and was told that she would have to wait a few months before she could have the reversal surgery. To make a long story shorter, it has been almost 3 years, and 4 additional surgeries later. Nothing has worked, and she is faced with the possibility of having to wear her ostomy bag for good. Here is where a very serious set of problems have began.

To begin with, my wife has been, is, and will always be a wonderful woman in my eyes. But there are some very disturbing signs that have emerged within the past year or so. While always having been an outgoing & friendly person, she is now very quiet, and talks frequently of feeling "dirty", "unfeminine", and "severely depressed". As well, the very slightest of references to some things (children and related) usually triggers severe emotional reactions. The same reaction occurred when a good friend of hers recently gave birth to her first child. We have no children together, although I do have 2 from a previous relationship.

Unknown to her, I have recently had several conversations with friends who are all quite worried about her. None of us seem to be able to find any way to help make her feel any better. The situation has gotten so serious in my mind that I am considering having a full on conversation with her parents & letting them both know the complete story of what is going on (even though I had promised my wife that I would not do so, and would let her tell her parents everything about her condition). Her parents are both wonderful people, and I believe that their intervention (if you will) might be a very positive thing. They are obviously aware of what her condition is, but not to a full extent.

Bottom line at this very moment is that I really don't know what to do. I feel that I am failing her as a husband, as the best that I can do is tell her that I love her, and that her condition isn't the end of the world. Others have told me that knowing one is loved no matter what is the most important thing. But it is not working. Her friends are seeing the same results when they attempt to talk to her also.

If anyone who frequents these forums has had any such experiences, I would be forever in your debt if you could provide me with any sort of direction.

Thank you in advance for your replies, and god bless.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 12/8/2008 3:53 PM (GMT -7)   

Joe90210--while I cannot say that I have a similar experience, I can let you know that finding out you have an ostomy can be very difficult.  That being said, I have Crohn's disease so my life was horrible pre ostomy and I have found mine a blessing.  It is a much different situation for your wife...has she been able to attend any ostomy support groups?  If you visit www.UOAA.org (the national ostomy association) you should be able to find groups in your area.  It is wonderful to meet people "just like you" who are living life with the same challenges...I would also suggest she might benefit from talking to a professional who can help her sort out her feelings.

You have probably already run these through your head and I know there are some on the board that have been in more of a similar situation and will be along with their help. 

Forum Moderator

Date Joined Feb 2003
Total Posts : 1250
   Posted 12/9/2008 4:10 AM (GMT -7)   
I would suggest not betraying your wife's trust by telling her parents until you have exhausted all options. It sounds so much like she is suffering from depression. Can you suggest to her to talk to her doctor and get some anti-depressants. Many ostomates have gone through what she is going through (it is completely normal after surgery such as this) and found the anti-depressants do really work.

If she refuses, then I'd bring the parents into the picture and maybe they can persuade her.

Good luck.
I have had an ileostomy for 32 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Forum Moderator

Date Joined Feb 2006
Total Posts : 5698
   Posted 12/9/2008 7:04 AM (GMT -7)   
I also agree to keep the parents out of it. It could make everything worse by betraying her trust. However, I would make a phone call or send an email or fax to her primary doctor (primary meaning the one she sees the most regularly) and inform him or her of her current state of mind, etc. She is depressed and she needs help. Sometimes a doctor has a way of reaching the depressed person more than the loved one.

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

Regular Member

Date Joined Aug 2007
Total Posts : 212
   Posted 12/9/2008 9:38 PM (GMT -7)   
Joe, you should also go to the support group with your wife as Ohio76 suggested. My husband would do that for me. I was to have my temporary ileostomy for three months. That was July 2007. I guess these things never turn out the way they're supposed to, but we have to remember, things can always be worse.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 12/9/2008 10:17 PM (GMT -7)   
do you think you could get your wife to come over here so that she could see that we are all happy and doing well? maybe that would help her see that things aren't as bad as she thinks they are, and there is light at the end of the tunnel

New Member

Date Joined Dec 2008
Total Posts : 2
   Posted 12/16/2008 9:00 AM (GMT -7)   
Thank you all for your replies :-)

I have found a local support organization (through the National Ostomy Association mentioned by OHIO76), who has begun helping me with this. They seem to be quite compassionate, and have already provided several contacts who have had experiences similar to what my wife is going through. Hopefully, this will provide the support that she really needs.

Thanks to everyone again & God Bless

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 12/16/2008 3:23 PM (GMT -7)   
i too suggest she come on-board this site. we're all pretty happy with our outcomes here, although we of course all went through an adjustment period as well. having a bag is no big deal :) my doc had me talk with a shrink for a few months post-op, it helped. i wouldn't go behind her back either to talk with the parents, eek

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 12/17/2008 10:13 AM (GMT -7)   
I strongly agree with getting her talking to people in her position. Sometimes I get depressed and feel sorry for myself and a little venting to people in the same situation helps a lot! Even if you think telling her you love her no matter what doesn't help, IT DOES! Sometimes I feel gross and unattractive b/c of my dz (and the thought of having a bag). My husband tells me it doesn't matter about that stuff, he'll always love me, yada yada yada. I might roll my eyes, but it really does mean a lot that he says that stuff. Women are emotional and we need to talk about how we feel. It helps lots. If you can't get her to a support group in person, get her on this site and hopefully she'll feel better!
Good Luck
27 yrs. old. married-diagnosed with severe pancolitis u/c 2002 and have been in a "flare" since 2004-will have colectomy probably fall '08 (most likely j-pouch) Pred, Asacol, B shots, prenatal vitamin, and carafate

Regular Member

Date Joined Oct 2007
Total Posts : 55
   Posted 12/19/2008 9:52 PM (GMT -7)   
Hi Joe,

I'm sorry to hear about your wife, however I can certainly relate. I had surgery for endometriosis and ended up (surprise!) with an ileostomy. 5 procedures later I'd had the ileostomy reversed and (surprise again!) asked to have a colostomy placed.

Right now I am clinically depressed. I've returned to the ostomy boards to feel less lonely and I would strongly encourage you to perhaps print out some of these messages (especially stories from Shaz's website - they are the best) and post them on the fridge or something.

I'm on antidepressants and seeing a therapist at least weekly. What your wife is experiencing is fairly commonplace, but she needs super support to pull through. She may resent her physicians, she's probably hating that stoma and her life. If she's not already, you might want to inquire about irrigating. I irrigate and it has helped my transition a little.

It's an uphill battle, especially after suffering from the confusion of endometriosis. But your wife is not alone. Thank you for posting.

Wishing you guys the best,

diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...

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