Hi All! Oh gosh, you guys made me cry! Joyful tears, but tears nonetheless because I know no one understands like the people on this forum. a few questions I'll try to answer in reverse order:
Praying & Pouchman: This is one of those things they NEVER told me (the docs) prior to surgery. My ET nurse told me when she came to do my bag change then put me in touch with a life-er (25 years and holding colostomate). With a colostomy, because it is using your large intestine you get more formed stool. Keep tht in mind. With the ileostomy you have more liquid stool, it's like well-chewed food as opposed to soft stool you get with colostomy. Well, I was informed that once my initial healing completes I will be able to use irrigation tool and essentially give my stoma an enema into a bag. The awesome thing is that if done consistently (somewhere between every other and every day at the same time - you establish your routine and your body follows it) then you clean out your colon. There is nothing to come out, leak, or otherwise move into a bag, thus the lack of need for one. Instead you wear a stoma cap (I saw them in the medical supply book and could never figure out what the heck they were for, they look like mini swim caps - how weird?!) but the Stoma cap is tiny - convatec has one that is curved, Hollister's is flat. FYI, I prefer hollister products cause they fit the shape of my body better (flat stomach and Hollister's stick'em bit is square and takes up less space on my abdomen). Since the colon is the last place your food goes before elimination with or without an ostomy, once it is empty, it's empty. Nothing to pass. So my new 25-year ostomate friend and ET nurse AND my surgeon said it's totally regular to only use bags to travel (flying etc.) or when having stomach upset etc. but not on a day-to-day basis. I can get and give more details in the future, my new friend was very forthcoming and we plan to lunch soon. It's funny how they don't tell you the stuff you consider imporant (the stuff dealing with vanity is important as the health relief). TMI alert: I found having sex easy enough with the bag, for my own peace of mind I usually wore the opaqe bags (that took some learning since you can't see if you get your whole stoma in, I found a few times (more often than not) that I didnt. No leakage, just dug into my stoma a little, which I couldn't feel since there aren't any nerve endings. But a stoma cap...whole new vistas of self-confidence bloom in front of me!
Thanks Richard!!!! I've used this group to support myself and educate myself, I'm pleased and surprised to be "giving back" just with my little message. So happy though because this group has been my sanity and I've learned how to be an informed patient who could really talk to her surgeon instead of feeling powerless and as though everything was just happening to me. So, really, thank all of you.
Prayer (again): Colostomy stoma is slightly larger than ileostomy stoma. Two different parts of the body - illie is small intestine and narrower, colostomy is large instestine and wider by maybe a half-centimetere at this (very, very early point). I should note that my ileostomy started out MUCH bigger than my colostomy is starting out. so I don't know what that means. Another thing with the irrigation to live bag-free, it's basically an enema for your upper colon (My Colostomy is upper colon, not lower). I asked if it hurt because I am no fan of enemas and my surgeon laughed and said "not at all." that was confirmed by ET nurse (who is also ostomate) and my new friend. It just prompts the stool to flow out of an inverted cone you've stuck in the stoma opening (which you can't feel) and the stool flows into an attached baggie. Dispose and you're done.
I like the colostomy because it's more permanent, though I know people get permanent ileostomies and I talked to my surgeon about it, and I had no problem with my ileostomy, it came down to what my body would handle the best. Since i've had so many surgeries this summer there was scar tissue to consider. Also the operation was being done laprascopically and they had to be careful of my ureters, which were damaged in an earlier surgery. Finally, because of 45 lb. weight loss before my ileostomy, nutrition was a major factor. My surgeon wanted me to get more from my food, which means it needed to stay in my body longer.
When they "marked" me for the ostomy we chose three possible sites: #1 was my original ileostomy (i was willing to stick with the familiar), but it was on my right side and I sleep on my right side and found that an annnoying transistion and sometimes caused me to wake up at night, adjust my bag and turn on my back. My second site choice was same spot on the other left of my belly button for the colostomy. Much more convenient for sleeping purposes and general movement since I'm right-hand dominant and clumsy. The final spot was lower left for colostomy and I hoped they would not have to use that because it was more in line with the top line of my pubic hair and that was going to be a fashion disaster (I didn't know at that time about irrigating and living without the bags).
Oh yeah, the stoma caps have charcoal tablets in them for gas, too. I forgot to mention that before.
Pouchman, what were your issues with the external placement? I've heard others say they had problems, too and a lot of it seemed centered around placement. I have a friend with a j-pouch (she's amazing, she has lupus, cancer and so much joy she makes you want to go bungy-jumping or something) and she said she wouldn't agree to an ostomy unless they did the j-pouch because psychologically it was too difficult to imagine her body with the external appliance. I could totally understand. I guess I was fortunate in that within 24 hours of getting my Ileostomy, I had an ET nurse come in and she was downright wacky (she had about 1000 pet names for stomas, it was so weird) and so compassionate and she got me more interested in the function of my ostomy than the physical aspect, then when she showed me how small my stoma would get (it ended up a 1/4 inch in diameter) I was much more willing to see wha the benefits were even though I was moritifed beyond belief.
It also helped that when I got my ileostomy I was fitted with a super-pubic catheter due to a neurogenic bladder. It was a 1/2 door long bit of rigid plastic sewn into my pubis. It hurt worse than the ileostomy or anything I'd had before or since. Now I self-catheterize a few times a day and having my ostomy on the left side makes that a lot easier since I'm a righty.
Peggy, it really is night and day. My 90-days without an ostomy left me so weak that my surgeon told my family if he hadn't operated when he did I may have not been able to tolerate the operation and ended up hemorraghing again or worse. I mean, I just had surgery, major surgery, and I'm sooooo happy. the pain is nothing compared to an impacted colon. NOTHING. I am eating chicken and rice soup and crackers, drinkig gatoraide and typing on my computer. Before my surgery i was on my stomach on the cold bathroom floor, drinking tap water and constantly cleaning my bum as acidic stool oozed out.
My percoset is requesting that I take a nap. Please if I promptedmore questions, feel free to ask and I'll do my best to answer. Knowledge is power and in such a major decision, the more knowledge you have the better prepared you are to move foward and LIVE! LIVE! LIVE!