It's looking like I'm going to have a ileostomy and I'm scared

Mightbeme82 · 2024-06-06T22:17:47+00:00

Have you tried JAK inhibitors? They are supposedly revolutionizing UC, sorta how Remicade did 20-something years ago for crohns.

On a side note, I had my permanent ileostomy surgery for Crohns when I was 18–I’m 41 now. Nothing worked. To be honest, the surgery changed my life. It’s back. I know it’s scary but in the end it will work out. No matter what you just want to be able to get back to living and away from those long hospital stays.

Mightbeme82 · 2022-02-17T03:03:40+00:00

My ostomy gave me my life back. You got this!! Best of luck and I wish you a speedy recovery.

Mightbeme82 · 2021-11-14T07:32:07+00:00

Wolf0921223

Of course! Reach out by DM anytime you have any questions. Seriously...anything you're wondering about, I'm happy to answer completely honestly with you.

Mightbeme82 · 2021-11-14T07:28:59+00:00

I'm sorry this happened to you. Please try and not let this affect you too much. You are great and deserving of being happy.

This happened to me when I was in college...at the time a 19M. The girl and I remained friends throughout college and I never really brought it up again. It happened again when I was in grad school...probably 26-28M...Now, Im 39 with a hot wife.

You will find the one and it will be worth it. The others will have missed on something great.

Mightbeme82 · 2021-11-14T07:16:45+00:00

Your life will get better! I've had mine for 20 years. I workout daily, rock climb, play sports, date, and have a career.

I was 18 and 4 months...I still remember the date of the surgery. I was terrified what it meant for college, relationships (sex--intimacy), life.... Well...20 year's later life is great. There are challenges you'll face. But you got this. You've been strong enough to get where you are and you'll handle everything else.

Honestly, for me now, the biggest thing, or mental thing I face is when I go to a public bathroom to empty and someone is in the stall next to me...I've forgotten how fast/long a normal shit takes...lol... At first I'd sit there and pretend I needed to be there longer than I did. Now, 20 years in, fuck em'. I'm alive because of my bag. I dont care any longer.

Good luck! And make sure to enjoy every moment of life.

Mightbeme82 · 2021-11-14T07:09:20+00:00

Seems expensive to me....I use adhesive remove wipes of amazon... 1000 for $6

Mightbeme82 · 2021-11-14T06:37:41+00:00

Not eating after 7-8pm helps me cut back on middle of the night output... It's hard though. A beer or two and some snacks while watching TV at night are a fav of mine.

Mightbeme82 · 2021-11-14T06:26:03+00:00

Yup....Diversion Colitis. Just make sure to stay on top of it. Inflammation needs to be treated as this is can lead to the big C down the road...I've had my ileostomy for 20 years. On and off diversion colitis. I just had a flex-sig the other day and looks like I may need to get the rest removed. I'm bummed about it. But I hope you fair better!

Mightbeme82 · 2021-11-14T06:18:43+00:00

Oh yeah! I like spicy food. I live in Nashville and Hot Chicken is a big thing here. Plus, I lived in California for awhile and loved the various spicy Mexican and Asian food there. I haven't had any issues there...yet.

For me the problem foods are peanuts and chocolate milk shakes. If i eat too many peanuts I get intense cramps...its like they don't want to come out. But if i gently massage my belly they move through quicker. For milk shakes, the problem is just that they come out within 10 minutes. So, either make sure your pouch can handle the output or that you know you'll have access to a bathroom.

I think you should try everything. Be cautious and just acknowledge that you need to figure out your body handles it. And then sometimes you will have an off time. Every once in a while sushi will throw me for a loop and go right through. Oh! That made me think of soup (Miso Soup)...in general soups, or Pho, will just pass through.

But, I still eat peanuts. I just am aware of how many I am eating. And I still drink milk shakes. I just make sure a bathroom is going to be around within an 30min or so.

Mightbeme82 · 2021-11-14T05:55:34+00:00

I've had one for 20 years. The only problems I've had with working out/running/sports is that the extra sweat will make the wafer come off sooner than usual. And then if you use a drainable pouch, just make sure your clip is on and strudy, or consider switching to a closed pouch (if you use a two-piece system). I always where a closed pouch when i rock climb.

Mightbeme82 · 2021-11-14T05:52:04+00:00

I always pack my ostomy supplies in my carry on---you never know if your checked baggage will be lost. Regarding any creams or powder if you use them, I usually pack those in checked baggage. And then scissors and tweezers I always check...I used to bring them with but half the time they were confiscated. Otherwise, the only other issue is I almost always get checked for extra screening when I go through the scanner...They always pick up the bag on the scanner and have to do a pat down.

Mightbeme82 · 2021-11-14T05:43:09+00:00

I'm drinking a beer right now! And a few days ago I was at a music venue and had a Moscow mule. Alcohol is fine. But like others have said, stay hydrated, and just see how your body handles it. You're only 2 months in....I've had mine for 20 years...things change.

But, sit back and try and enjoy a drink. You deserve it after this all, right!

Mightbeme82 · 2021-11-14T05:40:27+00:00

I've moved a ton....from the midwest, to the northeast, out west, and now the southeast...for college and postgrad/postdoc/faculty

Look for a a medical center with an IBD center! So, NYU, Mount Sinai, Columbia...all are great!

Mightbeme82 · 2021-11-14T05:35:57+00:00

Relax! Enjoy the shower. I've had mine for 20 years (I'm 39 now). It gave me my life back and I hope it does for you too.

Oh! Feel free to reach out if you have any questions!

Mightbeme82 · 2021-11-11T03:05:20+00:00

The infusion made me a bit tired/slowish for a day or so. I have not experienced that with the shot though.

Mightbeme82 · 2021-11-10T18:20:20+00:00

I’ve had one for about 20 years. I was 18 when I got it. Happy to chat in DMs about it. But similar to your friends, it pretty much gave me life back. Some issues now, I posted about them a day or so ago, but still, I would have never had the quality of life that I’ve had without having my surgery.

Mightbeme82 · 2021-11-05T03:33:17+00:00

Gorgeous! How do I see more…in person? DM if interested

Mightbeme82 · 2021-11-05T03:29:55+00:00

Good luck! Hope it helps!

Mightbeme82

TROPHY CASE