overwhelmed by my colostomy

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New Member

Date Joined Nov 2010
Total Posts : 2
   Posted 11/10/2010 5:32 PM (GMT -6)   
I am new to this site and new to a life with a permanent colostomy.  Mine is a result of colon/rectal cancer.  I had the surgery in June and have gone through both chemo and radiation.  I'm pretty much healed from all of the surgery, which by the way was the worst experience in my life, and still going through a 2nd round of chemo.  I'm managing the cancer part of my diagnosis, but now it's the colostomy that is causing me a lot of anxiety, especially now that I'm trying to get back to a "normal" life.  I hate every aspect of it, the way it looks, the handling of it, the inconvenience, the embarassment, and the fact that you always have to be ready for an "accident". I'm still trying to get the hang of applying the bag correctly.  I've tried everything in the book, but my success seems to be hit or miss.  Sometimes I can keep a bag on for 4-5 days and other times I'm changing it twice a day.  Any words of wisdom or helpful hints would be greatly appreciated.

Regular Member

Date Joined Sep 2010
Total Posts : 91
   Posted 11/10/2010 6:38 PM (GMT -6)   
I am sorry for all that you have gone thru.  I have an ileostomy and I can say from that
view point I know where you are coming from.  I got mine on July 28th.  It was the worst thing I could think of. I went thru depression.  I would not eat.  My family was going crazy.  But I promise you it will get better.  When I first started this I was changing sometimes 3 or 4 times a day.  I was always worried about running out of supplies.  I don't know what happened but I can still tell you to the date when it was but everything just clicked.  I have not had a leak since Sept 9th.  Don't mean that tomorrow I won't have one but I do promise it will get better. 
Did you have any problems before you had your surgery with your colon.

New Member

Date Joined Nov 2010
Total Posts : 2
   Posted 11/10/2010 6:48 PM (GMT -6)   
Thanks for the quick reply. I didn't have any intestinal problems at all. One day I just noticed I had some blood in my stools. Went to the dr, had a colonoscopy and that's when they found the cancer. So, I went from feeling perfectly fine to having chemo/radiation/surgery and the colostomy. It's like, "how did we get here??".

Veteran Member

Date Joined Aug 2008
Total Posts : 5951
   Posted 11/10/2010 8:04 PM (GMT -6)   
     Cj....so sorry you have to go through all this.  I had my total colectomy and perm ileo due to twelve years of suffering with ulcerative proctitis.  My paternal grandmother died from cancer of the rectum and I believe if I didn't have this surgery that would be the path to which I was headed.  If that didn't kill me, all the medications I was on sure would.
     I had my surgery on June 28th.  I had trouble with the Hollister bags but the Coloplast, I find, is much better.  I use the one piece with filter.  I do have irritation under the wafer but my surgeon said to try to keep the same wafer on for five days.  I was changing every other day.
     By the way, my cousin's wife had the same symptoms as you...just a tad of blood in her stool.  The first time she noticed it, she thought...oh hemorrhoids...and paid it no mind.  Six months later, she noticed it again.  That time, my cousin made her have a colonoscopy.  Her cancer was stage 3+ and had already penetrated the colon wall.  That was over eight years ago.  She has periodic tests and...so far, so good.  I do not think she has an ostomy bag though.  Maybe at first she did, but she never spoke about it.
     Good luck and God bless.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/10/2010 8:58 PM (GMT -6)   
i think its easier for someone who has been sick for years and years, like me i was sick for 8 years, to deal with an ostomy, because i had time to come to the conclusion that this would be so much better, and had the years of suffering, but when someone is just blindsided by it, it must be harder.
The most important thing, is to remember you wouldn't be alive without it!
something that helps me, is (and you can laugh cause it's dumb) when i get upset i go look at the crayon markings on my shower. The ones my son made when he had toplay in the bathroom for hours when i was sick and in there. Find somethinng that is very important to you, a family member, an activity, and remember without that ostomy, you wouldn't be here for it!
as for the leaks, what is your system, maybe we can trouble shoot!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Veteran Member

Date Joined Jul 2007
Total Posts : 1956
   Posted 11/11/2010 6:50 AM (GMT -6)   
I had a temporary colostomy for 2 months and had 1 day to prepare myself for it. For 3 weeks I knew I had rectal cancer (1 inch tumor, barely inside) and was going thru a battery of pre-op tests. 2 days prior to my simple, 1 hour "scooping out the tumor, via dilation", a rectal ultrasound was performed. It revealed my tumor was penetrating the third bowel wall tissue, so I ended up having a 5 hour procedure, 7 day hospital stay, creation of a temp ostomy, etc. I had a wonderful ET nurse. I would first recommend you find one and if the one you had assigned to you isn't very sympathetic, find another. Mine actually sat and held my hand one day, while I cried and just cried. She told me that men usually have a harder time dealing with colostomies than women. After she left my hospital room that day, I remember looking down at my stoma (they had me using clear bags in the hospital) and I thought - okay, I've had 2 babies, changed hundreds of very messy diapers, prior to that, babies using cloth diapers when I babysat at a teen, also experienced very heavy periods where I would flood for entire day. So I just said to myself - you can do this! Was it easy? Oh no, I had to call my ET nurse a few times, she was ever so kind. You had to leave your call back number because she was almost always with a patient, but she would call me within an hour or two. I had a sister-in-law who is a nurse who said she'd come over and change my bag, etc. I decided again, that I would do these changes, even if it took me an hour. A few times I messed up, didn't install the bag until the click or something. And off the bag would come. Oh my washer ran a lot back in those days, I'd miss the toilet bowl and I'd be washing the bathroom rug a lot. And my clothes, towels, but if you tell yourself that you will figure this out, you will. I also had a video with detailed instructions, that did help, I watched it a few times.

When it was reversed I thought it wasn't that bad - at all - to have a colostomy. In many ways, my day to day living was different and possibly better than it is now. Yes I can sit on any public toilet and relieve myself but I go all the time now, much more than when I had an ostomy.

Sometimes I wish it hadn't been reversed (but mine was a temporary one, my ET nurse said my stoma would have looked different so it had to be reversed).

I do wish you well. Lean on members here. They are very kind and will help you all they can.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg, twice daily + Probiotic: Renew Life/Ultimate Flora/Critical Care/80 Billion daily

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 11/11/2010 8:22 AM (GMT -6)   
cjigers~welcome to the forum!

You are not alone...there are many who've experienced just what you are going through. Are you on any anxiety medication? If you are, you may want to talk to your doc about adjusting the dose until you get a little further along. If you aren't, you may want to see about getting a prescription. You are grieving for the life that you 'lost' right now and in time it will get easier...but it certainly doesn't feel that way right now!

Have you inquired if you are a candidate for irrigation? Some colostomy patients can 'train' their colon 'to do' with the help of an enema and that way they don't have to wear a pouch:) ask your WOC Nurse if that might work for you.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 11/13/2010 8:16 PM (GMT -6)   
Please visit and read: www.oscartheostomy.blogspot.com


Regular Member

Date Joined Jul 2007
Total Posts : 275
   Posted 11/14/2010 4:12 PM (GMT -6)   

I too had color/rectal cancer and went through all of it too. I had a HUGE amount of anxiety and DID take Ativan for it. It helped a lot. While I STILL am not as accepting as most of these wonderful people here, after four years, things are better. It took me a long time to figure out the right system for me (after quite a few accidents and humiliation) and also had therapy for body imagine issues as mine is permanent too. I learned you can hate it, but figure out how best to live with it... I hope things get better for you but you are not alone.
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.

Regular Member

Date Joined Nov 2010
Total Posts : 61
   Posted 11/16/2010 12:59 AM (GMT -6)   

I too am new to this forum with very similar issues. I was not given an ostomy nurse as I don't have insurance and my surgery was emergency. I have called ConvaTec multiple times and they are very helpful. I don't know what brand of bag you're using but see if they have an 800# that might be helpful. I end up calling ConvaTec once a week or so as I've had my ileostomy now for about 2 months and STILL can't find a system that doesn't leak for me. I'm on a new Active Life system and I'm hoping it will work better as the skin underneath my appliance was getting red and irritated. I wish I had more help for you but just know you're not alone and IF I figure out any great secrets I promise to let you know!

66 mustang guy
New Member

Date Joined Nov 2010
Total Posts : 17
   Posted 11/25/2010 9:07 AM (GMT -6)   
Have you talked to your doctor about irrigation, I had a colostomy for 22 years due to crohns disease and was taught to irrigate at the hospital before I left, this is done by putting about 2 pints of water into your bowell first thing in the morning (this takes about an hour)and allowing your bowel to empty it amounts to giving yourself an enema daily, but believe me this was the way to go once it was over I went all day with no discharge then you repeat the next day, you will have to order supplies for this, I used hollister products, now a ileo guy just since September this year due to my crohns returning.
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