hello..

gardespatient · March 22, 2004, 8:03am

Hello everyone. I trust I am in the right place after reading many of the postings. You all should be given medals for what you have endured. I too have a Ileostmy, but have never been a vicim to Crohns or colitis. My problems were the exact opposite. 2 1/2 years ago I went in for surgery to remove an ovary suspected of cancer. While in there, the Doc discovered a tumor in my Colon/Rectum area the size of a golf ball. It was suspected to be endometriosis. They tried to treat it, but it grew, and was soon a "must have" operation. They removed the tumor, and I was thankful it was not cancerous. Appr. 4 days after I came home, my bowel functions stopped completely. for the next 10 months, I would be admitted to the hospital with a NG tube running golytly through me. This would happen about every 3 weeks. I would eventually have a bowel movement, and be good for about a week, and then back up again and thus start the vomitting, cramping, and fatigue all over again. My surgeon decided that he would go in, and take out what ever part of my colon was causing all this disruption in my life. He took 5 1/2 feet of my colon leaving me about 11 inches left. Guess what...it happened again, and he had to take another 6 inches in less then a years time. Things seemed to be OK for me, I had 5 inches of colon, and was still only having about 3 bowel movements a day. Well, this past New Years Eve day, I awoke with such pain and was so sick. I was transported to the hospital here in town, and told I was obstucted in the small bowel. This little adventure lasted 58 days, and took 3 emergency surgerys, and finally a pull through ileostomy. So, bottom line...8 surgerys, always trying to prevent the "bag", and look where it got me. I won't lie, or sugar coat my feelings, I have been home from the hospital 3 weeks, and am really struggling with all of this. I hate this bag. It hurts all the time, my skin is raw and oozy around the stoma, and for the life of me, I do not understand how people can say this is a good thing. You all sound like wonderful people here, I pray that someday I will be as positive as you all, and happy too. For now, I cry a lot, I try to think of how this could have been avoided, I lie in bed night after night wondering if my husband really is as OK with all this as he says. Does the pain ever go away? Will the ointments and gells and Maylox ever heal my skin? Have any of you been sent home with a feeding tube, and open wound? If so, does the hole from the tube heal without a "hole type" scar? Did your wound actually heal to the point of closure? or does it always look like an open wound? I have so many many questions, and the books don't have all the answers. I'm sorry if I have bombarded you all with my thoughts and questions, but I would love some feed back. I need some feed back.

Thank-you...

Tammy

^Tammy

iliobob · March 22, 2004, 4:04pm

Tammy

I am also new to this, and I do feel your pain.

I have had my moments of hating my bag, having to use my bag, hating my stoma, hating the smell, hating the mess, hating the uncertainty, hating life in general.

All I can do right now is look back at what my life was like before while living with the Ulcerative Colitis and what kind of positive changes have come in those areas because of the surgery.

Also, as much as I hate it, it is my bag, it is my stoma, it is my mess and it is my life. There is no going back from here, so all I can do is go forward. if I start feeling sorry for myself I have got to shake it off because I have my wife and my son to think about. They are in this too. Their love and support remind me daily of what blessings I do have in my life.

If you have an Ostomy support group in your area, I do recomend that you go. I went to my first meeting this weekend and found it to indeed be supportive and positive.

thx
Bob

Shaz032 · March 23, 2004, 3:51pm

Tammy, I doubt there has ever been an ostomate who hasn't hated their bag at one time or another so you're not alone. :)

Do you have a stoma nurse? If not, please get your doctor to refer you to one. They're an invaluable resource for new ostomates. He/She will be able to look at your skin and make recommendations for you.

Have you tried Eakin Seals? They're a wonderful product and are used instead of paste (which I hope you're not using on sore skin as it has alcohol in it and will sting!). Eakin seals have healing properties in them and will help soothe and heal the skin. Coloplast strips are another good alternative.

Are you measuring your stoma every time you change your bag? Your stoma will continue to shrink for some weeks to come and it's important that you measure it and cut the hole in the wafer accordingly.

Also, don't be afraid to experiment with the different brands of products out there. You may find another brand that is much kinder to your skin. Ostomy Manufacturers are more than happy to send you free samples to try out their products (and a lot of them have stoma nurses on staff to speak to as well).

If you want to read about the humourous side of life with an ostomy (and you sound like you need a laugh), please have a look at http://www.ostomates.org/humour.html There's a lot of great stories there.

When your husband says he's ok with all of this, please believe him. More often than not, it's the ostomate who "thinks" that their partner must be having a hard time with it because the ostomate themselves are. In most cases, partners are just happy that you're alive and well and able to be with them. Truth be told, it usually bothers them a lot less than it does the actual ostomate.

Hope this helps and rest assured, others have been there, done that and come out smiling at the other end. There is life after ostomy surgery (and a great life at that!)

http://www.ostomates.org

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

gardespatient · March 23, 2004, 8:43pm

thank-you to whom ever posted the last entry. I do have eakon seals but did not know that the paste was a bad thing...I do have a ostomy nurse, 2 in fact..but it always seems I'm such a bother to them. Anyways, thank-you about the paste info., I will try that tonight.

^Tammy

Shaz032 · March 24, 2004, 2:23pm

Paste isn't a bad thing really - just not good for sore skin.

Remember too, paste is not actually paste as in a glue. Instead, it's a caulking agent designed to fill in any gaps between the stoma and the skin or the wafer and the skin.

Shaz

http://www.ostomates.org

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

niki · March 24, 2004, 6:44pm

i hated my bag and cried constantly until i got help from my dad, who also has an ileostomy. my skin never was oozing, just red and sore...but after my dad had his operation his skin was as irritated as it could be...it was oozing and puprle...but it actually healed...and once it does the bag will stick to you better and it won't be as bad :) just remember that you will have better days...the reason my dad's skin got so bad was that none of the products he tried would stick properly and he was constantly having to peel the bags off and put on new appliances because they would always spring a leak! he fixed this himself, using products that his ostomy nurse at ubc hospital had not heard of....i use the same stuff he does now...and i went for 10 months straight without ever having any leaks...and i change it about every 5th or 6th day. my ostomy nurse thought that the kind of paste i use would be too strong and irritating, but she was suprised when she actually looked at my stoma site, after 10 months of using the paste, and it was fine-not irritated a bit. she said that i was just unusual, but my dad and grandpa both use it and have no problems too....i think i have figured out why my ostomy nurse is afraid of it though-it would be very bad to use just after surgery when you have fresh wounds....and hard to get off without hurting....and also, she thought i was using it all over, but i actually only apply a little bit of paste right around the stoma.....i don't put any on the really thin, sticky part around the outside. our gluing system is this: i brush a thin layer of "skin-bond" (it's a white glue) ina circle around the stoma, that is about 1/2 an inch-1 inch wide and goes right up to the stoma...then i squeeze "stomahesive" paste from a tube and apply it on the appliance in a circle around the hole, right up to the edge. the white glue protects my skin from the stomahesive, and the stomahesive makes a good barrier to stop leaks...and that has to set up for a few minutes before you stick it on too....like rubber cement has to set up. then i carefully put it on (its hard ro adjust once its stuck on) and push gently down....some of the stomahesive paste will ooze out , and i just wipe the excess off. and then i just snap on the bag (because i wear a small two-piece bag....its too hard to do this gluing with a one piece because its messy) and it is not a good idea to change it in the first couple of days unless you have to because the glue becomes harder...and if you take it off in the first 2 days it is still soft and you will be having a hard time trying to scrape it off your skin..if you wait a few days it comes off all in one piece...and if there is any little bits that are left on my skin i just use "remove" to wipe it off...just make sure that your skin is dry before you put a new appliance on, if you use remove. anyways, i hope that helps someone-i felt like it saved me because it gave me the confidence to go out and not worry that my bag would come off.....oh, and i also fill in a little dip beside my stoma with "adapt" paste before i put on any other glues...because it will leak where there are any dips. i also have found that hollister bags broke more often for me and my grandpa...i use convatech bags (with a filter!!!!!! it stops it from filling up like a balloon!) and i use "m-9" deodorizing drops sometimes....you just put a few drops into the bag after you empty it, and then the next time you empty it the smell isnt so bad! that helped me because i was afraid to empty it in public washrooms! oh, and it took me a while to figure out that if i used a small clip for the end of the bag, and then tucked it into the top of low-rise panties...that you couldnt see that i had a bag and i could wear pants that were tighter in the legs...sorry this is so long lol :)

gardespatient · March 26, 2004, 2:35pm

Thanks Niki...
I couldnt help by noticing you have 3 generations of ostomies??? WOW!
The econ seals seem to be working, I did go see my nurse, and that was helpful. I too sut the bag up into my panties..your right, you cannot tell this way, and still can wear all the styles out there:)
Take care, and thanks again.

^Tammy

Sexy_with_a_bag · May 5, 2004, 6:43am

Well you've received some very good advice I hope you''re feeling better and like they said there is still life after the surgery. Just check out what I call myself and trust me no one can tell me otherwise!

God Loves You!

T_Jane · May 7, 2004, 3:30pm

Hi Tammy,

I dont have any advice for you yet . I am getting my ileostomy on the 12th. So I just wanted you to know that I hope things will start getting better for you soon.

I know I will probably be going through all the things that you are going through now. I am hoping that I will be able to deal with it better because I suffer from Crohns disease and severe fistulas. I am always in pain, so my quality of life has to get better.

I wish you could feel better, I think you will in time. This is a great place for support. Please stay in touch.

Tonia

I Just tell myself, it could be worse !!!

T Jane