Living with a Colostomy: My Journey and Questions

Hi folks - new to the site - but have been living with a permanent colostomy since May 2011 - it's been a hell of a ride. I do have a couple of questions on other people's output when they irrigate, but thought I would start with 'my story'.

Diagnosed with a 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 vengeance, and was found in Jan 2011 and was scheduled for an APR with permanent colostomy 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 abscess 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 pursued 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? Some days 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 around 6:30 am, and I leave for work at 8 am). 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 more physical activity I do, and I find that generally, my level of tolerance for walking really long distances (e.g., more than 2km) is hampered by this.

I hope to be able to share some more with you folks, and offer whatever 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..

Hello Thxguy,
Yje short answer to your questiuons is YES! ----all of the above.
the longer answer is:-

1) I put the varying returns down to what I eat as much how much. This aspect doesn't bother me too much as except that occasionally when not much comes out I get a little residue tryimng to squeeze past the plug by the end of the day. So far this has not posed a problem. My ostomy nurse suggested that I put a little water in to start and then let it out almost immediately. This 'unblocks' the tube so that the water goes further in and flushes the rest out more effectively. - I've been doing this and I think she is right (sometimes).  

2) This late arrival happens when I'm in a hurry and don't spend enough time on the loo (about an hour for me).  It used to be a nuisance when I was irrigating in the morning. However, I switched to irrigating in the evening and I leave the sleeve on all night - having folded it over and sealed it at the top so that it doesn't leak. This way I don't have to worry about 'the last flush'.  Also, I have found that it is in fact quite predictable in that it comes about one hour after irragation. Thus, if I irrigate at anytime before 20:00hhrs, the last flush is over and done with before I go to bed at 22:00hrs. I then rarely ever have any output after that.  Occasionally there are some small hard lumps in the morning   - I put that down the interesting phenomenon that somehow any residue left actually gets the moisture drained out of it overnight.  Irrigation at night also allows me to wallow in the bath in the mornings without a bag/plug etc. or fear of discharge. --A little luxury that I value greatly!

3) The pain in the bum is one of my biggest curses.  I had it before the ostomy when I had a internally prolapsed rectum, so I think it is actually the same problem but without the feaces making it excrutiatingly painful. The surgeon did warn me that it would still be present but he didn't say that the pain would also be present. It is made worse by rectal mucus building up inside. I too cannot walk very far when this is acute but it doesn't bother me too much as the arthritis in my joints is far more painful and so it distreacts me from worrying too much about my bum.  Some people resolve the problem by having a Barbie-bum but the prognosis for this operation has made me rule out this option for now at least.  

I hope this has been of some help.
Best wishes  Bill

Thanks Bill for the feedback.  I should have specified that the APR surgery I had was also what folks 'round here call the barbie butt surgery.  My rectum / anus was completely removed at the same time.  So I think some of what I am feeling down there now is scar tissue, messed up nerves and apparently part of the colon has a tendency to drop into the void where the rectum was....

Hi Thxguy - I've been irrigating for about 3.5 years now right after breakfast every morning.  Sometimes it really gets me down, but then if I have any "late returns" I realize how lucky I am to be able to irrigate.  I wear a New Image mini-pouch from Hollister, never having the confidence to "graduate" to a plug!  My output is pretty consistent - I use 1500 cc water - and since I like fruits and vegetables and bread I have quite a bit of output.  If I spend a day just eating protein foods, not so much.  I have a peri-stomal hernia so sometimes irrigating is frustrating or painful because I have to massage the area to get the output going (but hooray, I'm getting that fixed).  Irrigating can take me 25-40 minutes depending on if I took Immodium for whatever reason the day before.

I'd say from reading your story you are doing very well indeed!     
🔒 Login to see image

i will add a few comments

1: what you get out, will be roughly proportionate to the amount of FIBER you intake and the frequency of your irrigation sessions. try to eat simular things and size meals till you get a basic idea of how many days/hours you can go with little chance of any significant output.

2: late returns...... my system{it may not work for everyone} FAST at least 3-4 hours BEFORE you irrigate.
AFTER you irrigate EAT a light meal , this will get your system primed and will cause any late return to come on out.

3: sensation, there are a lot of nerves in the rectal area, should these suffer damage during surgery, be advised that nerves heal very slowly....it may take a few years for everything to get back to normal.

i am a cancer survivor for 11 years, work daily at a very physical job, and manage quite well. give everything time...learn what works for you.... adapt if things change{and they will}. do not give up. regards. mmsh

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister