Do you get support?

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Miss UK
Regular Member

Date Joined Oct 2007
Total Posts : 128
   Posted 1/13/2009 5:20 AM (GMT -6)   
I hope you don't mind me having a moan but I am so alone on this.  I know I'm lucky and I won't have to deal with my illeostomy for much longer (if all goes ok) but waking up from surgery with it was a big surprise.  My mums first words to me when I asked her not to tell everyone, was not to be so stupid.  Then when I asked her for a bit of support she told me thats what the stoma nurse is for.  I keep explaining to her what I have (a loop illeostomy) she keeps telling me I have a colostomy and then getting angry with me when I explain my situation yet again.  It's almost like I'm just her topic of conversation for her friends and she doesn't even have the right info as she's not listening, she's like this about my Crohns desease too just doesn't want to know
I'm a single mum and find it hard dealing with leaks etc. with a toddler and up to two weeks ago couldn't really get out in the car.  My mum just doesn't understand I can't run around visiting all the time as being out is a fearfull thing to me where I spend all my time thinking 'is it leaking'.
On a brighter note I saw the stoma nurse who insists she's not letting me go till we have sorted my leak problems and I'm talking changing sometimes up to 3 times a day! I now am using the convec pouch with a ring and touch wood things have been going great so far :-)
Do you all get support? do you feel you need support?

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 1/13/2009 10:01 AM (GMT -6)   
I am sorry that your mom is not more understanding, I think our mom's are twins separated by the Atlantic Ocean! I could write a novel about how unhelpful my family was at the time of my surgeries, believe me my surgery was a big imposition on them. I did not get help or support from them and managed by way of the stoma nurse and the grace of those online who had walked in my steps previously. Things will improve for you but it will take time. I think you have learned where you can expect to get help and where you will never be able to get help from. You might also see if you can meet fellow ostomates. Ask your stoma nurse if she knows of any ostomy meetings in your area.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Miss UK
Regular Member

Date Joined Oct 2007
Total Posts : 128
   Posted 1/13/2009 4:25 PM (GMT -6)   
Thanks Sueabear it's good to know I'm not alone although obviously I wouldn't want it to be like this for anyone else.  It would be really good to have a friend who understands the horrors of leaks and stuff to sound off to then have a laugh about it I wish I had met someone in the hospital but everyone in with me had different problems.  I've just got to be a big girl and do it alone I'm just hurt because I can't imagine ever treating my son like this no matter how old he is.

Regular Member

Date Joined Dec 2008
Total Posts : 21
   Posted 1/14/2009 11:23 AM (GMT -6)   
you are definitely not alone. how is your leaking? is it around the seal? or the bag itself? or does it get too full and pop off?  i've all these things happen. i would wake up during the night and have to get a shower,change bed linens, washing laundry. not fun to be woke up so rudely by accidents. i have even sweat mine off a couple times. i make sure though that i do very minimal sweating when it's hot outside. i don't go out when it's that hot anymore.

27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!

Regular Member

Date Joined Dec 2008
Total Posts : 147
   Posted 1/14/2009 2:30 PM (GMT -6)   
you know, I think alot of people assume it is a colostomy, maybe they have just heard of that and not the ileostomy, I wouldnt get mad I think it might just be the best way she can handle it right now, mine also is a loop ileostomy, but I think I'll have mine forever sad
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.

If you want to know more, just ask me!

Miss UK
Regular Member

Date Joined Oct 2007
Total Posts : 128
   Posted 1/14/2009 6:06 PM (GMT -6)   

Provolunteer, it was seeping out under the ring I was using then I tried paste and that was disasterous it would itch from the moment it got put on and believe me I spent ages putting it on with all the advice I got from here but would leak within hours of putting on.  However I saw the nurse last week and she gave me loads of different pouches to try and things got even worse until I tried the convex and touch wood I've had no leaks in days! amazing she says to try without the ring but I'm so fed up of leaks and this is working I'l try that another day I'm still changing every other day which is a long time for me but I'm going to aim for longer now so very pleased about that :-)    No chance of sweating it off here it never gets warm enough haha.  I so hope your problems sort out it's soul destroying isn't it.  I have to say I actually wouldn't mind having this ostomy if it wasn't for the leaking but then easy for me to say hopefully soon it should be gone.

Pepperann27 life can be so cruel and looking at your write up I see you have gone through so much.  I so hope you can have yours reversed it seems to me it's about time life gave you a break I wish everyone on here could get a break there's just too much suffering yet it's amazing how cheerful everyone seems to be.

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 1/15/2009 6:51 AM (GMT -6)   
I think a lot of it has to do with being thankful to be alive. :-)

Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 1/15/2009 12:34 PM (GMT -6)   
Miss UK--glad things are working out...convexity is wonderful! We are hear to listen...

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 1/16/2009 7:37 PM (GMT -6)   

Convexity, and then Eakin Seals,  solved a mysterious leak problem that just popped it's ugly head up for me, after having my ileostomy for many years.  Don't know why, just happened for me.  I was frustrated and turned to this forum and found my answers!  We are here to talk, listen, and empathize each other.  Don't you feel better posting your questions, issues and actually getting responses saying, "Oh, that's me too" or "yes, I've been it those shoes".  "Try this", "try that", etc.  It makes me feel like I have this extended family that I can turn to when NO one else GETS it. 

So, the real question for you, how's your wear time with the new appliance?????

Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

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