One patient with glioblastoma still alive nine years later
by nvrimgnd on Wed Jun 24, 2009 12:00 AM
I have sort of an urgent concern (since my sister is trying to convince me to go to the hospital immediately)...and I want to try other avenues of reassurance before I head "out the door" once again to yet another appt.
Today I am exactly SIX WEEKS into recovery from the LAR surgery with the "lovely" ileostomy. I've noticed she (I named her "pebbles") has alot of sensitivity when it comes time to shower (indirect spray) and change the barrier. Last week when the visiting nurse came in she had commented that she has never seen a stoma that bleeds like mine and she's not sure that it is normal....Today I HAD to change the barrier myself because she wasn't available. I have done it myself several times and noticed "some" bleeding..but disregarded it as just aggravating the site a little more than usual while cleaning. Each time it seems to get worse and today was pretty bad. I'M WONDERING if ANYONE else has encountered this problem this far into recovery. The bleeding is NOT coming from the "opening" itself...but it seeps around the whole area around the stoma and then pretty much just drips (more like runs) down my leg. I went thru alot of tissue trying to blot it. IS this normal?? It seems to have "clotted" but geez, now I'm freaking out thinking that maybe it's just seeping back into my abdomen now??? Any REASSURANCE/ ADVICE will definitely be appreciated. Thank you so much!!!
by Maryann_S_3 on Thu Jun 25, 2009 12:00 AM
I'm speaking on behalf of my husband, who has a permanent colostomy. He's had it for a year now, and I have to admit his bleeding is not as bad anymore. He has occasional episodes when it becomes irritated, but you have to be gentle when wiping around the stoma. Do use the wipes that are ordered for you as well a Viva papertowels, which are very solft and be sure to wet the wipe before cleaning otherwise you will cause irritation.
Good luck to you and I'm sure it will get better.
by Super01Mom on Thu Jun 25, 2009 12:00 AM
I have had a colostomy for a year now and I have had the same problems, and yes I freaked out too, I thought there was something wrong with me also. I was assured by the ostomy nurse it was nothing and it was because I was making the hole on the waffer too large and it was rubbing around the stoma creating an irritation. I tried different products too to see which one worked best for me, and which one was less irritating. I have sensitive skin and I have problems with different products. The company I use is EdgeParks and they have a large selection and excellent staff. You are the first person I've met who has named their stoma other than me, mine is Rhoda. I don't know your age, I am 46 and I was a Mary Tyler Moore fan, her friend Rhoda was the loud mouth friend who lived in the same apartment. I thought it was a good fit, because she is a loud mouth and obnoxious, just like my stoma. Good luck, try not to worry, we have enough to worry about huh?
by sue_b_5 on Sun Jun 28, 2009 12:00 AM
I know this is 4 days after your question, and probably now you have resolved it. I know how you feel about going out the door for yet another doctor appt., but your nurse would probably tell you if she thought it was something to worry about. I had quite a lot of bleeding from the stoma too, but it didn't really drip, just collected on and around the stoma. It would continue while it was being cleaned. Sometimes mine would bleed into the bag lightly. It is scary, but I seemed to survive and, yes, the nurse assured me it was normal. Especially as we cleaned it during changing as well as around the edge of the barrier ring between changings. Often the top edge of the barrier ring was bloody from continual irritation. We used very soft cotton cloths, but it still bled. Also, mine never totally healed even up to the point of my reversal surgery. It would always be "picky" and felt like the bag was pulling on the top of the stoma. I never named mine, but thought it resembled the creature coming out of the guys chest from the movie "Alien". We all got a good laugh out of that, but then again, I guess my sense of humor may bit a bit on the demented side! Forgive me if I insult anyone. I also get "vegal response" sometimes when seeing blood from my body, so I can relate to freaking out over stome bleeding. Good luck.
by pam51255 on Tue Jul 28, 2009 12:00 AM
by nutsbolts on Sat Feb 25, 2012 04:13 AM
Hii have had a ileostomy for about thirty years now dont get to worked up about the bleeding its normal but if its a lot then go see you doctor or a E.T (DONT ASK ME TO SPELL IT LOL) there nursess that now all about ostomys most doctors dont know to much about ostomys they always refer you to a E.T just remeber you have a peice of your body thar isnt sapossed to be were it is. heres a little trick for you cut the hole for the wafer a little bit bigger then your sapossed to then take some stoma paste and spread it around the rafer a very thin coat ok then apply the wafer as normal it may sting a little thats normal it may help with the bleeding. i hope this works i have a lot of little tricks up my stoma lol so if you need help please email me
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by nutsbolts on Sat Feb 25, 2012 04:15 AM
sorry that email
by Dedra on Thu Aug 30, 2012 09:44 AM
Hi, My dad is loosing lots of blood from the outside of the stoma. He has been in the hospital for 8 days now getting blood transfusions 4 units so far, and is suffering the effects of fluid around the lungs because of that. Please someone help us, he can't live like this. We don't know what to do.
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