I'm T Jane from the crohns board. Next week I am having surgery at the cleveland clinic to get an ileostomy.
I am having a little bit of a hard time dealing with this. I hope you all can help me out a bit. If there is anything you would like to tell me about an ileostomy ,please do, good or bad, i want to hear it all. I can handle it. hahaha
Hopefully this will be temporary, I have severe fistulas and the plan is to let them heal , then try new med.s that will hopefully keep them from coming back.
I know I will feel better afterwards but it is still scary as he!!. I'm sure most of you know what I'm feeling right now.
I am wondering where you get your supplies and how much do they cost?
I am sure you will be hearing alot from me. I hope I can be as confident as you all are.
I know facing a bag can be pretty scary and I also know that a lot of people are going to tell you it's not as bad as you think it is. Well you're very lucky to have a place like this to come to. When I had my surgery there was no one I could talk to, and of course I really wanted to talk to someone who had or rather was going through what I was going through. I'm going to tell you something that you proberly don't want to hear and that is this, it's not as bad as you think it is. They have a lot of products out there that make having a bag easy to live with. YOU will still be able to wear your same clothes, no one will be able to smell it(besides the times you go to empty it and who don't smell when they go to the washroom to take care of #2,bag or no bag). It does smell different from a regular bowel movement but they some deoderizers that can completly hide the smell, I use one that works very well for me. You drop a couple drops in your bag every time you empty it. As far as people being able to tell you have one through your clothing, well I've foolen even the toughest critics. See they have bags that are very easy to hide under your clothes.They come in all kinds of shapes and sizes you will have to try out different products and figure out which one works better with your lifestyle. As far as your intimate lifestyle, it won't really change it that dramasticly. I'm engaged to be married and when I first met my fiance I was scared to tell him about my bag. We dated for a while before I told him(and yes we were even intimate a few times before I told him), but see it really didn't matter to him anyway bacause he liked me for me. The reason for telling you this is to let you know that yes you'll be just as desirable then as you are now. To wrap this up, your bag will not change your lifestyle completely and no it's not as bad as it sound and yes you've come to the right place to ask questions. Keep asking questions it helps if there is anything you would like to know I sure anyone as well as myself would be glad to help you. GOOD LUCKGod Loves You!
Thanks for the reply Sexywithabag,,, Another good name would be sexybaglady. hahaha...
it is getting easier by the day, i havent went into detail with my son (10) ,i will tell him before i go but i dont want him worring for a week. but i told him that after i heal up from this surgery that i will feel real good, and that i would even be able to ride a bike with him. his face lit up and i almost cried, so i am figuring out quick that no matter how bad this seems, it will be worth it, he just turned 5 when i was dx, so he only knows a mom that never feels good.
I have been on the crohns board for about a year and it has been a GOD send and I am sure this board will be too !!!
You will have to let me know what products you use, i have no clue, and i would like to get an idea about the different brands or what not, before i go in the hospital. My surgery is scheduled for Next Wednesday May 12th.
where are you from? and why did you have to have a bag? I hope you dont mind the questions, we get pretty personal sometimes on the crohns board , so I am use to just asking whatever comes to mind.
I live in West Virginia. I'm 34, married, have one son. a step daughter and twin step grand daughters.
I'm from the Chicago Land area. I have crohn's or rather as of right now, had Crohn's. I have a 12 year old daughter and she is the reason why I had the surgery. I was so sick with the crohn's that I was in and out of the hospital a lot. Well when they offered me the option of having the surgery I freaked out and left the hospital. While I was out of the hospital for that short period after I left my daughter who was 10 at the time over heard me telling a family member about the surgery. I was so sick, so I was getting advice from people. Well my child asked me what was a bag and would everyone know I had it? As I was explaining it to my daughter it didn't sound so bad to myself! I left the hospital on a friday, by saturday I could hardly walk. Saturday night I couldn't walk and my daughter came to crying and said, "if you have the surgery are you going to be better?" I said yes but I'll have that bag on me. Then she said "but you'll be able to play with me again and you won't die?" I said yes. She said "will you have to still keep going to the hospital"? No I told her, then I feel asleep. She woke me up after watching the tapes they gave me and said" please go to the hospital and have the surgery I don't want you to die and all of the people on that tape said it helped them and made their life better. By that time I didn't have any choice but to go to the hospital. When I went to the emergecy room my heart rate was 182, my bloodpressure was 76/43 and I had a fever of 105. I was dying and my daughter saved me. I had the surgery and they sent me home with books and tapes and even a little doll who had an ostomy and a bag for my daughter. Everytime I did anything to that bag she wanted to be there, whether I was changing it or emptying it. Then one night she said she wanted one, of course I told her no she didn't, then she feel asleep and woke up in the middle of the night and hugged me and said" mom you're special", and I said why ? Then she said" because you have that bag on you" she said "that bag makes you special". Well of course at that moment I knew I could'nt let the bag change my life. But it changed my life anyway only instead of for the bad it was for the good. Just last night I was prancing in front of the mirror and walking around my house in a bellytop and some shorts and she told me she wish everyone had a bag and then I would be perfect. Children understand some things better than most adults. I hope your son understands whats going on with you and help you through it like my child did. Just like his eyes lite up when you said you will be able to ride a bike with him, it won't matter to him as long as he have his mom back healthy he will be happy. Try to share as much of it with him that you can when you feel that he is ready it might bring you two even closer. This is a part of you and don't treat it any different, because the attitude you have toward it is the same attitude everyone else will. Sometimes I get mad because no one around me give me pity, when I try to feel bad about my bag they tell me girl please and keep going. I've become a much better person since I had the surgery, physically and mentally so it's easy for people to forget I even have the bag. O K as far as products I think coloplast have the best bags' hollister have the best deoderizer it's called m9 and convetec has the best adhesive. When you come home they will have you wear CONVETEC products until you heal then your ET nurse will show you other products. Ask her about COLOPLAST ASSURA BAGS, they are very comfortable for active people and they have a lot of features that you'll find helpful. Also ask her about HOLLISTER DEODERIZER CALLED M9, it eliminates oders in your bag. All three companies carries bags but I use all three for the exact reasons I just told you. I've had my bag for almost a year and a half now so I've tried just about everything and have experienced some mistakes. Enough to know who carry the best products and what they are better for. That don't mean you shouldn't experiment to. It just means I've already made most of the embarresing mistakes for you HAHAHA. Oh I almost forgot I'm 27. HAVE ANY MORE QUESTIONS JUST ASK>God Loves You!
Hi Tonia and welcome. I've had my ileo for 27 years since I was 10 years old due to UC, and haven't regretted it once. It gave me my life back!
Before surgery, your surgeon will put you in touch with a stoma nurse who will watch you sitting, standing, walking, etc and mark an appropriate place for your stoma. Please do not let them give you a stoma on or above your belt line since this causes problems with the flow into the bag. If there's time, ask them if you can have a sample of a bag and wear it before surgery so you can find an appropriate site for it.
After surgery, you'll be given a bland diet but after you've healed, you'll be able to add more foods, one at a time, to it. People react differently to different foods so just because one person can't eat a certain food, eg peanuts or corn, doesn't mean you can't. You have to experiment.
You'll be sent home with some bags plus instructions on where to purchase more when you need them. Everyone's skin type is different so what suits one person may not suit another. Again, it's a matter of experimentation with all the different brands out there and manufacturers are more than willing to send out free samples of their products when asked.
At first, you'll probably be living in sweat pants and tops because tighter clothes will irritate your incision. Once you've healed tho, you can wear anything you want... well, almost anything, bikinis might be out (altho I do know some ostomates who can still wear bikinis). Low cut jeans might be a bit of a problem too depending on where your ostomy is placed.
No one can see your bag through your clothes. You'll be aware of it at first and think they can but they really can't. Did you know Bob Hope and John Wayne both had ostomies? The Queen Mum had a colostomy for almost 30 years before she died. The bottom line (pardon the pun) is that no one need know about your ostomy unless you tell them.
You guys are GREAT !!! There is no way I would be able to deal with this is it wasnt for you all and the peeps on the crohns boards. If you havent already you should visit there sometime. there is always a fast responce and usually someone wanting to chat all the time.
Thank you sooo much for your responces,, it has helped me alot. Sexy, you story about your daughter reminds me a lot of my son, he is getting kind of excited about this surgery because i will feel so good, I am kinda of getting excited about it a little after reading your post. I know that has to sould crazy. I am usually not a cry baby but I am worried about the pain. tring not to sound like a drugie , i hope the pain med's are good.
I really needed your posts, I cant think you both enough. I hope we can stay in touch. Shaz where are you from?
I'm from Perth in Western Australia. About 4 years ago, I went on a trip to the UK and USA by myself to visit my ostomate internet friends and met quite a few of them. They're a great bunch and I'm sure you'll meet a lot of them on the various ostomy boards around.
Best of luck :)
http://www.ostomates.orgI'm not a complete idiot - some parts are missing!
Hey Shaz, I just visited your web site, it's great !!! I loved the links. I found the one for the swim suites.. i have been worried about that alot because we have a pool at home and a camp on the ohio river and we boat alot. so i am excited about getting a couple of new suites. I was really suprised that they dont cost any more than a regular swim suite.
You've received very good advice. If you don't have any loose waisted pants (with elastic), you may want to get a couple before surgery. It may take awhile to get comfortable in clothes. Ask your stoma nurse to help you with your first order. Your insurance may determine who you order supplies from, but there are plenty of catalogs. Where I live there are surgical supply places that specialize in Ostomy supplies and have an ET nurse available. I mention this because your surgery is not where you live. Have you located an ET nurse by you? My surgery was at Cleveland Clinic in Florida so I have a relationship with an ET there. (1 hr from where I live).I'm 7 months post/op and wore a one piece bathing suit last month on a cruise. No big deal !
You'll have lots of questions. Visit all the boards for answers. Good luck
No I havent look for a ET nurse near me, I already talked to one in cleveland and she gave me my tatoo, she said we would go over lots of other things when i have it done, but i never thought about contacting a nurse close by, there is a hospital about a half hour away so I will contact them tomorrow and see what i can find out, i do believe there is a surgical supply place in the same town as the hospital so I will go have a visit with them too.
Its great to hear from you,,, thanks to all of you for giving me hope !!!!!!!!!
I'm glad to that the bathing suite shouldnt be a big issue.
Good luck. The company I get my supplies from service various states, I'll find out for you if they service yours. They deliver for free. I'll be looking out for some supply places for you.God Loves You!
As far as pain, Of course you'll be in some pain after the surgery, but it won't be as bad as you're expecting. Talk to your doctor about pain management. To be honest with you I didn't feel that much pain at all thanks to the morphine pump they gave me.God Loves You!