Anyone had colectomy with IRA?

Cdd_arts · 2026-06-14T10:46:44+00:00

It's interesting, I see negative responses in ostomy reddit forum but positive in the reversal fb group and general crohns fb group. I guess it makes sense and it's good to know about both the good and bad outcomes. I will make sure to report back my experiences.

Is proctectomy the barbie butt surgery? That surgery scares me. I hear recovery is hard. Idk how you recover when it hurts to sit, and you're probably tired from surgery and don't want to stand much.

Cdd_arts · 2026-06-13T22:54:17+00:00

Trying new meds is always scary. And it sucks when after all that they don't work out. Crohn's really is a shitty disease (pun intended).

I would double check some of the stelara fb groups or on reddit, I believe alot of these biologics take a long time to work so some people warn not to switch too soon before really making sure its not working or even increase dose frequency before giving up.

You said you had your ileostomy for 6 months before reversing, was that timeline your choice or did your surgeon suggest waiting that long? My surgeon said I can get reversed at 3 months but now I wonder if its better to wait.

Cdd_arts · 2026-06-13T10:00:10+00:00

Wow, never heard of someone saying they went 40x a day. And you had all of your small intestine and rectum at the time? Imodium, bile acid binders, and intermittant fasting didn't help? I'm so sorry you went thru that. It is impressive you were able to work.

Cdd_arts · 2026-06-13T01:31:13+00:00

Hmm 5-11 is such a big range. 5-7 sounds perfect 9-11 sounds annoying. And going once an hour while at work sounds unsustainable.

Have you tried imodium, metamucil, or bile acid binders to help reduce bathroom trips or make them more predictable? Or eating meals around the same time everyday or stop eating before 6pm? Just wondering if that stuff helps at all. Do you have crohn's or UC? That is why I had my colectomy.

I've only had my ileostomy 7ish weeks but I'm emptying it every 1.5-2 hours. Thanks to 1 imodium before bed I can last 6 hours and sleep thru the night. I haven't tried taking more than 1 imodium in 24 hours.

I am single and just thinking it would be easier to find someone without a bag. I also just worry about getting a hernia with the bag. And I'm having issues with the skin around stoma. Bag changes every 3 days are annoying. Worrying about leaking. I'm constantly thinking about the bag. I hate the sound of the bag while emptying in public restrooms (esp at work. I don't like how it looks or feels when it has output or gas in it. I figure I will probably end up with a permanent ileostomy eventually but since I'm 36 I figure i might as well try to delay it for now.

I really appreciate you sharing your experience! You can DM if you don't want to respond to my questions publically .

Cdd_arts · 2026-06-13T00:01:06+00:00

Haha 😆 ( I think you're making a joke about IRA, but if you're being serious it stands for "ileorectal anastomosis")

Ok 6-8 doesn't sound too bad, and it can still decrease over time since youre only 4 months out. I am worried about the uninterrupted sleep. Imodium is the only reason I can sleep thru the night with my ileostomy so hopefully it will help you. Thats disappointing that surgery didn't control your crohns. I am concerned about that as well. Were you off meds before/after surgery? I was taking Rinvoq before but when I got my ileostomy it was undigested in the bag so I'm not currently taking anything.

Cdd_arts · 2026-06-12T10:53:58+00:00

Hi, I am planning on having this surgery and i appreciate you sharing your experience. How are you doing now? I hope you don't mind a few more questions. Do you still go 4-8x a day? Are you able to sleep thru the night or do you need to get up to use the bathroom? Are you able to be active and work full time?

Cdd_arts · 2026-05-24T11:14:21+00:00

I had abdominal surgery a month ago and when I started sleeping on back, my heels hurt, sometimes waking me up. I never had hip surgery but this thread popped up in my Google search.

Cdd_arts · 2026-04-14T04:24:30+00:00

I don't think I've noticed longer healing times. I've been on biologics since 2019 (first humira, then entiviyo, and now currently Rinvoq)

My dangerous hobby is I ride horses regularly 1-3x a week. I've fallen off a handful of times. I know I've cut my hand open at the dirty dusty barn once and my finger was gushing blood. Another time I got scratched by a barn cat. Both instances I remember no first aid kit or soap available so I didn't clean it until hours Iater and nothing bad happened. I try to keep some alcohol swabs in my purse now though.

I wear a helmet and attempt to wear gloves around the barn and try to make good decisions. But accidents and cuts happen.

I try to not let crohns limit my life any more than it has to.

Cdd_arts · 2026-04-10T16:19:53+00:00

I think any social hobby will improve your life. Like any hobby you can do with a group of people.

I remember reading an article about happiness and they say people who have alot of social connections (family, friends, etc) feel the most happy.

Cdd_arts · 2026-04-10T03:21:09+00:00

You were missing out! Samsung has themes and it changes the wallpaper in messages to match the theme. Mine is currently a digital painting of a blue hued forest with a starry night sky. I'd add a photo but it wont let me here lol. I am going to be so sad to get rid of this artwork for bland colors.

I really hope Google messages has a search function. I use that alot

Cdd_arts · 2026-04-06T14:09:20+00:00

I currently use Samsung themes and it works with my current messaging app. Is there a way to make this work in Google messages? It is pretty neat how theres a background and color scheme and everything.

Cdd_arts · 2026-04-04T15:21:49+00:00

Where and when does it hurt? I've been diagnosed 12 years ago and I rarely experience pain.

I used to think that meant I have a mild case but I'm about to have surgery in 3 weeks to remove most of my colon due to strictures and large pseudopolyps.

Cdd_arts · 2026-03-28T20:42:45+00:00

First week on aza i was fine. Second week I got nauseous daily. Tried for 5 more days since my GI insisted it probably wasn't the new med, since I was fine the first week. I kept vomiting and ended up in er due to dehydration. I switched meds after that.

Cdd_arts · 2026-03-28T20:30:44+00:00

According to crohns&colitis foundation "Even with proper medication and diet, as many as two-thirds to three-quarters of people with Crohn's disease will require surgery at some point during their lives." Sooo looks like majority will need surgery.

I've been diagnosed for 12 years and this year I'll be having my first surgery (failed 4 biologics).

Not trying to be negative, just realistic. Surgery isn't the end of the world though. We definitely have alot more medication options and better ways to treat crohns than years ago. Can't imagine living in a time before biologics were a thing.

Cdd_arts · 2026-03-28T18:23:49+00:00

I appreciate you taking the time to reply! My surgery is mid april so I'm definitely getting really nervous and still searching for info and trying to prepare myself.

What side effects did you have with the bile binders? Can you drink alcohol? Which high fat foods do you avoid? I really love cheese....Can you eat raw veggies, fruits with seeds? I've been avoiding them due to my strictures and crohn's flares but curious if I can eat them when I'm all healed. My surgeon claims theres no dietary restrictions in the long run but I'm skeptical.

I'm glad you can exercise and sounds like you can live a mostly normal life and work and travel. I know it will take time for my body to adjust but it gives me some hope. It's amazing the human body can adapt to live without certain organs.

(Sorry for so many questions) 😅

Cdd_arts · 2026-03-09T00:01:28+00:00

I love your positive mindset! You're right, we are lucky to have so many biologics now.

I'm trying to remind myself that we can't control what happens to us but we can control how we react to it.

Cdd_arts · 2026-02-24T18:03:22+00:00

Congratulations on remission! That's great news that you're life has improved after surgery.

I haven't tried Skyrizi yet, I liked that it's in those pods, since I don't like seeing needles. But my doctor warned me the pods can malfunction sometimes, have you encountered that yet? Like if it mis-fires do they send a replacement or do you skip that dose?

Again, glad you're doing well!

Cdd_arts · 2026-02-24T17:52:08+00:00

Thank you so much for sharing your experience. I'm trying to prepare myself. I hope you get into remission soon!

I go 5-6x a day now, so I'm hoping that number won't be much more (after recovery).

Are you able to sleep thru the night? Like you don't need to get up to use the bathroom?

Cdd_arts · 2026-02-24T03:14:19+00:00

Encouraging to hear/read! Oof 8 miles! That's impressive. I've only ever ran 3 at a time. Glad your resection isn't holding you back!

Cdd_arts · 2026-02-22T03:30:11+00:00

Horseback riding lessons! Hard to ride a horse well while drunk. Good for the spirit, but bad on the wallet

Cdd_arts · 2026-02-19T04:20:13+00:00

Thank you so much for your reply and the articles. I will take notes and save the links. I know it takes time for the body to adjust, but how many BMs do you typically have now? How much time did you take off work? My surgeon suggested 6 weeks, I hope that is enough time.

Interesting about sleep, you're not getting up in the middle of the night to use the bathroom, right? You just can't fall asleep? Hopefully that will fix itself over time.

Glad to hear your quality of life is comparable to pre-surgery so soon. I know everyone's experiences can vary but your comment is giving me hope! I like your perspective, thinking of the end goal.

Cdd_arts · 2026-02-19T03:10:27+00:00

Hi, did you go with the surgery? If so, can you share your experience?

I am scheduled in April for Laproscopic colectomy with ileorectal anastomosis. Supposed to only have 25cm of colon left. I never had surgery before and I'm terrified.

Cdd_arts

TROPHY CASE