UOAA Discussion Board

Hello everyone, I haven’t been here for along time. My 3year Ostomy Birthday was in February. It has taken me time to mental adjust to my ileostomy and I had my first one 6 years ago. I do not have IBD but a colon that was not good I think from birth. Fast foward my issue was a Inertia Colonic slow mobility colon with pelvic floor dysfunction. My mind and body were constantly under trauma just trying to have a bowl movement. Basically my colon never functioned right. So I did everything I could to no avail. I tried everything. I was the queen of constipation.
Ok so here I am 4 colon surgeries later : 3 years with my ostomy I’ve made strides a little at a time to finally come to peace with my “Rosebud” . Over the last month or so I’ve immersed myself in Ostomy wealth of information watching YouTube, instagram connecting with some people following stories etc. This has moved me into a new peace with my new body. I can finally say I love my Ostomy/Rosebud.
Today I took a jacuzzi tub bath the first time in over 3 years. I thought I’d died and gone to heaven! Oh I did that today. I’ve also explored a new pouch change which is working so wonderfully. Just the pouch.
The tub bath was also to help with my rectum being painful after a enema and scope done on Tuesday. This whole think literally made me sick all over. It was horrible. My rectum and inside my body didn’t handle “stirring up “ that area very well. My gosh I felt sick. The PA felt due to all the trauma I’ve had there for so many years that having the area not touched in 3 years did not help me.
So in 5 years I have to have another rectal scope but I’m not doing a enema. Just warm tap water. Ok I know those whole story is very long but I felt I could totally share with all you beautiful Ostomates.
Thank you all for being here I will be checking back etc. God Bless , Nan

Thank You Nan for sharing your story.
We all are in that boat and yes it can take a long time to accept what we all deal with, every story helps someone else so we do not feel so alone.
Unless someone has a Ostomy they really are clueless what we go through, when times are smooth i'm great but when i'm dealing with troubles what i have seems overwhelming at times..
I'm thinking before i'm done i'm going to have to have my lg intestine removed and get a ileostomy and i not wanting that, no irrigating and lots of liquid output , Grrrr sounds awful but my colon just don't know how to poop and things are getting really slow.. I hear you on baths and hot tubs, anything like that is so not taken for grant now.. God Bless You as well, Sassie

Nann:
I absolutely remember you and am tickled to hear that life with your ostomy finds you in a better place of well-being.

Adjusting and adapting to an ostomy takes time. It is an individual process that spans several months, encompassing physical, psychological, and spiritual healing.

Your update will be valuable for individuals with pelvic floor dysfunction and/or a new ostomy who may be struggling with fears of what lies ahead. Your post will provide light to see a meaningful life.

I received my ostomy in 2012 and still consider myself to be learning and changing. I like to source new ostomy products to try. I have adopted a kinder approach to my self-care. Pedicures are a regular treat to myself. I find it easier to focus to what truly matters in life and to swat away the constant interruptions of 24-7 news and iPhone feeds. My ostomy gave me clarity in ways that I would not have had otherwise.

It is always nice to see a forum member providing an update. There is a single thread that connects this forum, past and current members. No one ever has to re-join this forum. Every member will always find a place of belonging.

Continued best wishes in life,
Karen

Thanks so much for posting, Nan-55.

Sounds as though we're both sort of in the same boat or rowing side by side. I FINALLY had an ileostomy last Nov 1. After other surgeries -- 1976 partial sphinterotomy of involuntary anal muscle (useless but still done, esp for babies); MACE procedure, colostomy, hernia, abscess, more. It's been quite a ride. Maybe we should co-author a book or blog!

(I'm actually serious. Several folks have pelvic floor disorder or ineffective muscle control -- not just women. More on that later but why did NIH move pelvic floor dysfunction to the Eunice Shriver National Institute of Child Health and Child Development Institute which largely focuses on women and OUT of NIDDK which focuses on digestive disorders and funding for those disorders -- like Crohn's, diverticulitis, GERD, Celiac, etc. several years ago? See https://www.niddk.nih.gov/health-inform ... ve-disease) Politics? Funding? Reality? Yes, this should be a new discussion subject!)

I'm doing much better after the fall and winter. Developed a post-surgical wound in January that taught patience and had TONS of support from this fabulous group. Thinking of going to the August conference mainly to see exhibits and learn more re ileo products but seem to have a good handle on that now thanks to terrific posts here and new appliances. Still struggling with much output and taking more Immodium than ever. (Karen/Button advises more patience which truly is helpful. Maybe it just will take time.)

I'm glad and hope surgery is behind me. (Had rectum removed, too, and more.) If you need advice or support re your anal canal, glad to offer. I'm VERY glad I had mine removed when I got the ileostomy. No more diversion colitis -- a relief!

Wonderful to read your grateful post. GOOD LUCK and keep rowing!

Diane C.

1976 Partial lateral sphincterotomy due to pelvic floor disorder + non-relaxing anal/puberactalis muscles resulting in chronic constipation/distention
1980s Treatment with galvanic stimulation, biofeedback, botox, Medtronics temporary sacral implant, meditation, many diets, and more.
2000 Malone Appendiceal Colon Enema (MACE) irrigation tube
2002 Colostomy; irrigated thru MACE
2015 Surgery to repair sigmoid abscess, hernia, more.
2018 Ileostomy; Removal of colostomy, hernia, MACE tube and rectum/anus due to diversion colitis

Thank you everyone for your uplifting posts and encouragement. I’ll be posting more as I trot along into new 2019 goals