Just a few questions

These are all great questions. Addressing your first question (How long does it take to get used to) is different for everyone. It took me about a month to come to terms with mine. It doesnt really bother me much to have. It sure beats having to deal with the colitis.

The bag will puff up, but not to a point that its noticeable. It will be noticeable to you, as you will feel its shape change as it fills up against your body. That will just be the signal that its time to empty it. Im actually a very skinny guy, and you cant tell I wear a bag at all.

I wish you the best of luck. Your obviously considering this prospective because of something serious going on with your body.

Bibi*
  You shoud ask about the BIRC or BCIR one it is supposta be great, you insert a tube once a day and you dont have to have a bag, you just put a bandaid over it and you will not have to go again uasually till the next day.  I was wanting that but they were able to reconnect me so no appliance for me...just a suggestion...good luck to you. Welcome to our site.

Leslie

Sorry did not know, thanks for informing me of that...just a thought...

Leslie

It depends on the person as to how long it will be until you are comfortable to go out. It also depends on your recovery time, as to when you will feel like going out!

it does NOT show!!! i swear it does not,lol.
You can go to photobucket.com
login crohnsdisease
pw 6mp3asa

there are some pics of us on there. and i put one up where there are two pics, side by side of the area where my pouch is, one when i didnt have it, and one when i did, in the pic its been about three hours since i emptied, so its got stuff in it. noone has even attempted to guess, cause they cant tell. You can look and see if you can!
There are also a few pics of some of us in bathing suits.

yes you can swim, you can rock climb, you could sky dive (if you were that brave, lol) anything you can do now, you can do with an ileo! And really more, cause you will actually feel like doing things.

My big life changes? honestly, the biggest thing that affects me (this sounds silly) i had to start putting stuff inmy left pants pocket, instead of my right pants pocket. Which is kind of annoying to remember, but i can deal with it. The reason for that is, i put everything in my pocket, and not too long after i got my ileo, i stuck a pair of earrings in my pocket. And it occured to me after i sat down and they poked my leg, that i better not leave them in there, where they could poke a hole in a plastic bag of poop!

you did exacctly what i always do!
you changed the letters is crohns around, its not spelled like it shoudl be i dont think, lol

Its crohnsdisease

ok did that but still no pics of people how do I get there


Hi Leslie, can you please edit your signature down a bit. As per forum rules, it should be no longer than 10 lines long (including blank lines). Thanks matie... Shaz

Post Edited By Moderator (Shaz032) : 3/24/2010 7:21:12 PM (GMT-6)

leslie you arent and idiot, you were just spelling it the way it sounds like it should sound! LOL

Ok here is what to do, sign in
then just scroll down and you will see the pictures! Sometimes there are albums listed, but its easier to jsut go through the pics one by one!

summerstorm
   Thanks so much I got in and watched a slide show of people but did not see I think only one that I have seen on here...

Well off to bed and I hope you find yourself...LOL

Leslie

Ya I saw you summerstorm, and nascaron, cant remember the other one.  It was cool to put a face with the name. 

Woke up this morning feeling great again, I know I hate saying this when so many are still suffering but maybe it will some of you hope. 

Amanda, especially you sweetie....see just how good your going to feel when its all said and done.  Yesterday I was saying how all of my friends have ditched me , except for one and she was my former care giver...she invited me over tonight to have dinner with her family.  So cant wait to go, probably wont stay as long as I usually would as I get to hurting and wear out pretty quick,  but that is getting better day by day.

I use to be on the IBS site, then I figured before I saw my surgeon that I would end up with a applicence so I got on this site...so can I stay on this one or should I not?  Your my family....

I have a question when you have a Total Colectomy does that get rid of the IBS?  Because I dont think I ever did have IBS, because I have no more symptoms.  I think it was all due to my colon...

Hope you all have a easier day today

Leslie

Chronielass:

Thanks for your input. I am pretty aprehensive about this, but at the same time, looking forward to getting some semblance of my life back. I have strictures all along my Terminal Ileum, and newly discovered very active crohns in the last 25 cm of my rectum/anus -- therefore, just doing a resection is not an option for me atm (which I though it was up until 2 weeks ago...). I hope that eventually I will be able to be reversed, as this whole process is a bit daunting. The people I have talked to in Kansas that have had these have told me tales of horror, but if it will make me feel better, I am all for it. I just want to finally feel healthy, sleep in my bed (instead of on the bathroom floor due to obstructions), and go on with my life.

However, I now am convinced that this is not the end of the world :)

I just turned 23, and when I was told that I was needing this, I thought all was over. Thanks to everyone who has given me such good input!

Bibi,
This will be the beginning of a new and healthy life! I had Crohn's in the rectum, too, and spent many a nights camped out on the cold bathroom floor. It was miserable! Imagine never having the urge to go again. You can shop for hours without having to sprint to the bathroom. After what we've been through, it's an amazing miracle! I don't miss it for a second and honestly wouldn't go back even if I could.

Plus, I've gotta put it out there, intimacy with my husband is so better now than before surgery. When I was sick, I didn't have any energy and never felt good. Now, I have lots of energy and feel great! Just sayin'...

Cece

Is it a difficult thing to get used to?

If I said no, i'd be fibbing. It's one of those things that does take some time. And also, someone helping you really doesn't get the job done It's best if you put a new bag on; learn how to use the tube of paste; also in my case, I use adhesive spray to get a more solid attachment. I kid with my wife that I use epoxy. Make sure that you let the adhesive get a good attachment. That means laying down for a good 10 or 15 minutes after the bag is attached. give the glue time to set.. and the fabric around the bag (or flange) has a smooth fit over your skin. You'll figure it out :)



Additionally, how long did it take for you to transition to the point that you could be confident enough to go out and live life without fearing that your "attachment" was going to show? And do they show? I mean, if it fills up, won't that poof up under your clothing?


Last question first. It does show; a little Tuck in shirts or tops can be worn without a problem Confidence builds over time. and one step at a time is best. Put on loose fitting tops first that can be worn outside slacks. Then when you're comfortable walking and wearing the appliance.. go back to what you wore before the bag came into your life. no strict timetable. it's up to you and how you feel with it ..



I am relatively clueless --

To be honest, the only information I received at the hospital was the name Hollister. There is a world of suppliers and information to be found The web is good for this Also you're going to waste a lot of bags at the beginning. and you may wind up in the ER with a busted bag and no replacements .. Also the ostemy staff at the hospital is used to putting bags on patients. you aren't The instructions I got were .. minimal. it's a learning-by-doing thing.. which you will be successful. You'll make mistakes. and that's how you learn... Order lots of supplies at the beginning.. you'll use them. Get used to the supplies that they used at the hospital first. once you get experienced and confident with using them. THAT is the time to experiment with other supplies.

It's called experience and as you gain it.. your life will improve.



I have done so much research and talked with my doctor about this, but it just doesn't completely work out in my mind how this all can be. Additionally, what life changes did you have to make?

I eat large breakfasts instead of dinner. Lunch is about the same. maybe a sandwich for dinner. I want my system relatively empty at bedtime. You'll still wake up at 3-4 am. but it's not going to be overflowing.. Oh in that regard. I suggest you sleep on some large beach towels for the first month or so until you get the hang of attaching yoru bag. Buy lots of washclothss and well . keep them around for accidents. I guarantee you they will happen in the beginning less and less as time passes. And forget about sleeping on your stomach. not gonna work..

For me. Eggs cause gas and make the little bag turn into a hot air balloon. I avoid them :)

Some foods will come out like a river; some come out like a slow thick mudflow. You'll learn what foods come out and some foods take longer to digest than others do. Individuals are different. you'll learn what's what and how to deal with it....



I am hoping that after this surgery I will be able to get out into the workplace, as I am a recent college graduate (and my Crohn's had been holding me back from living any semblance of "life"). I am looking forward to feeling better, but would just like a bit of an idea of what I am getting myself into, as well as if you have any tips for me.

You won't worry about being greater than 10 feet from a toilet any longer... :) Life gets better one day at a time... And everything you took for grated before your illness. will return to you :)

Take care :)