New to Ostomy - Need Advice on Supplies and Coping

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Robinson85

**Newbie**

I just wanted to say hello to everyone. This forum has a lot of useful information on it! I may not use the right words, but I just had surgery removing a section of my transverse colon due to a stricture. With the biopsies back now, it isn't cancer. I've been diagnosed with Crohn's Disease. I was told that there was a chance when I had surgery that I may wake up with a temporary ostomy bag :/ On January 2, 2018, it happened... I'm very unprepared and nervous. I stayed in the hospital until 1/7 and I've been home since. They recommended that I use the services of a home health aide, but I declined. I'm stubborn and I'm a medical assistant. I tell you what, no matter how much experience you think you have, nothing will prepare you until you actually are in this situation. I've been doing fairly well, just have high anxiety. I have a follow-up on the 17th to have staples removed and find out when I can return back to work "hoping for 1/22" because I'm not being paid and so far I'm being told at least 5 months before my reversal will take place.

I do have Ohio Medicaid. United Health Care is my PPO, and I've found out that they don't really cover much, but I'll take anything. Ostomy supplies are NOT cheap, and I'll take anything. It's also crazy nobody around me has the supplies I need. I'm being told that I have to do mail order. Do you recommend a certain company?

From day one, I've used Hollister supplies because that's what the hospital started me with. My products are:

18134 - 2 3/4 12" bags, 14104 - that I cut myself, flange is 2 3/4, 7805 - 2'' barrier rings

My insurance will cover 20 skin barriers, 10 bags, and 5 adhesive rings... Is this enough? I'm freaking out. Things are expensive, and I have 3 children :(

I've only used the adhesive rings because my stoma just seems like if you googled "stoma," it doesn't stick out. It sits back in my skin, and it's more oval-shaped.

Any advice would be helpful... as in the company I should use to order supplies. I have sent out for free samples and actually got a nice welcome kit. Is there anywhere that can help get additional supplies for free or at low cost? I do very well so far with it. I haven't had leakage yet. I have learned about pancaking lol. I sometimes feel like my 12'' bag is tooooo long and in the way. Does anyone purchase smaller or disposable bags and kinda switch out depending on circumstances?!! Another thing is I can't sleep well anymore, and I've been in a recliner since I've gotten home "to sleep, that is," not all day lol. I have been taking a gas pill daily to cut down on the noises that decide to come out of my stoma :) I tried to wear a tighter tank top today, but not too tight, with my bag horizontal, and it drove me crazy. The bag sticks to my skin, but I did like it not hanging down but wanted to try something different.

Bill

Hello Robinson85. Welcome to MAO and thank you for such an explicit post to start you off.  You are quite right when you say that nothing can properly prepare you for the practical experience of having a stoma for the first time and this is where a site like this can be very helpful  as you can discuss these things with people who have experienced them before. 

It sounds to me as though you are already doing many of the things I would have recommended, which indicates that you will no doubt get through this initial phase of the learning curve with flying colours.  I cannot really help withadvice on bags and suppliers because I don't use bags (I irrigate) and as I live in the UK, our suppliers would probabl;y not be of much use to you in the USA. 

What I can share with you is that in the past I slept in a reclining chair for more than six months  and very quickly found that it was more comfortable and more approriate than a flat bed. This meant that I got a good nght's sleep and maintained a useful position all night, without rolling over or interfering with the bag. When I eventually went back to using a bed, I decided to buy one that raises up at both ends and so gets almost into the same position as the recliner used to be. ( The best of both worlds!). I'm not one for medication but it might pay to take a short course of sleeping pills, just to get you back into a routine of sleeping.

I find that continually experimenting with different things helps me to find the best solutions for me for all sorts of minor problems and irritations. I have made loads of gadgets to make life that little bit easier and I've come to the conclusion that I need 'bespoke' stuff, rather than relying on the one-size-fits-all approach that the manufacturers need to adopt in order to make a profit.

I hope you get everything sorted to your satisfaction.

Best wishes

Bill

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LadyHope

Hello and welcome to MAO! Adjusting to life with a stoma does take time. I did not sleep well for several months either... I was a tummy sleeper and had to adjust to sleeping on my back and side. I wear my bag on an angle because straight down it was too long. Also, the noises do quiet down several months post-surgery. The early months are trial and error with new foods and how they work through your system. Good luck to you and keep posting your questions. We are here to help and provide our experience, strength, and hope. Take care. Sincerely, LH

mdq58

There used to be a place in Cleveland where you could buy supplies. If you call companies, they will send you samples. I've been using Convatec Natura Surfing Flexible for 40+ years. It has worked best for me of all products I have tried. I have always been an active person, so I need something which is durable and reliable. The Convatec has a paper tape that is part of the collar. If you have any questions, send me a note.

With good thoughts your way.

Mike Q

julianatheory151

See if you can make an appointment with a WOC nurse. Mine here in Minnesota gave me a month's worth of supplies each time I visited her. They can also point you in the right direction as far as ordering supplies, and maybe even where to get free supplies.

I know, personally, I have a TON of supplies that I will be donating once my ostomy is reversed in March. And I will start with my local WOC nurse to find out where/how to do this.

Good luck!

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Immarsh

Hi, you don't say if you have an ileostomy or a colostomy, but if the opening (stoma) was from the transverse colon, that means you probably have a colostomy. With an ileostomy, the entire colon is generally bypassed or removed, and the opening is made at the ileum, which is the beginning of the small intestine. Since the colon absorbs water, people with an ileostomy have a thinner output and a more continuous flow. Those with a colostomy have a thicker, more formed output, and the stoma is larger. Some people irrigate (google it on YouTube), which allows you to regulate when the stool passes. Since yours is temporary, it may not be recommended for you to do that. I have a lot of extra supplies here, but most of it is for an ileostomy. I use a 2-piece Convatec system with a moldable wafer. I don't know if that's available/recommended for a colostomy. My suggestion is to call the different companies and ask for samples. There were no wound care nurses back when I had my surgery 50 years ago... but "stoma therapists"/nurses are available now, and most of the big hospitals have centers for ostomy care and instruction. The hospital near me, ironically, has a wound care center but no ostomy care assistance. The closest ones are more than an hour away, but if I were having difficulty, that's where I'd go. Where I live in NJ, the Visiting Nurse's Service has ostomy care nurses/specialists, and I've called upon them when I had a young student in school in need of assistance.

If you have any other specific questions, feel free to write to individuals or to post anything specific. Best of luck to you.

Marsha

Mrs.A

Hi Robinson,

Welcome to MAO,

I had to chuckle when you wrote your stubborn, I think you're pretty brave! And already looking to get back to work, wow, you go girl!

It took me almost a year before I felt ready to go back to work.

Supplies are very expensive and I have this link that may be helpful- https://www.ostogroup.org/

As far as sleeping, you could try a large pillow tucked on your side to help keep you from rolling over. I know I sleep on my stoma at times and the worst that has happened is only if my output is liquid, then eww it's a mess. If your stoma is an "innie" (like a belly button), then a convex wafer is best because it's designed to curve inward toward the stoma. Here's more information on that- https://www.exmed.net/blog/ostomyhelp/post/2016/05/24/convex-ostomy-wafers-do-i-need-them.aspx

Flatulation, I wish I had a cure, the only thing I would suggest is to stop the carbonated drinks, drink flat ginger ale if you need to drink it.

Best wishes

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