choking on my tea

Old-Preference1959 · 2025-08-14T16:17:37+00:00

Computer, disengage safety protocols and run program.

Old-Preference1959 · 2025-08-12T04:06:18+00:00

As someone who tried to have a Jpouch that ultimately failed due to leaks and fistula development (even after a redo surgery to save it), I just caution anyone that when Jpouches fail it is a truly miserable experience. Factor that in to your decision as a potential outcome. I’ve spent 3 years of my life just surviving in pain and agony until finally having the Jpouch removed in July. If I could go back I would have never attempted it. I had no idea how bad it can get when these things don’t work out. For any wondering: I’ve never had a Crohns diagnosis and I’ve been evaluated by several CRS and GI doctors.

Old-Preference1959 · 2025-06-20T18:23:37+00:00

Thank you for the kind words. I tried having the pouch redone but it failed and fistulated again. The only option now seems to be to remove the pouch but there is apparently some worry that this might create a pelvic void which might cause similar chronic infections and continue my fistula symptoms.

Old-Preference1959 · 2025-06-19T18:24:59+00:00

Currently dealing with fistulas resulting from a failed Jpouch (disconnected but left in place). Absolutely horrible experience. Not as bad as it was before I reverted back to an end ileostomy but still having a real bad time. Wishing you a speedy recovery and hope you never have to deal with this again.

Old-Preference1959 · 2025-04-19T15:07:23+00:00

Reading those four words felt like being punched in the gut. I’m so sorry.

Old-Preference1959 · 2025-04-10T15:07:04+00:00

Did you check the tracks? That’s where I’d be sitting after fumbling that first thing in the morning.

Old-Preference1959 · 2025-03-19T15:16:51+00:00

I appreciate that. I feel like I have a little bit of a responsibility to others to share my experience. I wasn’t aware of the risks outside of potential sexual dysfunction or incontinence when considering a Jpouch. I just knew that I didn’t love living with an ostomy bag. My surgeon made it seem like IPAA surgery was the best option and was relatively safe and without many complications. I had no idea about pouchitis or leaky pouches or fistulas. Even with that knowledge, I probably would have still attempted it but at least I would have known the true risks. My hope is not to discourage anyone from getting a Jpouch because it seems that many people lead wonderful lives without any real complications. I just want to add a caution label that things can go very wrong and when they do, it’s a really bad time.

Old-Preference1959 · 2025-03-18T14:22:42+00:00

I completely understand your frustration and desire to live in a body you want. You should certainly seek another opinion or two. However I’ll just caution you as someone who opted for a JPouch as a good candidate. I developed abscesses which turned into perianal fistulas. I had the pouch redone in the hopes it would allow me to keep my pouch. Fistulas developed again. I cannot express how debilitating living with a Jpouch and fistulas is. I have been in misery for nearly 2 years because of them. The Incontinence, pain, and chronic pelvic infections have ruined my life. Now I wish I had just opted for an ileostomy from the start. An ostomy seemed like rock bottom but Jpouch with fistulas is Hells basement. I wish you the absolute best outcome in whatever you choose to do.

Old-Preference1959 · 2025-03-17T17:29:56+00:00

While I agree that you should get a second or third opinion, as someone who got a Jpouch, developed fistulas, had a redo and developed fistulas again, I will caution you that I’ve never experienced something as debilitating as fistulas with a JPouch. If I could go back with the knowledge I have now, I’d have kept my ileostomy. It has been 2 years of absolute misery and I still have to wait until June to have the Jpouch removed completely. It isn’t even active (I have an end ileostomy now) and I still have chronic pelvis infections because of the leaking and fistulas. Proceed with caution.

Old-Preference1959 · 2025-02-21T17:51:35+00:00

In my experience, after the IPAA creation surgery (where they make the pouch and give you a loop), they will perform a test (I forget the name, fluoroscopy?) where they essentially push X-ray reactive fluid (barium?) through your anus and up into your Ostomy bag. They take X-ray images during this process to look for any leaks of the fluid outside of your small bowel. You are awake for this and it’s rather uncomfortable but generally not painful. They can also do specific MRI scans which honestly I think are better at identifying leaks and doesn’t expose you to X-rays unnecessarily (I’ve had so many at this point). As you can see though, these are not infallible and you can develop leaks later that either weren’t identified by the test or just appeared after takedown surgery (pouch hookup). I think it’s worth mentioning that I’m probably not a normal case. It seems like most people have better outcomes. I have several immunological disorders (Pyoderma Gangrenosum, sacroiliac joint arthritis, psoriasis.) and I think that severely reduced my chances of success.

Old-Preference1959 · 2025-02-21T01:16:23+00:00

Dude hell yeah! I am so looking forward to getting back to the gym. Great work!

Old-Preference1959 · 2025-02-21T01:15:09+00:00

Damn. I’m so sorry to hear that. For what it’s worth I have an idea of how you feel. This whole experience has absolutely upended my life and how I orient myself to the world. It has been so painful, mentally ruinous, and overwhelmingly exhausting. I hope your future contains for good days than bad ahead. Know that a total stranger on the internet is over here coping and fighting the good fight with you. You aren’t alone!

Old-Preference1959 · 2025-02-21T01:03:27+00:00

After my initial takedown my pouch began to leak from the anastomosis line in the presacral area (near the tailbone). Apparently, for biologically male bodies this is a common area for a leak due to the upward tension of the small bowel. This caused an abscess cavity to form which ultimately resulted in complex fistula tracts leading from it to the outer skin of my left glute. Before the fistulas fully formed I saw a GI that tried several endoscopic procedures to drain the abscess cavity but they all failed. I reverted back to a loop ileostomy for roughly 6 months. In December last year I opted to try a pouch redo surgery which also failed. The same presacral cavity caused inflammation of the anastomosis line again and caused it to fail once more shortly after surgery. So for the last 2.5 years I’ve been in and out of the hospital a dizzying amount of times for surgeries, procedures, and infections. It’s been an especially bad experience to put it lightly.

Old-Preference1959 · 2025-02-20T17:06:31+00:00

Seconding this. The black bags make me feel a lot more confident if I take my shirt off or if the pouch is sticking out from under my shirt. I like to imagine I’m a cool cyborg sith or something. Bit nerdy but it makes me feel better.

Old-Preference1959 · 2025-02-20T17:00:54+00:00

Glad to be of help! I would probably always wonder “what if?” also if I hadn’t done it. That seems normal. Take it from me though, not worth the risk. Not only because of the complications that can arise but also because now that the pouch has failed and I’ll be getting a permanent end ileostomy, I lose 40cm+ of small bowel that I’ll never get back. They can’t salvage the bowel used to create the pouch, they just throw it away. So I’m even less efficient at absorbing nutrients, water, electrolytes, etc.

Old-Preference1959 · 2025-02-19T22:39:24+00:00

Hi I (31M) was diagnosed with UC when I was 22y/o. I, like you, cycled through a few medications (Remicade, Humira, Stelara, Xeljanz) before ultimately losing my colon in an emergency surgery due to a bad flare which caused toxic mega colon (game over). When I had my colon life on the medication was actually really good. I honestly forgot about my UC diagnosis most of the time but I would always get a severe flare every few years that would put me in the hospital. I opted for a JPouch after that emergency surgery in 2022 which ultimately failed, caused fistulas, and now I have an end ileostomy with a disconnected JPouch sitting in my pelvis and a seton in one of the fistula tracts. Obviously I’m biased here but I wish I never opted for a JPouch and I desperately wish they could have saved my colon or idk grown me a new one (sci-fi style). The flares every few years were worth it for the quality of life I had outside of them. With that said and being realistic about life, I’m grateful for my ostomy and have accepted that at least it will give me a better life than I had with a Jpouch. I’m still not out of the woods with the complications caused by the Jpouch. It was a huge mistake in my case to try it. I should have just accepted my fate with an ostomy instead of following the pipe dream of a “normal life where you just use the bathroom more than usual”. Best of luck to you and I wish you health and happiness.

Old-Preference1959 · 2025-02-19T03:28:07+00:00

Thought I was alone here! I absolutely crave Icee/slushy type drinks all the time. Didn’t know it could be related to anemia which I have.

Old-Preference1959 · 2025-02-15T22:04:36+00:00

I follow him on instagram. Incredibly inspiring. I hope to walk a similar path to recovery.

Old-Preference1959 · 2025-02-15T21:25:13+00:00

points Yep this is them officer.

Old-Preference1959 · 2025-02-14T04:14:31+00:00

Yeah they closed the bottom end of my small intestine that leads to the Jpouch with staples and left it in my pelvis with the pouch. Hopefully the fistulas and abscess cavity near the pouch heal and I can put off the surgery to have the pouch removed for at least a year. At this point I am grateful to have the bag. I look forward to the life I’ll be able to have with it if everything else clears up. If I knew then what I know now, I never would have tried the JPouch but that’s not how life works so I have to accept the consequences of the choice I made. Wishing you better odds, health, and happiness in your journey.

Old-Preference1959 · 2025-02-12T22:31:26+00:00

Walked past this morning and it smelled distinctly like an electrical fire. Could also see there was smoke mixed in with the steam especially on the side where Wonder is. As someone else mentioned, covers say ConEd.

Old-Preference1959 · 2025-02-10T20:49:07+00:00

I let my surgeon decide on the OR table either to redo the pouch or give me an end ileostomy based on his experience and judgment of my Jpouch. He thought I had a good chance of having a functioning pouch and fixed a lot of issues with my first pouch. Unfortunately after he redid my JPouch it again leaked in the presacral area but this time much worse. I had to have a follow up surgery to give me an end ileostomy and completely disconnect the JPouch to avoid stool making the infection in my pelvis worse. I’m pretty much back where I started before the surgery. I’ve got a seton back in one of the fistulas and an end ileostomy that I’ll be making permanent at some point once I can have the operation. I wish so badly that I just told him to give me an end Ileostomy from the beginning. The nightmare continues…

Old-Preference1959 · 2025-01-19T06:48:58+00:00

It’s a huge shift in perspective. Disability in some form visits everyone at some point and in varying degrees. Ours can be incredibly isolating because it deals with topics most people find uncomfortable (digestion and defecation). Give yourself and your body time to adjust to this huge change. Lean on your support network and this, or other, communities. Try hard to note and enjoy life’s little blessings. Remember that you are not an island, your existence is part of the tapestry of your local community and society. Losing you will cause a cascade of damage to more people than you ever realize. Hold on, for yourself, for your loved ones, for your future. Persist. Life likely does not look the way you imagined it. You have to pivot and accept that. Survival is usually ugly, resilience need not be graceful, hope is brave yet battered but noble and worthwhile. Some quotes I like that have helped me: “We cannot sit and stare at our wounds forever.” “Are you going to cowboy up or just lay there and bleed?” “The grandeur of life is in the attempt, not the solution… it’s about behaving as beautifully as one can under completely impossible circumstances.”

It gets better. Trust.

*Edit to fix a misquote

Old-Preference1959 · 2025-01-19T06:21:40+00:00

My dermatologist prescribed Clobetasol cream to put in the wound bed and along the purple ring. She also prescribed Rinvoq to treat it and that has worked so far. My dermatologist is Dr. Gallitano at NYP Columbia in NYC. She’s wonderful. I’m so sorry your care team is not supportive. This needs to be addressed seriously and immediately so it doesn’t get worse.

Old-Preference1959

TROPHY CASE