How to Navigate Life After an Ileostomy - Need Advice!

Hi everyone,

New here.. First post.. Deep breath..

Had an emergency ileostomy 3 months ago now, and so much has changed in my life. Seriously.. Where to begin. Used to be so into my sports, music, and work, but it's all gone away. Basically feel like a totally different person who wakes up twice every morning. Once from sleep... If I get any.. And then once again into this new world of... What has just happened to me? Waking up is horrible...

After 3 months it's still real hard. So many questions for a first blog. Just happy to be amongst you all now. Get my spark back.. Or get my ducks in a line again.. And start.. Or stop.. Feeling.. Whatever it is I am supposed to feel like...

People say... It's still early.. But I am pointing and moving in the wrong direction.. And this roller coaster is a bum ride now... My therapist paints nice pictures but....

Anybody...

I'm a celebrity... Get me out of here !

It is hard having your plumbing on the outside.. It changes your life but you will learn to live and thrive with it by asking us and your therapist for help. I received my colostomy over 30 years ago as a very young woman.. I felt like I was in the middle of a nightmare every time I pulled down my pants. I have a chronic disease that disrupts my life but I have had a good life.. worked, traveled, camped, played sports, had 2 children, was married over 21 years but now divorced and dating, and have good friends. We cannot change what has happened to us, we can only change the way we react to our Ostomy.. Have faith, things will get better one day at a time.

Hi there,

Truthfully, take it one week at a time. It's been two months shy of two years for me, and it started getting better after about seven months. But I, as many do, had some complications. It's a learning curve for all of us. Just bear with it; at least we are all alive. Something to be very thankful about.

...mtnman.

Welcome aboard, Morgan! :)

I'm an ileostomate, too. Had Ulcerative Colitis 9 years before my colon gave up the proverbial ghost. Just prayed I would live long enough to make it to my surgery date three months away. I was in pretty bad shape, physically, and stuck in fear. I had no sense of control, no bearings. Felt completely inept during my initial post-surgery WOCN appointments, being shown how to change my appliance, etc. The person who first walked into wound care after surgery was not who I had been 3 months before.

Then, the complication 32 days after surgery... Well, that's another story for another time, Morgan.

One thing that helped me take back control was educating myself, and having faith in the medical solutions presented to me. Feeling, once again, that I have choices. Now, "educating myself" means asking questions. I've always done that - wanting to know more in order to effectively deal with any situation. But...the fear... I was terrified, and a stranger, even to myself. That fear - so overwhelming - kept me frozen, kept me from thinking rationally. Kept me from moving forward.

For some of us, these dramatic changes are difficult to deal with, Morgan. You say you had emergency surgery... Whether the reason for your surgery was an acute or chronic disease, or some sort of accident/injury that took you to surgery...it can be a very hard series of adjustments to make. More so because of so little time prior to your surgery, if any, to try to wrap your head around the situation.

You say you've been active in sports, music and your work, but that "it's all gone away"? You may not be able to be as involved as you once were in these, but try starting somewhere small. Even if it's just talking to your friends who are fans of the same sports, watching competitions on the tele... How are you involved in music? Ease back into it, and if that means in the simplest terms...? Give some thought to how you can keep abreast of the latest news, events involving the music you love. Do you play an instrument? I'm sure other ostomates have similar concerns. Keep reaching out. Ask detailed questions so you can receive detailed answers and tips.

Work. It can be such a large part of our lives, our identities. I was fortunate that I had an understanding employer when I needed to be out because I was so ill, and for recovery. However, I was ill in 2017, which was "P.C." - Pre-COVID. Many people are losing their jobs now, through no fault of their own, due to the pandemic. Once again, your best resource is people. Pick their brains for ideas on how to pick up where you left off. Or, if picking up where you left off isn't possible, consider how you can adapt your knowledge, skills, and abilities (KSAs) into another job or career. If you can hold a video meeting with a career counselor, take advantage of it.

Dip a toe back into those pools on the shallow end. To continue with this line of thinking: you've been shoved into the deep end of the pool, blindsided, and you don't swim. But, you know other people who swim. You know that there are people who teach people to swim. Granted, this knowledge doesn't keep you from sucking some water into your lungs, but you, Morgan, reached out and found...us! :)

Again, the thing that got me grounded again, restored my sense of strength and self, was research, asking questions and digging for answers. Part of that was joining my local ostomy support group. See if there's one near you in Britain. With the pandemic, meetings are still being held, just via Zoom or other video chats. One of your best resources will be people, Morgan. The fact that you're reaching out to the MeetAnOstomate.org (MAO) membership shows that you already know this. And, another wonderful ostomate resource is:

www.veganostomy.ca

Eric Polsinelli is a long-time ostomate who created and runs this website. And, no, you don't have to be a vegan to partake and contribute on Eric's site...just like here. :)

Morgan, you will find so many gracious souls on both websites willing to help answer questions, offer guidance, tips and - best of all! - hope.

You're only 3 months into your "new improved" plumbing changes. And no one handed us a Life - Your Ostomy User Manual. :) However, realize that you don't have to reinvent the proverbial wheel, Morgan - so many before us have been through this change, too, and are happy, thriving...somewhat-well-adjusted...individuals.)

The first thing you did in your post today is so very important, Morgan: Remember To Breathe. In... Out... Repeat.

I know this is a lengthy post, Morgan, and I have offered quite a bit to digest. Now, heaven knows that I don't know everything, or everything about your situation, but I do know this: YOU REACHED OUT. You know your situation can be better, or you wouldn't have asked how you might go about improving it. :) And, often, that can be a very good place to start.

Morgan, do your best to make it an amazing day. Remember: Breathe. Keep your perspective. Smile when you can. Laugh when you're able. Count your blessings daily. Stay in touch with people, and continue asking questions.

And, let us know how you're getting along when you can! :)

Lily17

Hello OstoMorgan!

Welcome aboard the HMS Shitstorm.....and what a ship it is! I was you 6 years ago. I went in for a supposedly routine small bowel resection and woke up in the ICU with a bunch of nurses huddled over me acting surprised I even woke up! And once I had feeling back in my hand, I noticed something funny stuck to my abs....but couldn't look down to see what the hell it was.....because I was still strapped down to the bed. The nurses were nice enough to tell me where I was and why......and then told me I was now the proud owner of a shiny new shitbag......oh, and that I was also short-gutted too! Wooo-Hoooo!

Yeah, life is now different.......better in some ways and worse in others. You go through the denial and then the anger phases.......and then when the pity party ends, you accept who you now are and you decide to get back in the game. You then start to discover what things you can no longer do.....or do as well.....and you form a picture of your new self. And it's not a pretty picture, or one that you'll like, but it's now you and what's done is done. The good news is when you get to that point, you'll focus on getting as much of your old life back, knowing full well that you won't get it all back......but what you do get back, you'll be incredibly grateful for and have a newfound appreciation of. And as time goes on, it does get better.....really. But not the sleep thing....that'll always suck.....so you need to get used to that. :0(

So you're right.........this roller coaster IS a bum ride. But we're all on this bum ride with you. We've been where you are now, and we know you'll get through it like we did......and it will get better. At some point, you won't think about it constantly and it won't define you in your mind. And you'll be ok.......and I'll stop there so I don't ruin it and give away the ending.....but it's a good one (wink, wink). Hang in there mate......we got your back.

Regards,

Bob

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hey Morgan:  It was good that you came into this site, 'cause it's full of experts on what you're experiencing now.  We've all been there, my friend.  I assure you that there not only is life after ostomy surgery, it is a quality life.  I went through it at the age of 21, with no preparation for the trauma, and had PTSD for quite a while afterwards, but then you reach the corner and you round it and you still have positive choices.  I'm 78 now; having an ostomy isn't the end of the world, after all.  I subsequently got married, had kids, finished school, had a full and productive life.  The ostomy?  It becomes second nature, I can tell you.  Let your native smarts, and your sense of humor, be your guide.  And keep coming to this site for company and answers to any questions that you may have.  Stay well.  HenryM

Hi Morgan, I've got an ileo. Also, I've had it now for 35 years. I've had 3 full open surgeries, the last one about 2 1/2 years ago to do a resection as Crohn's caused a lot of scarring and stricture of my stoma. My first surgery caused me to be out of work for 2 months, so I went back part-time doing shipping and receiving and helping my wife raise our daughter. About 1 1/2 years after the first surgery, I had emergency surgery for a twisted bowel, so I was down for another 2 months. That one really depressed me, but I didn't have time to be down between work and the winters around here. Life can be hard, but we have a saying: it takes SISU, which comes from the Finnish culture and roughly translates to determination. And that's what it takes - be determined to get back and do the things you like. I go fishing, hunt white-tailed deer, ride my trail machine, and get out of the house as much as possible. Good luck.

Hi Henry,
You are so right, my friend. It hasn't been 12 hours since I signed up here and so many kind replies, understanding, and heartfelt warmth.
I ain't never been into any of these kinds of Internet social chatting sites. Facebook makes me cringe.
This is obviously so different and purposeful. So glad I joined and know it's going to make a difference.
I guess I just met another captain onboard this fine vessel.
I salute you, Henry.
Thank you.

Thanks buddy..
Seriously dude, your words are warm, honest and truly heartfelt. Thanks so much. It is most welcoming to hear you and others.. onboard this ship.. you have raised my spirits, Captain.
Just let me sit in the corner of the poop deck from time to time.. but my god dude.. I will help out and be a good hand onboard here, if there are shipmates and travelers like you onboard..
Cheers, Bob.

Lily,
Your words are so kind and your understanding is.. well.. amazing.
Thank you so much for your reply.
Honestly Lily.. your words strike so powerfully and yet with such grace and sensitivity.
I always have been a sensitive soul but think it's got extra feely as of late.
My situation with the emergency op is strange.. had no idea I had a disease until after the operation. Just spent 3 weeks in some serious pain prior to operation, 1 week home, 2 weeks in hospital when they said you gotta have this done.. subtotal colectomy.. or you're gonna be a goner..
It's either Crohn's or ulcerative colitis.. they don't know yet, still.
It may be reversible depending on which.. not sure which.
And yes.. used to love my guitar and drums.. used to be in a fun little band.. ha.. soul surfers.. would you believe it.. nothing amazing really.. that drifted away over a year ago though now.. but only picked my drum sticks up once since the operation and that's cause I was pickled.. And the guitar.. well.. it doesn't feel right.. you gotta feel right with a guitar.. they are hard but I try.. had a couple of goes.. but no.. maybe the pickle juice might help there too.. they are in my opinion THE most sensitive and expressive instrument. It's as though they talk back to you with the truth as soon as you play it...
A lot like you Lily...
I am so so grateful for your lovely words..
Thank you...
And breathe.... x

Thanks for your kind words and yes, you are so right.. My stoma is strange, a pain, and all so new.. But at the same time.. My best friend, I suppose.

Cheers, Mtnman.

Hi,

Thanks for your reply. It is great to hear your story and your words give inspiration.

My heartfelt gratitude goes out to you and your family.

Hi Morgan, I see that lots of my fellow ostomates have jumped in and given you some good advice and support. You can rest assured that we will all be here for you and, no, this is not like other "social media" sites. We all have a common bond that holds us together and I believe that we all sincerely want the same thing, non-judgmental support and friendship. There is a lot of accumulated knowledge amongst this group and a willingness to help and share that knowledge. There are no "dumb" questions and nothing you say or ask will shock or disgust us ostomates. This site has helped me immensely, not just with knowledge and support, but with accepting myself in my new body. My first surgery was also an emergency, so I understand the shock of such sudden change. I now have three surgeries under my belt and another one to go before they are finished with me. I also have an ileostomy, but have the added bonus of still having my old stoma from my colostomy (although it is not active). This is only temporary and I will end up with just the ileostomy. I am still adjusting and learning as well as I am just three weeks out of my last surgery and dealing with an ileostomy definitely brings some new challenges that I did not have with the colostomy.

Bottom line, you came to the right place and we are glad to welcome you, Morgan! Things will get better and there is no reason why you cannot resume many if not all of your previous activities. I would think that Covid would be much more of a spanner in the works than your new plumbing! I have thought to myself, and this would apply to you as well, that as far as the physical recovery from your surgery is concerned, you could not have picked a better time. You can't really go anywhere or do anything anyway, so less pressure on you to get back into life as it was and more time to adjust emotionally to your new reality. I hope you have some close relationships whether that be family or friends who you are able to lean on, but either way, we are all here for you so don't be a stranger!

All the best,

Terry

Hi Morgan,

I was told about a year ago that all my options except surgery were exhausted. It was a mixture of feelings. Positive was that I was going to stop filling my body with meds that kept me from sleeping, giving me a face that was broken out worse than a teenager and general malaise. Negative feelings were how to deal with exterior plumbing and a bag bulging from my clothing. Some other concerns were leaving the house with a bag. How often would the appliance leak, fall off, smell etc. What could I eat and drink? I came to this site and got some great advice from those on it.

Since that time I have learned how to adjust my wardrobe to hide the bag. There are support belts that can help conceal and secure the bag. I use these and have returned to work and golf nearly every week. I had thought about and planned for emergency bag changes. I keep spare supply kits in all our cars, my work backpack and golf bag. I've had to do a quick change of bag and wafer at work and during a road trip. After calming down from the sudden panic, it was surprisingly easy to make the change outside of my own home. It's inevitable so try to get into the mindset of expecting it and what to do. You'll surprise yourself at how you will handle it. Trust yourself.

Another thing you may find is the sense of isolation. There are many concerns we have in life. We probably have a friend or spouse to discuss these with. Our condition is fairly unique. You can't just sit down with a friend and a beer and talk about how to make it longer between bag changes or how to handle a skin rash. This site and the previously mentioned Vegan Ostomate site can help with these questions. Check with your surgery team also. There may be a support group of former patients that help each other out. After my surgery, I joined such a group that my provider had. They put me in touch with a patient that was anticipating surgery. We met and he was able to see that I was a normal person who enjoyed a normal life. He has since had the surgery and we still meet and talk about different situations we have been in and how to handle them. It may seem that you have to handle this new way of life by yourself, but you don't.

Keep checking in with this site for advice, new ideas, support, and a few laughs. You're not alone.

Stay Safe and Sane,

SharkFan

Hi Terry,

Had my operation in between our two national lockdowns for Covid. Good timing really. You are right about the social guidelines, they kinda help. I am in disguise with my face mask. No big parties and pub crowds.

Yes.. My confidence is knocked down. Not the same guy at all. I can get out when I am motivated and feel energetic enough. I know I need to do this more really but the world is partially shut down anyway. Yes... my nearest and dearest offer kind words and encouragement, but it is not the same as real knowledge and experience about our issues. There is a shadow over the general consensus regarding our conditions. How can this be changed? Heart disease and even cancer have a feel and natural emotional response that is not the same as our midsection diseases and problems. My head is up and down, about to start on the happy pills to try and speed up my moody blues before I get back to work in the new year... yeh.. how I am so much looking forward to that. nbsp

Thanks Terry for the kind words, everyone is so kind here. I also want to help others too... it seems fair.. but at the moment.. just moaning my bag off I guess. Going to start a chat about loads of things in my mind.. motivation... energy... drive... be arsed ness.. nbsp

Anyways..

Most sincerely grateful.

Hello Morgan! Welcome aboard here! I don't think I have any great words of wisdom. Just another soul who can relate! I have just had my ileostomy about one year. It was emergency surgery for me, so I never planned to ever have this!
I have found a lot of Facebook support groups that deal with our emotional stuff quite a bit. People sharing on a daily basis, be it the emotional issues or the practical things we deal with in managing our ostomies. I find those groups very helpful. Glad that you have a therapist. I am a huge advocate of having that person to vent and process our emotions! Feel free to vent away here too! We can all relate!

You should definitely look into doing those activities that you love. Even if you have to start on a very small scale. I know that physical recovery for me was a long road, due to my age. But it gets better with time!

Do you find it easy to date? How do you tell someone that doesn't have what we have, dating-wise?