Does It Get Easier After Getting an Ileostomy?

Hello everyone, I just got my ileostomy on Friday and I’m dealing with major depression. I know it’s not the end of the world but I just have so many degrading thoughts alone in the hospital room. I’m having so much output and it smells bad, eating is so hard and I’m just wondering if anyone else felt this way at first.

Yes, we all did. It's the "been there, done that" reply, hon.

No worries. We all felt it, knew it, smelled it, dealt with it. You are at ground zero.

It gets better. Time, patience, and talking it out on this site will definitely improve your mental health. Then social skills, then you're gonna bust a gut—um, excuse that, bust a smile laughing your "ass off" with and at some of us replying here and there.

All you got is time, so read the posts. You won't be sorry.

Welcome to the club. Believe me when I say we got your back. Ask and you will be answered.

Welcome wagon and good advice coming soon. 🧸

I’m impressed you are even reaching out at this point! And as Warrior pointed out, there is even humor.  Thank goodness!  but it takes a while. You are not alone and it does get easier. I found it was a bit like grieving so the first few weeks are pretty tough. And later, a bad day can come out of nowhere. 
4 months in, I’m amazed there are days I don’t think much of it at all. Never thought that would happen. 
I just read an article about transformative experiences. This has been one for me. I’m different even psychologically and a lot of that is for the better. Life looks more special. 
You will enjoy your special life again. Give it time. 
I wish you all the best!

Hi Magic, yes scary and frustrating at first but it can and will get better.  Echoing what Warrior wrote: a little time and patience plus some wisdom from this site will go a long way. Wishing you a speedy recovery.  Littlefish

Magic: As someone on this site told me three years ago, you'll spend the first month after surgery crying. Then you'll realize you have a full life ahead. You are so young, which may be hard for you to comprehend now. Take it from a geezer, you will get through this and your life will be wonderful and long. 

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Yes, take it one day at a time. I am 35 years with a colostomy. It will take time, and there will be a learning curve. The products these days are great with odor control and ostomy bags that work very well. After a while, you will forget you are wearing a bag.

Oh my, yes, Magic, I absolutely was where you are now. I spent an entire day in the hospital crying, looking at my bag and feeling scared and alone. Then I asked the nurse if I could empty my bag myself (big learning curve at home until I got the hang of emptying without any mess) and began to realize that I no longer had the pain of ulcerative colitis. After being home on glorious meds for post-op pain, I started to eat more and realized I no longer had to run to the bathroom; I could wait. Yeah, I had some leaks, I had to figure out how to dress to conceal an inflating bag, but I started to feel more present than I had felt in all my time with UC. I learned about M9 drops (which get rid of bag odor 99% of the time - a miracle!) on here and have gotten so much invaluable support not to mention a lot of laughs. Try to remember this is a journey, not a marathon, and there will be blips along the way. You'll physically get the hang of everything and hopefully start to accept your ostomy with time. Give yourself time to get through the "wtf?" period. We've been through it and we get it.

Hi sweetie,

It absolutely gets better. I promise. My own surgery was only 4 months ago, and I remember how hard it was to wake up. Compounded by being very sick, that was a very difficult period.

You may be feeling nauseous from the medications or the surgery itself or both. This will pass as your body recovers from the shock and you are taken off the meds.

As you learn to manage the ostomy, you will have a learning curve and setbacks, but it will gradually get better. We will be here, jumping at the chance to answer questions and help you resolve any problems.

Before you know it, you will be confident and running all over town. You can do anything with the stoma; you can live the life you want. It may not seem like it now, but nothing will be impossible.

G-Day MM,

It's all so new and still healing, and it will take time. Is your ileostomy permanent or temporary?

Once you get home and start doing it all for yourself, try different bags, which you can get for free as samples from all the makers of the bags, until you find, like we all did, the perfect setup for you. Stay with us and ask as many questions as you need answers for.

Regards, IGGIE

Hello Magic,

We've all been there. Laying in the hospital. Tethered to IVs, monitoring wires, drains, and fan favorite... the catheter. Beat up from being sick, then surviving surgery. We woke up to... the bag.

I underwent emergency exploratory surgery not knowing what to expect. A shiny new colostomy was quite a surprise. I couldn't see it... just the bag. Spent a few hours pondering, "What the hell?"

Eventually, a stoma nurse arrived for the big reveal. Soon a red little beast was poking out of my tummy. I stammered, "Is that... my intestine?" "Oh yeah," she said. I was puzzled. "Why... is my intestine sticking out... when it should be... inside?" She smiled, "Don't know... it happens." I mumbled, "Thank God... I'm already in the hospital, laying down."

She left, and I just cried. My wife arrived. Absolutely amazed I survived surgery. She was fairly hysterical. My operation ended after 1:00 AM. As my wife waited, she received no updates. She went home at midnight not sure what had happened.

Then... the beast let out a loud fart. BLAP... blappy Blap. I freaked. Pushed on the bag yelling... whoa... whoa. Wife ran to get the nurse. Funny now when I think about it.

The first few weeks back home were rough. My wife was sympathetic... but I wasn't. I was NOT... a happy camper.

After a couple of months, I got used to it. Became proficient at changing the wafer. Discovered this website. Got my questions answered. Read stories of pain, suffering... but ultimately: acceptance and victory.

A stoma... gave us our lives back.

I'm now 2 years post-op, don't stress about my colostomy anymore.

It's good to express your feelings here. We get it. Been there... Done that.

Take it easy. Don't rush your recovery. I fell twice at home because I wasn't careful. Lucky I didn't break anything.

You are at your lowest point right now as we all were.

The only way is up.

Of course after 25 years, it's easy for me to say but it is true, although hard for you to believe atm.

You will get through this. 🤗

V.J.

Hello M

You'll get there, we have all had dark days. But that all changes as we all have places to go and things to do. You may even find yourself giving advice on here before long as many before you have.

Nope, never felt like that since I’ve gotten my ostomy. Felt like total crap while on chemotherapy and radiation, curled up in a ball in tears cause it hurt so bad, but never since I stopped all that crap. You gotta change your mindset. The sun is always out and the sky is always blue even though sometimes there are clouds in the way. 

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Yes!  

yes, yes….this too shall pass…no matter how difficult a situation is, it will end and better times are ahead.  Hugs, jb

Yes, of course, it's depressing at first, and when you're having issues, however, it does get better once you get out and have full control and learn, learn, learn.

In the hospital, you really can't do much as you're stuck with their ostomy products and solutions, but once you get out, you'll have to do things yourself and, unfortunately, go through a rather lengthy learning process, but once mastered, it gets rather easy after that.

Once you can walk, you'll dump your bag into the toilet and use a water bottle to wash the bag out, preferably with some liquid soap, and that will take care of some of the smell.

I advise you to read a lot of the posts here, and you'll come up to speed faster.

Hi MM, welcome to the site. You've got a lot of support and good info here. You just had major surgery, and your mind and body are trying to understand what the hell happened, but as others said, it gets better.

Chiming  in with the majority.  Most of us are anxious and a little sad at first.  You are in a welcoming  place and we will see you progressing  as weeks go by.  Keep on posting  and feel free to ask any questions. 

I've had several colon surgeries and have learned that they always give you Hollister brand supplies. I don't know if they get a discount or if it's all for marketing! So, as soon as I'm coherent, I take the Hollister brand off and put on my own supplies. Sometimes, I need the assistance of my friend to help because the nurses or aides usually have not even seen a stoma and don't have the knowledge of paste or barriers. I have to use an ileostomy bag because of high output, and they always attach a small bag, even though I give them supplies to use after my surgery. The hospital staff is really unequipped with suitable staff to be of any assistance to the patient, especially to someone who is new to having a stoma. I've even been seen by a “wound care specialist” who was ill-advised on the knowledge.

Hospitals cut deals with manufacturers. My fav hosp. uses Convatec. I tell them no way. I bring my Coloplast products and am able to use my own supplies. Be firm, say no if you have your own. Use them.

I do this with my medications too. Bring them along. They need to register them but will give them back to you.

My med time is precise. I can't wait for the second shift to administer them. It's too late. Fudge them.

I take my own meds on time and deny them giving me their meds. You have this right.

Your hospital, its staff just happens to suck.

I'll have my bag reversed eventually, but it could be 5-10 years. I really want to have kids, so they've left my rectum intact until I'm finished having children. That way, I won't have any type of fertility issues.

Thank you all for all the support! I'm feeling more confident today. I saw an ostomy nurse and got to change into a different bag I much prefer to the last brand. I've been allowed to empty it myself today and I feel like just that little bit of control has helped. I'll have my bag reversed eventually, but it could be 5-10 years. I really want to have kids, and so they've left my rectum intact for now until I'm finished having children; that way, I won't have any type of fertility issues. In the meantime, I'll learn as much as I can and find out what works for me.

Good knowing you have a plan set.

5 to 10 years a lot could change your mind. Have you considered genetic involvement or testing?

It's always held me back about having children. Of course, my parents weren't aware, nor was it possible back in the 60s to have these tests.

My father's side sadly had the gene. I got it. Brother and sister didn't... Lucky me. 😖.

By the way, what hospital are you at? Is it a good one, do you think? Staff helpful? Friendly?

Would you recommend it? Thanks.

G-Day M&M,

5-10 years will go faster than you think, and the 3 children that you will have will be 3, 5, and 7 years old. Is that too many? Then slow down and enjoy your growing family.

Good luck, IGGIE

I have actually already started DNA testing. I have to get an appointment to get my results. I was at Lancaster General Hospital and everyone has been very friendly and helpful, I would definitely recommend it.

Thanks!👍

Just to add to everyone else. I had my ileostomy done when I was 22. That was 41 years ago. I have been able to do all the things I wanted. Traveling, scuba, kayaking, whatever. It takes a while to figure out the ostomy equipment but once you do it gets easier. I have a full life and prior to surgery it was not certain I would have any life. Hang in there and strive for the life you want!

Hi, I too had an ileostomy in 2019. My suggestion for you is to ask your surgeon whether it is permanent or if it can be reversed. I was able to have a reversal 12 months later. All was well until this year when I had another bowel blockage. This required another surgery and surgeon did a colon resection with no bag, thank goodness. If you can research whether there is an in person support group in your area, I found that quite helpful. Good luck.

C. West

Things do get easier. I lost my dad and 9 days later was diagnosed with rectal colon cancer.  A couple of weeks later I got a colostomy, started chemo and radiation And a few months later had the bigger surgery and also got a urostomy.  I then ended having to take early retirement at only 62 from a job that I loved.  I could not stop the crying and finally was put on a med for depression. That helped me get through the roughest days. I’m doing much better and even took a trip by myself driving to North Carolina.  I had to learn how to do things differently, but I’m thankful that I did it!  So hang in there. It does get better. With God all things are possible!