Maggyie Posted June 4, 2009 Share Posted June 4, 2009 My sister who posts here as Lilllabettt was discharged from the hospital today (thank you everyone who prayed ) Unfortunately the treatment for colitis that they gave her did not work. She has come home for the time being because as of right now they can't do anything more for her medically. When eventually the dose of medication currently in her bloodstream wears off she will become very ill again (probably next week) and have to go back into the hospital, where they will probably remove her entire large intestine and rectum. It is going to be a very expensive surgery ($100,000+) but the entire cost is going to be absorbed by the generous benefactors of the Cleveland Clinic which is so lucky for our family, you have no idea. She actually will probably have two surgeries to correct her disease but she will just have the first stage for now. Afterward since she no longer has a waste disposal system she will have to use a bag. Although God willing she will only have to use the bag until her second round of surgery, it is going to be a big adjustment for her and our family is trying to figure out how best to make it easier for her. Does anyone here have ulcerative colitis or "the bag"? Or know someone who does? She's actually taking it pretty well so far except for the occasional comment about "I'm so not looking forward to carping into a bag." Link to comment Share on other sites More sharing options...
CatherineM Posted June 4, 2009 Share Posted June 4, 2009 My grandmother had colon cancer, and had a bag for the last several months of her life. She called it going by remote control. The one thing I remember most vividly is that we had to use air freshener right after the bag was changed. She was in a nursing home at the time, and they made us leave the room when they changed it. My grandmother didn't seem to notice. She had to eat a low bulk diet if I remember correctly. Back then, that's been 27 years ago, they didn't "fix it" later. Once you had the bag, you had it for life. I remember my mom making my grandmother some special pants that had like a pouch in the front. I'm sure the bags are probably much different now. I do remember that it is better to change/empty well before it is full to avoid leaks. Link to comment Share on other sites More sharing options...
Marie-Therese Posted June 4, 2009 Share Posted June 4, 2009 Maggie, Bless you and your sister. I'm an RN with extensive experience treating patients with GI disorders, from different types of colitis to cancer, who had to undergo colostomies or jejunostomies that were temporary and permanent. If either of you have any questions about her treatment, please PM me and I'll give you my contact information. I'd be happy to answer any questions you might have. I will pray that her treatments are successful and that God gives her comfort during all this trial. With love, Peyton Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted June 4, 2009 Share Posted June 4, 2009 I don't have any advice or experience with this, just be assured of continued prayers. Link to comment Share on other sites More sharing options...
Archaeology cat Posted June 4, 2009 Share Posted June 4, 2009 My best friend's dad had a bag due to colitis for a few months. He's fine now, as far as I know. Anyway, rest assured that I will pray for Lilllabettt. Link to comment Share on other sites More sharing options...
hoosieranna Posted June 4, 2009 Share Posted June 4, 2009 My grandfather has had one for about 18 years, due to colon cancer. There was an initial transition when he learned to care for it, but it was fairly quick. He and my grandmother had a very active life before the procedure and continued to have an equally active life after he recovered. Prayers. Link to comment Share on other sites More sharing options...
dominicansoul Posted June 4, 2009 Share Posted June 4, 2009 Maggie, I don't have any suggestions for your family. Just know that I am praying for her and for all of you. Rest assured, Lillabett will be absolutely fine. I hear that this temporary situation may take getting used to, but as soon as the second surgery, like you said, God-willing, she'll be back to normal. I have faith and i believe she will do very well through all this. Give her my prayers and hugs! I miss her posts! (here and on her blog...) Link to comment Share on other sites More sharing options...
Hassan Posted June 4, 2009 Share Posted June 4, 2009 [quote name='Maggie' post='1882448' date='Jun 3 2009, 08:42 PM']My sister who posts here as Lilllabettt was discharged from the hospital today (thank you everyone who prayed ) Unfortunately the treatment for colitis that they gave her did not work. She has come home for the time being because as of right now they can't do anything more for her medically. When eventually the dose of medication currently in her bloodstream wears off she will become very ill again (probably next week) and have to go back into the hospital, where they will probably remove her entire large intestine and rectum. It is going to be a very expensive surgery ($100,000+) but the entire cost is going to be absorbed by the generous benefactors of the Cleveland Clinic which is so lucky for our family, you have no idea. She actually will probably have two surgeries to correct her disease but she will just have the first stage for now. Afterward since she no longer has a waste disposal system she will have to use a bag. Although God willing she will only have to use the bag until her second round of surgery, it is going to be a big adjustment for her and our family is trying to figure out how best to make it easier for her. Does anyone here have ulcerative colitis or "the bag"? Or know someone who does? She's actually taking it pretty well so far except for the occasional comment about "I'm so not looking forward to carping into a bag." [/quote] I know nothing about that, but I really am sorry to hear that about your sister. She seems like a truely wonderful human bieng and I've always enjoyed her presence here, and look foreward to her return Link to comment Share on other sites More sharing options...
Lilllabettt Posted June 4, 2009 Share Posted June 4, 2009 Hey look my sister made a thread about my pooping disease! Awesomeness! No I'm not looking forward to pooing in a bag, but oh well, it's not the end of the world. Some people I know are in horror of the idea, but I don't get that. I guess it makes people feel like dating is harder? Aside from the fact that I'm not interested in that at this point, I don't think I'd want to date somebody shallow enough to be put off by a medical procedure anyway. I am working on my ostomy humor, most of which involves ways of getting out of doing stuff: " Can't do that. Too much baggage." "Can't. Don't have the guts to do it." Link to comment Share on other sites More sharing options...
CatherineM Posted June 4, 2009 Share Posted June 4, 2009 At least you seem to be in high spirits. I did the same thing when people talked about how they'd kill themselves rather than be in a wheelchair. Link to comment Share on other sites More sharing options...
MissyP89 Posted June 4, 2009 Share Posted June 4, 2009 "You go girl." "Yes. Yes I do." *hugs* Good luck with everything, both of you! I've been through a few rough surgeries and extensive recoveries before, and a positive attitude really does change everything. You'll be fine! Link to comment Share on other sites More sharing options...
SponsaChristi Posted June 6, 2009 Share Posted June 6, 2009 I´ll pray for you! OK, this one is a better/bigger symbol: Link to comment Share on other sites More sharing options...
Groo the Wanderer Posted June 6, 2009 Share Posted June 6, 2009 For what its worth, my wife had an illiostomy bag for about a year due to Crohn's Disease. I helped her change it and stick on the little gasket thingies. At first its a real pain, probably because it is so alien. After a while it becomes routine and no biggie at all. The biggest thing to remember is to empty it before activity, and to make sure the gasket thingy is sealed well at night before bedtime. Link to comment Share on other sites More sharing options...
Maggyie Posted June 9, 2009 Author Share Posted June 9, 2009 Well, Lillllabettt was re-admitted to the hospital today. She was not doing well at all But this does get us one step closer to solving this problem once and for all. Link to comment Share on other sites More sharing options...
puellapaschalis Posted June 9, 2009 Share Posted June 9, 2009 [quote name='Maggie' post='1887176' date='Jun 9 2009, 08:06 PM']Well, Lillllabettt was re-admitted to the hospital today. She was not doing well at all But this does get us one step closer to solving this problem once and for all. [/quote] Prayers. Link to comment Share on other sites More sharing options...
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