BOOM! Got my Ileostomy.

[Roark]

And got rid of a case of UC at the same time.

First things first, modern medicine rocks. I don't even really remember the week of surgery. They got some good drugs in those hospitals.

Second, there is a big difference between being sick, and being weak and tired and sore after surgery.

Third - I kinda love this. I mean, yea. I got a hole in my stomach and a stoma and a bag and a new diet and other stuff. But I'm not sick anymore.

Where is the open bar? They got one up in here? Cause I'm pretty sure we've all earned a drink.

Roark.

[Mysticobra]

I've had mine close to four years soon.
I consider it a cure for my uc.
As soon as I got it all of the mess I had before was gone.
My abdomen was relaxed. No stressy feeling. Just relaxed.
Diet? I eat anything and everything!
Congrats on the acceptance of your stoma!
That's the hard part if it works well. Mine does.
Is accepting what you or I have. Took me a month to accept it and move on.
But I was really sick and at the end of my rope. Mentally and physically. So it took time.
But once I did it was one of the most wonderful feeling in my life.
I say one of the best. I have kids.. Grandkids... Wife... Their first...
Richard.

[Roark]

Thanks Brother.

I am also looking at mine as a cure for UC. I was diagnosed at about 35. For the last ten years I've fought the disease and refused to give an inch, but in the last year it turned on me. I've always used exercise as part of the regiment to control the symptoms and it worked, but this year in March I started a flare that put me down harder than any has before. Stubborn didn't work anymore. If I pushed myself harder to keep going, I just got sicker.

I think I'm mostly to acceptance already and largely was before the surgery. My wife - who is brilliant - made a couple of observations that help me cut through some of the fuzzy thinking.

I was worried I would be gross with this thing. "Sweetie - You've had ulcerative colitis for a decade. You are far worse now than you will be after the surgery."

The other thing she helped me see was that there was a false comparison in my head. It's a vector problem. For a normal person with no disease, an ostomy is a downgrade on their life. It is hastle and mess and ugly and tough where they had normal before. It looks like an endless chasm when you are looking down from above. For me, it is an upgrade on life because I AM ALREADY BELOW THAT POINT. I'm not normal, and haven't been. But when considering how to accept this thing, my brain was going to assigning itself normal status and trying to freak me out. I have nothing to fear because that chasm that normal people see when looking down was the fall I've made over the last decade. I fell, and survived. And now I'm at the real bottom which is far, far beyond any place they will ever see or go.

When you are looking back up the same way someone normal is looking down, your perspective is better. You see that the ledge below the cliff isn't miles below, but a neat little ledge tucked carefully just below normal. It catches some when they are hurt, or have a short term need, and they think they have found the depths of hell. But for people like us, it's everything. We get our lives back.

Just try to not to giggle at people who are having a mental breakdown because they fell onto the ledge. It wouldn't be polite.

Dude. This thing rocks.

[Mysticobra]

That is one way to look at it. Not bad.
Me. I got to the point if I didn't do it I wasn't going to be here anyway.
That bad. It was gonna be the death of me.
It's normal now.
My wife was a big factor in it too. She probably wouldn't care if it was hanging off the back of my head..lol.
Its a nasty disease. And some of us can hide it well. I did for a very long time.
But hiding it was easy. As is the appliance. Bag. Easier to hide the bag than deal with uc.
And it's so much easier to just let it go in a bag than try and hold it feeling like your either going to explode inside or just letting it go. Which I had to do so many times.
I'm glad it's over.
How long have you had your ileo? Great attitude. I think alot of us feel the way we do. Good. Not embarrassed by it. Which I'm not. To old to care what people think or don't think. I'm rambling. Just woke.
One thing I shouldn't do is wake and post stuff without enough coffee.
Which is one thing I went back to drinking with no problem!
Richard

[Roark]

Agree with everything you said. Managing a severe case of UC and dealing with the accidents and urgency and pain is near impossible, but we manage. Most of the time, people had no idea something was wrong. Compare that effort to an ostomy? Nothing even close. This is predictable, manageable and can be a private thing again. Time is back on your side, if you plan. You are back in control. And when you get that after being at the end of your rope? Yea. Acceptance isn't really what I have. Was there last week. Gratitude is more like it now. I was half dead, and now I'm fully alive.

I got mine two weeks ago, Oct 21st. Was doped out of my gills for the first week. This week has been physical recovery at home. Back to work Monday. Itching to get back to working out, but I know I have to go slow. They have freaked me out enough with the talk of hernias and whatnot to make me wait.

Right there with you on the coffee. Must have.

[NEskier]

Only bit of advice I can suggest to you since you are gung ho and happy is listen to your body. I was eight weeks out for recovery before going back to work. (Admittedly that was 35 years ago!) and my surgeon would have preferred a couple more weeks. SO as you go back give yourself some slack. This is major surgery and an assault on your body.

My surgeon said there would likely be a time when I was suddenly absolutely exhausted and not to fight it. That's not unusual. Glad he was used to working with Type As! My worst one came at the grocery store. I had a cart half full but couldn't even imagine getting it to the check out! Felt like my battery was about to stop. And, since I'd been warned, I did just leave the cart and went right to my car. I even sat for 10 minutes with my seat back before I could rally to drive home. This was at least six to eight weeks after I was back at work! I'd been jogging and what all else during recovery, but this just slugged me that day.

Some say the body can take a year to be 100% again. Likely you'll be closer, sooner. You sound amazing!

[Roark]

No, thank you for the caution. I keep hearing it over and over from everyone. It's clear that you feel better faster than you really are. At least twenty people have said that or something similar to me and at some point I actually did start believing it. But it's still good to hear again to keep it in mind. I hear you about the grocery store. I did a quick run to my local Walmart last Wednesday and while I made it there and back, I was shocked at how "done" I was when I got back. Trying to do it after a day or work? Yea. I'd fold.

Part of me is desperate to jump back in and prove I'm through it, but in the last week I've been surprised to find I'm a bit lax about it as well. I had been fighting UC for so long I think I really conditioned myself into believing that every day was a fight. Now that I'm not sick anymore I've found myself slipping from that Type A into maybe some Type B+ range. Couple of days this week I spent almost ten hours on a couch, working on some projects on the PC and I didn't really get up and move around much at all. That isn't me. Usually I haven't been able to sit still for more than thirty minutes. So much so, it's been a problem.

On top of that, I figured out that my bedroom smells better. I think I was so sick the smell was lingering. That's gone. I am remembering my dreams for the first time in a decade. I'm wondering if I was so sick I wasn't even getting to that stage of sleep. I used to wake up with splitting headaches from gritting my teeth. I also did it during the day some. That has stopped. I think it's the pain being gone. Every day I'm noticing one or two small changes that I didn't intend to make and I realize I think I was a lot sicker than I thought I was.

This new life kinda rocks. So I sit around a bit for a few months. While year ago me would have been appalled, new me is kinda thinking I've earned the break.

[danilynn]

For a normal person with no disease, an ostomy is a downgrade on their life. It is hastle and mess and ugly and tough where they had normal before. It looks like an endless chasm when you are looking down from above. For me, it is an upgrade on life because I AM ALREADY BELOW THAT POINT. I'm not normal, and haven't been. But when considering how to accept this thing, my brain was going to assigning itself normal status and trying to freak me out. I have nothing to fear because that chasm that normal people see when looking down was the fall I've made over the last decade. I fell, and survived. And now I'm at the real bottom which is far, far beyond any place they will ever see or go.

I love this.

That is my ostomy experience. I have Crohn's and an ileostomy, not UC, but the general ideas you share are right on. My ostomy is not always easy but it's miles better than where I was 26 years ago. Congratulations on your new life!

[Mysticobra]

Boom!
2 days after I posted on a Sunday I had a minor leak.
Sunday is change day for me anyway. So I put it off a half hour and went and did my change.
But then all week (it's the Saturday after now) I had what I'd call a burn.
I changed it Tuesday to look and it (the skin around the moldable wafer) didn't look bad.
Dark in some areas but not red like I was expecting. Weird.
But the feeling. Which was quite annoying had settled a bit so I changed again Thursday on my regular day and noticed dark skin. Not all. But mainly on the top. Anyway after that change the feeling subsided a bit more.
But it was a strong feeling in the beginning. Hard to describe. Had a tad of pain to it but not really seeing any red skin was weird. Cause it felt like there was blistering going on.
This is really the first sorta problem I've had in awhile. I am hoping it's not an allergy to the wafer because I have them stockpiled! Lol.
Richard.

[Roark]

Thanks Danilynn - It is a nice new life. I was telling my wife earlier tonight: It's a unique experience to see the world all over again. Having this thing makes everything new again. Work, going to Walmart, dinner out. Whatever it is I do, I am looking at it new. Being a middle aged man who gets to see the world with fresh eyes is a cool blessing.

Mystic - sucks on the leak. I am waiting for my first one. I am trying like hell to figure out how to take care of the skin and I'm not sure I'm doing so well with it. The wound nurse did a changeout on me at the hospital a day after my surgery (to show me how) and when she pulled up the adhesive on the wafer (? - not sure I'm calling that the right thing - the part that sticks on me that the bag snaps onto) she managed to pull up a lot of skin with it. I had a lot of red spots from the adhesive pulling up skin. I assume it was from the wafer only being on for a day and the adhesive being pretty sticky still. Having to put down another one on it over and over since and I'm not sure it is healing right. I started using the barrier rings, and then the skin prep on the last change but damn everything down there is red. Have an appointment with my surgeon next week and will discuss it with him then.

But you know what? This still beats UC. By miles.

[Mysticobra]

Roark.
Leaks are part of the game.
We all have them. I know when it happens. It's subtle usually and I'll go change immediately. I waited because it was just starting. I could tell. Now I know not to wait and just go change.
It's my advice to you. Lol. Don't wait if you know you have a leak.
As for the wafer. Being on a short time they are very difficult to get off. I found that out the hard way too in the beginning. That scared me because I was thinking is it gonna be like this all the time? Cause it does mess the skin up bad.
But I use a spray releaser now. I call it "liguid gold" it works on one that's been on an hour or four days. The wafer will drop right off while using it. Sensi-Care spray releaser. I think it's made by Coloplast. Try it. You'll use it every change. I do.
Good luck,
Richard.
(welcome back)

[jstl]

It can be hard for non-sick people to relate to the "new-ness" factor. When I had my ileostomy as a 15 year old, after having UC for most of my life, I experienced that. Everything was interesting and fun and a bit scary. Going for a walk around the block without stopping , being able to stay awake for an entire day, going to school, all the tasks you do at school.... My peers didn't understand. It is a wonderment to suddenly feel well physically and it affects one spiritually.

[banbmn3022]

Roark

Your story makes me laugh because that was me one year ago. Stricken by a diagnosis of UC and medications that did nothing and the result...hello permanent ileostomy! It is my life saver. Reading how eager you are to resume life, I was the same way, my only caution...follow the physical restrictions and guidelines to a T! Don’t push it to early. Once my colorectal surgeon cleared for more activity...I stepped it up but I did that slowly. A little recap....at my worst around 150lbs and a year later, 193lbs. I’m extremely active again. I usually run 4-5 miles 3 times and week and the other three days are spent in the gym. My wife thinks I’m a gym rat now but it is the one thing I have control of....my short battle with UC was a wake up call regarding my physical health. I wasn’t bad but we can always do better. Any type of leak or blowout....learn from it, it’s all we can do. I’m in my late 30s...and I can honestly say I’m probably in the best shape of my life physically and emotionally. That disease sucks and definitely takes it’s toll. Good for you and I hope it all works out well for you.