What is the Best Bag for Me?

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walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/3/2006 10:04 AM (GMT -7)   
confused  I have been told that I need to have a  Colostomy.I have talked to my doctor,and an ETnurse,and they have all asured me that I am doing the right thing with all of the problems that I am having.I am confused because I don't know what is the right Colostomy Bag for me,and which one will work the best.I don't go that many places,but I do like to swim.I am so confused and my husband knows nothing about what is out there to be used,so he no help to me.My surgery will be sometime this month or next.
                                       Thank You
                                           walking scared

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 6/3/2006 11:09 PM (GMT -7)   

Hi There

You probably won't know the right bag for you until after your op and you have experimented with a few different ones, no one bag suits everyone, that's why there are so many different ones out there. Your stoma nurse will probably help you out with that one so try not to worry too much about it until the time comes. They will also introduce you to the various products available for ostomates. You can ask your stoma nurse for a sample bag so you can put it on and determine the best place for your stoma beforehand if you like.

You don't want your stoma above or on your waist line if you can help it because that can interfere with the wearing of jeans, belts, etc but with the help of a good stoma nurse who will watch you walking, sitting, the types of clothes you wear, etc and then mark the spot accordingly, this shouldn't be a problem.

We were all new to this once and had the same fears as you. Rely heavily on your stoma nurse and come and chat with us frequently and we'll help get you through this as best we can.

Good luck.

Shaz


I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/4/2006 9:26 AM (GMT -7)   

Hi Shaz,

    Thank you for your reply.I know that it will all turn out at the end,when I have had a chance to look at all of the different bags.I am just a little nervous over the whole thing.I just can't help but think of it.I have told a few friends of mine that I am really close,and they tell me that I will be fine and not to worry.It is easier said then done.Years ago I used to work as a Nurses Aid,and would work every day with people who had a Colostomy.Back then,I remember that they ugly and very noticeable. I know that they have come a long way in the medical field these days.I do know a lady that had one years ago,and she said that she  would not reverse it,if she had to.They say that I will have to get used to a different life style.Could you  please tell me in what way will my life change,except for the bag?

   Once again,thank you for responding to my cry for help.I am glad to be in touch with other people who have had it done.

                                      Thank You

                                          walking scared confused


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 6/4/2006 9:40 PM (GMT -7)   
Walking Scared said...
They say that I will have to get used to a different life style.Could you  please tell me in what way will my life change,except for the bag?
Your lifestyle will only change dramatically if you let it, and then for the better hopefully :) The only changes I've made are that I don't go to the loo the 'bowel intact' way, ie I have to empty and change my bag sometimes. Other than that, there is nothing I can't do (except wear a bikini but this body ain't exactly made for a bikini anyway - one piece bathing costume is fine). Oh, and I don't get an excuse to read while in the loo anymore :-)
 
I've gone through part of primary school, all of high school and all of my working life with my bag and it hasn't stopped me in the slightest. I've travelled the world, I'm an Aussie and I've been to the USA, UK, Thailand, Singapore, Hong Kong and most of Australia without a problem. I've been rock climbing, ridden camels and elephants, swim regularly in summer, etc without a problem.
 
At first it's a learning curve, just like anything is. You will probably get some leaks and some sore skin, but with the help of your stoma nurse, and suggestions from the people here, you should be able to get those things under control. Once you have and you have healed properly from your surgery, then the sky's the limit :) 
 
Remember: Your ostomy won't stop you from doing anything - only your mind will!
 
Oh, and I'm like that lady you met years ago. I can't be reversed but if by some miracle it was possible, I'm not sure I'd take the opportunity. I love my ileostomy!


I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/5/2006 8:55 AM (GMT -7)   
 Hi there,
     First on all,I want to thank all of you for the support that  you are giving me.I have never had a chat over the internet.
 
     When it comes to wearing a bathing suit,is it best to wear a regular fitting one,or some sort of a two piece,where the top comes down to cover the bottom?I have one of each.
 
     I have the name and number of the first Stoma Nurse that called me.Sould she be the one that I call for all of my problems or when I have a question?
 
     Maybe I am going to far in asking this question,but does your family support you in having a Colostomy?I am getting no support from mine.I guess that is one of the reason that I am asking so many questions.He will not talk to me about it,and it makes my marriage feel very distant.
 
     I have been reading all of the foods that I am supposed to avoid.Did it take you a long time,to get used to not having those types of foods and drinks in you daily diet?I love to drink sodas.I mostly drink caffine free sodas.I don't know what else to drink in its  place.
 
     Thank you for all of your help.
                                  walking scared
 
    

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 6/6/2006 4:09 AM (GMT -7)   
Walking Scared said...
When it comes to wearing a bathing suit,is it best to wear a regular fitting one,or some sort of a two piece,where the top comes down to cover the bottom?I have one of each.
Either one should be fine, I've always worn a regular one piece bathing costume but I know heaps of ostomates who love the new Tankini bathers. Whatever is more comfortable for you is the one you want :)
 
They also said...
I have the name and number of the first Stoma Nurse that called me.Sould she be the one that I call for all of my problems or when I have a question?
Yep, as long as the Stoma Nurse is happy to help you out, there should be no problem with that. They're paid to answer your questions.
 
Walking Scared said...
Maybe I am going to far in asking this question,but does your family support you in having a Colostomy?I am getting no support from mine.I guess that is one of the reason that I am asking so many questions.He will not talk to me about it,and it makes my marriage feel very distant.
I was 10 years old when I had my ileo op so my situation is a bit different to yours in this regard. My parents made the decision for me and gave me total support, as have the rest of my family, immediate and extended. I'm not married yet but in all my dating years I've really only ever had one guy who couldn't handle it and left - but that was his problem!
 
They also said...
 I have been reading all of the foods that I am supposed to avoid.Did it take you a long time,to get used to not having those types of foods and drinks in you daily diet?I love to drink sodas.I mostly drink caffine free sodas.I don't know what else to drink in its  place.
Once you have healed you should be able to eat and drink anything you want to. At first you will want to eat bland foods while your insides heal. Then introduce new foods into your diet one at a time and CHEW, CHEW, CHEW!  That way, if a food does cause you problems, you can identify the culprit and either limit it or totally eliminate it from your diet. Just cos one food causes problems for one person DOES NOT mean it will cause a problem for you. I can eat and drink anything I like (and it shows!) including supposed no-no foods such as corn, peanuts, mushrooms, etc all without a problem. 
 
Drinking gassy drinks and eating gassy foods will cause more gas in your bag but that's no big deal really - just go and empty it when it's full of gas just like you would if it's full of stool. There are gas filters for pouches - they work much better for colostomies than ileostomies. Ileostomy output is too watery at times and can block the filter whereas colostomy output tends to be a bit firmer and there's less of a chance of output clogging the filter up.
I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/6/2006 3:50 PM (GMT -7)   

 Hi there,

    You are so very helpfull.I am glad that you are the one who responed to my cry for help.Since you had your ileostomy so early in life,I guess you have been through a lot.I hope that you will remain the one that I can always communicate with over internet.

    I don't remember if I told you or not,but my surgery is scheduled for this Friday afternoon.It is going to be over at Johns Hopkins Hospital,so I know that I will be in good hands and I have a great doctor.I know that it has been a long time for you,but do remember how long a  person is in the hospital for a colostomy these days?The docotor says about three days,the doctors nurse,says about four to five days and the ET nurse says usually about seven days.I would like to get an idea of how long,so that,my husband can go about his business,when I get out.

    You sound like very brave person.You sound like a person I can look up to for a lot of advise in the future,even though I have a Stoma Nurse.

    I am the kind of person that likes to sleep on my stomch or my sides.Will I have to wait a while before I return to those positions?I have read up on it a little bit on the computer.But I would like your opinion,please.

    I am not looking forward to the prep. the day before the surgery.

                                                      Thanks for you help once again,

                                                                  walking scared


Janene
Regular Member


Date Joined May 2005
Total Posts : 89
   Posted 6/6/2006 7:59 PM (GMT -7)   

Hello Walking Scared,'

I am so sorry that you are going through all of this. I did not see if you mentioned if you has UC, Crohn's or something else.

I was just wondering if your doctor has talked to you about other options besides just an ostomy. For instance the internal pouch where you use a catheter to drain your pouch a few times a day. There is the BCIR or the Kock pouch. I have the BCIR, you can learn more about it at www.bcirostomy.com. I had my surgery July 2005 and it was the best thing I have ever done. I have my life back finally. After years of UC. I intubate 3 times a day. One when I wake up once during the day and then at bed time. I do not need any supplies except the catheter. It saves me time and money. It takes me at most 5 minutes to empty and then I go about my business. I can wear a bikini if I wanted to. I wont, but I can if I wanted to. I do not have to do anything special when I go swimming either. I just put on my bathing suit and go. My 'stoma' is to small you cannot even see it. And it is not raised like the stoma of an ostomy. It is flush to my stomach. My husband says it looks like I have 2 belly buttons. Actually you cant even really see it unless yow know its there. There is another girl on here who had the same surgery as me and has said it is the best thing she ever did as well. It is nice not to have to worry about bathrooms anymore. Unfortunately it is not usually available to Crohn's patients.
There is another surgery called the j-pouch. I cannot really say to much about that because I don't have it, but I can tell you that I decided against it for many, many, many reasons. You can learn more about that at j-pouch.org

If you have any questions just ask away. I am just so glad to be happy and healthy again that I want to tell the world. I would if I could.

Janene


Hoping2BWell
Veteran Member


Date Joined May 2006
Total Posts : 537
   Posted 6/6/2006 10:01 PM (GMT -7)   
Hi Walking With More Knowledge Now yeah
 
I have been proudly sporting my colostomy for a few years now. When I went into surgery, I did not know what I was getting into, though I knew I was going to have a colostomy! When I woke up after surgery there she was! But I had a great "Wound Nurse" as she was called at my hospital.
 
She showed me different wafers and bags and we went through a booklet/magazine type order book where she helped me to select what might best suit me and my way of life. Not only that, but I shared some of my concerns and was put at ease right away. She showed me in the book where there was a screw on type "lid" or cover. With this, I can remove the bag and screw on the cap to the wafer and go for a swim. It is useful for intimate moments, too. She showed me how to stand in front of the mirror and change my wafer and bag. She showed me how to empty and clean my bag. She was great!
 
Those were some of my concerns. Out in public, no one knows what I have on under my clothes! Everything is fine! And I must admit, I do feel so much better with my colostomy than I did before!
 
I carry a home made "kit" in my purse in case I need it. It has everything in it that I need in order to change the whole kit and kaboodle. I have a wafer, a bag, stomahesive, tape, small scissors, extra baggies and twisties. So there is no worry there. I even carry extra undies and extra plastic baggies with twisties and a wet washcloth in a baggie, all secured in my very own brightly colored bag inside of my purse.
 
Anyone here on this forum is willing to share their experiences with you, If you have any questions or fears, just ask!
 
Because I have Crohn's Disease, I usually post there on the Crohn's Disease Forum.
 
God bless and stay well,
 
Madelyn
I am in my 50s. Crohn's Disease (since childhood), pancreatitis, diabetes, neuropathy, arthritis, chronic fatigue, fibromyalgia, asthma, Rosecea. I have had 4 surgeries including pancreas/sphincterplasty, duodenum, resection, proctectomy with sigmoid colonectomy. I have a permanent colostomy.___________________                 ____________________
There's nowhere I can hide that God can't find me, nowhere I can go that God can't help me.


walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/7/2006 11:53 AM (GMT -7)   

 HI there,

    When I logged onto this web site,never expected to get this much support.I hope that one day I can as helpful to someone else as you have been to me.

     I know a little bit more as to what I might have to go through,thanks to all of you,that have responed to my cry for help.

     I have been told be many doctors that I had Crohn's disease.I kept going to several different doctors,because I did not want to except it in my mind.I finaly found a doctor that said I don't have Crohn's disease,but maybe another problem.With the doctor knowing that he sent me to specialist of in Baltimore,and that is were I was detected with a fistula.The doctor does want to put me through a series of tests.He said that he will just dig deep when he is in there.

     When I went to the the specialist,we really did not talk that much about what he was going to do,because he himself did not really want to say,not knowing what he was going to find once he got in.He did say something about the size of my belly button.I don't know whether he meant that he was going to try and keep it down to that size or what.I guess I will find out when I wake up  from my surgery.I hope that my Stoma Nurse is by my side when I wake up,or someone who knows exactly what was done to me,so that they can explain it to me.

     I spoke to my Stoma Nurse a little while ago,and she is going to meet me in the pre-op room before I go up,so that she can go over the different kinds of bags that I can choose from.I know that she will be working with the doctor in the O.R. room,so I guess she will know what kind of bags,tubes,and etc.,that I will need.

     I am trying to get myself ready for the hospital stay,but I don't know where to start.My stomach is tied in knotts,and my mind is racing faster that I can think.So far I am doing fine on my liquid type light diet for today,then tomorrow I start with the good stuff,if you know what I mean.I know that I will scared until I am put under.If I asked for something to calm me down,do they usualy give it to you,to help settle down you stomach before surgery?

     I will try to get back on line to talk to you tomorrow,if I can,in between my bathroom trips.If for some reason I do not get back in touch with you,I will try to get on the internet as soon as I feel comfortabe sitting up and get moving around again.Once again,thank all of you for your help.

                                                                  Thank you,

                                                                         walking scareds


Hoping2BWell
Veteran Member


Date Joined May 2006
Total Posts : 537
   Posted 6/7/2006 6:41 PM (GMT -7)   

Hi Walking Scared,

I am thinking about you and your upcoming days. I know you will do very well. My two sisters, both RNs, told me that the best thing I could do for myself is to walk as much as possible after surgery, as soon as I can. It strengthens your body, gets your bowels on tract much quicker, and keeps your lungs clear. I walked as much as I could! I had a Demerol Push IV. So I would save up a push, and when I got back from a good long walk around the ward, I would give myself a push and rest a little. Then I was up again, walking! The doctors and nurses were amazed at how quickly my bowels returned and how well I was dong. They praised my walking and attitude, saying that is what was making my recovery so quick!

They will give you something to calm your nerves before surgery. You can even ask them for something. Do you have any family who can be there with you? I know that would calm me down! If not, just pretend that I am there, and I will be your family.

Keep me posted as much as possible. I do care about you and your well being. Get well quick!

God bless and stay well,

Madelyn


I am in my 50s. Crohn's Disease (since childhood), pancreatitis, diabetes, neuropathy, arthritis, chronic fatigue, fibromyalgia, asthma, Rosecea. I have had 4 surgeries including pancreas/sphincterplasty, duodenum, resection, proctectomy with sigmoid colonectomy. I have a permanent colostomy.___________________                 ____________________
There's nowhere I can hide that God can't find me, nowhere I can go that God can't help me.


walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/8/2006 7:18 AM (GMT -7)   

 Hi there,

     Well,tomorrow is the big day.Some how I was able to sleep last night,but I know that I will not be able to sleep tonight.I will just lie there and all different kinds of things will flash before me mind.Every other time I have had surgery,that is what always happens.But I know that this time will really be worse.I try to put it out of my mind,but it just will not go away,no matter what I try to do.

     It must be nice to have two sisters as a nurse.It is always good to have a doctor or a nurse in the family.

     My husband will be taking to the hospital,but I do not know if he will stay back in the pre-op room with me that whole time.He is not a patient man,when it comes to sitting around waiting.I really appreciate your offer of the thoughts that you will be by my side and to be my family.I will take you up on the offer.I know that God is always with me,everywhere I go.I have found myself talking to him,more an more the past couple of days.

     I will try and do what you suggested about getting up and walkling around and then coming back and pushing the Demoral button so that I can get some rest.I am sure that everything will turn out fine,because I have all of you rooting for me,and all of you prayers on my side.

     I will have to be leaving my house about 8:00am,tomorrow morning,so I don't think that I will be answering anymore e-mails for a week or so.But if you would like to keep them coming,I promise that I will answer you back as soon as I feel like sitting up to the computer.

     I really want to thank each and everyone of you that have responed to my cry for help with in the past week.Everyone has been so helpful.I may not personally know you,but I already concider all of you my friends.

     So until I am able to return to my computer,thanks for everything.

                                                             walking scared :-)


Hoping2BWell
Veteran Member


Date Joined May 2006
Total Posts : 537
   Posted 6/8/2006 3:47 PM (GMT -7)   
Hi Walking Scared,
 
I am thinking about you today and praying for you. yeah You will do well tomorrow in surgery, and you are right! God is with you all of the way! Just call on Him and He is there.
 
I will be with you tomorrow in thought and prayer. I do remember how nice it was to have my sisters with me, and then my husband with me when I married. So just pretend I am your sister, and think I am right there with you holding your hand while they prep you. I wish I lived near so that I could visit you in the hospital. But remember my thoughts and prayers are with you. Everything will be all right.
 
God bless and stay well,
 
Madelyn
I am in my 50s. Crohn's Disease (since childhood), pancreatitis, diabetes, neuropathy, arthritis, chronic fatigue, fibromyalgia, asthma, Rosecea. I have had 4 surgeries including pancreas/sphincterplasty, duodenum, resection, proctectomy with sigmoid colonectomy. I have a permanent colostomy.___________________                 ____________________
There's nowhere I can hide that God can't find me, nowhere I can go that God can't help me.

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