Considering a Permanent Ostomy Due to Chronic Pain and Diarrhea

Seven years ago, I had a temporary ostomy. I am considering electing to have a permanent ostomy due to relentless rectal/anal pain from severe diarrhea. The stool is so acidic that the skin stays very irritated with fissures. The only barrier paste that helped is out of stock. I take Colestid, fiber, and about 18 Imodium daily and still have 10-12 movements a day. I am so tired of constant burning and pain. Any pros, cons, or suggestions would be appreciated. It's a big decision I'm facing. Thanks.

Hello Kimy

I have done exactly what you are thinking. You will have to decide for yourself if this is best for you. It was the best thing for me. What do you recall of your time with an ileo? You have the advantage of having tried both to help make your decisions.

Axl

Hello Kimy.

Thanks for sharing your thoughts with us and inviting our responses.

As has already been said, ultimately the decision is yours and we can only share what we felt was right for us at the time.

I went for years suffering with unbearable anal pain and incontinence, yet was still reluctant to opt for a permanent stoma. Eventually, I found a doctor who diagnosed correctly that I had an internal prolapse, which was unlikely to rectify itself, no matter how much I ‘wished’ that to happen.

At first, I opted for a procedure to sew the colon to somewhere near the spine, which didn’t last very long before it prolapsed again. I tried electric sphincter control which was an absolute failure. This led me to reappraise the whole approach and decided to go for a stoma. 
My main motivations were the potential for pain relief, alongside the possibility of ‘managing’ my anal incontinence in a more effective and less messy way.

Since having the stoma, both these criteria have been met, so any time I begin to have doubts, I remind myself of what it was like before and what it is like now in comparison. My thoughts are that if I had to make the decision again I would go for the stoma every time and would have done it sooner if only I had hindsight.

I got by (as I usually do), by writing my feelings (as they happened) in verse, and I will share with you my very first rhyme on the subject (below).

If this rhyme resonates with you, then there are many more of my rhymes in the collections section.

I hope this helps you to make the ’right’ decision for you on this delicate subject.

Best wishes

Bill  

FIRST OSTOMY.

I must admit I had a scare
the first time that I saw it there.
I can’t remember what I said
about this thing so crimson red.

Some thoughts were flashing through my mind
about how fate had been unkind.
Most of all I thought “Why me!”
that had to have this ostomy.

What in the world had I done wrong
that to this thing, I’d now belong?
This thing that stuck out from my tum
replacing my malfunctioning bum. 

Right now I only speak for me
when talking of my ostomy.
They told me I would benefit
but I began to doubt that bit.

To tell the truth, I won’t pretend
I thought that this would be the end.
I thought the active life I’d led
was now gone, forever dead.

There was no way that I could swim
with what looked like an extra limb.
There’s nothing anyone could say
to keep these type of thoughts at bay.

The negatives exaggerated
as my mood degenerated.
It seemed that I had lost control
of my body and my soul.

But now I’ve had this ‘thing’ a while
I can look back and I can smile.
For now I’m doing so much more
and I’m  more active than before.

                                                B. Withers  2012

                   (In: My Ostomy World Trilogy 2014)

Hi Kimy,

Wow, that's a big decision you're contemplating... leaving a world you don't like for one which could be better... or worse. My advice to you would be to do all your homework now, not later. That means you need to get intimate with your doctors and understand the pros and cons associated with what you're contemplating. That means talking to more than just the doctors you're talking to now. You need multiple opinions on your present condition, possible treatments, and the long-term prognosis. Then you need to understand the things that can go wrong with being an ostomate. Then only you can weigh the pluses and minuses and the probabilities and make a decision.

So if I were you... the first thing I'd do is make sure I investigated all the possible solutions for your current problem. I'd talk to doctors at the biggest and best hospitals (i.e., Mayo Clinic and Cleveland Clinic) to make sure I've tried every treatment available, and check what's happening in limited trials. If there's nothing left to try and nothing on the horizon to help your current condition... I'd ask them for their recommendations on how to proceed.

If becoming an ostomate rises to the top of the list... I'd start doing my research on that. The first part of that is finding out from your doctors just what kind of ostomy you'll be considering. Sounds like a colostomy for you, but that's a pretty broad term, and the more colon they remove the more your life will change as an ostomate. So find out exactly what parts of the colon they'll be removing, and what that will mean to you. Once you know that you can ask people on here in the same situation about their issues, regrets, etc., as the rest of our experiences being an ostomate are irrelevant to you.

Whatever you do... don't leave it up to a coin toss to get an ostomy or not... or base your decision on a couple of opinions on forums like this one. It's way too big a decision, with lifelong implications... and none of us are you. So take the time and do your homework. Then you'll know you made the best decision and not have any regrets, no matter where that decision takes you.

;O)