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Life after Ileostomy

slpam
Posts: 1
Joined: Oct 2011

Hi. I was wondering if there are *any* success stories of life being somewhat "normal" after having an ileostomy? I haven't read much on any kind of happiness, just all scary stories of how miserable people are. I'm a 37 yr old female, diagnosed with Rectal Cancer in May 2010. Chemo 4 months, Radiation in February 11, surgery April '11, more Chemo June-Sept '11. I had the tumor removed as well as most of my rectum. A J-Pouch was made and the ileostomy, of course. I've gotten quite used to the bag and have had virtually no problems with it. Now there's talk of reversal. I'm afraid of the reversal because I haven't read more than ONE success story! Any suggestions?? Thanks! ~Pam

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

Success with my husband, who got a temp ilieostomy 12/08, reversal didn't come until 2 years later, and he has said his bowels haven't worked this good in years....(IV CC) Don't get me wrong, there are still issues with the runs and constipation, with all the surgeries and chemo, but nothing that isn't manageable.

I don't know if having a J pouch complicates things or not. Talk with your surgeon.

Best of luck to you!
Angela

John23
Posts: 1832
Joined: Jan 2007

Hi Pam!

Please take some time to visit the "United Ostomy Associations of America"
discussion board. There's a wealth of experience and information
there, that can provide you with as much support for having an
ostomy as there is here for cancer.

I don't know where you're reading all those "scary stories", but
those that are having major problems with a "life-style" change,
would likely have a major problem just "getting old".

At first, having an ostomy can be disturbing; Why wouldn't it be?

It takes about 6 months for a stoma to "settle down" and allow
pouching systems to remain leak-free for longer periods of time.
But... it does matter how well the stoma was formed, and it's
location on your body. Some of us have been lucky, and some
of have not been so lucky with the initial placement and surgical
forming of the stoma. You should understand, that nothing in life
is all rosy all the time, and likewise, everything in life can be dealt
with, if one has some patience and willingness to succeed.

Sure, it's a lifestyle change, and yes it does affect your naked
appearance, but fully clothed? No-one knows I have two
Ileostomies unless I've told them. Since 2006 (my initial Ileo),
there weren't too many people in my life that had any knowledge
of my Ileostomy. That is how much it -isn't- noticeable when dressed.

There are ways to cover the appliance while "naked", if you're
concerned about sex, etc... So don't fear any loss of attraction
from anyone; and especially from those that care about -you-.

It takes some time to adjust to the "new you", and once you are
"adjusted", you'll wonder why the hell you worried in the first place.

And Pam...

Re:
"I had the tumor removed as well as most of my rectum. A J-Pouch
was made and the ileostomy, of course. I've gotten quite used to the
bag and have had virtually no problems with it. Now there's talk of
reversal. I'm afraid of the reversal because I haven't read more than
ONE success story! "

Oh, there's plenty of successful "reversals", and for the first six months
I had demanded to be reversed. Looking back, I'm glad the surgeons refused
to do it. My initial Ileostomy was said to be "temporary", even though
it was a closed-end Ileo. I would have to have the full open surgery it
took to give me the ostomy, to do the "reversal".

If you've lost too much large intestine (I lost 4 of 5 feet), the remaining
large intestine will not be able to remove enough liquid, providing a
permanent diarrhea type of condition. Now that they took 1/2 my small
intestines due to surgery to remove blockages, the output is near total
liquid, and continual 24/7/365. Having an ostomy keeps me out of the
toilet long enough to enjoy life.

The sad side of rectal cancer that I've noticed over the years, is those
that -did not- have the rectum and all associated "parts" removed, do
not fare as well as those that have a total removal. Most individuals
are so frightened of losing the rectum, anus, etc.. that they place
themselves in more peril for their perceived vanity. Having a "Barbie-Butt"
is an awful lot less traumatic, than finding continual recurrences from
rectal cancer. Having to wear a pouch, is absolutely nothing, compared
to the years of anticipation and anxiety associated with recurrence.

I had colon cancer, and all other parts remain, along with that lousy
one foot of large intestine. If I had rectal cancer, I would have insisted
on total removal.

Don't fear the ostomy! Try welcoming it as your insurance of longer
and less worrisome life!

Take a trip to that UOAA website; you'll enjoy the company!

Think "healthy".

Best wishes,

John

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

who had a temporary ostomies for colon and anal cancers. Both had reversals, and both are living normal lives, tho it took some time after the reversals.

Neither is on this board (as far as I know.) Both went to MSKCC, where I go, but I knew both of them independently of their cancers. And life happily goes on....

Alice

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I had chemo/ radiation to shrink the rectal tumor, then a temp ileo in 10/09, more chemo, then the reversal 10/10.
The first couple months were difficult--no doubt about it. But time and patience, and retraining the body to recognize the new signals to 'go'---have worked. It's been a year now and I can pretty much eat and drink w/e I want. However, I do have some trigger foods, like red wine and chocolate, that I can only have at home since they have a laxative effect for me. And sometimes I will take an Immodium before going out to eat as a sort of insurance policy.
I had the reversal, and for me it was worth it. If you decide to do it, I and others can help you with some tips for the beginning months.
Your friend in California~

*****Wanted to update this after giving it some thought last night. The learning curve is difficult and it takes about a yr to really settle down. In the beginning I had 6 bad days, and 1 good one...now that ratio is reversed. However that one bad night can be a doozy and keeps me up and down to the bathroom for long stretches of time, esp. since now my rectum is about 2" long compared to the average 6". There is not a whole lot of storage area left so....end up frequently in the bthrm. However, to me it was/is still worth it. Cancer took so much away from me (including reproductive body parts) that I wanted to at least try the reversal.

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

I had a temp ileo, a takedown to the jpouch and suffered all kinds of horrors. My takedown just was not successful, but now I have a permanent ileo and life is good again (aside from being unemployed, owing 20k in taxes and losing the house - but hey, if you don't have your health, you don't have a thing). As John said, go to the UOAA site. Plenty of success stories there.

khl8
Posts: 809
Joined: Nov 2009

I am one of the sucess stories, sure once in awhile if I eat something wrong, I may go alot on one day. But other than that, I have a normal life, I work, play and just enjoy life. I have not felt better! Pm me if you need more information.

Kathy

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