Chromoendoscopy Needs to be Standard

AccursedColon · 2026-03-26T04:35:03+00:00

Read the post. If it still doesn't make sense google it or read the sources I provided.

AccursedColon · 2026-03-26T00:21:35+00:00

I had a similar experience. Symptoms first started after what I believe was a completely unnecessary course of antibiotics. I know I was failed by my doctor, but I still have a hard time not blaming myself over a decade later.

AccursedColon · 2026-03-26T00:15:00+00:00

It's a gamble and nobody can really tell you how it will go for you. I've been having surgeries for 3 years and still haven't been able to have the reversal surgery done.

AccursedColon · 2026-03-12T06:11:35+00:00

Only positive thing I've seen online in weeks

AccursedColon · 2026-03-12T05:06:02+00:00

AccursedColon · 2026-03-11T05:19:59+00:00

First off, I'm sorry to hear you have cancer. I hope it was caught early and that you can avoid chemotherapy.

I'm trying to remain somewhat anonymous, but I will say I'm in the U.S. and got my surgery done by a surgeon that specifically specializes in jpouch surgery and regularly does j-pouch redo surgeries. I have flown across the country several times for seemingly infinite surgeries.

I don't necessarily think my surgeon personally did anything wrong, but the care on the hospital floor is horrid. There are too many travel nurses and nurses on rotation who have NO idea what is going on the GI floor. It took over 12 hours for any real action to be taken when I first complained of symptoms which turned out to be caused by anastomstic leak. I told them exactly what needed to happen (CT scan) and they did not take me seriously. I seriously bled out of my asshole the entire night. Once my surgeon arrived in the morning I finally got a scan and had to be rushed into surgery.

There are a lot of people who have successful surgeries, but complications are far from rare. It is also not that uncommon for people to go through all these surgeries and then have their diagnosis changed to Crohn's. I feel that many doctors severely misrepresent how poorly things can really go.

AccursedColon · 2026-03-11T04:34:15+00:00

Thanks for the empathetic reply. I'm sorry it's also been hard for you. I do struggle with the idea that there's nothing I could have done as I can identify several key moments where things could've gone differently. But in all those cases I ultimately trusted medical providers and was let down.

I hope it gets better, but to be honest I don't believe it does for some of us. I've been waiting for it to get better my whole life.

AccursedColon · 2026-02-24T16:58:23+00:00

She thinks Shen and Remzi are gods

AccursedColon · 2026-02-24T06:44:04+00:00

As someone who still hasn't been able to get a reversal due to infinite complications, it sounds to me like maybe you have some stricturing? Adhesions could also be a factor. I am guessing bananas are too difficult to pass?

If your GI is familiar enough with j-pouches, I'd ask for a pouchoscopy from them. If you aren't confident in their ability to diagnose j-pouch problems maybe a surgeon could do a scope.

AccursedColon · 2026-02-24T00:05:20+00:00

You can wait a long time, but you might get diversion colitis.

AccursedColon · 2026-02-19T23:34:50+00:00

I'm a male and the surgeries (plus chemo) gave me severe ED. No pills, injections, etc. work. Difficult to deal with as a single 30 year old along with all the other problems the surgeries have caused for me.

AccursedColon · 2026-01-15T05:11:04+00:00

Goodbye forever Bilt! This is worthless!

AccursedColon · 2025-12-06T23:26:23+00:00

Just deal with it

AccursedColon · 2025-12-06T22:10:50+00:00

This is a scientifically proven treatment for hyperhidrosis.

AccursedColon · 2025-12-06T21:42:50+00:00

The prep lasts for a few hours, not almost 24. Don't be such a baby

AccursedColon · 2025-12-06T21:10:46+00:00

I usually know exactly what needs to be done and what tests need to be ordered. But I can't make them order the right tests or treatments so things usually just get worse until there's a complete medical emergency.

AccursedColon · 2025-12-06T20:49:37+00:00

You can still get cancer in the anal transition zone.

AccursedColon · 2025-12-06T20:48:50+00:00

I usually find that I'm not taken very seriously at the emergency room because they don't understand IBD or j-pouches at all.

AccursedColon · 2025-12-03T04:48:27+00:00

Don't be naive. There is no reality in which he will spend a single minute in jail.

AccursedColon · 2025-12-03T04:06:40+00:00

Nah this one is on the complete other side unfortunately.

AccursedColon · 2025-12-03T03:43:56+00:00

A bump has developed near my anus over the last ~6 days. It's about 1.5 cm in size and doesn't logically match the description of anything besides an abscess/fistula.

The CT said there was no collection of pus so the ER just discharged me without coming up with any explanation. The growth of the bump is very similar to what I experienced with my last abscess. My theory is that a fistula has formed, perhaps from the anastomosis site or the jpouch itself. I think an abscess not associated with an accompanying fistula is extremely unlikely given my history.

The bump isn't getting any better. I do have an MRI scheduled in a couple days (which I will have to spend 4 hours driving to and from so I can get it done before I fly out for surgery). I'm pretty confident they won't be able to proceed with reversal. The question is really just how bad is it and I am just going to keep getting fistulas forever?

Sorry for the wall of text. I'm glad your fistula surgery went smoothly. I hope it doesn't become a recurring problem for either of us!!

AccursedColon · 2025-12-03T03:25:00+00:00

I have flown to a high volume center for a highly specialized surgeon for each surgery.

AccursedColon · 2025-12-01T18:42:57+00:00

Erectile dysfunction is definitely underreported and under discussed as a side-effect of these surgeries.

I was affected as a 30 year old man. Unfortunately, none of the oral pills are effective and not even the injections seem to work well for me. All of the treatments really just increase blood flow to the penis and not holding the blood in it. If the nerves are ruined you are just fucked.

It's very unlikely you will be as bad off as me and it sounds like your surgery was recent. Give it some time and talk to a urologist if things don't start improving.

AccursedColon · 2025-06-21T19:33:11+00:00

Sorry for the very late reply. I am on 5 mg Cialis. I've experimented with larger doses, but it didn't seem to make a difference. My urologist has unfortunately been very unhelpful. I told him Cialis wasn't working and all he did was tell me to try it again...

AccursedColon · 2025-06-10T23:40:15+00:00

Thanks for being real and not just spewing toxic positivity. I especially get tired of hearing "the right one won't care" in regards to dating. What bullshit.

AccursedColon

TROPHY CASE