Dealing with a fistula

SuzSS

I'm new here and hoping to find someone who has had a similar experience and possibly some suggestions. My 54 year old husband was diagnosed with stage IV colon cancer in early August. It's very advanced. He had a colonstomy and exploratory surgery with biopsies right away. Of course, he's had CAT & PET scans. There is a large mass that essentially has filled his pevis like concrete (surgeon's description) and endangered all the internal organs there, so surgery to remove it is not an option. The cancer has spread to his liver and prostate and there is bladder involvement. He has a fistula, or hole between colon and bladder. This bladder/colon opening is really making his life difficult and so far, the doctors haven't been able to offer any help or even the hope for relief. I searched the forum and didn't find anything along the lines of what I was looking for (perhaps I didn't use the right key words), so I hope this isn't a redundant post.

I'm sorry, but the following will be fairly graphic and not pleasant :-(

At this point (today) his UTI is under control, but that hasn't been easy. The poor man is plagued by the need to urinate ALL THE TIME. Seriously, at least every hour. It wakes him up out of a deep sleep and if he changes position, he has to go. If he even thinks about it, he has to go - and once he has to go, he has to go immediately. He always keeps a urinal on hand at home. Yesterday, we went to oncology to have his chemo pump removed. He went to the bathroom before we left, we drove ten minutes, I dropped him at the door, went to park the car and found him on the sidewalk frustrated that he hadn't been able to get inside before having to go again. Well, that's what Depends are for... Ten minutes into being hooked up to IV fluids, he had to go again. We barely made it to the restroom. He went once more before he was finished with fluids. We went down for a quick bite to eat in the cafeteria. I ran ahead to get the car as we left and once again, found him mortified on the sidewalk. That was 4 times in 2 hours!

Now, I know that sounds bad enough, but it's not really the worst of it. The worst is that there is mucous caused by the cancer that 'wants' to be expelled through his rectum. The ostomy is doing its job, so this pink slime is all there is. Every time he has to urinate, he also has a strong need, actually a compulsion that he can't control, to strain and evacuate this pink slime. So, imagine him straining against his will while he's standing on the sidewalk. I'm worried on so many levels. He's not getting any rest. He won't leave the house. He's ashamed and worn down to the point where he doesn't wear pants at home - just Depends. Keeping him hydrated takes a lot of work.... The fistula cannot be repaired by surgery because of its location and how fragile the tissue is. The urologist doesn't have any ideas. The oncologist prescribed an anti-diarrhea medication and ID has prescribed an anti-spasmotic for the bladder. We'va also tried muscle relaxers. 

Has anyone out there dealt with anything like this or does anyone have any ideas?

Trubrit

Oh dear me!

It sounds like complete Hell. I am so sorry for your husband and for you.

I know there have been folks here with a fistula from colon to vagina, but I think one member, Danker, had a fistula that may possibly have been from colon to bladder. He visits now and again, so keep eye on your post. 

As for the constant need to unrinate or pass rectally, I can somewhat understand. I will tell you my side of the story, but it does not mean, and I am definitely not saying that this is what your husband is experiencing. 

Since my surgery and treatment (chemo and radiation), I am definitely at the stage of 'go and go now'. It was so bad at first, that I could not leave the house, and when I did, I went for a little walk around the block. When I saw the house, I had the uncontrolable urge to have a bowel movement. I ran but did not make it in time. This happened the next day and the next, until I realised that seeing the house actually triggered the urge.  I decided to do an experiment. I went up to a little canyon, and walked. I could run behind a tree when the need arose. Sure enough, found that as soon as I got close to a place where I had gone before, I needed to go.  This was too much of a coincidence. It was actually a psychological response.  I had to train myself over many months, to beat it. It has been four years, and I still stuggle. The urge is real. The bowel and bladder do eliminate, but there is definitely a conditioned response. I don't know the key to stopping it, it has just got a little better. 

Phew! That was rather long-winded. Sorry! 

I'm not saying this is the case with your husband, but its worth observing. 

Again, I am so sorry for his diagnosis. It sounds truly horrific. I hope that you are both able to enjoy life together inspite of all that is going on. It can be all too short for any of us (and I'm not talking just Cancer patients, but everyone). 

I am sure someone will come along soon with advice about the fistula. 

Welcome to the forum, though it is not the place people line up to join. 

Blessings!

Tru     -    P.S. No questin is redundant and nothing is too graphic. Our whole lives now revolve around something that is normally taboo. 

Chriscancerguy

WowSorry you are having so much trouble

Hi Sorry that you are having so much trouble. I also have a fistula, but i am not having the same problem. When I first had my cancer Colon cancer stage 4, I was having a constipation problems extremely painful and took long time to eliminate stool, I was taking stool softeners to help. Doctor started me on radiation and chemotherapy. All was going fine then I started to have real bad constipation this caused me to have a problem urinating. It got so bad my doctors had me have surgery for my colon bag,about the same time I got my fistula , constipation cause the fistula and same thing happened uncontrollable leakage. I figured out if I sat on the toilet and used the same muscles that I use to use to poop I could clear my fistula when I wanted to. Eventually it would clogg up and I had a hard time walking, sitting ect. without pain. I would sit in the tub and soak and  wash area with fishula. Mine in near my anus on side of the **** cheek. I try to keep it flowing but sometimes it stops flowing and I can feel a mass in my ****, so I will try pushing it out with muscle contractions and soaking in the tub. Hope this helps. Cancer realy sucks and everybody has differant reaction to it. Keep up your spirts and be happy you are still around, enjoy everyday, some days are bad and some are better. I hope it gets better for you and I will say some prayers for you and your family. Im still on chemotherapy and just had a break and starting up again, this last session was a bad one was really sick, but you have to do what you have to do to stay alive. Keep up a good fight!! Don't let the **** win without a good fight!!!