Pat, for some reason I have not been able to reply to your pm. I cut and pasted the "return to address" near the bottom but it wouldn't go through. My computer is out of service so I'm using another one here and using my web-mail. Maybe that has something to do with it? And darn, it was a long one too! My stoma scarring seems to have stabalzed. I'm still using the coloplast (ex-Mentor)14 french. In fact, they seem to have stopped making the stiff ones because the ones I received this month are the same item number but are like the softer ones they made.Still squirting and gushing. The sub-lingual Symax pills that are supposed to calm my colon bladder aren't working but my dosage was just increased this week. No new infections. I've learned how to get more urine out of some pockets it may have been hiding in and am using a more sterile irrigation system. I'm going to post a question about that.
Melodie, hi. My stoma bleeds occasionally, spotting like yours, and I had no idea why it was having a bad day. Now I can check what I previously ate or drank. I didn't know alchohol affected your urine (dehydrating). I just thought that it liked champagne and hated urine. I'm looking into getting a product for bed-wetters. It has a tiny sensor I can put in my Poise pad that will vibrate (I won't use the alarm) a clip on receiver when there is any moisture. With that maybe I can get to a restroom before the heavy/fast leakage starts. I finally found a product that really gets rid of urine odors. It breaks down the enzymes that soap and water can't do and can be used as a pre-wash. Learning all sorts of things I had no idea that I would have to learn or find. I irrigate a lot also and I think I'll start measuring my output. Hope everyone is doing really well! Kathy
Pat is right on about that...10 people could have 10 different responses to what irriate their bladders...I love fruits and yet too much citrus tends to cause my stoma to bleed...spotting I call it because it doesn't amount to much but enough to let me know she's not happy with me...still I indulge in fruits and cheese, etc...I have to get my nourishment from some source...I just do more irrigating than would otherwise. I'm a strong believer in drinking lots of water and irrigating. Last time I was in, my doctor asked how many cc's do I empty in a day...I feel sure it's 2000 or possibly more...I drink a lot and my kidneys seem to process a lot, yet I'm able to sleep 6-8 hours at night. Keep us informed of your progress. Hoping things turn around for you soon as I know how annoying that unexpected leaking can be. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Thanks again everyone! This is the first time I have "communicated" with anyone else with BC. I should have registered when I was first diagnosed. It's been pretty lonely.
Pat, I printed out the stomal stenosis "revision" surgery info and will take it to my Dr. The surgery he had proposed was to take the intestinal limb, bring it out of the stoma, fold it back like a sock, and then I guess suture it. He talked w/ a Dr. from SK at the AUA conference just before the revision and he told my Dr. of a new procedure that involved a inserting a catheter with a ballon which would show exactly where to cut. He and I were both very disappointed that it didn't work.
I love your bi-polar colon! I think mine has ADD. I guess all colons are a little retarded, otherwise they could catch on faster that they are now a bladder. Lately I have been irrigating almost every time I cath (which is often) to keep the mucous problem at bay. What's a parastomal hernia?
Melodie, you said something that has changed my whole outlook. I was told that recovery time was 6 to 8 weeks. That may have been possible for me when I was 30 but I'm 61. Also,my fibromyalgia and chronic fatigue syndrome don't help my energy levels. Anyway, I thought I should be up and jogging by week 8 and it sure didn't happen. I have also been depressed since I came home from the hospital because my husband of 24 years died instantly of a heart attack last June on a business trip to Jamaica. I had to put my grieving on hold late last August when I found out I had BC. (I hadn't even been able to get the death certificates from Jamaica yet!) We had our own busines which I can't carry on because he was the architect and, as he would tell people, I did everything else. I have some sales work that I can do but don't have the drive. I have been beating myself up because I get so tired, am so non- productive and feel guilty that I don't feel as positive as other people who are just happy to be alive. Compared to the loss of my spouse, I've really kind of viewed cancer as a big pain in the butt interfering with my life. I'll stop trying to rush (that patience thing again) and hope by the time seven months post op comes around, I will feel like getting out there, positive and peppy, making sales calls. You have made me feel like it's OK for me to relax for awhile now and I'm just going to trust that my financial needs will be met. OK, now I'll stop complaining!
Joe, I didn't know about this scar tissue problem before either. My Dr. was familiar with it and the procedure he had done before had worked for other patients. For some reason, I just produce a lot of scar tissue. I had a hysterectomy and an intestinal resection about 20 years ago. When they opened me up to began the RC, they couldn't see anything but scar tissue and it added 1.5 hours to my surgery to cut out the scar tissue.
I haven't heard or read about anyone else ever squirting either. It's really powerful and weird. In a peeing contest I might place for distance! My body never seems to do things normally. Morphine doesn't phase me, in fact it keeps me awake. They switched me to Dilaudid (sp? synthetic heroin) and I was still awake and in a lot of pain. I had mild irritable bowel syndrome before the RC. Maybe it has kicked into overdrive. I'll start a new post to see if anyone else who has had RC had IBS. I have a valve that was between the small and large intestine that is now between my pouch and the limb that goes to my abdomen. Ileocal valve? Something like that. My Dr. said it's working correctly.
I heard a lot about stoma nurses but have never seen one. I really don't think there is a nurse outside of the hospitals in Tulsa who has ever worked with anyone who has an Indiana pouch. There was supposed to be one at my pre-admission testing.
There was supposed to be a visiting home nurse after RC. I was told they would train me. I called several home nursing services and no one knew how to care for an Indiana pouch.When I found out I was going to be discharged from the hospital the next day I was going to have the nurses show me how to irrigate. One shift I had a nurse from the Oncology floor who asked me to show her how to do it. The next shift was a part time nurse. God bless the evening shift nurse who came back after her shift to take some time working with me. The local American Cancer Society referred me to the Ostomy support group. They don't have any members with an Indiana pouch or neo-bladder.
Gee, long post. I'm worn out and think I'll go to bed on my couch (I can't sleep in my bed until I become "potty" trained.)Throws are a lot easier to wash than queen size bedding! I know. I tried it 3 times.Two nights dry and the third I wet the top sheet and comforter, not the bottom pad. Weird body!
Its called stenosis...happens sometimes.....
Stomal complications include stenosis and parastomal hernias. The risk of stomal stenosis may be reduced by attaching a triangle of abdominal skin to the stomal edge to prevent contracture