Just a few questions

New Topic Post Reply Printable Version
27 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

*Bibi*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 3/24/2010 2:07 PM (GMT -7)   
I'm looking at having either a sigmoid colostomy or an illeostomy (either way it is intended to be temporary) in the following month.  I am relatively terrified about this process, as it just seems so difficult.  Is it a difficult thing to get used to?  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?  I am relatively clueless -- 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 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.
 
Thanks,
 
Bibi

SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 3/24/2010 2:46 PM (GMT -7)   
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*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 3/24/2010 2:55 PM (GMT -7)   
Yep, I have severe Crohn's and have tried pretty much every medication out there. It's either surgery or Tysabri -- which I feel is not the right choice for me. I just want to feel normal again! It's been 7 years since I was diagnosed, and it has been a roller coaster!

Are you able to be relatively active (swim, travel, etc)?

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 3:44 PM (GMT -7)   
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
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
 


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 3/24/2010 5:16 PM (GMT -7)   
Unfortunately, since Bibi has crohns, a BCIR is not an option (neither is a j pouch) since there's a chance of the crohns coming back and attacking the internal pouch.

Bibi, I've had my ileostomy for 34 years since I was 10 years old. At that age, I was looking after it all by myself ie changing it and emptying, so it's not that hard really to look after it :)

Since that time, I've completed school, travelled to: Singapore, Hong Kong, Thailand, USA, UK and most of Australia (I'm an Aussie) without a problem. I also go swimming regularly each summer.

Your ostomy shouldn't stop you from doing whatever you want to do!
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 5:20 PM (GMT -7)   
Sorry did not know, thanks for informing me of that...just a thought...
 
 
 
Leslie
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/24/2010 5:36 PM (GMT -7)   
Hi Bibi,
I too had severe Crohn's, lack of bowel control and had run the gamut of medications with no change. I have had my permanent sigmoid colostomy since Nov.23, 2009. It's awsome. Im a new person and seeing the world in a new light.
I took to Oscar (my ostomy!) about a year before I even had the operation. That is to say I have wanted a colostomy for a long time and to finally get my wishes, well, it's like I won the life lottery.
Oscar usually starts pooping mid afternoon and I empty the pouch when I feel the need. It only puffs when there is runny poop that has blocked the filter.
I was in to see my family Dr. this afternoon who hadn't seen me since before the surgery and he was amazed. Im still in my same clothes though I've gained about 10lbs, funny how the human body starts thriving when it is finally getting the nutrients it needs! He asked to see the "pouch" and when I revealed it, he just shook his head and said "you would never know."
I left the house to go to a Christmas party on Dec. 5, my surgery was on Nov.23. I was out of the house as quickly as I could be!
Hope some of this helps!

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/24/2010 5:52 PM (GMT -7)   
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!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 5:56 PM (GMT -7)   
I tried to go on photo bucket and put in chronsdisease and it say no
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/24/2010 5:59 PM (GMT -7)   
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
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 6:07 PM (GMT -7)   
oops I am a idiot..thanks
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 6:09 PM (GMT -7)   
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)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/24/2010 6:37 PM (GMT -7)   
Bibi,
I suffered with Crohn's for 7 years before having a proctocolectomy (colon and rectum removed) with permanent ileostomy, and I couldn't be happier! :-) I'm not sick anymore and do not have to take any medicine either, which is such a blessing.

The pouch is completely hidden under my clothes, and nobody can tell that I have it. People are always shocked when I tell them about it.

I adjusted to it very quickly. They assigned an ostomy nurse to me in the hospital who was incredible, and she showed me what to do and hooked me up with a bunch of free supplies. When I got home, I felt like a pro!

I live in Florida, so I'm at the beach a lot and go swimming without any problem. I just wear a one piece bathing suit with a skirt, or a tankini with a skirt. Both hide the pouch really well.

I've had my ileostomy for 4 years now, and it has become such a part of me that I honestly forget it's there. I empty it when I'm in the bathroom to pee, which is a HUGE improvement from sprinting to the bathroom 20+ times a day with Crohn's! It has given me my life and my health back.

Good luck with your surgery!

Cece

P.S. - To access our photobucket page, go to www.photobucket.com The user name is crohnsdisease and the password is 6mp3asa

Feel free to upload a photo of yourself, too! :-)
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/24/2010 8:45 PM (GMT -7)   
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!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


*Bibi*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 3/24/2010 9:59 PM (GMT -7)   
wow, thanks for all the information :)  I'm quite excited about the prospect of actually feeling good again, and FINALLY getting to use my college degree (and get married!!)!  I'm glad that this appears to be something that one can master, and it won't completely take over my life.
 
You have put my mind at ease!

Post Edited (*Bibi*) : 3/24/2010 11:02:52 PM (GMT-6)


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 10:45 PM (GMT -7)   
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
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/25/2010 10:01 AM (GMT -7)   
LOL thanks!!! thats on a shirt that i have, i love shirts with funny sayings, im a nerd.
My fav has a stick man, and his head is on upside down and it says, "fix my head"

there are a lot of us on there, i am, nascarron, i think flchruclady has a pic, peggy has one, ithink that one of the ohios has a pic on there, im not positive though.
there area  lot of random pics of me, just doing things to show that you can do anything, and some that i really dont know why are there!


UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/25/2010 10:15 AM (GMT -7)   
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
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 3/25/2010 2:17 PM (GMT -7)   
Hi Bibi, I too have crohns I had surgery a resection and got 15 yrs remmision from it. finally in sept 08 crohns raised its ugly headI had a resection done again but the small bowel this time, but ended up with a temp ileo to allow it all to heal. (never had one of these with the first op) but was free from pain from crohns instantly I am due the reversal in 13 days time I will then go on to meds to keep the crohns in check.

Having the ileo held me back not the crohns after surgery. mine is below skin level and in the early days was really hard to manage due to leaks, dehydration, and sore irriatated skin, also limitation to some foods i.e fresh fruit, salad spicy foods as it seems to aggravate the skin in and around ileo 15 month down the line I am still consious of it when at work and in public and feel its just another thing to worry about, Sorry if this sounds negative but this is just my personal experience and all though their are many who are happy with their ostomy there are also some people who just can't handle having one. wishing you all the very best and hope you will soon be pain free. Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


*Bibi*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 3/25/2010 5:10 PM (GMT -7)   
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!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/25/2010 5:44 PM (GMT -7)   
I was 21 when i got sick, almost 23 when i was diagnosed and i would have so rather spent my 20's with a bag, actually living, than the way i did!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/25/2010 6:07 PM (GMT -7)   
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'... smilewinkgrin

Cece
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/25/2010 6:55 PM (GMT -7)   
Cece  You go girl...
 
Bibi  take her advise...the end result is your happiness...
 
Leslie
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 3/27/2010 6:00 PM (GMT -7)   
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 :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/27/2010 7:45 PM (GMT -7)   
Instead of laying down for 10-15 minutes like he suggested, you can just the hairdryer for a minute or so on the wafer right after you attach it and have the bag the way you want it. When its heated, just put your hands on it and push down.
i used to lay down for a long time too, until i read someone suggest the hairdryer.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

New Topic Post Reply Printable Version
27 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Monday, December 18, 2017 8:09 AM (GMT -7)
There are a total of 2,906,705 posts in 318,987 threads.
View Active Threads


Who's Online
This forum has 158328 registered members. Please welcome our newest member, Yogabird9.
342 Guest(s), 9 Registered Member(s) are currently online.  Details
hopenchange, Serenity Now, Hoagie, AnxietyKelller, Mergirl, M1961, AZ Guy, franko63, Myself 09