Diagnosed with rectal tumor that was non cancerous back in 2009- had a surgery to remove the large tumor (trans-anal excision) which was successful, but after the pain and healing of that surgery, the tumor came back with a vengance, and was found Jan 2011 and was scheduled for an APR with permenant colstomy in May 2011. Had neoadjuvant Chemo / Radiation in the spring prior to the surgery.
The surgery went well, but the healing was a total pain- both literally and figuratively. I think I went back to work too soon - it took months to heal, and that whole process was delayed by some packing being left in by nursing care folks. This bloomed into a nasty infection with fever and set me into the hospital for a couple of days. Slowly resumed healing after that.
Once I felt life was getting kind of normal again (this past summer; almost a year later) - I developed an abcess that required further 're-opening' to drain and pack. This also took months to heal. Suffice it to say it has been a rough couple of years of late.
During the APR surgery part of the coccyx (my tailbone) was removed to keep the margins clear; and I have had pretty consistent pain here for the past year and a half. The nerve damage from this has had me on gabapentin (1200mg / day) since the surgery. Quite frankly this pain does not seem like it is ever going to go away.
In trying to maintain a somewhat normal life- I have persued irrigation. I have been doing irrigation (1000cc every 48 hours) with some success for almost a year. I do have a couple of general questions I was hoping some of you could comment on...
1. Irrigation- when doing this do you find that the 'returns' i.e. how much material comes back out varies wildly? Somedays it seems like I have hit the stoma lottery, and others just some nasty water coming back out.
2. Late Returns - frequently I will get a little "surprise" late return when in the car on the way to work, or at my office (irrigation starts aroud 6:30am, and I leave for work @ 8am). Do any of you get this on a regular basis? It makes me question if I can ever stop using a regular bag
3. Sensation - I constantly have a 'packed' and somewhat painful, numb feeling in the area where my rectum used to be. Any of you also feel this? It gets worse with the more physical activity I do, and I find that generally my level of tolerance of walking really long distances (e.g. more than 2km) is hampered my this.
I hope to be able to share some more with you folks, and offer what ever I can in terms of experience to others in the coming years- this is my opening post- so I do want to say a heartfelt hello to all... Cheers..