ileostomy

I am sorry to hear of your case. I had a similar circumstance but I have a colostomy as they did not have to take as much as my colon. I know what you are going through, and I can not tell you if it is worse for me as a man, or you as a woman, but from what you say, it seems just as bad for both of us. I have had to seek therapy to try to deal with this. I too am devastated that I am stuck with this for the rest of my life. I know what you mean about some days being good and others being bad. Same here. I am almost finished with my six months of chemo, and that too has been a challenge. I just got CT-scanned again to see if there is any recurrance. Have not gotten the results. This is all new to me and this site is new to me as well. Hope you are doing better and seek therapy if you can. It has helped me. Good luck.

karenchiro said:

Hi, I was dx'd June 6th with rectal adenocarcinoma stage III, surgery followed June 17. I have an ileostomy, I'm 54 years old, I am a chiropractor. I had Ulcerative Colitis for 25 years prior to this Dx. Surgery revealed 8 out of 29 lymph nodes were involved. I will start chemo in a week, followed by radiation, a six month course of treatment. I am use to the bag, it really isn't all that bad after years of colitis!. The worst part of all this is the disabling of my bladder sphincter as a result of damage to the nerves during the removal of my rectum and colon. I am currently self-catheterizing several times a day and night. Infection is a real and ongoing issue, (mainlining straight cranberry has been a thought instead of antibiotics daily). I was tested by a Uro/Gyno, he confirmed a Dx of denervation of the bladder nerves. Nerves regenerate at a rate of 1mm per week. He said it will take at least 5 months before the nerves will regrow, if they do, before I will get that normal "urge to Pee" and be able to respond by relaxing my sphinter. Can anyone imagine standing in a public stall with a mirror trying to find that tiny opening? Well, you get used to it. If my bladder nerves don't repair before radiation, they will probably take longer. If they never repair, say 10 months out. My Uro/Gyno has proposed a "pacemaker" style implant into the sacral area to stimulate "afferent" messages to my brain, to tell it to tell the sphincter to release urine. "Bionic Bladder Woman"!
So, hello out there! Anyone having a similar bladder issue? Anyone have a favorite type of ostomy appliance, or tips on what works best for swimming and high activity stuff?

I missed the the bag by about an inch so I don't know everything you are going thru but if this is a comfort you are not alone. Since having the surgery and starting 5FU and Luekovoren, I cannot sling a dead cat without finding another survivor. The watch word is you "get to live". You were dealt a lousy hand but you are still in the game so find and take back your life. Make sure you have some nice percocets and find someone get you some marijuana for the nauea and find something you would miss if you didnt survive. Carpe Diem really has meaning for those looking mortality in the face. Good Luck to us all.

hardcase

I wish that I had registered to this site sonner.... I feel your frustration, and can understand it COMPLETELY. In December of 2000, I was diagnosed with Stage II Colorectal cancer. I went through 5 weeks of 5FU chemo, concurrent with radiation therapy... then went through a bowell resectioning where they removed my rectum and sigmoid colon. They then brought my descending colon down & made me a new rectum, but while that was healing I had to have a temporary ileostomy. Although I only had this ileostomy for 2 1/2 months, it was very difficult for me to deal with both mentally & literally.

I had a terrible time with yeast infections around the stoma and every time I had to change my flange, well.... it always took me over an hour from start to finish because either I wasn't fast enough, or organized enough, or both.

It did get easier with time and I did eventually get faster, but I always worried that I smelled. Even though my friends said that I didn't, I worried.

The entire time, I only had one really bad experience... I was at the home of a friend of a friend when I patted my bag & it was full. Earlier in the evening, I had a cocktail, or two, and was a little loopy. Just after removing the clip, the bag slipped out of my hand & SPLOOSH!!! All over their white rug, white shower curtain, white door, and white cabinets!!! Needless to say, I was mortified. Today, I can laugh about it, but that night I wanted to crawl under a rug, (not the one I spilled my bag on though)!!!

Before all of my surgeries, I spoke to a nurse that had a permanent ileostomy and she said something that always stuck with me...

"It's YOUR body, and you do what you have to do."

With that thought, every time I got grossed out at the smell, or the stoma (it looked like an alien on my tummy, the way it would move around!!), I just remembered what she said to me & I could deal with it easier...

As for me, I am female and am now 43 yr old, living in the St. Louis vicinity. Been cancer free for 1 yr, 7 months. Would love to chat more with you.