A few questions about ostomies from a newbie :)

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80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 3/13/2010 9:07 AM (GMT -7)   
Hi guys!
As I prepare for my surgery I have an increasing number of questions...some may be silly but I trust you all :)
 
1. Are leaks common? This is my biggest worry about having an ostomy and I don't want to have to worry about this all the time. How often do they happen?
 
2. It seems like an ostomy is right where I'd wear the waist of my pants/seatbelt/etc...is that a problem and how do you work around it?
 
3. Can you still sleep on your side/stomach? I usually do and don't fancy having to find a new sleeping position (though I will if I have to--small price to pay!)
 
4. How many times do you have to empty at night? Is getting up once enough?
 
 
 
I think that's all for now...I'm sure I'll have more questions later. Thank you all so much for all your help. You are making this much easier on me! 
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 175
   Posted 3/13/2010 9:15 AM (GMT -7)   
Great questions Stephanie.  I haven't even been scheduled for a surgery yet but am anxious to read the answers to your questions.  I'm so glad that you are going to have your surgery.  Do you have a surgery date set?
This is an unbelievable supportive group of people.  Just when I thought I was by myself with this condition, I stumbled upon this board.  What a blessing!
We are here for you, dear one.
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 3/13/2010 9:33 AM (GMT -7)   
I don't have a date set yet. I meet with the surgeon Monday (two days--CANNOT WAIT!) and we are hoping for the end of the week. I wish it was tomorrow, seriously. I agree; the people on this board are AWESOME.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/13/2010 11:51 AM (GMT -7)   
1. Oscar has never leaked, maybe it's because he's a colostomy and the stool is more formed?
2. Before surgery you'll meet with an ostomy nurse who will mark the spot where your ostomy will be. Bring all your pants, and try them all on while your there, you'll be able to find what will be the best placement. I had to ditch my ultra low waisted jeans (but really, at my age, I should give them up! LOL), but can wear regular low waisted and everything else! I have quite a few different cars and also own an automotive repair shop, so am always jumping in and out of customer's cars, and have never had a problem with the seat belts.
3. I couldn't sleep on my side or tummy for about a month after surgery, now I sleep any which way I please, Oscar is fine!
4. I've never actually had to get up to empty, it's usually I wake up at 2amish to go pee and think "hm, maybe I should clean Oscar." Last week Oscar was having runny poops and when I woke up to pee, the pouch was 1/2 full so I decided to empty. Again, I think maybe it because he's a colostomy that Im having an easier time.

-Allie
www.oscartheostomy.blogspot.com
-Allison
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."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/13/2010 2:59 PM (GMT -7)   
I have a permanent ileo.

1. NO! I have only had a handful (in 10 years) and they were user error...your WOCN will fit you with an appliance post op and will check it again at your follow-up to make sure it is the right one for you.

2. Wear the style of pants you usually wear. They will take that into consideration when placing their 'tattoo' on your stomach...just remember the contours of your stomach will also play a factor:( Lower is better, that is for sure!

3. YES! You won't be able to immediately post op but you can...I am a stomach sleeper, too:)

4. Usually~NONE! It won't be that way in the beginning, but you will figure out your 'new normal'...I also eat when I want and don't stop after a certain time. I think some people do, but I have found, that FOR ME, I can regulate my system by the foods I eat better than taking meds or depriving myself.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/13/2010 3:01 PM (GMT -7)   
Stephanie
I have had an ileostomy for 2 1/2 years. Never had a daytime leak..never. Have had some at night. Always between 3 and 6 AM. Has to have something to do with what I eat in the evening. Made some changes in my pouch isntallation process and haven't had anymore nighttime leaks. If I eat too much late in the evening I might have to get up to empty, but not often.
As for the seat belt, when I put it on I pull it way out and put a twist in it. That keeps it from pulling back too tight.
You will find ways to cope with any little "problems". And with this forum, you will be fine.
By the way, be sure the hospital sends some pouches home with you. You may not like what they send with you, but in time do some research and ask for samples from your supplier or the manufacturer. There are lots of options to try.

You'll be fine.

Dan

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 3/13/2010 3:02 PM (GMT -7)   
1. At first you may have some leaks, its a learning curve. But once you get the hang of it you shouldnt have any problems. the only leaks i have had have been because of stupidity on my part. And when you do get leaks, they arent usually full out poo going everywhere leaks, its usualy a slow leak you can take care of without anyone knowing.

2. When you go to your appt to be marked, this is very very important, wear your normal clothes, if you usually wear skirts, wear a skirt, if you usually wear jeans, wear the pair you wear the most. That way you will get measured correctly. Ask the ET for a sample bag, or go ahead and order a sample from a company, put it on once you get marked, fill it part way wtih apple sauce and see how it works.

3. You can sleep however you want to. It will be a while after surgery, i think it was about 2 months before it didnt hurt me to sleep on my stomach. I sleep on a waterproof pad that i sewed a sheet over, so its just like the bed, only if i leak, it only will go on there and me, no changing all the sheets!

4. At first, you may have to get up and empty some at night, the first few weeks you will have lots of output and lots of gas, dont freak out, it will go away, lol. Now, it depends on when and what i eat as to how many times i get up. I always get up to pee anyway, so i just empty then.

here a few things im gonna tell you, even though you didnt ask :D just cause im bossy like that!
If you tape the top of your bag to your stomach, it wont flop over your pants, and it will be much easier to wear. You wont be able to do that until your incisions heal.
When you wake up from surgery, you will have on a clear bag, and your output is gonna be bright green and smell horrible, like i cant even describe the smell, lol. noone told me this and i freaked out, i was like OMG i have to deal with this forever??? And it looked so gross in that clear bag. But once you get home you can use a regular bag, that you cant see through and once you start eating, it will change colors and wont smell nearly as bad, i promise!

Any other things you want to ask, none of them are silly, (or not as silly as the ones i asked, i promise, lol) we will try to answer!
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-


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/13/2010 4:55 PM (GMT -7)   
Thank you guys so much! :) Your answers have already put me at ease.

As for the bags, I guess I hadn't really thought of the fact that I have to get them somehow, lol! How do you get them and are they expensive?

I am nervous about getting my "fitting" since I've lost so much weight none of my pants fit correctly anyway...so there really aren't any "stomach contours." If that's the case and I gain weight after surgery will that be bad?
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/13/2010 5:31 PM (GMT -7)   
Stephanie, Great questions!

1. I've had an ileostomy for 4 years and have never had a leak. The wafers I use last a week, and I like to snap on a new pouch halfway through the week, since they get more wear from emptying.

2. Clothes have never been a problem for me. I wear whatever I want. When I wear low rise pants or jeans, I like to tuck a tank top in to the bottoms keep the top of the pouch from showing, and then I'll usually wear another top or jacket on top of that. Nobody can tell that I have an ostomy. People are always surprised when I tell them that I have one.

3. Yes, I can sleep on my side and stomach. When I'm on my stomach, I like to bend my right leg and hug a pillow on my right side, where the ileo is, to create a space in case it fills up some overnight.

4. I usually get up once a night to pee and will empty while I'm up.

5. I have Blue Cross Blue Shield insurance and order supplies through Sterling Medical, since they are covered 100% by insurance. You can check with your insurance company to find out if they have a supplier that they have a contract with and how much they cover. There are places to get discounted or free supplies, if you don't have insurance.

6. I put on a new wafer while standing up, so I can stretch my stomach to make it as flat as possible. Once the wafer is sealed on, a few curves doesn't seem to affect it.

I hope that helps, and good luck with your appointment on Monday. You have a great attitude!

:-) Cecilia
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 3/13/2010 6:45 PM (GMT -7)   
i order my supplies from edgepark, it will depend on where you insurance works with. You will have to call them and find out. Depending on the type of plan you have will depend on how much you will spend.

If you gain 15 pounds its not gonna make that big of a difference in your fit or anything, if you gain 100pounds it might.
I lay down so that my stomach is flatwhen i change.
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-


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/13/2010 6:57 PM (GMT -7)   
Cecilia
You made a comment "people are always surprised when I tell them I have one". Bravo! Apparently you, like me, don't try to hide it or keep it a secret. Nothing to be ashamed of. I wonder how many of us feel the same.

Dan

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/13/2010 7:14 PM (GMT -7)   
Oh, I won't be ashamed. I'm telling anyone and everyone about the surgery. I always talk freely about my diarrhea as it is...I feel like if I have to live it, you can deal with hearing about it. And also, I'm not embarrassed about an ostomy--less embarrassed than about diarrhea, actually, because it is SUCH a positive change for me. I'm glad for what it will give me. Not to mention that most people really don't have the guts (pun intended) to go through what we go through/went through and I'm proud.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 3/14/2010 6:37 AM (GMT -7)   
polishdan said...
Cecilia
You made a comment "people are always surprised when I tell them I have one". Bravo! Apparently you, like me, don't try to hide it or keep it a secret. Nothing to be ashamed of. I wonder how many of us feel the same.

Dan


I'm not ashamed. I tell people about it all the time. I've even posted pictures on another forum. If a friend asked to see, I would show them
26 year old female
Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
4/10 Going to try to go back to the J-Pouch again
Imodium (8/day), Questran (3/day), TPN 12 hours/day, IV fluids 4 hours/day


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/14/2010 9:33 AM (GMT -7)   
Seems we all have a great attitude about this. When going from being afraid to leave home for fear of not being able to make it to a toilet to freedom to go wherever you want, how can you not have a positive attitude. And for me, keeping things inside makes them seem worse.

Dan

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/14/2010 11:01 AM (GMT -7)   
Totally agreed, Dan. You said it well.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/14/2010 11:34 AM (GMT -7)   
polishdan said...
Cecilia
You made a comment "people are always surprised when I tell them I have one". Bravo! Apparently you, like me, don't try to hide it or keep it a secret. Nothing to be ashamed of. I wonder how many of us feel the same.

Dan
I tell everyone and anyone. I think more people need to know about ostomies. I even have a blog about my adventures as an ostomate!
 
-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."


Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 3/14/2010 12:33 PM (GMT -7)   
Hey Stephanie!
 
It's so refreshing to hear about somebody who is excited to get an ostomy. It truly has been the best thing that has ever happened to me(and my surgery wasn't planned...I woke up with a stoma!). I was SO worried about a million things but after about 8 weeks, life started to take on a whole new normal. Three years later and I can hardly remember my life any other way and I love it. I'm so grateful to have my life back, or should I say, start living the life I never could before.
 
1. Leaks are not as common as the worried mind would like to think. They happen, sure, but a lot of things with an ostomy are trial and error. You will have plenty of time to try out different appliances(brands and types) and get a system going that works for you. I've never had a leak at night and the few leaks I have had were very small and honestly happened because I didn't change the appliance soon enough. You'll learn as you go and you'll gain confidence with each day that passes.
 
 
2. I never had the opportunity to get inked for my stoma site and it couldn't be in a better spot, thankfully. So the fact that you're able to choose where it goes, is awesome. The stoma nurses will help you out tremendously. It's a good idea to wear what you'd normally wear so you can get a good idea of how things lay. Definitely ask to see an appliance, or bring one, to get a feel for it. I'm in my 20s and still wear low rise jeans, bathing suits, and pretty form fitting shirts. I wear a tank top under most of my shirts, only because I feel like it gives me that extra security of keeping the appliance snug to my skin so that I CAN wear those tighter shirts, and so I don't worry about it popping out from under my shirt. I never have any issues with seatbelts, but keep in mind that the first 2-3 months your body will be healing and changing. So don't be discouraged if you're sore or bloated. Life gets better. I promise!
 
3. Yes you can still sleep on your stomach. I don't, but I was never a stomach sleeper. I do lay on my stomach to get massages, lay on the beach, and anywhere else I may need to. Flat on my stomach with no propping anything up or using pillows. Like I said above though, it will probably take a few months before your body is healed up enough to feel comfortable in that position. There have been nights I've woken up to a bag full of air, that I needed to get up to empty(amazing how the body knows to wake up like that). Other than that, I sleep with no interruptions.
 
4. In the beginning, I *think* I may have gotten up 1x a night, but that was in the very beginning. In fact, I don't even think I got up to empty. I was so anxious that the stoma would retract back into my stomach that I would wake and turn on the light just to make sure. My anxiety was the problem, not the ostomy. It's different for everyone though. Your output will be very watery in the beginning and you'll need to empty more often until you can incorporate more foods that help bulk up the stool(pasta, bread, potatoes, etc). The thicker the output, the longer you can go inbetween emptying.
 
 
A few words of wisdom...
 
 
-Get up and walk as soon as you can after surgery. It took my bowels 2 full weeks to wake up and if you can avoid having that problem, your recovery will be much quicker. The NG tube used when your bowels aren't cooperating is not fun and if you can avoid it by moving around, do it!
 
-Prepare yourself to be in the hospital twice as long as the doctors tell you before surgery. If they say 1 week, prepare for 2.
 
-Complications happen. Prepare yourself as best as possible so that you don't get discouraged.
 
-Be open and honest with your nurses/doctors. Tell them of your fears, anxiety, pain, and any other discomfort during your stay. Ask questions, be informed. Knowledge is power. The better educated you are on what's happening with your body, the better experience you'll have.
 
-Don't be shy to ask for pain medication. I had open surgery, but if you're able to do it through lap. surgery that's even better.
 
-Bring some comforts of home with you. Your pillow, a blanket, an ipod, crossword puzzles, magazines, a book, etc. Those post-op/recovery rooms tend to be very "cold" and it helps, mentally, to have things that bring you comfort.
 
-If you can, have somebody(be it a spouse, parent, friend) with you if you're up to it most of the time. It helped TREMENDOUSLY to have another person to be my advocate when I wasn't feeling well enough to do it on my own. Sometimes it gets intimidating when the surgeons do their daily rounds, and sometimes those 10 questions you had thought of earlier completely get forgotten once those "white coats" come in to check in on you. Jot down things as you think of them so you don't feel overwhelmed to remember it all.
 
 
Hope these will help you make the most out of your hospital stay! Best of luck and keep asking questions!
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