Compromises of Life as an Ostomate

An agreement, a settlement of a dispute, that is reached by each side making concessions.

"What compromises did you make by becoming an ostomate?"

Life as I knew it changed the morning of my surgery and the look of my body differed.

Did you make compromises in your marriage or relationship?

My marriage did change, I no longer share the bed with my husband and nor are we sexually active.

Did you compromise your way of doing things such as quality of life?

First of all, my digestive system changed and I could no longer eat the things I used to.

I can no longer wear bikini panties, I now wear high-waisted panties.

I used to wear spanks, which is a form-fitted girdle. I can no longer wear something that's tight against my stoma.

I miss soaking in a tub with bubble bath, I now take showers.

My clothing changed to some extent, I can still wear some fitted things at times.

My choice of handbags has changed, now I carry totes. The tote allows me to carry the necessary things needed, such as three appliances, sanitizer, wipes, and baby oil.

My family never left, in the beginning some didn't quite understand but they were there.

Friends, if you want to call them that, are few and far, however I do have two real friends who are still with me.

What compromises have you made?

Respectively,

Angelicamarie

Well, you said friends were not the same after the operation. Well, it seems that they were not real friends to start with.

Agreed, Jimky 1, how right you are...

I am sure that you have true friends now. 

Hello Angelicamarie. Thank you for yet another interesting and thought-provoking post.
As you say: ‘compromise is an agreement, a settlement of a dispute that is reached by each side making concessions.’
With regard to having the stoma, I did not feel that there was any ‘dispute’ in this regard, as I had very little choice in the matter; As for the various adjustments I ( and others) needed to make afterwards, there were no disputes there either, which meant that there were no compromises needed to be made.
My choice of clothing changed to accommodate being more comfortable after the stoma.
I found that wearing normal ‘suits’ for work no longer ‘suited’ my needs so I swapped them for boiler-suits. Nobody questioned the change except for asking ‘why the sudden change?’ Once I explained the reasons, those people were quite happy with my explanation and the subject did not come up again. Mind you! I also joked that wearing a boiler suit made it look as if I was actually ‘working’, whereas wearing a normal dress-suit always seemed to imply that I was one of those people (like managers) who avoided ‘real’ work.
At home I did redesign a bathroom to cater for my new ‘needs’ as an ostomate, but this did not result in any disputes because the changes benefitted everyone. Fortunately, we have a couple of bathrooms, so any excessive time spent in one does not compromise others from using the other one.
I am also very fortunate in that I tend to be able to think and talk things through to reasonably logical conclusions. On the rare occasions where an embryonic dispute may be on the horizon, I am usually able to anticipate it and work out the consequences of each potential way forward and agree on mutually acceptable choices.
Another facet of my character is that I tend to have few vested interests in which way things in life progress. Those things upon which I have some strong opinions are often things that I have very little influence over and therefore most of my waking life is a huge, ongoing compromise, which has little or nothing to do with having a stoma.
I therefore console myself by writing rhyming verse about all the things that get up my nose. By doing so, I do not compromise my views, but the subject matter is immortalised for others to discuss long after I depart.
As for our marital relationship, it has always been unusual in that we differ in our thinking on almost everything. However, the one thing we do agree upon is that everybody has the right to think whatever they want and if someone else thinks differently to us, then this should be respected. This way neither party needs to compromise on their beliefs and we can live in dissonant harmony.
Best wishes
Bill

Hello Bill, I wrote the definition to start the post. The reality is we all had to have the surgery to live. I'm assuming those that made the choice not to are gone.

Thanks for sharing...

The "new normal".

It's the first thing I try to figure out after every surgery.

There are two kinds of compromises:

One is a negotiation between two parties; each can give.

The other is when you negotiate with the old you, the parts that can stay and that which cannot change. That compromise feels like settling and somewhere in the stages of grief precedes acceptance.

I will tell you that this year's surgeries have had the most life-changing consequences. My first surgery was in April and I'm still trying to get a grip on managing the new normal.

If what has happened to us scares people, the weak ones will avoid us (How many poop conversations did you have BEFORE your diagnosis? LOL)

You realize how many of your friends are what I call "activity friends". They were my friends because I gave them someone to do their favorite activity. Our conversations were about equipment, places, training, but never about spouses, dreams, and aspirations. They were fun during the activity but in truth, I don't miss them when they go.

I think the most difficult stage for my true friends, the ones who care about who I am, is that time after surgery when I try to learn who I am, my "new normal". It can be said that being sick is lonely and I say that because you're the only one doing it and everyone else is just watching. They have a choice to walk away..... you don't.

Give your love and energy to the ones who stay.

I had one of those little "bathroom" books that had adages and quick read jokes, etc. The one I always remember is:

"It's not so much about marrying the right one as being the right one"

You can replace marrying with befriending and it still works.

What has happened to us is not fair. Life is not fair.

But you are not a snowflake that will melt in the heat of adversity. You are steel and further tempered every time you outlast the heat of adversity.

After 20 surgeries, my friends and family know that for the first 5 minutes of a visit in the hospital, I'll give them a status report but after that, I want to know what's going on in my world that I'm not there to see.

Crohn's is what I do. It's like being tall and bumping your head a lot. This stuff just comes with the territory.

NOW THE REALLY IMPORTANT PART:

But other people (our watchers), it's not what they do, yet.

We have our surgery, we have a plan for recovery, we work the plan.

But what about our watchers?

Our pain is behind us and we have a plan, but what do they have?

They have a tape on an endless loop and all that's on it is having to watch us "suffer" without a darn thing they can do about it.

They play it over and over. Over and over.

So we have a tough job; we have to heal AND take care of our watchers.

They need to see WE are still there. A little changed, of course, but a point they can still use to navigate life. They relied on our hearts before; they need to know that heart is still there for them and we still love them.

I learned this the hard way. I was in Hopkins for nine weeks, had 3 surgeries, and didn't eat for 7 of those weeks. I had to look at my parents' begging eyes asking how I was, hoping, grasping, for the slightest good news.

My life changed from being the child to the caretaker. It was the best thing that ever happened to me.

I learned I need to give my watchers a new tape to play. A positive one, a happy one.

It is my pride, my conceit, that I own Crohn's and whatever it throws at me. Crohn's wasn't a bump in the road, it IS the road. (but I do love me some flat surface LOL)

Gotta get off this soapbox, the height is making me dizzy.

Dave

It's like reading a book on here at times. All we need is a short story

G'morning Tickpol, don't worry about a soapbox. That's what it's all about, sharing... Thanks.......

Respectively,

Angelicamarie

Hi Angelicamarie

My ostomy was an emergency, life-saving operation. I went septic and was not supposed to survive apparently. My outlook I think is different from many other ostomates maybe. I do have many complications such as hernias, stoma prolapse of 6 inches, leakage, pain, but I'm just happy to be alive. It's true that some people don't want to be around you after the ostomy...I guess it's for fear of germs? I don't know. I can't think of any other reason. But they weren't true friends anyway. They did seem concerned when I was dying in the ICU, however, but disappeared shortly afterwards. What can you do? No one could ever realize or understand the impact of having an ostomy unless they themselves had one. This is true for any other illnesses as well. Hang in there

My life completely changed when I got bladder cancer. I had my bladder and prostate removed and I am now wearing a bag, I have an incisional hernia, and I am impotent. I hope to play golf again, I doubt if I will play tennis again, and I know that I won't have sex again.......oh yes, my life has changed!

Didn't affect my sex life! Colostomy!

Some folks can't handle being reminded of their mortality. Their fear is greater than their desire to be your friend. But since our illnesses are often chronic, it's not like those folks can outlast it.

Another issue is that we've survived a monumental event. Some of us can't move on. Some can't be both chronically sick and be a friend to others. Think Howard reminding everyone he's been in space on the Big Bang Theory.

But people come and go in the lives of healthy people. Sometimes the "why" is something we could have done something about, sometimes not. If you're sure it's not something you did, then you pretty much have to offer them grace and move on.

I have had no reconnection due to scar tissue! I have driven myself twice to the ER for PEs! I lost my spouse of 40 years, have a 6" prolapsed stoma, and have had other surgeries! I am still alive for a reason! I am on several dating sites and have no problems! Don't use the bag as an excuse!

Hi Angelicamarie,

I know this is an older post but always relevant. I'm glad people are sharing, it's not always easy.

There were changes for me as well. Sex and intimacy stopped after my surgery too. It is frustrating for such dramatic change to happen. First the trauma to the body and healing and for me parts no longer work. Whether from radiation or disrupted nerves?

I think there's many of us out there in some likened situations. I feel remorse for each one. Somehow we've been cheated. I have read of many spouses who have left the relationship because of being superficial, to be blunt. Maybe we are "lucky" or are we? Somehow we've taken a big hit but I really wish we had a support group for this part of our lives. It would be nice to talk things over with people who understand but the way I think, unless you've experienced it you cannot understand or really relate. Thanks, mtnman.

I never put that comment on here!!

  Hi Jimky,  

I have heard of oddities similar to that happening. I've seen other members' photos on messages I've already answered in my messages. I know it was some kind of glitch. And after a while, the right pictures returned.??

Let's see what happens, maybe it will be corrected.     ...mtnman.  

Hi Mtnman, we will just wait and see, but it's not very good. I just happened to see that comment by chance.