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New Member having trouble  


Joined: 1 year  ago
Posts: 1066
November 17, 2017 8:08 am  

Hi All, Have just seen a post from a new member called Dee Dee, who is only 7 weeks since surgery and feels very uncertain/afraid of changing the pouch. also has mentioned about wearing sweat pants all the time. Firstly hello Dee Dee to Vegan Ostomy. on wearing sweat pants I see no problem with that they are comfortable post surgery clothing and we all have done that. with time and healing you will soon be back in your normal wardrobe. Changing the appliance at the start is always scary but only having confidence when the nurse does it your not giving yourself a chance. That's not meant to sound hard but you can really do this ! yes mistakes will be made but keep doing it yourself. If it fails think what I may be that's caused the fail, ask the nurse, look up Erics posts some great blogs/vids on the subject. Vegan Ostomy is your instruction manual for a new life so open the page pick the heading best suited to the question and information will be given. The very best to you Dee Dee you can do this.

ileostomy 31st August 1994 for Crohns

Zvitusk, Barbara, Robert and 1 people liked
Joined: 1 year  ago
Posts: 656
November 17, 2017 12:15 pm  

Hi Dee Dee

Welcome to the group . It can be rough for awhile at first but you will get it . Maybe when the nurse comes you could have them let you change it while she or he coaches you threw it . I know they only helped me once in the hospital then the nurse at home coached me threw it . Hands on sometimes is the best way . And yes like John said look at Eric's pages he has a lot of good info in here . And you can you can always get input on these pages also . Just stick with it you will get it .....

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis

Zvitusk and john68 liked
Joined: 12 months  ago
Posts: 436
November 17, 2017 1:26 pm  

Hi Dee Dee. Welcome from me too. Glad you found us it's best place to be. I am about 11 months post-op and I too was one of those who had one instruction lesson in the hospital and came home not knowing at all what to do. I was also very afraid to touch things cuz I was going to mess it up. And then I haveint rheumatoid arthritis that affects my hands and makes me clumsy.  I thought I was never going to get this. But then the visiting ostomy nurse came and she taught me what to do. She had me do it with her so that I understood it. She found ways to work around issues with my hands and once she had me fitted with the right appliances and stuff things just have improved immensely from that.  I'm now at the point where I don't even think about it a whole lot. When I'm out with my friends and things  I don't think about the fact that I've got the pouch. Also the advice to look at all of Eric's videos is great.  There's a bunch of them out there and I learned a ton from them and I think you will too. You'll get used to this and Life Will Go On and you'll get to the point where you don't even worry about it anymore.  You can do it!

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!

Robert and john68 liked
Joined: 1 year  ago
Posts: 79
November 17, 2017 5:18 pm  

Hi DeeDee,

Welcome! It is great that you found this site. Eric and this site helped me tremendously.  I was you.  At seven weeks out I was still not getting it, I was depending on my daughter to change the appliance, what a horrible feeling that was! Not to mention the lack of sleep and lack of feeling of independence.  Everyone here told me it would get easier and they were right.

It might take a while to learn what works for you.  I watched a lot of videos then kept a running list if questions for my ostomy nurse. After a while it worked for me and I have no doubt it'll work for you too :-)

feel free to vent or ask questions here.

john68 and Robert liked
Joined: 1 year  ago
Posts: 391
November 19, 2017 9:06 pm  


I'm going on 3 years.  Only positive thing is that YOU'RE going to get it.

I went through 6 or 7  different types of stoma systems since my surgery.  Each change was due to my losing my fear . fear of embarrassment,  fear of inconvenience,  fear of nonconforming,  fear of fear.

I just sampled the Coloplast Mio. Of all the previous types of wafers and bags, this seems to be almost perfect. Now.

The glue sticks. The bag holds. The filter works ( after a fashion ). I don't need tape to "make sure " that it doesn't detach.  It works for me, now.

My point is that 1. your need is going to change over time, 2. your fears will change and even fade over time, 3. MANURE HAPPENS. 


Have you heard any good jokes lately. Any bad ones. Share with us. 

Joined: 1 year  ago
Posts: 1440
November 20, 2017 4:18 pm  

Bango-I too got hit hard with O.C and pretty much bleed to death as well?  No need to go into that on this.. that is what the siginture or about me is for.. right??  check my member siginture--  I just woke up with my pouch over 4 months later.. surprise huh?  How r u doing now?  I was a mental mess for 2 years...... Wish I had this blog back then- 3 years now..  starting to get out more with friends etc. besides my infusions all week- but that Is part of my life -- I lived in Palm Beach Gardens Fl. years back.. Christmas didn't seem to be the same down there.. back in Ct.  I found the mio one piece is nice and the 2 piece coloplast double lock works for me.. (skin issues) I really don't want to loose the pouch..  I use Byram for my supplies orders.  They seem to have very thing or can get them special order without extra charge-I let them do the work for me.. Try them.......... good luck! M.


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..



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