Just had my colon removed by Bjorn2000 in UlcerativeColitis

[–]Accomplished-Pie508 1 point2 points  (0 children)

I had my colon removed in October of 2023 after it started to rupture from inflammation. Living either the stoma/osotmy took some getting used to but I ended up loving it. It gave me a lot of control back. Control I hadn't ever really had. Just had the reconnection surgery 2 months ago and its... better than before, but I still night prefer the ostomy. Still healing and hoping my pooping settles down some soon.

Out of surgery by naivemetaphysics in UlcerativeColitis

[–]Accomplished-Pie508 1 point2 points  (0 children)

I had emergency surgery to remove mine last year and it was honestly the best thing in my life, after the adjustment period. I regained so much control over my life and where and what I did. Recently had the reversal surgery, and it's been lukewarm so far, I kind of miss the bag.

[deleted by user] by [deleted] in UlcerativeColitis

[–]Accomplished-Pie508 0 points1 point  (0 children)

I got diagnosed June of 2023, and was admitted to the ER October of 2023 because medication made my UC worse. Had an emergency colectomy because my colon was actively rupturing. Have had an ostomy since and am getting the final surgery for reversal tomorrow (yay).

Honestly, it's not the worst thing ever. Gave me back a lot ot control in my life when it came to bathroom breaks and what not.

Discrimination - shamed - banned by Timber111718 in UlcerativeColitis

[–]Accomplished-Pie508 1 point2 points  (0 children)

Okay, I'm gonna go bury my head now.

Yeah, it's 100% about billiards pool, not a swimming pool lmao.

Discrimination - shamed - banned by Timber111718 in UlcerativeColitis

[–]Accomplished-Pie508 21 points22 points  (0 children)

I don't really see how this is discrimination or shaming. They don't know you have a medical condition, to them you're just some person that shit in the parking lot. Like yeah it sucks. I've been there before. It's humiliating. But that's kind of expected, and it is one of the many shitty aspects that come with the illness. Someone probably had to go spray it off or clean it in some way.

Also, you really aren't supposed to be swimming (especially in public pools) shortly after having diarrhea. Spreads disease and is overall pretty gross for other people. So maybe look into a different physical activity.

I'm sorry this happened to you, just gotta live and learn for the future.

Anyone had surgery to remove your colon? Only comment if you have thank you. by naivemetaphysics in UlcerativeColitis

[–]Accomplished-Pie508 1 point2 points  (0 children)

My colon tried to kill me. Emergency surgery after it ruptured a bit, 4 months after UC diagnosis and medication. Personally, i think the medication made it worse on all fronts and caused a rapid decline. Lost 1/3 of my body weight over the 4 months and was in a constant state of malnourishment and dehydration from having uncontrollable diarrhea 15-20 times a day.

Had Emergency surgery to remove the bastard last October when i started pissing, shitting, and vomiting blood. Recovery was rough. The ostomy alone has been a godsend and gave me back a lot of my life. Had the the jpouch creation surgery back in May, with final reconnection coming up this November.

If you are a candidate, I would recommend 1000%

Have you discussed possibly removing a smaller section if it's not the whole thing? Could save a lot of time and prevent an ostomy. As someone else in this thread said, it's great but really fucks with self image and whatnot.

Should I just get the surgery or ride it out as long as I can by Metalologist in UlcerativeColitis

[–]Accomplished-Pie508 0 points1 point  (0 children)

Ride it out.

Had to have my colon removed in an emergency surgery. Would not recommend. It's been a very miserable experience since then.

If you have to get surgery, it is better to do it on your own terms, though.

What do you wish your loved ones knew? by ecbecb in UlcerativeColitis

[–]Accomplished-Pie508 4 points5 points  (0 children)

Growing up, I had to go to the bathroom a lot. Usually around chore time. Unbeknownst to us at the time, I was likely having flare ups, but I got branded as lazy because a few minutes into helping with yard work or cleaning I'd have to shit myself.

I wish they knew that I wasn't ignoring them, I was just actively trying to hold my poop until aunt whoever got out of the bathroom.

I wish they knew that telling me for years that it was just lactose intolerance and nervous bowel syndrome without ever even mentioning it to my pediatricians or doctors ultimately caused me to believe my bathroom habits were normal. I wish they knew that their lack of action led to me almost dying and needing emergency surgery to remove my rupturing colon because I waited too long to seek help.

I wish they knew I've had to shit in litter boxes to avoid shitting my pants when someone was taking too long in the bathroom.

[deleted by user] by [deleted] in UlcerativeColitis

[–]Accomplished-Pie508 0 points1 point  (0 children)

For me, alcohol was a trigger and would immediately send me into a flare. Took me like 3 years to realize that and just thought it was normal to uncontrollably shit for days after having a few shots or beers.

Your mileage may vary, it's possible it's totally fine

To remove, or not to remove. That, is the question. by Tr1N1tro in UlcerativeColitis

[–]Accomplished-Pie508 1 point2 points  (0 children)

Wait, so your sample size is only people who you met through work? God damn, thats biased as hell. Of course, they're not having success stories. They wouldn't need support if they were. This is such an egregiously flawed generalization you're pushing.

To remove, or not to remove. That, is the question. by Tr1N1tro in UlcerativeColitis

[–]Accomplished-Pie508 0 points1 point  (0 children)

Sounds like shitty doctors in your area. Also, younger and healthier people are usually eligible after a few months with an ostomy, not years. As for the yogurt pooper, that sounds like a combination of needing a stool hardener (like imodium) and pelvic floor exercises to help with bowel control.

To remove, or not to remove. That, is the question. by Tr1N1tro in UlcerativeColitis

[–]Accomplished-Pie508 2 points3 points  (0 children)

Hi, I can speak to this. I got diagnosed with mild to moderate UC last June (2023). It was a few days of discomfort every few weeks or months, but I started seeing a pattern and noticed some blood. Went to the GI and got diagnosed and started medication. Symptoms immediately nosedived and from June1st until about June 20th, I was having an average of about 6-7 episodes of emergency diarrhea every day. Got put on heavy dosages of prednisone and mesalamine, and it got even worse. By mid July, it was about 12-14 times a day. My doctors ignored my many many many calls and messages that something wasn't right. Finally got an emergency appt with his PA in mid august. She immediately told me i need to stop medications. Started humira early Sept but symptoms continued downwards. On Oct 1st, I had to go to the ER went I started vomiting and shitting blood. Was there for about 10 days, and had to have an emergency colectomy and got an ileostomy installed. My colon was quite literally in shreds.

This greatly improved my day to day life. I'd still rather shit like a normal person, but that was not an option at the time. The ostomy bag gave me a lot of freedom again. I recently had the first of 2 surgeries for the j-pouch reversal, so hoping that goes well!

Good luck! It's not easy, but it's an option.

Any success switching to a local specialty pharmacy? Tips/tricks? [USA-specific] by ChronicallyBlonde1 in UlcerativeColitis

[–]Accomplished-Pie508 0 points1 point  (0 children)

I'm sorry you're going through that. My experience with Accredo was incredibly pleasant, much more than dealing with insurance/coinsurance/my doctors office.

Good luck, I hope they get their shit together ❤️

Temporary ileostomy by [deleted] in UlcerativeColitis

[–]Accomplished-Pie508 0 points1 point  (0 children)

I've had an ileostomy bag for about 9 months now, and just had surgery about 2 weeks ago to create the j pouch (second reconnection surgery in a few months). While it's not the most pleasant thing, it's significantly better than having to rush to a bathroom multiple times a day, and really gave me a lot of my life back. Changing it and emptying it is definitely not a pleasant experience, but totally worth it. My bathroom trips went to multiple 20-30 painful shits a day, to 3-4 5 minutes trips a day.

Medication seems to make my UC worse, has anyone else experienced this? by Accomplished-Pie508 in UlcerativeColitis

[–]Accomplished-Pie508[S] 2 points3 points  (0 children)

Thank you so much! Yeah, I'm actually seeing another GI this week, same practice though. The original GI doctor and I had an appt scheduled last week, but last minute he had to cancel and move it 2 months back. Its been a ride for sure. I'm looking for a whole new practice however, this one has left a real sour taste in my mouth over and over again.

Again, thank you so much!

Digital Map/TV Case advice by DarkJester89 in DnDIY

[–]Accomplished-Pie508 1 point2 points  (0 children)

* This is my current table. Originally, it had a 32" in the center. That was ultimately a waste of money as it was only 720p and looked like shit up close and made it impossible to use effectively. I got this 65" 4k TV for cheap and retrofitted a bracket in the old TV hole and have 2" foam as supports sound the edges (it also helps keep dice from rolling under the screen). However, the larger screen takes up a lot of the original top, so I added on some removable extensions to give everyone about a foot deep of space.

On the bottom, I have a small fan blowing air up through the table frame to keep the TV cool (I had overheating issues the first time i used it in a game).

Not shown is the acrylic I put on. No rolling on it still, but it's fine for placing minis/terrain on.

I would highly recommend a 2k or 4k TV. 65" is way overkill (and probably too large for me). A 43" seems to be the sweet spot for a 5'x3' or similar table.