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Phantom Rectum Syndrome

Posted by Toppermost

Hello Ostomates 

I recently joined this site and sent out a request to hear from anyone who was double bagged  like me ie. 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 call 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 heroine addicts. It helped, then with a 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

See all blogs by Toppermost
Comments:
Jan 02, 2022
sunflower111 : Sorry you went through that. Happy New Year
Jan 02, 2022
Panko : Hi Dr Topper!
Now you have mentioned this topic I will tell you what sensations I have felt since they took my rectum,anus,semicle vesicles ,prostrate & bladder not to mention your soul literally!
I do get the odd pain down there and pelvic region mainly from the nerve en blocs they done which mainly has affected my right leg to the extent I had to get a left footed accelerator pedal fitted to my
Automatic car as could hardly rotate my foot back or forth or left & right due to neuropathic nerve damage that cost me £500 but worth every penny so I've hung onto it for awhile longer than normal as will have to do the same on any other auto except I did not need to do it on my Moho as it is a different angle.
Any way the phantom poop shoot syndrome reminds me of an old Frank Zappa tune called bobby brown! In all honesty every now & then I get I feeling that I want a dump to normal way as in the gut & bowel movements going on inside but you feel like you are going to pass it out your Chicago star fish & can even feel your ring trying to pukker up to retain it until you have to sit on the throne which is all imaginary inside the imaginer! (Frank Zappa) quote again & his lyrics by the way were very anal! Hope this helps Dr Topper?
Jan 02, 2022
Toppermost : Hey Panko
You and I should be having drinks or weed for every body part we've lost. I lost rectum, urinary bladder, gall bladder, prostate, tailbone, half of sacral vertebrae 2-4. It amazing to lose all those parts and still appear to be a functioning human being. Except of course for the loss of life's greatest pleasures ….that's for another discussion. I also did the left foot accelerator. Have leg neuropathy too. Had to get relicensed for it, but never felt safe so it's mass transit or Uber . As John Lennon sang????And now my life has changed in oh so many ways..???? Panko, seems we share a lot of special experiences. ???? Cheers Toppermost.
Jan 02, 2022
AlexT : 2 peas in a pod. ????
Jan 02, 2022
Panko : I almost forgot about the weed! I used to puff from about 15years old in early 80s but gave it all up at 35! I loved to get stoned & a few beers & listen to music mainly reggae which I grew up with & have collected since I was 12 years old I have quite a large vinyl & 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 & beer is when you take the weed out of the equation the music does not sound the same especially reggae dub old Skool & roots music?? I used to puff only after 6pm that was my golden rule as if I puffed in the day like many friends do & did I would get fxxk all done but made up for it at night & always would be 12 roaches in the ashtray in the morning nothing more or nothing less & if there was it was unusual? I would roll two straight off & puff one after the other just to get back to the stoned level of the night before! Used to hate being stoned if I had to go out in the car as the paras used to kick in & be over cautious! Always had the idea I would pack up cigarettes first so I could smoke pot into an 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 & he told me he could actually see my tumour looking back at him winking 50mm up my anal verge! 29 September 2018! I do feel better for it & had a small tumour removed from my upper left lung in February last year which was from the rectal tumour which metastasised from my bowel before the tumour was removed & one from my kidney which was benign in October 2020. Tbh yes I miss the puff & music but knowing what I know now I'm glad I packed every thing up when I did as I don't think I would of made it this far but by the grace of God & my good family & friends.
Jan 02, 2022
Panko : One more thing I forgot (chemo brain) I started looking & trying CBD oils to sleep better but after about 10 trial of different brands found a real potent on with full spectrum & 2400mg in a 30ml bottle made by Provacan in Israel it is more expensive at £120 but with a voucher 30/40% off at Xmas you can get it for around £70 ! I take a few drops & I'm out for the count & have not slept like that for years so I know when I've run out! A 30ml bottle would last about a month but worth it as sleeper don't do it for me nowadays & natural I probably buy a bottle every other month. Spose I should try it before bed with a bit of Bob Marley playing a large brandy & port & not forget to connect my night bag!
Jan 03, 2022
Toppermost : Panko, I am laughing at your winking tumour story, especially cuz I had a similar comical shock when I was informed of my tumour. My GP doc refers me to a local hospital cancer clinic. I go into the office of a drop dead Doctor who is dressed like she's going out dancing. She asks me to sit in chair, turns in her computer and points to. white area on my spine the size of a large orange. I kid you not, these are her exact words…”””we have to figure out what the fuck this thing is!” A cancer dr. Doesn't know what this is. WTF! THAT's when I realized how special I am .
Jah Bless!
Jan 06, 2022
Panko : Top Man, yes your are very rare as my very sexy oncologist who is frequently in my dreams told me 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 tumour removed from my upper left lung which was a met from my bowel & this guy was in next bed & good job I was next to him as he was kicking off that he had run out of Urostomy bags good job I had plenty & shut him up then he kicked off again cos 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 you end up having regular hospital appointments I get pissed off having to wait & worry 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 & im not a terrorist but can you get me through this que fast because I don't know if I will piss,shit or fart every where, it usually works especially if you flash your bags!
Jan 06, 2022
Panko : Sorry 16000 Patients!
Jan 07, 2022
Toppermost : 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.
Jan 07, 2022
Toppermost : Spell check gave you a new name Panko


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