Life After Multiple Surgeries: Seeking Normalcy and Support

I had an ileostomy a year ago, but the first one failed and I had to have another surgery for that two weeks later.  Three months after that my ileostomy failed again, so I had another surgery.  A few months later I had a fourth surgery.  All has been well for six months.  I am now feeling like a normal person again, although I do have my moments of being self-conscious. My problem isn't really myself anymore, but now my husband informs me that it bothers him that I do not take exercising seriously and he is also turned off by the thought of having intercourse with me, because he is afraid it will hurt me.  I must say in the last year we have only tried sex twice.  I am just happy that I feel so much better, am starting to get back to having a social life, and doing my housework and yardwork like I did in the past.  Of course this makes me feel bad that he feels this way.  I have never been a person who exercises daily, but I do go for occasional bike rides or go swimming or for walks.  I don't know if he is just bothered now because I am not as dependent as I was for quite some time while I was sick or if there is something else.  I don't want this to bring me down into being depressed, as I have been feeling so good.  Any thoughts on this?

Hello JayneK.

 Thanks for your post sharing your curent problems. It does sound as if you have had to cope with a lot with regard to your ostomy but if all is well now and you are getting back into a reasonable routine, hopefully the other things you mention will gradually resolve as well. You may have noticed that I did not say that these things will resolve 'themselves'. This is because I believe that most things we worry about, need attention and working on  before they get resolved satisfactorily. UNfortunately, one of the things that many people get hooked up on (and sometimes bogged down with) is what 'other' people think. This is particularly so when the people we care about are the one's expressing that 'they' have a problem adn they share their concerns with you.

There is a saying that covers this type of interaction: " A problem shared - is aproblem doubled!" whereas, if the problems are recognised for what they are and dealt with in a mature way, then the saying  becomes " A problem shared - is a problem halved!"

I tend to encourage people to ask relevant questions as to "who has what problem"  then, when the problem location has been clarified, it becomes clearer as to who it is that needs the help to deal with it. 

The question of attitudes towards sex is always a tricky one as it doesn't take very much to put people off the activity if it doesn't seem to have the potential be 'perfect' for them  physically, psychologically and emotionally. Many such problems can be overcome by open and honest discussion between partners. However, becasue of the complexity and delicacy of the the three facets mentioned, it is sometimes useful to seek professional assistance with negotiating what can turn out to be a conversational nightmare. This is also relavant with the other things you mention as, the way you describe it, you both have different concepts of what is appropriate in terms of the amount of exercise you do. You mention that you do not know whether it might have something to do with the changing nature of your previous dependency. Open discussion could help you to find out that whicvh you presently don't know and it may well help you to deal with whatever manifests itself through the conversations.

I do hope you can resolve these difficulties and move postively on in your life as you have enough to deal with, without having it complicated by problems with relationships.

Best wishes

Bill 

Hi jaynek, you have been through quite a bit, but your still here. After my surgery I could no longer do a whole lot of things I used to do! Like I used to do 100 crunches a day , now I do Zumba in the privacy of my home. At one time cut grass washed cars and did the flower garden, can no longer do all. So I work in the flower garden. I would clean my house in one day, now I do what I can in one day, and the rest the next day. Our husbands love us but really don't understand how the change affected us, which it did in many ways!! As far as sex you say it's only been twice, try 2 years . You have to keep it moving you were given a second chance and that's most important!! Do you!!! Have a wonderful day!!!

Hi JayneK,

I'm sorry you've had such an exasperating experience getting to your final surgery. I truly "get" what you're saying about wanting the support from your significant other. I have a husband who believes recovery is just a matter of getting back to my daily workout! What he doesn't understand is the fact that getting up, ready, and out the door in an effort to have a so-called normal day is exhausting!! It can often take a day or two to bounce back.

I do not believe that depression is just a matter of having some "blue days"... and certainly isn't just your problem. I give you kudos for bringing up your concern and being able to say that you feel good and want to continue to feel so. I understand how having this surgery can make our partners feel like they could break us or, to be perfectly honest, they're turned off by the bag. While I understand their fears and/or concerns, I am pretty terrified too... I want to feel sexy and desirable. Most of my life I associated being loved with sex and frankly, sex is now the least of my concerns. I just want to be held and told that I'm still beautiful in his eyes and WE can get through this together. I thought that was the foundation of being married!! For me, none of that has been, is, or will ever be reality. It's cute that I've entertained that little fantasy as long as I have. "Ostomy Secrets" offers a lot of pretty little ditties that can camouflage the appliance and perhaps help you both feel more secure.

Depression is a bona fide mental health condition; it needs to be de-stigmatized and should be talked about. I have major depressive disorder, anxiety (with panic attacks), PTSD, and suicide ideation... but I AM THE FACE OF NORMAL!!! I volunteer and advocate for NAMI (National Alliance on Mental Illness). In our attempt to make others happy, we often sweep our feelings under the carpet and think they'll go away. If your significant other would be willing to reach out to a local Ostomy Support Group (is there an active group in your area?) WITH you, you're well on your way to a home run. You might also check out NAMI... there are local affiliates in every state.

I hope you are able to stand in your own truth, my friend! I'd like to think that a 'relationship' means that both parties are willing to give and take with compassion and empathy. Addressing the real issues, talking, and bringing it out in the open will not only help you in your recovery, it will go a long way in shining YOUR beautiful light... and that's what this world needs more of! I try to keep a simple little truth in mind... "never look down on someone unless you're offering a hand up!" Ostomies are not the easiest surgeries to have, let alone get over quickly. You deserve to be treated with tenderness and compassion... I may be speaking strictly for myself... but THAT's what turns me on, if you get my drift ;).

Blessings and kindness,

Vicki