ileostomy vs j-pouch

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cynnycal
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ileostomy vs j-pouch

Postby cynnycal » Fri Apr 07, 2006 2:11 pm

Hi all,
new to the board. new to cancer. my story is, i'm 25 years old, and three weeks ago dx'd with Familial Polyposis (FAP) which basically is inherited colon cancer. my dad died of it when he was 36.
the familial polyposis alone would mean i'd have to have my colon out. it's pretty much garbage. but cancer has already grown in the rectum (i think it may be stage 3)
so i was put on 6 cycles of chemo, and 5 weeks of radiation, rest, and then surgery, then some more chemo.
i just started the chemo two weeks ago, in right now getting the second round.
i'm worried that the sphincter won't be saved, and i'll have to get an ileostomy (sp?) which i really really don't want. but i have no choice in the matter.
i felt like i could possibly live with the j-pouch if i could get it, but i don't know if the surgeon will be able to do that. i guess it depends on if the tumor shrinks down enough from teh chemo.
i guess i would just like to know those of you who are young and have this ileostomy...i guess just, whats your life like now with it?

Guest

Postby Guest » Sat Apr 15, 2006 5:51 pm

Hi,

I just found this site today, very impressed. I'm sorry I didn't know about it sooner. My advise to you is to see an ostomy nurse prior to your surgery.

2 yrs ago I was diagnosed with rectal cancer. Today I have a colostomy bag, it is permanent, this was my decision. Thought I would write and tell you my experiences and why my decision. When I was orginially diagnosed, doctor's were hoping to save my rectum. During radiation treatments prior to surgery, I spent that summer tied to the house because of bathroom issues. If I ate, I had one hour then spend up to 4 hours running to the bathroom every 15 mins. One morning, I couldn't get our of bed fast enough, in 15 mins I messed two bathrooms and a shower, I had no control. If I left the house, I always had Depends on.

After radiation treatments, saw my surgeon again, She was talking about creating some kind of pouch, but could not guarentee bowel movement control. Could be a few daily, or 10 or more daily. Radiation had done damage to my muscle control and was shot. She advised me to see an ostomy nurse.

Both my husband and I went. The ostomy nurse was very informative, but what I learned during that visit, is that with the bag I could get my life back to normal. I could eat what I wanted and not worry how it could effect my bowel controls. Both my husband and I decided this was the best decision. Called my surgeon and gave her carte blan (just get all the cancer).

Yes it took getting used to. But with everything I've been through (chemo), it was the easy part.

Today I can leave the house and not worry, I can eat when ever and what ever and not have to worry where the nearest bathroom is. I been on an all day field trip for my son's class. I've been on long airplane rides, visiting friends for hours and not rushing into the bathroom. Last summer I was swimming in the ocean, and plan to do so again this summer. (will admit can't wear a 2 piece swimming anymore, because of bag, and my surgery scar).

I do believe I made the right decision, and it was an informed decision. Hope this helps you. God Bless, good luck and let me know if you have any questions

Guest

Postby Guest » Sat Apr 15, 2006 6:00 pm

forgot to add.

Have a colon rectal surgeon do the surgery. They are more experienced with this type of surgery.

I was stage III, and 46.

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cynnycal
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Location: chicago

Postby cynnycal » Sat Apr 15, 2006 11:57 pm

wow, thank you whoever you are....
interesting points.
see, my thing is...in me wanting to live my life at least somewhat 'normally' after this, for me it would mean i'd be able to continue with what i love.
and what i love is a (VERY) acrobatic form of martial arts from brazil.
I've been doing it for a little over two years, and is truly the only thing i love in life and want to be able to do.
it involves cartwheels, backbends and back walkovers, handstands, and that's just for the newer people. more advanced people do amazing things with their body. (i.e. back flips, etc)
my body is very important to me. as is my fitness. but of course, that includes my health.
ultimately i will have to do whatever they'll have to do in order for me to live. b/c i have FAP the whole colon has to come out. that's just the way it is for me.
but i dread that i might not be able to do what i love. and i just dont' know how great my quality of life is if i can't participate.
i'm due to get radiation starting in a couple weeks. i am doing the chemo now. i just spent the past two days in a weekend 'conference' of sorts in this martial art. a womens event actually with women practitioners from all over doing workshops etc.
and i trained my butt off. it feels good, i don't even think about my situation, and my BM's don't seem to affect me while i'm training.
i mean. it may seem silly to worry about doing something like a martial art when you're life is on the line.
anyway, thanks again.
and my surgeon i feel is one of the best. comes highly recommended from everyone. i dunno if i can mention names on here or not but he's Dr. Saclarides from Rush University and is apparently tops in his field in the city (and Chicago has tons of good doc's so i take that to heart a bit)
he was great when we first met him too...even though it was the first day i learned that what i have is cancerous, he actually made me feel pretty good b/c he drew out a plan of attack so to speak.
well...i guess time will tell....

Lee
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Joined: Sun Apr 16, 2006 4:09 pm

Postby Lee » Mon Apr 17, 2006 10:46 am

O.K. Now I'm a member, I am the person who responsed about the colostomy bag, signed in as a guest. WOW that sounds like some major body bending work out. Have you talked with your surgeon about this? Having a bag will not stop you from persuing this goal. The surgery might, but not the bag. Have they talked you yet about the type of surgery you will have? I know there are some different types of surgery. I would be more concerned if your stomach muscles will be effected as a result of the surgery.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

tamfigg

Postby tamfigg » Mon Apr 17, 2006 9:35 pm

Wanted to assure you that having the illeostomy is a doable thing. I had Stage III rectal cancer at 27. I had a temporay illeostomy but looking back it saved my life. It was harder mentally to deal with than to take care of it. There are so many options out there and I would be willing to share what I used with you. Direct you to some sites that can help. Again, it was hard to get used to it mentally, I was a newlywed so having an ostomy was not what I would call sexy, but my husband says he never even looked at it that way.
There are certain foods when you have an illeostomy that you will want to avoid at first so that you dont get blockages. Good luck with your decision and please if you need someone to talk to e-mail me, or go to my site. www.figgtree.com

melissa
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Joined: Tue Apr 18, 2006 8:47 am
Location: Pennsylvania

Postby melissa » Tue Apr 18, 2006 9:31 am

Cynn,

I just read your posting(s) and actually can appreciate your concerns. I was 21 when diagnosed w/ stage III rectal CA - with no family history. I was in no way prepared for all of the challenges I was facing but soon learned that's all they were - challenges not complete roadblocks. I did have a colostomy in place that they told me could be reversed, however, it took 12 years for that to occur. I can honestly say that having an ostomy didn't stop me from doing the things I loved - travelling, skiing, swimming, most foods, and dating/sex. And it shouldn't stop you from the things you love. I actually was able to irrigate my system which regulated it to one BM per day. And for about 10 years I only wore an extra-large band-aid to cover the stoma b/c I was so regulated. I'm not sure if they still recommend that or not but with a colostomy it helped me have a "normal" life for a 21 year-old. After trying out all the foods I liked, I knew what to expect after eating certain things and even some foods I needed to cut out of my diet. Most people didn't even know I had a colostomy for years. I took control of my life again & it was a great feeling. That is how it was for me with a colostomy.

An ileostomy is a different story b/c the discharge is different in consitentcy but not unmanageable either. In 2001 I had surgery to reverse the colostomy and had an ileostomy for 9 months while the reconnection healed. It was a different way of doing things but not terrible. In December '05, after being recconected for 3 years, I had a perforation in my colon & again had to have a temporary ileostomy in place. It is more maintenance than the colostomy but again, not unmanageable. I have to wear a pouch all the time & empty it quite often but other than that, I still have a pretty normal life. I work full time as a sales rep and am on the go everyday. I still travel, in fact my husband & I are planning to adopt a baby from China this year and are excited about travelling over there! I appreciate life and have decided that nothing will stop me from doing the things I love.

As for the martial arts activities, you may just have to put things on hold temporarily while you figure out just how to take care of an ostomy and how your body is working. Definitely talk with an ostomy nurse & your surgeon & share your concerns.

Best of luck with your treatments & surgery. If you want to talk more feel free to e-mail me at mstahl_6@msn.com.

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cynnycal
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Postby cynnycal » Tue Apr 18, 2006 9:43 am

Tammy, someone actually directed me to your site last week and i sent you an email through there...not sure how often you check the email listed on the site.
b/c your story seems so similar to mine (outside of mine being genetic) but it's also stage 3...and i'm very young as well (turn 26 at the end of may).
i'm very interested in your foundation and grants, b/c my insurance really isn't the best at all (which is why i have to go in and be hospitalized every two weeks instead of just getting to wear a pump at home.)
and my surgeon is out of my network, so insurance isnt going to cover much of that.
my family and friends had a meeting last night about holding a fundraiser...luckily i know alot of musical people AND i work a music school that has a great concert hall, which they've offered to let me use for free. but i worry nonstop about all these bills.
anyway, to lee, yes it's possibly the best workout i've ever done, and since i've been in it it's gotten me in the best shape i've ever been. i love it more that just for that though. it involves music, singing, history, philosophy, etc. (when you 'play' capoeira...as it's most often referred to as a game, you play against someone inside a circle of people, at the head of the circle is whats called a 'bateria' or basically the band, it's a drum, two tamborines, an agogo and an instrument known as a berimbau which is pretty much exclusive to this art. they bateria leads the circle in call and response songs (in portuguese) and the songs usually dictate whats going on in the game (you're playing too hard, you're playing too aggressive, you're playing beautifully, etc) that being b/c it was sorta started in brazil in the time of slavery and they had to 'disguise' what they were doing from the slave owners who obviously wouldn't want them learning to fight. so they acted like it was a game, or a dance. singing and whatnot....
here's a link to a game i'm playing with my teacher: http://www.youtube.com/watch?v=RFijClpwoUk
(it's really not a great game b/c i was fairly new and all. that's me in all white)
better examples are here:
http://www.youtube.com/watch?v=9dlZOdJAOas
which was a womens event held in Holland two years ago. (these vids may take a bit to d/l so i usually click on pause til it finished loading)

I've told my surgeon, and he says i'll still be able too, and my oncologist too. thing is, i just dont' think they understand how twisty bendy flexible you have to be....if i have a bag, and i do a back walk over, what if the bag pops open? and i've heard horror stories of leaking, etc.
i just really don't think i'm ready to deal with this, unfortunately i just don't have a choice.
my surgeon is great, but he just can't tell me right now if i'll be eligible for the j-pouch or not b/c they want to wait and see how the chemo/radiation works to shrink down the tumor. i mean, i guess it's good that he's not needlessly giving me false hope, if he doesn't know yet he just doesn't know.
i'll just keep bugging him til i know.
i asked him yesterday if there was ANYthing i could do to better my chances of having the j-pouch and he said "pray"
greeeeaaaat

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cynnycal
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Location: chicago

Postby cynnycal » Tue Apr 18, 2006 9:48 am

melissa, woops, you must have been posting the same time i was...
but thank you for your story, i guess i'm a bit confused. if you have a total colostomy, don't you need to have an ileostomy too?

oh and sex...jesus i can't even think about that now. i can't imagine the affect on my self esteem from this.

tamfigg

Postby tamfigg » Tue Apr 18, 2006 1:05 pm

I am so sorry can you send me another e-mail so we can talk about options together. I would love to talk with you, my e-mail address is www.figgtree@hotmail.com. We have had issues receiving e-mails lately so please send me something so we can talk.

Tammy

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cynnycal
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Location: chicago

Postby cynnycal » Tue Apr 18, 2006 7:02 pm

tammy,
I tried to use that email....it got kicked back to me, is there a www. in the email? or is it just figgtree@hotmail.com?

tamfigg
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Joined: Tue Apr 18, 2006 1:14 pm
Contact:

Postby tamfigg » Wed Apr 19, 2006 3:17 pm

Sorry it's just figgtree@hotmail.com
Tammy Figg
Figg Tree Foundation
www.figgtree.com

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cynnycal
Posts: 215
Joined: Thu Apr 06, 2006 5:45 pm
Location: chicago

Postby cynnycal » Wed Apr 19, 2006 7:30 pm

kay, hopefully then, you'll have an email from me
(sent it yesterday to that addy).
um...if you don't get anything try sending me an email
cynnycal at yahoo dot com
(sorry...don't like spammers trolling for emails)

Alex Parikh

ileostomy vs j pouch

Postby Alex Parikh » Thu Apr 27, 2006 2:38 pm

Before you make the final decision, make sure to get a couple of opinions from surgeons that do pouches - usually colorectal or surgical oncologists.

Alex Parikh, M.D.
Surgical Oncology
Vanderbilt University

Holly
Posts: 537
Joined: Thu Sep 08, 2005 11:06 pm

Wow

Postby Holly » Tue May 02, 2006 4:26 pm

I would definitely concur with the doctor's statement. I, too, would recommend that you get more than one opinion. Never enough opinions. It is so important that you are proactive in the management of your health. Ask lots of questions and demand answers. Not blah blah blah but rather answers that you both completely understand and that are mutually satisfactory!

Know that you are in my thoughts and prayers!

Hugs!

Holly


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