The long-awaited verdict: I have to get an ileostomy...

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ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/22/2007 2:01 PM (GMT -7)   
Well, I guess I can change my username now from "Considering" to "Getting"...

Just met with my surgeon today, and he basically said that my colon is shot---about 50% of my colon is strictured due to scar tissue from having Crohn's for 12 years (I am 26 now). I have recently been having a lot of stomach pains when I eat, off and on, due to the stricturing.

The only choices I have: live with the pain (which can be managed a bit by eating lots of liquids and not a lot of actual solid food) OR have an ileostomy.

They told me that I should have this done in the next year at least.

I was hoping and hoping that they could just give me a resection, but I don't have enough "good" colon left for that.

My biggest questions/concerns:

1.) It seems like many of you ladies say that you cannot wear your normal clothes afterward. I keep picturing myself in high-waisted pants or elastic waist pants and shudder. Not being able to wear normal clothes would be horrible, and make the after surgery adjustment even harder.

2.) What about sex? Do you wear something to cover the bag during sex? If so, what? If so, does your partner find it weird/distracting/a turn off? I have a fiance who is very supportive of me, and says we will get through this, but I know the adjustment period could be very trying...

3.) How often do you have to empty? I am a teacher, and literally cannot just run to the bathroom whenever I want--Usually, twice per day is the most I can even get to the bathroom! Would this be enough to empty the bag sufficiently?

4.) Has anyone had a child after having their ileostomy? We really want children, but I was hoping we could have them before I would be forced to get an ileostomy...What were your experience like?

I seriously cannot believe this is happening to me. I know it is 99% attitude, and I have read SO many posts like this one, but when it is You, it is different.... I know I can get through this if I have to, but why me and why now?

Any input on the questions above would be greatly appreciated. This seems like such a helpful and supportive environment...it cheers me up just to read the posts. :)

:-) :-) :-) :-)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/22/2007 5:07 PM (GMT -7)   
Considering,

You are making the right decision to live a healthy life without disease and pain. A good attitude and support from loved ones is so important, and you've got both, so you're going to do great!

Here are some answers to your questions:

1.) Clothing: I wear low waisted pants and tank tops. Most of my clothes are from Old Navy, the Gap, and Banana Republic, so I'm able to wear all of the latest styles with no problem. You can ask your surgeon to place your stoma down low.

2.) Sex: is great!! I wear a stoma cap during intimate times. They are flesh colored, so you don't even know it's there.

3.) Emptying: I empty first thing in the morning, again before I leave for work, once during the day at work, and once or twice at night, so two bathroom breaks during the day will be sufficient.

4.) Pregnancy: A lot of people have successful pregnancies with ileostomies, so that will not be a problem.

Any idea when your surgery will be? Keep us posted and please ask any questions you may have.
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/22/2007 5:25 PM (GMT -7)   
Considering...

You sound just like me 2 months ago.

1. I have not changed my my clothes at all. With that being said, my pants are tighter on me now after the surgery because I have gained about 5 pounds and my waist now has a bag on it. There are pictures of me 2 and 3 weeks post surgery at photobucket.com. Look under the heading PHOTOBUCKET in this forum to locate the username and password.

2. Sex is still sore for me. I find it to be a little painful because I am still healing inside. I wear Hollister 2-pc appliance. When ever my hubby and I want some time to ourselves, I unclip my regular size bag and attach a mini bag. Then I put on my crotchless panties and tuck the bag under my pants. I keep my panties on the whole time. Also, I cut the middle part out of some of my regular but sexy panties to save money.

3. Emptying is very individual. I do not have Crohn's Disease. I have a slow motility disorder. My body and bag more slow and therefore, I do not have to empty that much.

4. I cannot answer this one. However, because I would like the option of having another baby in the future. My Dr assures me that I can!!

To be honest...I did NOT want a bag. I thought the stoma was the ugliest thing ever and the bag grossed me out! Now, 11 weeks later, I would not give up my bag! I still do not like having a bag somedays....like when I am on a run and my bag fills up and I am 3 miles from home. But, I can run again and that is all that matters to me!!

Good Luck to you!! I commend you for considering a bag..it is not an easy decision to make. However, once you have the bag, you will regret that you did not get it sooner. :o)
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/22/2007 6:03 PM (GMT -7)   
Thank you both very much for the replies--they brought tears to my eyes (the good kind!) when I read them.

You both seem very happy and have good relationships with your husbands. That is one of my biggest concerns (how things might change afterward in our relationship), but both your ideas about what to do when being intimate are great, and seem to be things that I can live with/actually picture doing.

I am also glad to hear that you can wear nice clothes (sounds so silly and vain, but I feel like if I have to dress different, people will know something is up). And I do not plan on telling Anyone except my closest relatives, and very few friends. I don't want to be known as the lady with the bag; I am sure you can relate to that feeling...

Cecelia, I am not sure when I am going to have my surgery...the ball is in my court at this point. I definitely plan on waiting at least 7 months, until the school year is over.

I keep going back and forth like, "this is Not a huge deal, I can definitely get through this, as a matter of fact, I am lucky they can Fix what is wrong with me," to "Why Me? Why so young? Why couldn't it wait until after I have had kids?" and back and forth...

Thanks for being so open and welcoming. I keep telling my mom about stuff I read on this message board (she has Crohn's as well, and just had resection surgery..). She said, "wow that place is such a great resource for you!" And she is right.



:-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/22/2007 7:50 PM (GMT -7)   
this place is great, i would have never been able to be so comfortable with knowing i was making the right decision without these people! and anytime you have questions we are all happy to answer!

1. I wear the same clothes, although i gained a little weight, but that's because i keep eating junk! i don't know if i dress in style or not, i like stamp 10 jeans and levis, and st johns bay from jcpenneys, pretty much just low rise jeans. I like to wear t-shirts with sayings on them, and i lvoe my carebear shirts, and they are rather short, so i didnt' change my clothing at all, i do sometimes buy one size bigger a ten instead of an 8, so that when the bag fills it won't be lots of pressure. Do look at those pics, there are some ones on there that will show you that we are all wearing regular clothes and one of me in my bathing suit, and one of me in the infamous dress, and you can't see it at all, or at least i dont' think so. I haven't told anyone i work with and noone knows.
2. my husband is a nurse so he has no qualms about this, and it's not really any different. We have a small child, who rarely sleeps so our sex life is kind of limited anyway. But instead of takign my shirt off all the way i pull it off to where i can wrap it around my stomach, i know that sounds funny, but it makes me feel better.
3. How often you empty depends on what you eat, and how much. I empty mine when i go to the bathroom, but i wouldn't have to empty it that much. If you empty yours right before you leave and then you can do it twice during shcool i would think that would be fine. When i do work, i work about five hours and i usually empty mine about 7:30 or 8, and that is about or five hours after i had emptied it last, and if i didnt' eat the whole time iw as at work, i wouldnt' have to do it then!
4- I have my child already and am not having more, but that has nothing to do with this. Anyway, lots of women have had children, i think there is a woman on here now who is pregnant, anyway, it would be much better for you to have a baby with a bag than to have one while you are sick.

It is a hard decision to make, but if i had it to do again, i would make it again, and alot faster! there may be days when you think, ick, what did i do, but i promise that once you realize all the things the bag allows you to do, you will forget that!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/24/2007 4:29 AM (GMT -7)   
Another thing about intimacy, I have always liked wearing short, spaghetti strap nighties to bed, which are perfect now that I'm an ostomate, because when the mood hits, I just leave it on! :-)

Another excellent website is www.ostomates.org. It was developed by Sharon (aka Shaz), who is from Australia. She is also a Moderator on this forum. On the main page, there's a place to chat with other ostomates from around the world. I signed up last weekend, and it is so much fun! Everyone is so friendly and welcoming. It's a live chat, so you can ask questions and get answers right away! My name on there is Bagarama, in case you stop by, and I'm there at the same time.

Take care,
:-) Cecilia
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