Phantom Rectum Syndrome: Seeking Others with Similar Experiences

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994
Toppermost
Jan 02, 2022 11:31 pm

Hello Ostomates

I recently joined this site and sent out a request to hear from anyone who was double bagged like me, i.e. has a colostomy and urostomy. Given the rarity of that situation, it was nice to hear from a couple members who could fully relate. It's not my intention to brag about how special I am, but now I want to put out another call for a condition that is apparently even more rare. It's called phantom rectum and it's as bad as it sounds. It's just like a person having a leg amputated, then feeling pain in the leg that's no longer there. So every pain imaginable that a rectum could cause is created in my brain and it feels 1000% real. I will spare you the nasty details but the pain in combination with the location made it feel like torture. Eventually, by chance, I was referred to a neurologist pain dr. who tried an off-label opiate use to treat heroin addicts. It helped, then with the addition of smoking marijuana (legal in Canada), I got to a point where life was worth living again. So if there is anyone else out there who has experienced my misfortunes, check in. Maybe my unusual combination of meds might be useful to others.

Best in the new year

Toppermost

Past Member
Jan 03, 2022 12:02 am

Sorry, you went through that. Happy New Year.

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AlexT
Jan 03, 2022 2:07 am

2 peas in a pod. ????

Panko
Jan 03, 2022 3:04 am

I almost forgot about the weed! I used to puff from about 15 years old in the early 80s but gave it all up at 35! I loved to get stoned, have a few beers, listen to music, mainly reggae, which I grew up with and have collected since I was 12 years old. I have quite a large vinyl and digital collection since then, now 53. I must say, a day does not go by without listening to reggae as it is so uplifting, I find. The biggest thing about weed, music, and beer is when you take the weed out of the equation, the music does not sound the same, especially reggae, dub, old school, and roots music. I used to puff only after 6pm; that was my golden rule. If I puffed in the day like many friends do and did, I would get fxxk all done but made up for it at night. There would always be 12 roaches in the ashtray in the morning, nothing more or nothing less, and if there was, it was unusual. I would roll two straight off and puff one after the other just to get back to the stoned level of the night before! I used to hate being stoned if I had to go out in the car as the paranoia used to kick in and be over cautious! I always had the idea I would pack up cigarettes first so I could smoke pot into old age, but ended up doing it the other way round. I had my last fag the day my consultant shone a torch up my arse with a drop-dead nurse standing there, and he told me he could actually see my tumor looking back at him winking 50mm up my anal verge! 29 September 2018! I do feel better for it and had a small tumor removed from my upper left lung in February last year, which was from the rectal tumor that metastasized from my bowel before the tumor was removed, and one from my kidney, which was benign, in October 2020. Tbh, yes, I miss the puff and music, but knowing what I know now, I'm glad I packed everything up when I did as I don't think I would have made it this far but by the grace of God and my good family and friends.

Panko
Jan 07, 2022 2:46 am

Top man, yes you are very rare as my very sexy oncologist, who is frequently in my dreams, told me that out of 1600 patients on her books, I'm only one of three with two man bags. By chance, I met one in February last year when I was having a tumor removed from my upper left lung, which was a met from my bowel. This guy was in the next bed. Good thing I was next to him as he was kicking off that he had run out of urostomy bags. Good thing I had plenty. Shut him up. Then he kicked off again because he wanted a hair dryer to warm them up. That's when I learned that little tip!
I don't know about you, but now that you end up having regular hospital appointments, I get pissed off having to wait. I worry that one of my bags or both will fill up before I see a doctor or whoever. So I tell the receptionist, "I'm carrying two saddle bags. I'm not a terrorist, but can you get me through this queue fast because I don't know if I will piss, shit, or fart everywhere." It usually works, especially if you flash your bags!

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Panko
Jan 07, 2022 2:47 am

Sorry, 16,000 patients!

Toppermost
Jan 08, 2022 3:57 am

Hey Pablo. Here's some bagger confessions! I sort of remember being a kid and my parents telling me about a relative of ours having a shitbag. Totally gross! All these years later and having them myself, it's still gross. I don't think I'll ever stop disliking getting up close and personal with my own crap! Once I thought of how badly I could freak people out by wearing my bags out on a bus/subway, especially a clear bag.

Toppermost
Jan 08, 2022 3:58 am

Spell check gave you a new name, Panko.