When will I feel like myself again after an ileostomy?

I had no idea what an ileostomy was, so when I was told the dangers of removing my ovarian tumor that had spread to my colon, I never thought it would happen to me. I was 34 at the time and feel like my life is forever changed. The doctors tell me there is a chance for reversal, and I have just learned to live with it, I guess, just in case. But I feel dirty all the time, and I am super aware of it. Since day one, I have used Hollister, and it seems to work. I also have a flat stoma and oval, so it makes my skin always have blisters, even if there is no actual leak. I was blessed enough to have found the aqua seal, which has been a lifesaver, but tell me, when can I feel like myself again?

Hi Sandy,

I'll tell you when you'll feel like yourself again... but only if you tell me about this "aqua seal" stuff! Deal? Ok.

For me it's been 7 years (in 3 days) since I got my ostomy. I wasn't expecting to get it, and was pretty sure I'd wake up without it. Actually, I never really considered I'd get one, because the previous operations I had to remove diseased portions of my bowel went well and the "ostomy" word never even came up. So imagine my surprise when I woke up in the ICU, choking on my bite guard and panicking because no one was paying any attention to my gagging. When all that subsided I reached down and felt something on my abs. Still having no clue what it was I sat up in the bed, which was painful at best, and almost cried when I saw what was taped to me.

My life didn't change... it got tossed off a cliff! I wanted to cry... but guys don't cry... so I just got mad instead. So here I sit 7 years later... and I still don't feel like my old self. But I have accepted the fact that this new me is now the real me. And I deal with it. Maybe others who've had their ostomy longer will tell you they feel like themselves again... but I can't... because I'm not there yet. I guess at some point your brain just comes to the conclusion that there's no going back and accepts it. At least I hope so. If yours is reversible just do what you have to for now to get to the time when it can be reversed. Then reverse it and put all this crap behind you and try to forget it. Think positive and take care of yourself so they can reconnect your plumbing... then get on with it! It's a great reason to leave this place!!

Best of luck to you!

Regards,

Bob

Hello Sandy.
Thank you for sharing your story and thoughts on this complex subject surrounding our ‘feelings’ regarding having a stoma.
Of course, none of us can really say when you or anyone else will feel like our old selves again, because once we have experienced what is a ‘traumatic’ event, it inevitably changes our lives one way or another, forever.
The physical side of things ‘can’ be relatively easy to adjust to –especially if there is a chance of reversal. (Hope springs eternal – they say) However, the hardest aspect is sometimes the social, emotional and cognitive elements that have also been traumatised. This can not only go on for years but, if it is not ‘treated’ and ‘managed’, can get worse for some individuals and become a condition known as Post Traumatic Stress Syndrome (PTSD).
There are many ways to address this issue and I am a great believer that many/most of us can get through it with DIY methods. However, if this doesn’t work effectively, then professional help might be the way forward, at least in the short-term to learn some of the strategies and techniques for dealing with this sort of thing.
The fact is, our lives ‘have’ changed and, as many have indicated before, it’s how we live our new lives and adjust to our ‘new-normal’ that will define our future.
Personally, I try to avoid the question ‘WHY? – as it tends to be somewhat dysfunctional in several different ways and does not help me in moving forward. It is much more likely to encourage me to be introspective and continue looking backwards for answers. Whereas what I need is to look forward and decide what sort of life I want in the future (with or without a stoma). Having done that, I decided that a little thing like a stoma was not going to get in the way of me making the most of what I have got, and live my life to the best of my ability, in the ways that I would wish.
I am much inspired by the many disabled people who have turned their disabilities into a force of motivation to move on and achieve new heights, rather than let it drag them down and define their future lives.

Best wishes
Bill

My relation had an ileostomy and after 6 months for healing around the operation site, it was successfully reversed. So, you must be patient and cope and see how things pan out. The fact that your doctor says there is a possibility of reversal is hopeful. You are still you and can still live your life, be positive and carry on.

Hello Sandy.

It's me again! I knew I had written a rhyme around the subject of looking forward - rather than back, but I couldn't find it. That is, until Henry prompted me to look for one of my many rhymes on bureaucrats and there it was!

So, here it is  :

Best wishes

Bill

LOOKING BACK HOLDS US BACK.

What are the things that hold us back?
Is it something that we lack?
Is it something in our mind?
Or is it something we can’t find?

There is one thing knocks me off track
and that’s when I start looking back.
Retrospective contemplations
can disrupt my aspirations.

My focus drifts and doesn’t last
whilst I am looking to the past.
I will lose my concentration
and my sense of destination.

So if I want to get ahead
I’ve got to look in front instead.
If I do that, I’d surely find
I could leave my past behind.

Once the past is in its place
I can give myself some space.
Some room to pause and think things out
then move forward without doubt.

Whereas the act of looking back
will start a negative attack.
When I look forward I control
my direction and my goal.

Looking forward gets me going
then my confidence starts growing.
Knowing where I want to go
also, often helps it grow.

With confidence and self-control
it makes me feel that I am whole.
In turn this helps me stay on track
and nothing then can hold me back.

                              B. Withers 2012

Didn't know your ostomy woes in your beginning. Wow.
You offered great advice to Sandy. It's honest, Bob. Always the best way to go.
Really appreciate your thoughtfulness and the time you put in to help the ones that really need a bunch of caring and comradeship.
As for me, not having an external ileostomy for 40+ years, can't really help much with practical info about today's products.
I try to touch the new ostomates who are deeply depressed and/or feel great loss and don't quite know how he/she got "there!" (You do this also.) Seems that you woke up, and later discovered your ostomy without having been told the possibility of an ileostomy! What jerks! You discovered it all alone. "How did I get here?"
It's after 5:30 am Pacific.
Got home from ER because of dehydration common for us. I drink Pedialyte and Gatorade and lots of other clear liquids including green tea with juice of 1/2 a lemon. I'm taking VSL#3 antibiotics. To avoid having surgery, a UCLA surgeon suggested taking 4 one capsules taken every 4 hours. It's pretty expensive....About $130 for every 4 weeks. It can heal IBS, treat UC so an ostomy can be avoided. There are other "Billions of probiotics" products that are cheaper, but they are inferior to VSL#3. From what I understand, it doesn't affect Crohn's.
Take great care of yourself, Bob. Sharon

Hi Sandy, if you have blisters on your skin, it might be that you're allergic to that type of wafer's glue. I had that problem with the type of wafer that has mostly tape that holds it on. I'm also allergic to most surgical tapes. You can get samples from all the suppliers to find what works for you, and they usually have a nurse available to help you figure out what works for you. Good luck.

Sounds like you've had your surgery recently, so not surprised you're not feeling yourself. It's a normal response from our body and mind. They've both been to hell and back with surgery. Hopefully, in the near future, you will be able to have your reversal. But for now, just take it one day at a time. Try not to be hard on yourself. Make a bucket list of things you want to do and places you want to go and see when you're feeling up to it to give yourself something to look forward to.

You're just the same person you were before surgery.

I've been around ileostomies all my life. Dad had one long before I was born, and I've had mine for over 30 years since I was 19. So, I know I see them differently from a lot of people. It's just as normal as having a colon to me. The only difference is I have a bowel the size of my hand outside. It's never been a problem or stopped me from living my life, just like anyone without an ostomy does.

Aqua Seal, by Costa Medical. A life-changer for me. It is a flat circular very thin almost film-like texture, with adhesive on one side, and divided paper covers on both sides to assist in getting it in place. First, the faceplate goes on, then the Aqua Seal over the faceplate, beneath the flange. You cut a circle the size of the inner part of the flange where the faceplate flares out to become the flange, and work the Aqua Seal into position below the flange, adhesive side toward your skin. Peel off the paper from the adhesive side first, then slowly remove the paper from the top side, pressing down the adhesive against your faceplate and skin (the Aqua Seal extends beyond the faceplate). The very secure Aqua Seal is waterproof and keeps the edges of the faceplate from peeling up from friction or moisture, allowing you to wear your faceplate until 1) 7-8 days or 2) you experience a breakthrough of waste underneath the faceplate - which the Aqua Seal conveniently keeps away from your clothes until you have a chance to change your appliance.

The extra security has been a lifesaver! I go to work, I go on long walks, I have even gone hiking all day at Cumberland Falls! No muss, no fuss, no anxiety!

For Sandy, give yourself some time! Major abdominal surgery is not something you spring back from in a couple of days with a giggle! I have had 4 in my life, from 2 C-sections to a colon slice and dice for cancer to the final ostomy surgery after a perforated colon. EVERY one has involved a considerable time to readjust the body to living post-surgery. (And with new babies, to boot!) It's one of those things that happen gradually, and you don't realize how far your outlook has come until you look back - you just can't see it at the time it's happening.

A lot is mental. An upbeat attitude, and help and support from those around you can make all the difference between accepting this and going forward and not being able to accept this change to your life. And I think the support system around you can make all the difference in the world.

I wish you the best of luck as you go forward. Remember: if a reconnection is possible, all well and good, and that would be terrific. But if it is not, then it's not the end of the world! You have to make adjustments to your changed circumstances and keep going. You can live the next 30 years of your life reasonably happy and fulfilled, if not with a perfect body (but who among us has a perfect body anyway?), or you can live the next 30 years of your life miserable because you don't have a perfect body. The constant is: you will be living the next 30 years of your life either way. It isn't easy (and I certainly don't want to make light of ANYBODY'S struggles), but YOU have the choice on how you respond to the challenges life throws at you. Whether that challenge is a new baby or a new ostomy.