Newbie with an ileostomy and in need of a hug.

Sorry to hear of the difficulty you are experiencing right now. It will definitely get better and believe it or not, you won't want to reverse it. Once you are in control it can have many advantages.
If you don't eat and only drink fluids the output will of course be fluid as well so you do need to eat. For myself the powder is a must as well as an ostomy belt to help keep the pouch secure and reduce accidents. As time goe's on you will learn what works best for you and you will get a lot of good tips just reading this forum. Don't be discouraged, as you learn to handle it, you will find you can do anything you want to, so let me wish you you good luck with your new journey.
WaterMaster (I have had mine 14 years now)

Everything you said makes perfect sense. I'm sorry for all that you've been through, but as others have said things will get better.

Getting used to the stoma can take a lot of time, but it will happen. I know it's gross and icky and weird, but eventually it will just be another part of you. I NEVER touched mine in the 7 months I had one, except for some quick dabbing with a damp paper towel to clean up during a change, but I did get used to looking at it. It's something you're just going to have to do.

Hopefully the home nurse that visited you today knew what they were doing and gave you some great tips and hooked you up with a lot of samples. You can always call any of the manufacturers and explain to them your problems and their customer service reps (who I always found were extremely helpful and kind which was reassuring given the subject matter) should be able to offer you product suggestions as well as send you tons of samples.
Not sure of your location but the big ones in the US are Hollister, Coloplast, and ConvaTec.

I know the awful feeling of the skin being raw and sore. The good news is that if you can get a good seal, even for 2 or 3 days, it should start healing dramatically.

Do you have a loop/diverting ileostomy or an end ileo? Basically, how much of it is sticking out? If it's not protruding very much, or flush with the skin you might benefit from a convex wafer which will help push the ileo out more and keep the output from getting under the wafer, which could be a major cause of the leaks.

Powders can work great to heal the skin, but you want to make sure you use VERY LITTLE - less than you think, and wipe off ALL of the excess after it absorbs as it can actually cause issues with getting a good seal. I used stoma paste for some time to help with the seal, but I wouldn't recommend it for you right now as it contains alcohol and can burn like hell on the raw skin. A barrier ring can help - they are essentially the same as paste, just already come in molds and don't contain the alcohol.

When you're applying the wafer make sure the ENTIRE area is as DRY as possible. Don't use soap or lotions around the area when you're changing the wafer as they can leave residue and again, mess with the seal. Just wiping the area with water and a paper towel is sufficient and I can't stress a enough - allow it to fully dry.

I know you said you've lost a lot of weight since surgery, but is the ileostomy located somewhere in or around any skin folds? I was severely underweight going into my surgeries so I can't be much help here if there is, other than to say that I always applied my new wafer either lying down fully stretched out or standing with the skin around the ileo stretched a little taught. Afterwards, just cupping your hand over the new appliance can help warm and activate the glue a little and get a good stick.

And as watermaster suggested, ostomy belts can be a big help - it will keep it firmly pressed up against your belly. I never used one, and have heard they can be uncomfortable, but also a big help.

Unfortunately it may be a long trial and error period as some peoples skin just doesn't agree with certain products and they just don't work as well as they're supposed to.

The output should thicken up overtime, however, if you DO have a diverting ileo it might not. With mine, oatmeal (with less water than recommended) and a banana in the morning for breakfast always kept things relatively thick throughout the day, and only a few sips of water for the first hour or so that I was awake. I also snacked on a lot of potato chips and pretzels which usually helped as well.

Other typical thickeners are rice and pasta, but neither ever really helped me. Mashed or baked potatoes were always helpful. Basically any starch.

It's still relatively soon after your surgery so I would stick to foods that are low residue and chew more than you think is natural.

Never be afraid or feel bad about asking any questions you might have - either here, or to a doctor or nurse. Things really will start getting better once you get the hang of things and the trauma of it all starts to become more bearable. Just be patient with yourself and take everything one step at a time.

Big hugs, and yes it can get much, much better. Have you seen an ostomy nurse (stoma nurse, WOCN, ET.... all other names they call them)? If so, see her/him again; if not, push for that. A lot of visiting nurses don't know what they're doing regarding ostomies (and even worse, some think they know a lot more than they do -- this board has been filed with such stories).

If you can get the leaking under control so you can resume other things in your life, then you might not hate your stoma in the same way ... I feel fondly toward mine, in that it's the reason I can do all kinds of things I couldn't do when I was sick..... but you're more restricted now, so of course you don't feel good about it.

Also if you can work out a pouching system that works your skin will probably get a lot better too. One thing that's kind of cruel is that a new stoma is harder to manage -- it's swollen, changing size etc.... and that comes right at the time when you are most inexperienced in managing it....

It's a huge shock to have emergency surgery and wake up with something you didn't bargain for. Please try to be gentle with yourself -- besides having a lot to deal with physically, you've got a lot to deal with emotionally.

Hang in.

Just wanted to also let you know that everything will be okay. I know you don't believe me but I went through the same thing. Absolutely hated it, couldn't look at it, didn't want it. Have had it just over a year and it is suppose to be temporary but I might need another two operations to get back to normal. Honestly, I don't care if I have it for the rest of my life. Feeling much stronger, NO PAIN, back to figure skating again (never thought I could do it again). So, here's to you and getting confident with it and enjoying life again. You will! I send you a big hug and lots of good wishes. Sue

Dear Angela,

Sounds like you have been given lots of great advice already and lots of support. I have not even had my surgery yet, so I'm not much help as far as advice on how to handle some of the issues. But I wanted to write and tell you that I'm really sorry to hear you are having such a tough time. The people on this forum are amazing. They know so much and are incredibly supportive.

As for not going out due to the leaks, I can relate in some ways....part of my problem is complete bowel incontinence. I have had more days than i can count where I didn't want to go out or didn't go out for fear of a leak/accident. It can really be a very traumatic and depressing event. The good thing is that as time goes on, you learn better ways to cope, better ways to prevent leaking or accidents, and come up with ideas for how to deal with it if it does happen. I learned from people here to put together my "crap kit", complete with extra medical supplies, wipes to clean up, plastic bags to put dirty clothes in or for garbage, and of course, a change of clothes. I find that even though I haven't needed my kit too often, it sure gives me peace of mind when I go out. Sure, it's annoying and at first seems weird to bring so much stuff with me wherever I go, but I am caring less about what other people "might" be thinking and realizing that if bringing my extra supplies with me is allowing me to go out and do more, then that's what I will do for now. Hopefully, for me when I have surgery, and for you--as you adapt to a new situation and your mind and body figure out what to do with it, the fear and depression will fade, and things will be so much better! Your confidence will grow and you will barely give a second thought to leaving the house.

But I hope you are learning that it WILL get better, and you can have your life back, even better than before! I know when I have my surgery (hoping for before the year's end), it will sort of be a whole new world of stuff to learn and deal with. But from everything I have read and everyone I've talked to, a lot of it is just needing to give yourself TIME to adjust, for both your mind and body to adjust to this new situation. I cannot imagine what it's like to have your world turned upside down so quickly and unexpectedly. I'm sure that when I have my (planned) surgery, it will still be a shock when I wake up and face a new reality. Just know that you really are not alone, and I very much believe it's going to get better. Keep asking questions and ask for help when you need it. You do not have to fight thru this stuff on your own.

Sorry for rambling on. When i read your message, I just wanted to give you a big gentle hug and tell you everything's gonna be ok.

Angela - sorry for your condition at the moment. You have a loop illeostomy, and that's the grand daddy of them all! It sounds like you will be re-connected once your colon calms down. You can make it through! You've already received great advice on here. And, to have kids that help you with your stoma - sounds like you've got future nurses/Dr's taking care of you now.

Keep on keepin' on!

I was so in your shoes over 4 years ago. I too had diverticular disease. I had to have my entire colon removed though. I was immediately connected, but developed a leak, and had an emergency ileostomy. I was so unprepared. I was really sick though, came home in poor condition after 6 weeks.

I was stuck in the bathroom for half of the day, also scared leaving the house, then couldn't. The only thing that saved my sanity, was finally having the leaks under control. Please keep trying new products, call all manufacturers, and have the stoma nurse properly tell you what she thinks you need. Once I went from flat wafers, to convexity and use an eakin seal along with a stoma belt.....I went a week without a leak. It was liberating to get that back in my life.....being able to do just mondaine things. Pure torture. I cried every stoma change for over a year, just feeling disgusted.

Get through this, and you will soon be able to have your reversal. Please try to gain some weight back as well. Feeling this way inhibits your desire to eat. (((((((((((((HUGS))))))))))))))))