UOAA Discussion Board

Hoping I will be able to hear from ostomates who may have found themselves in the same situation.

Have dealt with FI for over 20 years, and have finally hit that brick wall and decided that I can No longer deal with this on my own. My GI has prescribed bulking agents, laxatives, food monitoring diets, pelvic floor therapy, and has put me through testing determining that (based upon how badly I failed the anal manometry and expulsion test) I require surgical intervention. Some of the lesser invasive procedures have been ruled out because of poor results over time. I have been told that sacral nerve stimulation, or a colostomy are probably my only options at this point; neither of which I had hoped to address. Initially my physician was Not fond of the InterStim system, but knew that I was aware of its use. He has referred me to a surgeon for a consult, but upon researching the system I am finding more complications, revision surgeries and unsatisfied patients that are suffering from the results of the procedure, short and long term. I'm Not wanting to go through a minimum of 2 surgical procedures, only to discover that this option was the wrong choice and be faced with surgery 3 for removal.

Is there anyone who has elected colostomy surgery when crohn's or ulcerative colitis were not the underlying cause for their incontinence? I know dealing with a stoma has its pitfalls as well, and is a really BIG Step. I am just So, so tired of living my day to day life. I have become extremely withdrawn and try to isolate in the safety of my own home. I can't see my grandkids at sporting events, entertain friends, and most importantly, this isn't fair to my husband (who has been so understanding)! He suffers.... at my expense. Thank You

Wilma , have messaged you as this is exactly what I had ,
Lola.x

I had rectal cancer in 2006; post-surgical scarring made pooping problematic, AND a fistula was causing recurring infections.
An elective reversible colostomy took care of the pooping, but didn't resolve the infections. Further surgery ended the infections, but made the ostomy permanent and caused new problems.

Doctors present what usually happens after a procedure as the results you'll get, but if it doesn't work out that way, they can only suggest more procedures which might not work out either, until they run out of ideas, and you're stuck with what's left.

So maybe you'll be thrilled with the results, or maybe you're starting down a slippery slope.

Hi Wilma,
Sorry that you have dealt with FI for such a long time and you are right - your decision going forward is a really big deal. Having had both interstim (anal stimulator) surgery and a colostomy in the last few years, not as a result of the underlying causes that you mention, I would be glad to share my experiences and what I have learned. I had radiation damage from cancer treatment. In fact, this is my first post here, and as a result, I found out that I could not personally message you, to answer any questions you might have. So, if you are able, feel free to send me a message. I believe I have had quite an education in this area and want to help others like yourself. You are wise to take your tome and gather as much info as you can before moving forward. I had no clue where to look for information when faced with decisions and would have gone about this differently. Hope that I can help you.

I have been a partial paraplegic since 1972 with worsening neurogenic bowel as the years wore on. In 2009 I had an elective colostomy. My only regret is that I waited so long. My colostomy has made me continent again. It’s a big decision and I’ve had some bumps in the road since 2009 but I would do the same thing now. Interestingly, for both paraplegics and quadriplegics, the landscape is changing and most spinal cord injury rehab facilities in the US will discuss the option of a colostomy during the initial rehab.

Good Luck,

Linda