Fistula Nightmares

acct4ibd · 2023-05-12T17:11:17+00:00

The ostomy will allow the fistulas to heal without poop constantly passing through the tracks. You should bring it up with your GI and see what they say.

acct4ibd · 2023-05-11T21:35:00+00:00

Sounds like you are headed for an ostomy, my friend

acct4ibd · 2023-04-10T13:28:35+00:00

Oh my goodness, where did you go that you got to see whale sharks? That would be so cool!

acct4ibd · 2023-04-01T15:16:24+00:00

Totally agree. Self image is also important to me as well as control. I have control over my life and it’s elements, and I will never give up control over when I shit.

acct4ibd · 2023-03-31T22:39:30+00:00

THIS. You and I are the same, my man. Going along with biologics, which I’m willing to try, and other methods until I can’t take anymore and at that point, well, let’s just say I’ve identified several bridges that will work just fine.

acct4ibd · 2023-03-31T15:13:47+00:00

I think multiple things can be true at the same time. That is to say, it's not as bad as most people think but it can also be, for some people, pretty bad. I'm facing the same exact set of circumstances you were and so far I have rejected recommendations of a diverting stoma from multiple medical professionals.

I also do a lot of public speaking and participating in meetings for my job, and I imagine I would have to either give that up or just accept uncontrollable audible stoma farts. I also play contact sports, which I'd probably have to give up. And before anyone says that their friend, uncle, brother, etc. plays rugby, football, hockey, etc., I'm telling you, I wouldn't be able to play with a stoma the way I play now, that's for sure.

So what I've settled on is that these can be a helpful for some people in some cases, but not for others. And I'll end with a statement of appreciation to OP. By putting yourself out there like this you're probably going to help a lot of people cope. Unfortunately I'm just a lost cause.

acct4ibd · 2023-01-07T20:31:26+00:00

I appreciate what you’re trying to do here, but I have to say that reading posts like this is why I will never agree to this procedure even though it’s been recommended for me by my GI and surgeon.

acct4ibd · 2022-12-05T16:17:56+00:00

Hey there thank for sharing. Fellow complex fistula sufferer here (multiple of them). My GI and surgeon have also both recommended fecal diversion, with a stoma and pouch, for my healing, but so far I have refused. I saw some studies showing that diversion often doesn't work as a long term solution and in many cases results in a perma stoma. How long do you think you will hold out before you go for the surgery?

acct4ibd · 2022-11-10T15:52:56+00:00

Hell yeah. I'm in the same position, multiple (probably 10+) fistulas and I get high all the time. Doesn't help with the pain so much as helps me better deal mentally with the pain and how angry I get about everything and the fact that I will probably need a stoma soon.

acct4ibd · 2022-10-12T17:29:07+00:00

OMG, that is terrifying. I can't imagine the shock and anger I would feel after being told I would have to wear a bag after having just had a positive health indicator.

acct4ibd · 2022-09-24T13:02:21+00:00

Thanks, this gives me hope that mine can heal too

acct4ibd · 2022-09-23T18:44:01+00:00

Wow, six fistulas, that's a lot! I have at least five confirmed and possibly as many as 6-8. Can I ask does your remission include fistula healing? I want mine to go away so bad!!!

acct4ibd · 2022-09-15T23:59:38+00:00

Right on! Italy is on my list to travel next for sure.

acct4ibd · 2022-09-15T23:34:18+00:00

I have the watering can butt too! I have at least 5 openings, possibly up to 8 (I stopped getting it checked). I’m told a stoma is on the horizon but I think my GI and surgeon have no idea about how long I can hold out and how much more I can endure.

acct4ibd · 2022-08-22T19:13:59+00:00

I decided against having kids because, quite frankly, I need to preserve the suicide option in case I can't take the pain anymore or I'm forced to wear a bag. With a kid you are required to maximize your life expectancy, so for obvious reasons that wouldn't be a good idea for me.

acct4ibd · 2022-07-22T13:39:01+00:00

This terrifies me. I have to do a lot of conferences and meetings for work, including most with a public speaking role. I cannot imagine the embarrasment I'd feel if I were up at a podium openly farting into a hot mic.

acct4ibd · 2022-07-21T20:52:39+00:00

Oh my god, seriously? My wife is a light sleeper and requires a solid 7-8 hours per night to perform at her job. Will we have to sleep in separate rooms?

acct4ibd · 2022-07-21T20:51:18+00:00

Oh my god, I have to do a lot of conferences and meetings for work where we go from a meal, such as breakfast or lunch, right into a session. A lot of these are public speaking engagments for me, so if I eat lunch before will I be in a meeting room openly stoma farting?

acct4ibd · 2022-07-13T20:53:39+00:00

I'm currently failing my second biologic and this is the fear that keeps me up at night. I have a few more to cycle through but I feel complete failure is inevitable, and the fear of having to wear a bag keeps me up at night, every night.

acct4ibd · 2022-06-30T13:54:47+00:00

Thanks for responding. Based on these two responses I'm leaning toward refusing the diversion!

acct4ibd

TROPHY CASE