u/howliehowls

Hey all, I wanted to share my recent surgery experience for future havers of this god awful disease. Over the last two and a half years of my initial diagnosis, and in leading to the surgery, I have done so much reading here and can’t thank you all enough for contributing to this community and truly being more knowledgeable than some of the medical professionals I’ve met with.

For some back story (skip if you only care about surgery):

•35M
•First diagnosed 3/2024, hospitalized for one day and sent home with antibiotics after CT confirmation. Recovered easily with liquid diet.
•Second diagnosis 5/2024, second verse same as the first but with added diverticular bleeding
•Third flare 9/2024, no diagnosis, smoldering for a week while fasting. By this point I start my food journal and start making serious changes to my diet.
•Fourth flare 10/2024, diverticular bleeding, prescribed antibiotics from PCP.
•Fifth flare 12/2024, cleared up after several days of liquid diet.
•Sixth flare 1/2025. This was the big one. Doubled over, unimaginable pain, crying. I legitimate felt like I was dying and internally bleeding or had a micro perforation. Wife drove me to the ER and I was pacing back and forth cradling my stomach while in the waiting room. CT scan confirmed and no micro pref somehow, admitted for three days due to the intensity.
•First colonoscopy 3/2025, multiple abscesses identified and drained, no colon cancer
•One of the healthiest runs of the year after drainage. Over the remaining months of 2025 I had identified and cut out so many of my triggers. I would preemptively switch to a liquid diet and/or fasting if I started feeling the dreaded abdominal twinge. Sometimes I was probably just paranoid but I just couldn’t risk it.
•Many micro flares through second half of 2025 and first few months of 2026, no hospitalizations. Then considered surgery after receiving nonstop bad flares in March, April, May, and June this year

Finally met with a great surgeon in May and he strongly urged me to go through with the surgery. He said I will never be more healthy and young than the present, and I’m clearly getting worse. There’s no better time to recover than when you’re healthy. While extremely nervous, I agreed, and scheduled my surgery for 7/10 at Ascension St Joseph in Chicago.

The colon prep was much better than my colonoscopy prep. For colonoscopy, I had to drink an absurdly large container (in my mind it must’ve been a gallon and a half or two) of foul-tasting lemon line powder mixed with water at intervals throughout the night. Barely any sleep, still needed to use the bathroom urgently at the colonoscopy office. For pre-op prep, I had two 16 ml berry flavored water bottles to dilute with water that worked within the hour and cleaned me out fully by 10pm. Last small BM at 3am and barely disrupted my sleep. I have no idea why this isn’t the standard.

Surgery was three hours. Laparoscopic/robotic. I don’t even remember having the oxygen mask put on. Once in post-op, I woke up suddenly, extremely disoriented, and the pain was unfortunately much worse than I anticipated. One of the first things I asked for was more pain meds because it was genuinely shocking how badly it hurt, it felt like I was freshly cut open. For perspective I had an appendectomy 10 years ago and waking up post-op was so breezy in comparison.

Getting to my private room I was so happy I had the procedure at Ascension St. Joseph. Of all the hospitals I’ve stayed at, of which there have unfortunately been many due to many illnesses, this was the best. My room had a gorgeous view of Lake Michigan, the floor I was on was amazingly quiet, and the care team was frankly phenomenal. I felt very well taken care of, especially by the overnight nurse (whom I nominated for an award, some people are just born to be care takers and I’m certain I recovered as well as I did because of her). I did wake up with a catheter which was a shock, and honestly more uncomfortable and jarring than painful. Liquid diet for the first day. I was given IV Tramadol and when the pain kept me up at night I was given additional morphine which knocked me out. I was not bothered once during the night. My wife lovingly stayed with me in the room and slept in an uncomfortable recliner chair which was not in the room by default but available at request and much better than the regular chair they had.

5am the next day I had bloodwork and was woken up to an unbelievable sunrise over Lake Michigan. I felt really hopeful and inspired to get up and get out walking at the nurse’s encouragement; seeing the view made me want to recover as soon as possible and she said the sooner I walk the sooner I recover. 6am I had my catheter removed. I was bracing for the worst, but was shocked it didn’t hurt at all… just felt very, very strange. After removal, my wife, the nurse, and I walked up and down the hallway multiple times, and while painful, I didn’t need a walker or any help which I was thrilled by. For reference I did need a walker for my appendectomy and couldn’t even get up for the first two days. The gas they inflate you with was perhaps the most painful thing of all, getting trapped in my shoulders and chest, making it feel like I couldn’t get a full breath in. I kept getting up to walk every hour and a half and opted to stop taking the stronger pain meds only to ween myself sooner than later. The more I walked, the more I passed gas and had extremely black and bloody BMs. The next few resident docs that checked in with me were pretty confident I would stay another night, but then one of the surgeons on my team (not my main surgeon) visited and gave me some dos and don’ts. One big “don’t” is lifting anything over 15 / 20 pounds for six weeks!!! I am so thankful for my wife and have no clue how I would recover without her. Dr. also wanted to see how I handled solid foods, and if I did okay and passed gas / BM okay, he’d be happy to discharge me. He said having bloody / black BMs was part of the healing process due and to not be concerned until it persisted past day three or four. I played it safe with a grilled cheese and fries and it was perhaps the best dang meal I’ve ever had after everything that happened haha. Had another successful BM and felt okay to be discharged by 6pm the day after my surgery.

I was able to climb the stairs to my apartment okay. I think the pain / trauma / energy / everything must’ve just absolutely wiped me out though because I was out like a light when I sat on the couch and I don’t even remember falling asleep.

First day at home was brutal getting up. I almost felt like I had made a mistake, maybe pushed too hard and wasn’t ready. I was sleeping propped up on the couch and any movement of my stomach felt too much to handle, but powered through using my arms to get up. I sat in a desk chair most of the day when not walking for easier getting up. BM at this point started to look more dark brown and less bloody / black which was a great sign. Still played it safe with chicken / mashed potatoes / scrambled eggs. I’m alternating ibuprofen and Tylenol every 3 hours.

Second day at home felt like a world of difference. I was walking faster and for longer periods. BMs still looking even better. Pain is more at a 5 out of 10 than the 7 it had been at. Third day is more of the same, but I’m feeling the recovery in real time and am just feeling so thankful.

For anyone who has suffered like I have, please trust everyone in this community like I have and get the surgery while it’s not an emergency. My healing is greatly impacted by doing it electively and on my own terms. The earlier you can do it the better, because you’re never younger than you are right now! Please comment with any questions, your experience with the surgery, or recovery tips that helped you, I’d love to read your stories.

After growing up watching AMVs I finally took a crack at my own, with our boys’ “Full Nelson” paying tribute to the goat Vegeta.

Hey folks, I recently discovered the wealth of faceplate replacement options across Etsy/aliexpress/etc, but I have yet to see anyone take a stab at a reproduction of the gorgeous MOTHER 3 edition, which I find shocking! Do these exist? Is there someplace I’m not looking ? Really hoping for a UV print rather than a vinyl skin. Thank you !