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andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/27/2010 9:29 AM (GMT -6)   
Hi all,
I have had a few problems with my appliances leaking so I went to see my stoma nurse who said I needed a flat base rather than a convexity base plate so she gave me some to try and they worked like a charm. Until this morning I woke up with s@#$ all over me, so straight in the shower I go. I was so annoyed cause it had stuck so well for 2 days then it decided to fall apart on me, Do you think perhaps it may have just needed to be changed on day 2 instead of stretching it for the third day? I dont understand why it would all of a sudden leak. Anyway I cleaned up and then got a phone call from my mum she was distressed cause my dad was struggling to breath (he has pancreatic cancer) and has been going through chemo now for the past 7 weeks and my dad is a stubborn man and didnt want mum to call for an ambulance. So I got there as fast as I could and called for an ambulance straight away as my dad knows better than to argue with me :-). So the paramedics arrived very fast and took him to the ER, only to inform us he now has marks on his lungs which are suspicious and all we can do now is keep him as comfortable as possible. I am also having serious pain around my stoma and have been for some time now so I went to my doc the other day and said since I am such a complex patient with all my illnesses that I would need to go back to my surgeon to see what kind of tests will need to be run to find out whats going on, its possible the crohns may be coming back as I have been getting several mouth ulcers as well.
I got home late tonight to an empty house as I do live alone but tonight was probably one of the hardest nights I have felt. I feel so alone and helpless right now so I decided to come and get some off my chest before I try to get some much needed sleep. I have spent the entire night in tears and really would love a hug right now. I wish there was more they could do for my dad, I hate to see him like this its so hard and I don't want to lose him. He is the best dad anyone could ever ask for, I am putting on the strong front for my mum too as I know how its tearing her apart too and I need to be there for her as well. Anyway thanks for listening and if you could give me your thoughts on my leaking pouch I would appreciate it.
Thanks and take care
Doreen

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 6/27/2010 10:13 AM (GMT -6)   
Try eakin seals. I have been using paste since I got out of the hospital and today when I changed my bag I used an eakin seal instead of paste. And, man, it is sticky plus it is a lot more solid than the stupid paste.
I was also using one piece bags and kept having small leaks and I switched to the two piece new image from Hollister and I love it. I get 6-7 days from the wafer and I change the bags out twice a week.

And about the alone feeling I'm sorta in the same position. I basically sit alone all day because my roommate and my fiancee are at work. And all my other friends have jobs so basically I have nothing to do all day. I'm also dealing with depression despite being "cured" of UC. I'm completely happy that I went though with the surgery. I've been in a depression before the surgery for about 4 months, and it got worse after the surgery. I'm about to see if I make an appointment with my psychiatrist because this isn't the only time I've been in a long depression. I went to see him a couple of years back when my mom noticed I was having very bad depression issues, but I kept lying to the doctor because I didn't want to take anti-depressants.

Also my mom is dealing with fibromyalgia, back problems because she broke her back about 3 years ago, and now the doctor is telling her that she may have skin cancer. She also has had issues with alcoholism and drug abuse :/
I'm the only one that is able to help her where we live, and I keep trying to tell her to move to TN with the rest of our family but she keeps refusing to.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Step one of Jpouch surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Step two of Jpouch surgery - 9/?/2010


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/27/2010 11:43 AM (GMT -6)   
your leak, sometimes they happen, probably just a random occurence, they usally happen at night, and at first or right after changing a system, it takes a while to get it down.

Im so sorry about your dad, thats so scary, i cant say i empathize but i do sympathize. And i'm glad your dad listens to you! Suprisingly my dad is the same with me and my mom, about medical stuff, only, thats the only thing he listens to me about, or electronics.

I def know how it is to feel alone though! After surgery,my husband went back to work, my son was with mygrandma, my mom and sis were in school, my dad was home sometimes, but he isnt much of a visitor, lol. My aunt did come over some, but i had no social life at all, because i had none before surgery. And i couldnt work because of healing and such. My best friend lives in texas, and the other people i am closest too at that timelived in wi, and fl. So it was really hard, even though i had the people here who are awesome and those people to text. After a while, i started workign at the fish camp like 1 day a week, and that helped sooo much! i just kind of made myself get out there.
if you can, get out and volunteer or something, get a job one day a week, track down old friends on fb, just to talk to, that helps some. Or talk to me on fb, i love to talk,lol.
good luck with your dad i will pray for him!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/27/2010 11:44 AM (GMT -6)   
oh and when your removed your wafer, was it hard to remove in some places, or did it just fall off?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/28/2010 1:36 AM (GMT -6)   
Thanks for your input Newshiny cd and summerstorm. I do work in childcare normally do about 4 shifts per week but lately had to cut back as I haven't been feeling great so I do get out amongst people, it would just be nice to have someone at home to chat to but with no partner anymore and kids are all grown I am on my own completely and it is hard. The wafer just fell off summer, it had completely lifted up the top part of the wafer. I use the coloplast 2 piece click system and also use a salts stoma collar which is much easier to use than the eakin seals I have found. Today I have had to make arrangements for pallative care nurses to drop by more regularly to see dad and also get them to come in and take blood each week. So much to do and my 3 sisters are over in Denmark at the moment visiting relatives, I am so glad I didnt go and that I am able to be here for mum and dad right now, but Im not sure if I should call them back home. My head is spinning, they have increased his morphine to help. Anyway thanks again for helping and listening
Doreen

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/28/2010 9:16 AM (GMT -6)   
if i were you i would call them and tell them at least how you are feeling, and say you know this is alot on me, esp with all the otehr stuff thats going on, and i could use some help!
so what you want is a grownup to talk to, lol. I def know that feeling! here with a small child all day, and thats what you have at daycare, its tiring at times.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

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