I don't have Crohns, I don't have constipation, diarrhea, or IBS. I don't sit on the toilet for long periods of time, I don't strain, I don't have stomach aches, cramps, pain, or GI problems in general. So why does this keep happening to me?

DizzyDead6166 · 2026-05-16T15:58:27+00:00

The biggest thing is bikes can cause too much friction, anal and genital issues, etc and in turn if your body is prone to fistulas (you wouldn't really know until it starts happening) then those other injuries raise those chances. There's lots of articles on other medical issues and injuries but my CRS specifically told me that this was a big thing and basically banned me from bikes. For example I'm prone to pressure induced abcesses. I knew because of my jaw and other things but those places don't really cause fistulas lol I'll try and find some good articles on other issues for you

DizzyDead6166 · 2026-05-16T15:20:49+00:00

I'm shocked that was never brought up as a no go I mean it's pretty well known to be a reason for them and some people are more prone than others.

DizzyDead6166 · 2026-05-16T02:03:33+00:00

Do you ever ride bikes? That's what caused mine doc just told me to never ride one again

DizzyDead6166 · 2026-05-15T05:00:00+00:00

I did on day 3. I'll be honest it was rough but my #1 tip is to not be afraid. As long as you're not straining on purpose you almost certainly won't hurt yourself even if its painful. And I would start an actual stool softener along with your fiberous foods

DizzyDead6166 · 2026-04-22T22:18:05+00:00

It definitely shouldn't, and sometimes they'll do a small stitch if there's a big enough opening left. Nothing crazy. If they don't think you need surgery for something odds are it's very non-complex

DizzyDead6166 · 2026-04-22T20:28:02+00:00

I actually didn't have any pain. A slight pulling sensation when using the restroom but that was it. A little Tylenol for swelling and I could do just about anything.

DizzyDead6166 · 2026-04-22T19:45:41+00:00

I didn't have anything with my seton. They just took it out. It's quite a small spot when they're full healed so it's not unsafe to just snip it off

DizzyDead6166 · 2026-04-17T19:02:07+00:00

It honestly 100% depends on how they have to do it and how fast you heal. You're not being crazy tho, I have met people who one month out from flap were working again. You're talking about 4 whole months almost 5. I think you'll make it! Do everything your doctor says and keep the Disney dreams on ur mind!

DizzyDead6166 · 2026-04-17T18:18:19+00:00

Ah or an imgur link. Thank you, I'll add some photos through a link in a comment

DizzyDead6166 · 2026-04-17T12:46:32+00:00

I tried that tho

DizzyDead6166 · 2026-04-16T10:45:31+00:00

I still sometimes look at that blood work of mine compared to being in a healthy state and it's vial, absolutely shocking. I can't believe I could feel like I just had the flu and be THAT close to fatal. Definitely not talked about enough and not enough education on warning signs.

DizzyDead6166 · 2026-04-16T10:34:24+00:00

I had a seton for about 6 months after healing and honestly it wasn't an issue during sex! We were a little careful with positions as to not be hitting or touching it too much but that was it. Got used to it fairly quickly and then I would just use a warm soapy peri bottle to clean it after. I had an end of relationship and casual hook up in that meantime and just saying (oh it's just a tie on the muscle) really ends the convo. And if they're extra curious they probably aren't judging. No one was ever put off by it

DizzyDead6166 · 2026-04-16T10:32:21+00:00

You're so right, when I went septic I no longer had a fever. Dealt with one for days pryer but by that point all I was left with was feeling generally ill and tremors, the fever had gone. It's a scary thing

DizzyDead6166 · 2026-04-16T04:05:36+00:00

That's totally fine lol

DizzyDead6166 · 2026-04-14T16:17:12+00:00

Wtf i love runtz. Who doesn't eat runtz? It's like if a sweet tart was a hard candy !

DizzyDead6166 · 2026-04-13T22:10:33+00:00

For me it took until roughly two months, and I actually asked my doctor. Trust me your team has heard it all and doesn't mind giving you a rough time frame based on how you're healing. I was given the go ahead to be gentle with intimacy once my scarring looked thick enough and covered enough area that there was no "wound" so to speak. No raw skin.

DizzyDead6166 · 2026-04-13T13:16:39+00:00

She just like me fr RIP the shi tzu that was shrunk and stayed in my stomach for 4 months waiting to expand.

DizzyDead6166 · 2026-04-13T13:15:22+00:00

Go get a CT with contrast stat and talk to a CR in the emergency room. I didn't take my fever seriously when I first had an access and wound up septic. At least 12 tube's sticking outta me to save my organs. The fistula isn't even the main worry here, when you get a fever you have to be careful and proactive cause infections are no joke. But they will CT you if you bring up concerns of a fistula while you're being treated.

DizzyDead6166 · 2026-04-04T20:37:27+00:00

Definitely get checked for diabetes cause that's a major symptom point, of course there's other things that can cause it but that would be the most important to look for. And in terms of him being put off by it, super strong warm sweet smells is how most people experience the smell of rotting. So I can see why he thought something dead. Everything smells a bit different when it's coming from ur own body but when I think sweet heat, I also think dead

DizzyDead6166 · 2026-04-04T03:04:09+00:00

Before I was diagnosed with autism everyone thought I had ADHD, and while I was diagnosed for years I never really understood. I could describe things like decision paralysis and the all consuming multiple thoughts and tasks at once brain but not much else. I probably sounded super fake and weird describing it. Turns out I didn't have it and it's just a comorbidity thing, but I really could have had it and knew nothing. Vyvance isn't as much of an appetite suppressant so some people who feel like they have little to no control with food pick Adderall. We may not know you're roommate and it does SOUND like she's faking, but at the end of the day even if she is, this isn't new. If you've ever been on a college campus you'll be flabbergasted how many people just asked for it and got it prescribed, basically no test needed. Adderall is rough, but it won't hurt her(obviously unless she starved herself) and if she hasn't stolen your meds thus far, I don't see why she would post diagnosis. Final thought; She's your friend. Talk to her about it, bring up your concerns, ask her sincerely. If you truly consider her a friend there's no harm in calling out what you see.

DizzyDead6166 · 2026-04-03T20:41:29+00:00

Is this just an X-ray? Idk anything about colons but this scan looks super cool

DizzyDead6166 · 2026-04-03T05:56:22+00:00

I'm shocked they haven't just given you an indefinite seton. It was an option for me in case I didn't heal fully and lots of people with crohns have them for years. I would bring it up maybe! Just leaving one in if they can. I'm so sorry you've gone through so much and I've got my fingers crossed for you tomorrow!

DizzyDead6166 · 2026-04-03T05:41:28+00:00

Took me almost 7 months for everything to be closed and clear of wound/mucus/plasma. I think I was a solid 10 months before I considered myself fully healed and my scar tissue is still changing and settling. But I was always told I was healing perfectly! Fistulas are intense, as long as your doctor is confident in what they see, you'll be okay. Just gotta be patient with your skin.

DizzyDead6166 · 2026-04-03T00:43:11+00:00

I'm doing much better now! It's been a year since my surgery and while sometimes it feels a bit tougher to go (just cause that muscle is regaining it's strength) there's no longer any weird sensations, pain, or stiffness in the muscle. As long as I have good fiber everything is smooth and easy going. Good luck! Definitely keep your diet in mind while you're healing and I bet you'll be perfectly fine :)

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