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ileostomy

mrslacsr's picture
mrslacsr
Posts: 30
Joined: Apr 2002

In January of this year, I was diagnosed with colorectal cancer. I was devastated! I have gone through six weeks of radiation and chemotherapy,I had surgery in which they got it all but I also had to have an ileostomy done. This a permanent thing that I have to live with the rest of my life! I have my moments about dealing with this. Some days are good and some days are bad. It's hard to believe that I have to live with this forever! I am currently undergoing six months of chemo again because they said that some of my lymph nodes tested positive for cancer! I was wondering if anyone is or has gone through this? I am a 36 year old female. I really hope that someone answers this because I have been trying since Feburary to get someone to talk to me about this and I can't seem to get any responses! WHY? I need help just like everyone else in here! Will someone please talk to me?

ron50's picture
ron50
Posts: 1392
Joined: Nov 2001

Hi MRSLACSR,sorry to hear that you had to have an ileostomy,I have a couple of friends with colostomy bags and it is an inconvenience but I guess the upside is that you are still alive. I had dukes"c" with 6 of 13 nodes positive ,your original chemo/rad would have been to shrink the tumour ,this lot is to clean up any micrometastasis that may have escaped thru the lymphatics, If it is any help ,I had a very aggressive cancer but with similar treatment to you ,I am halfway thru year five ,still cancer free!!!!

apjr's picture
apjr
Posts: 2
Joined: Jul 2002

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
Posts: 1
Joined: Aug 2002

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?

hardcase
Posts: 2
Joined: Aug 2002

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

candisoo
Posts: 3
Joined: Aug 2002

Hi, I am 44 years old and was diagnosed with rectal cancer last Oct. I underwent radiation treatments 2x's a day for 5 week with chemo (5FU) for the same amount of time. The chemo was a 24/7 deal with the use of a PICC line and infusion pump. On January 22, 2002 I had surgery. They removed my rectum completely, made me a new one@\! and also removed my ovaries. The radiaion had "fried" them, plus my doc said rectal cancer likes to come back to the ovaries. I awoke with an ileostomy. Luckily my lymphnodes were clear, nothing spread, I am cancer free for now. My tumor was so low in the rectum that they first thought I would have to have a colostomy. But I had enough sphincter muscle left, I guess I was lucky for a change. I wore the Ileo. for 8 weeks. I had the reversal surgery in March. These past months have been filled the loose bowels, diareha, NO control, no urge to have a bm, and now I have developed a stricture at the surgical site. I now have to manually dilate my anus so that it won't close up on me. I am constantly stressed about accidents, leakage, odor, I hate wearing Depends, the are so hot. I have tried citrocel, metamucil, nothing seems to work. The hot flashes started soon after surgery, so now I am also on a hormone patch, it is really helping. I know how awful the ileo. can be, mine broke open a few times, and I could not stand to let my husband see me undressed. Still have issues with intimacy, afraid of losing bowel control at a most inopportune moment! I'll be happy to chat at any time. Good luck to us all.

gg2000
Posts: 7
Joined: Oct 2002

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.

luann
Posts: 1
Joined: Dec 2002

I too have a primary site in colon with met to liver,one lymph node bad,and some lung involvement.Will see the surgeon this week.Im a newcomer to this process;Ive been told to call hospice.So you wanna chat let me know

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