overwhelmed by my colostomy

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.

     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.

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.

Please visit and read: www.oscartheostomy.blogspot.com

-Allie

cjigers,

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!