So this is a new thing with my pouch. Before I knew it was full by putting so much pressure on my bladder or just feeling heavy. My new thing is... it feels just like it did when I had a colon. the OH CRAP I HAVE TO RUN TO THE BATHROOM TO POOP! The bad lower back pain, chills, pressure on a rectum. You know, the way it felt to have to go real bad with a colon.

Drives me nuts since I can't go that way anymore.
Original Post
Ha! Those nerve endings must of woken up after all this time. Weird though that it would actually coincide with a full k-pouch. Maybe the general fullness in your abdomen puts pressure in the rectal area still and stimulates those nerves.

A shame though. You'd think that at least you'd be forever free of that sense of urgency... Hopefully, it is like phantom limb syndrome and will fade with time. I know itseems strange to appear this long after surgery, but it can take up to a year for nerve trauma to resolve.

Jan Smiler
I got it the first few weeks out of the hospital...accompanied by the adrenalin rush, cold sweats and fear...until my brain kicked in and told my body that it was impossible, that I had a k pouch and that nothing could come out of there (well the first 4 months they had not done the proctocolectomy yet so I was leaking gunk...But still...). After a while it went away...the only times that it came back for a longer period of time was when I had the tumour down there which put pressure on the nerves or with cysts and PMS...once that part of my life was over the nerve reaction disappeared.

Sharon
Yea since I am 2 months away from being 2 years post op I am not in that beginning stage Sharon. I guess this is either a new normal or who knows. When it is full it is when I run to the bathroom. I wish I could push it all out like I had a colon :-/ Still waiting for some magic 3 D printed colon like they did recently with kidneys! (I wish)
Your brain might be rewiring its reactions to a full pouch...being that you have suffered so much with the c-diff and other pouch/valve problems...it is sending you urgent 'nerve' messages to go, run, empty...? Could they maybe do some biofeedback on you (or you could do it on yourself?)...whenever you get the 'reaction' you talk your brain down from it...
Not sure if it is just a reaction to all of the stress that you have been through or a new normal for you but I sincerly hope that it is a temporary 'bad spell' and that it leaves you alone very soon.
Sharon
Hi Vanessa

Just saw your post. I am also having this feeling of wanting to release from the closed rectum. It comes with low back pain also. I am having many problems this year with obstruction. My kock pouch is 8 years old and this new thing just started several months ago. It is very unnerving I hope it stops for you and me too. I assumed the pouch is touching where the rectum is closed off and causing the weird feeling of having to poop from a place that is closed. Yuk I know let me know if it is still going on
Jeanne
There is also another possibility that we often forget because we are closed up down there...an abscess. It could be a sterile abscess or cyst or something else that is growing where it shouldn't.
It can cause a feeling of heaviness, like something is in there (in fact it is!) and wants to get out!
An ultrasound can often find it easier than any other study. I had 2 tumours 5 and 8 inches in the 'Cul de sac de Douglas', the area behind the rectum in the bottom curve of the spine (sacrum coxys (sp?)). This was 10yrs post pouch creation and by the time we found them (no one was looking down there!) they were huge and adhesed on the spine. My first hint was the feeling of 'having to go'. In my case they were inoperable and I had to go through a lot of intense Chemo to get rid of them. I was very lucky. But since I had a long history with displasia they were not surprised.
It is worth looking into to make sure that there are no unfriendly visitors growing down there.
Sharon

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