New to Ileostomy, Seeking Advice on Coping and Work

Hi, I just wanted to introduce myself and ask a few questions.

I've recently had surgery and have been left with (I hope) a temporary colostomy. I'm still trying to recover from the surgery and having a lot of concern about living with a bag. I know it will be difficult at first. I work full time, but have been off sick for 6 months already. I'm extremely concerned about how this will affect my work. I work in close proximity to lots of people and have reservations regarding the noise/smell from the bag.
Does anyone have advice about this?
I also suffer from depression and I'm worried about having to deal with something like this, to deal with colleagues and friends. I've had 2 bad experiences already that have left me embarrassed and concerned. I know that this is going to change the way I live my life until I can find a balance.
I just hope that I can find the strength to cope and adapt.
I would love to hear from others on how they have coped and any advice regarding diet and materials would be gratefully received.

Hello kevs1981, I'm also a new stoma patient. I had mine done about 4 weeks ago, so I'm very much still learning. Try and use as many different brands and types of products as you can to try and find which is most comfortable and best suited to you. Many of the companies send out free samples, which is very helpful. If you haven't already, try a skin barrier wipe, which helps with adhesion and also skin sensitivity and healing. Stoma powder is also useful if your stoma is still sore and bleeding like mine. Once you find a product you like and can trust, it will give you more confidence. There are also products that reduce smell and gas build up, and some bags also muffle noise.
Everybody on here is very helpful and caring, so you will get plenty of advice and people who will listen and genuinely want to make your life easier and happier. I will help where I can, but I don't have much experience yet.

Hi Kev and welcome to the site. There are many forum posts for you to read that one person cannot possibly express in a reply to your questions and concerns. Take some time and look through these forums; they will be very helpful. Like Catttters said, most suppliers will send you samples of some of their products, and they are very knowledgeable about what they have that will help calm some of your fears. Time is the answer; after all, it is a new way of life, but you can keep a positive attitude and make it through it! Some of us will keep our bags for life and never be reversed. So count your blessings.

I don't concern myself too much about what others might think or say; it is what it is, but it helps if you can find at least one person who you are comfortable enough with to confide in. It is always good if you make an emergency bag filled with everything you would need from a change of clothes down to your socks to a new bag and whatever else you use when you change your pouch.

You can also do a search to find many products that people have made to help with some of the odor and noise. We have many resources, so check them out. The best thing I learned early on was to keep a food diary to help me learn what was giving me any discomfort and try to note what was going on when you were eating that meal; talking while eating can give you gas even if the food source doesn't.
I have over 30 bookmarks of sites that I visit to research things related to stomas, and sometimes they add something new. Here is one of my favorites:

http://www.ostomyland.com/ostomyland/

You can do whatever your body (energy) allows - there is nothing to worry about as long as you make sure the bag is sealed and you do not pull muscles causing a hernia. Remember to drink and follow any necessary medical rules -- Please don't let the bag rule you!!!

Hello Kev,

I am also new to the site, but I have had my ileostomy for 3 years now. Since my surgeries, my life has improved significantly (less pain and bathroom urgency). There has been a lot to learn, but the ileostomy is just part of me now. Everyone has their own best solution, but I use an ostomy-guard (specifically the one made by StomaPlex, but there are others) on top of the bag over the stoma. I only found the guard after a year, and it allowed me to wear a suit properly and have a lot more confidence in physical situations. Generally, there is no smell from the bag, unless it has failed, and that has happened to me only three times in the last 3 years. An ostomy-guard also helps muffle sounds. Unless I have just eaten, I tend not to have a noisy stoma, but that is also different for each person. Generally, I need to change my wafer every three days. From what I have read, there are some who need to change much less often than that. It is another very personal thing as each stoma is different.

Don't be scared by the future, we live in a wonderful age where there are many choices for people with our surgery.

All the best,

Sam

Living with Your Ostomy | Hollister

Hi Kev, I am a permanent colostomate. Five years now and my life is wonderful! I no longer have the problems I suffered with for so many years. As far as your problems now, they are only temporary until you find the right pouch and products to suit your needs. I use Convatec one piece and it is very comfortable. I always use a barrier wipe with each change and in five years have not even had redness around my stoma. I change every three days and take a nice long shower without the pouch. The stoma cannot get anything inside it because it functions like a rectum; nothing can get in. Therefore, I swim almost daily. Living in Florida allows me that luxury. I do everything I did before the colostomy. I know people with our blessing who enjoy scuba diving, football, tennis, and about anything they did before their stomas. I say blessing because it is a blessing; it gave us life. Most people do not know I have this colostomy unless I tell them. Yes, I had some accidents in the beginning until I found the right supplies. I like the one piece because I can use a water bottle and empty and rinse the pouch while sitting on the john. That way, I have no odor and I can keep it on for three days. Showers are very necessary to keep down odor. There are other supplies I use like the waterproof strips that go around the wafer and a paste for any indentations around the stoma. I also joined a support group where everyone there had an ostomy of one kind or another. The help I get there is priceless. Contact the UOAA for a support group in your area. You will really be around people who know what to do and how to solve challenges. Good luck and God bless you on this wonderful journey of life.
Abigail

Hi Kevs1981, welcome to the site. I am also a fairly new ostomate...coming up on 1 year. So far, everything with work and non-work time has been okay. It did take some time getting used to my stoma and taking care of the bag emptying at work and at play. I learned my body's daily routine and do okay. Some of my friends are really fast at emptying, but they have been doing the routine longer. Like you, I also work very closely with people. If the stoma rumbles a bit, and it has, I say that I am hungry and my tummy is growling. So far, so good. As for the smell, I use a pouch deodorant every empty or at the very least every other. It reduces odor significantly. I like Na'scent and M9, but some of my friends like the other products better. Trial and error is the best way...what works for me may not work as well for you. Give yourself some time with the entire situation. It is a new way, and we need to be gentle with ourselves. I know that I did. If you have concerns about leaks, I keep waterproof tape with me. If something happens, I quickly tape the area for a temporary fix. Lastly, I am able to eat most foods that I enjoyed prior to surgery. I still shy away from raw veggies some. I chew more and gulp less. I was a fast eater prior to surgery. I also drink more liquid with my meal. Hope this helps Kevs1981. Keep posting...we are here to help each other. Have a nice day.