Ok.........has anyone else had this issue? Hubby is currently on irinotecan/5fu/levurcin.......(he is stage iv mets to liver and lungs ..unable to remove tumor due to tumor extension to pelvic bone/bladder/postrate....) and all of a sudden this strange bulge appears?
He has been back to his stoma nurse at the our hopsital cancer clinic and she has instructed my darling hubby as long as his stoma is pink and healthy he is ok........colorectal surgeon (one of the best in the country) has spoken to oncologist and they have agreed that at this time mdh (my darling hubby) should concentrate on his chemo therapy.
The problem is.........mdh is feeling very very self concious about his stoma and he is starting to wonder does any one of his medical team have any understanding as to how it is effecting his self esteem.
Has anyone else experienced this problem......and if so........I would appreciate some tips on how to help mdh to cope with the situation.
As always I return to this board for advice and support ....thank you all for providing both
If the bulge is near the stoma it could be a hernia. If so, sometimes wearing an abdominal support belt will help. There are ones specially made for people with ostomies or a regular can be altered by cutting out an opening for the stoma and appliance to fit through. Unfortunately the only way to fix a hernia is surgery.
I too suffer badly from low esteem where my stoma is concerned. ITS HORRIBLE looking with a bag attached to your body!! I hate it.. sorry to all who dont agree with this.. but I CANT wait until I get the reversal which hopefully will be early November. Ive had the ileostomy for 8 months now and its really getting me down.I think (lol) my body was quite attractive before the surgery and now it looks horrible. I know I know.. the alternatives.. but still looks horrible and I really can associate how your hubby feels.
Definitely sounds like an incisional hernia... he should be in touch with his surgeon.
As far as the Stoma goes... I had an ileo, had it reversed, and am going back in for a permanent colosomy. YES, it TAKES TIME to get adjusted to it. It changes your life, how could it not? If your husband does not feel he is getting the support from his team, then he either needs another team, or to join an ostomy support group. MANY people feel this way... some can't even change their bags themselves! My take is, yes it's a change. Yes it's different, but WHAT IS BEAUTY? Beauty is feeling good about himself... and if he reminds himself what he had been able to keep (easier said than done, believe me, I know), but he WILL increase his self esteem. Tell him he looks sexy too. Divert attention from the bag... talk about his broad shoulders, or chest, or eyes...As a guy, I can tell you, when my wife tells me things on me that are still sexy or attractive to her, it builds my ego and makes a world of difference.
She has developed a "why I love my husband chart" which she hung on the bathroom mirror... helps to remind me all the things she loves about me. Maybe you might want to surprise him and do something like that. Good Luck!
Mazrose, I feel for you and understand why you can't wait till November.....I hope all goes really well with your reversal and I bet you can't wait to be able to wear tops that are not loose fitting (roll on November yahhh)
Hubby has had his bag since April and he was fine with it as he has always been comfortable with his body image, it's only since the prolapse issue that he is starting to feel a little self conscious as previously no one could tell with a normal t shirt whether he had a bag or not, but as the prolapse is quite large it is much more difficult to conceal.
His colorectal surgeon and oncologist both agree that it is more important for him to continue with his chemo regime (as his first line treatment was not as successful as they had hoped) and in the meantime his stoma nurse has arranged for an abdominal support for him (thanks for the tip westcoastgirl)and when he has completed this round of chemo the surgeon will revisit the possibility of surgery for his hernia.
Cancer Dad, thanks for the suggestion and your wife sounds very supportive.
Hubby has always been sexy to me and always will be with or without his bag (and always reminds me of how spunky he is lol), so that side of his self consciousness is not an issue, it's more that he says he looks like he has borrowed his clothes from Demis Rousos, (thank god he still has his sense of humor).
Thanks to you all as always for your suggestions and advise, it's invaluable to us both.
Maria, the doctors are saying that they want him to concentrate on the treatment of the life threatening problem first. After the chemo is all done and he is again fit for surgery he can take measures to correct what is, at the moment not causing more than cosmetic problems.
Obviously those docs are seeing this from their purely practical side of things. However, if it will take surgery to correct it he would have to suspend the chemo for it and for a recuperation time afterward. Unless it is causing physical problems I would have to say that I think he should wait, as distressing as that may be.