Ostomy - Next chapter in my fight with IBD

[Kev]

Barring a miracle, looks like I'm headed to surgery for an ostomy in the next month or so. I had hoped to avoid this, have done everything possible not to take this route... but, life doesn't always go the way we hope. So, my question basically is... Any advice, thoughts or stories those of you who've already taken this step willing to share? This is not my first surgery, but I'm hoping it will be the last.

 

[DJW]

Hey KEV,

I've had mine for years. It gave me my life back.

Give it time. Its a big adjustment. Thing start to settle from the 3 month mark. You start getting in the routine of having it. By 6 month the stoma stops changing on a weekly basis. Don't settle for the suppliers you get from the hospital. Get lots of free samples from suppliers.

 

[cleuger]

Hi Kev I have surgery in 11 days for a proctocolectomy I'll be happy to post my experience. I've found there's plenty of knowledgable people on the board. Id be lost without there advice and experience. One thing I've done to pass time before surgery at the advice of another member I started requesting samples from ostomey bag companies.

Cindy

 

[2thFairy]

Colostomy or ileostomy, Kev? Permanent or temporary? Check out the ostomy forum...that's where all the cool kids hang out.

I had my colectomy with ileostomy 2-1/2 years ago and it has been wonderful ever since!!

 

[Kev]

Thanks for the replies. I've had a number of surgeries, so my anxiety level about having the operation itself isn't all that high. My big concern is making the adjustment. At this point it seems to me like the end of life as I know it... but considering the nightmare the last 4 months have been... anything would be better than this. I'm a prisoner in my own home.. have no social life... just a miserable existence. However, when I try to look in my crystal ball, I "can't" foresee a life with an ostomy. Will I be able to return to work? My job is physically demanding. Will I be able to socialize? What are the risks of public accidents... leaks... that sort of thing. And the possibility of dating, a relationship, etc., seem totally out of the question. See how extensive my ignorance is? So, any/all info is most welcome.

 

[2thFairy]

Work, yes. Socialize, most definitely. Leaks, everybody has at least one, usually at night during sleep. Dating, SEX, YES!!!!!

I was trapped at home for years before stoma surgery. I worked from home. Had surgery, went back to school, and now I am a surgical tech, assisting doctors during surgery, stoma and all. No one at the hospital even knows I have one, locker room and everything!

There will be adjustments to be made, but it will free up your life, not slow it down!

 

[Susan2]

If the results of this surgery take a course similar to that of a large number of us, it will be the end of life as you know it. There will be an adjustment but it should lead to a much better life. You will need to find the combination of equipment that works for you - make a friend of your stoma nurse and try a variety of brands and types. As Cindy says, the ostomy supply companies are more than happy to send you samples. and ask on the Stoma Forum for recommendations.

Once you are fully healed and have got your strength back, there should be no reason why you can't go back to work. You might need to take it more slowly to start with if your job is very physically demanding. Could you go back part time or on lighter duties at the beginning? If you are likely to knock or otherwise damage your stoma, you can wear a stoma guard. We have members with stomas who play contact sports and wear stoma guards for protection - they will give you advice on the various types.

You will certainly be able to socialise. Once you have got the right equipment and become adept at putting it on, and have learnt how often you need to empty and change it, nobody else need know that you have a stoma. Yes, some of us have the odd leak from time to time - probably more with an ileostomy than a colostomy - but nothing like before surgery.

And there are plenty of members with stomas who date and have relationships. It might take a little more time before you are confident enough to talk about it with someone - everyone feels different about this - but there are lots of people out there who care more about who you are than your physical differences. Again, go onto the Stoma Forum and ask the question - we're very happy to talk about our own experiences.

I've been on safari in Africa, snorkelling in the Galapagos, camping in the desert in Morocco, fossil hunting in South Australia and nude (except for my stoma bag) bathing in communal baths in Japan - things that I could never have done before my proctocolectomy.

I hope that the answers from everyone help and that you can go into the surgery with confidence that your life will improve! :ghug:

 

[Flarkie]

Hi Kev,

I am sure you will Adapt to the colostomy. Datingsite, sex etc it is all possible For you! Keep courage!

Greets,
Marcus

Ps I have a temp. colostomy so. I know all about it...