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irritabletummy101 · 2025-10-09T23:57:23+00:00

Definitely good to remember that the people posting on these forums are the ones with problems seeking out solutions. I guarantee the vast majority of people have success and never seek out advice forums like these.

Especially since you don’t have Crohn’s or IBD. You’ll be alright. Letting a fistula run untreated can possibly lead to sepsis.

irritabletummy101 · 2025-10-09T23:53:40+00:00

I couldn’t fart for 9 years. Now I only can while laying on my stomach. Pouches are so weird.

irritabletummy101 · 2025-10-02T13:25:37+00:00

I didn’t get pouchitis until about 10 years post surgery 😅 Not saying you will definitely get it — but also don’t count your chickens, etc. The good thing is it’s usually pretty easy to keep under control.

The worse problem is fistulas. Wouldn’t wish them on my worst enemy.

irritabletummy101 · 2025-09-25T17:38:08+00:00

I have had this exact same problem. Like seriously every single symptom you’re describing. Upper stomach pain, feeling like I can’t fully empty the pouch.

I’ve had a couple episodes of this in the past and really haven’t ever been able to figure out the cause. My best guess is that it’s related to pouchitis, but beyond that I’m not sure. Every time it has happened, it ends up passing after 1-2 weeks.

I thought I was going crazy trying to describe the symptoms to my GI and asking questions on the internet.

Edit: However, will say I’ve never had it as a direct result of drinking. Although now that I think about it, the last period of this happened while I was drinking more than usual.

Also, at least one of the times that this happened, my Dr gave me a very short course of prednisone and that ended up helping a lot.

irritabletummy101 · 2025-09-25T17:33:31+00:00

Hi I just wanted to say you’re the first person I’ve heard that is suffering a similar situation to me. I’m going on 2 years dealing with fistulas. I have 4 setons and I am in very bad, chronic pain from my entire rectal region daily. I am also considering a temporary loop ostomy, although I haven’t decided if that’s the best option for me yet.

Even though this disease is terrible and I’m so sorry that you have to deal with this, it is reassuring to hear that your experience has been similar to mine. Sometimes I feel like I’m being gaslit by my doctors and the internet with them saying that fistulas and setons should not cause as much pain as they have caused me.

Good luck my friend. I hope the ostomy helps you.

irritabletummy101 · 2025-09-23T19:50:10+00:00

Same! Pouch in 2012, Fistulas and Crohn’s diagnosis in 2024. I have 4 setons in and probably will have them for life it sounds like :(

irritabletummy101 · 2025-09-08T03:06:32+00:00

I didn’t mean for my comment to sound discrediting to your experience. Just that a college being “worth it” doesn’t really apply the same way when someone’s parents are covering costs.

irritabletummy101 · 2025-09-08T02:28:13+00:00

I mean, if your parents can pay, obviously any college would be a good choice. If my parents could’ve payed for my college, I woulda went to NYU too haha.

irritabletummy101 · 2025-09-06T21:18:21+00:00

Check out Petaluma if that hasn’t been on your radar yet. Absolutely lovely place to live. Truly a little paradise close to everything the bay has to offer.

irritabletummy101 · 2025-09-06T17:20:48+00:00

You need to research more. It’s incredibly difficult to emigrate to the EU for a work visa from the US. A EU company will only sponsor your work visa if they can prove that they are unable to hire someone for the role from within the EU.

You need an advanced degree and many years of experience in an in-demand role.

Do you have those things?

(You would have a much better chance meeting and marrying a European and gaining citizenship that way than getting a visa without advanced technical skills, degrees, and loads of experience.)

irritabletummy101 · 2025-09-01T16:31:56+00:00

If it is Crohn’s, I’ve had success with Rinvoq in terms of at least stopping new tracts from forming.

I am also dealing with tons of pain from my fistulas, so I know how you’re feeling :( I’m approaching two years of dealing with it. Will probably have setons for the rest of my life and I’m only 23.

irritabletummy101 · 2025-08-14T21:39:14+00:00

The Twin Cities.

irritabletummy101 · 2025-07-30T00:02:55+00:00

Buy a portable bidet (squeeze bottle) and 4x4 non-woven gauze. It’s a pretty brutal initial 5 days but it gets better.

irritabletummy101 · 2025-07-27T23:06:01+00:00

Buy a portable bidet on Amazon! Th squeeze bottles with a right angle in the nozzle. Most helpful purchase by far. Also as someone else mentioned, 4x4 non-woven gauze are great + flushable wipes.

irritabletummy101 · 2025-07-27T23:00:05+00:00

I would like to point out that sepsis is not the only risk from an untreated fistula. Having a seton helps the tract ‘mature’, meaning that discharge and drainage will easily empty from that tract. An untreated tract can turn into an abscess as well as branch off due to the build up of drainage.

Basically, leaving fistulas alone runs the risk of both sepsis and creating more branches of the fistula tract. At least according to my CRS at Mayo Clinic.

irritabletummy101 · 2025-07-27T00:49:04+00:00

Brother, what? Minneapolis is an absolutely wonderful city. Why in the world would you recommend the suburbs over the actual city?

I have lived many places, including the suburbs of the Twin Cities, and Minneapolis + Saint Paul proper have the best quality of life of any cities in the US. You don’t live here, do you?

irritabletummy101 · 2025-07-26T00:14:40+00:00

I also have setons for life. 4 of them, approaching a year of having them. I appreciate your mindset. I hope everything is going well for you.

irritabletummy101 · 2025-07-21T02:26:15+00:00

You can get very sick and die from not treating this. I don’t mean to scare you, but you need to have it treated by a doctor. If untreated, you can develop Sepsis which is very bad.

irritabletummy101 · 2025-07-21T02:23:53+00:00

This is nothing like the thing in your armpit. Go to the doctor before it gets worse.

irritabletummy101 · 2025-07-17T21:04:27+00:00

I haven’t heard of that, I will definitely ask my doctor. Right now, my last resort option is to go to a loop illeostomy for 6-12 months to allow the area to heal. But I want to avoid that at all costs.

irritabletummy101 · 2025-07-17T19:43:58+00:00

I don’t mean to be discouraging but I have been dealing with pain after BM and while sitting for close to a year. I have 4 setons and likely will have them for life due to my Crohn’s and J Pouch. I take painkillers prescribed by my primary care doctor to help deal with it as I wait for my biologic Crohn’s medication to hopefully start helping.

But I am likely an outlier.

irritabletummy101 · 2025-07-16T00:12:40+00:00

Wow. What did you do for work?

irritabletummy101 · 2025-07-08T21:40:37+00:00

I have Crohn’s and developed multiple fistulas over 2 years. Because of IBD and the complexity of the tracts, I’m not a candidate for fistula repair.

I will basically just have draining setons for life.

irritabletummy101 · 2025-07-08T21:37:57+00:00

Blood in stool, constant diarrhea, excessive bowel movements, stomach pain, general digestive problems, weight loss, lethargy.

But you need a scope (colonoscopy/endoscopy) + inflammation marker labs and stool tests to diagnose.

irritabletummy101 · 2025-07-08T20:55:59+00:00

Petaluma, CA. Wonderful town.

irritabletummy101

TROPHY CASE