anyone had a colostomy due to endometrosis?

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Tigergirl10
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 11/1/2010 10:13 AM (GMT -6)   
I know most on here is on this forum due to chrones or colitis. this is my story.  I am 34 years old and right before Labor Day weekend, I started running to bathroom like every 20 min.  to pass blood and mucas.  was having some mild cramping/nausea but nothing severe.  ignored my symptoms and went on to Pensacola, Florida to enjoy my labor day weekend. had problems the whole time there, but nothing severe.  but when I got home made a drs appt with the gastronolist.  he immediatly ordered a colonscopy.  esp since my grandma died of colon cancer.
 
I got extremly sick from the prep. projectile vomiting from drinking the mirilax and severe cramping. went ahead with the test, woke up from the anthesia, he told me my colon was nearly completly blocked.  he couldn't finish it.  thought it was chrones disease. it didn't really register in my head. and I was severely sick still, vomiting bile, rushing to the bathroom every 5 min.  screaming in pain.  they wanted to admit me.  I begged my mom to take me home, it was just from the test, would be better in a few hours.  at 3 a.m. pain was so severe thought I was going to die.  my mom rushed me to ER. 
 
they admitted me to the hospital.  on the xrays, it looked like tumors on my colon and intestines.  they told me it was likely cancer and it alreadly spread to my lymp nodes.  cried thinking I was going to die.  for 3 days they treated me with antibotics, to see if it would clear the blockage. for 3 days, thought I had something that was going to kill me.  I got worse instead of better. finally they rushed me to emergency surgery, colon was almost completly blocked and my intestines were shutting down.  this was Sept 13th.  it ended up being severe endometrosis.  the worse the dr has ever seen.  he also had to remove my left ovary.  and I woke up with a temp colostomy.  he removed 13 inches of my colon.  it was so ulcerated.  I have to have the colostomy bag for 6 months. reversal date should be mid March at earliest.  I been devestated, it has taken a huge emotional toll on me.  I am now on the lupron depot shot to treat my endo.  to save my right ovary.  just need some emotional support.  having to wear a bag has taken a great deal of my self esteem.  and feel so ugly and gross because of it.  me and my now fiance (he proposed just 2 days ago) we haven't had any intimacy since my surgery.  trying my hardest to survive til March.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 11/1/2010 5:43 PM (GMT -6)   
I'm so sorry to hear of your troubles. I know how you feel though. Many people on this forum chose to have their ostomies after years of struggling with disease. They knew what was coming and had time to mentally prepare (even though with that I'm sure it's still hard to deal with)

Like you, my colostomy was not a choice, it was an emergency. My colon perforated while I was in the hospital from UC and there was no other choice except removal. It's hard to go from one day thinking "ok I'll get over this and go home soon" to the next day waking up with part of your intestines sticking out. I cried the first time I saw my ostomy. I cried every day for 3 weeks after I had my surgery, especially when I first started having leaking problems, and I still cry sometimes when i think about it too much.

I get mad too, mostly because my stoma is right smack dab in the middle of my belly and the majority of my clothes don't cover it very well, you can see the outline of the bag very clearly since I liked to wear fitted clothes. with some shirts you can even see my scar since my skin is so pale in comparison. My mom made me feel better about this by taking me shopping to find clothes I'd be comfortable in. Nothing like a shopping spree! So that's what I've been trying to do to deal with the emotional upheaval; find ways to fix what's bother me. It's been getting better and it'll get better for you too. Keep reminding yourself that it's only temporary whenever it gets you down.

When you feel ugly and gross, think about your fiance, hey he proposed while you had the bag! Obviously he still thinks you're beautiful, and I'm sure you are! having the bag doesn't change who you are, it only changes the way you poop, and let's face it, that's never pretty =P if I had a boyfriend i know i'd try these heart bag covers they are pricey, but you might be able to fashion something yourself. There's also these covers which are cheaper and come in a variety of styles. Maybe if it doesn't look like a medical bag you won't feel so self conscious.

You are not alone; emotional troubles are common with any type of surgery, especially ostomy surgery. But it gets better, just keep moving forward, one day at a time. *hugs*

and hey, i had my surgery on the same day as you, we can be surgery buddies :)
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/2/2010 6:02 AM (GMT -6)   
Tigergirl10~welcome to the forum! You've had quite an adventure, haven't you?!

My first ostomy was unexpected and emergency surgery which is very challenging, right? I have since made mine permanent, but that's another story!!

Since you have a colostomy, have you looked into irrigation? That may be something you could do...it's where you give yourself an enema through your stoma, go to the bathroom, then you can use a stoma cap (which is very low profile). It's kind of like 'training' your intestines when you want them to go!!

Would you be interested in attending a support group? The United Ostomy Assoc of America has a great web site: www.uoaa.org that lists support groups all over the USA. Talking to someone in person might really help. Either way, you've found a great place here to voice your concerns!

You could conceal your pouch with a 'tube top' of sorts...The maternity Bella Bands work great and Target has the less expensive brand. You just have to get a smaller size and it will hold everything in place and it even works great with intimacy!

A stoma doesn't define who you are (and your FIANCE can see that, too)...this is just a bump in the road and a new way of 'going' for a few months! Before you know it you'll have your reversal:)
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Tigergirl10
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 11/2/2010 9:29 AM (GMT -6)   
They didn't give me a choice about irrigation. sometimes my stoma will be dormant almost all day. but it always wants to end up being active at the worse times. like a few days ago at my family's Halloween party. of course there was lots of food and my stoma was going crazy. and I had to keep going in the restroom to empty. it was such a pain because there was only one restroom and a long line of people waiting. I finally ended up leaving the party early almost in tears.

I decided not to become intimate til my reversal surgery in mid March. I know it hasn't been easy on my fiance but he isn't going to force me. we just been holding hands and kissing. and I know mid March will come soon enough. of course it will prob be April before we can again because of having to heal from the surgery.

I don't have a support group around but feel I really don't need one since my reversal is in only 4 and half months. actually my fiance's mom has a permanent one due to cancer. she has been living with it for 15 years. she has been a big support to me but I don't get to see her in person often. because she lives 2 hours away.

Post Edited (Tigergirl10) : 11/2/2010 9:32:39 AM (GMT-6)

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