Struggling with Ostomy - Seeking Advice for a Better Quality of Life

I am finding having an ostomy hard. I have a loop ileo due to emergency surgery. Jpouch gone bad. I'm finding it worse than my jpouch. I'm constantly in the bathroom having to empty, I'm leaking, and I'm not sleeping, waking up 4 times a night at least because when I turn over it wakes me and needs emptying. I'm always thinking about it. Trying to drink enough! What can I eat? What can I wear? Nothing is comfy anymore. So stressful! How do you live with this? I was very active, how can I go places, do things when I'm tired, leaking, and always in need of a bathroom because this darn thing won't stop producing for a minute. How do you travel? I need to make peace but not sure how?

Sorry to hear about your issues. Been there. Done that. Got most of the wardrobe.

I got a permanent ileostomy 3+ years ago. It was a little rough at first. Once I found the right ostomy product and procedure, it got much better very fast.

I suggest getting samples from several companies, Coloplast, Hollister, Convatec, etc. All LOVE to send samples to prospective customers - free! All have good and bad points. Ask for CONVEX skin barriers. See what you like.

I have a very lovely, protruding stoma on very flat skin, but 3 months after surgery with few problems, I could NOT get a flat barrier to seal - just like you describe. Nothing I tried would work. To make it worse, we were in Nevada visiting our then 6-month-old grandson. The convex supplies I ordered 2 weeks before the trip got backordered. I was changing skin barriers almost daily, and FOUR times one day! I had to buy supplies out there, off the shelf, and still could not get convex skin barriers. My skin was RAW. WHAT A NIGHTMARE!

When I finally did get the convex barriers, the problems diminished significantly. I do still have occasional overnight blowouts. I have not had any other leak issues in 2 years.

Possible causes of leaks.

Wrong skin barrier. Try a convex barrier.

Use only "pure" soap. Liquid body wash, soaps with body lotions, skin softeners, etc do not wash off cleanly, and the residue will hurt adhesion.

Make sure the skin is very clean and very dry. A little water or stoma output, even if wiped off, destroys adhesion.

Warm the skin barrier to body temp to improve adhesion.

I found Adhesive Remover absolutely necessary for best adhesion. Before I used it regularly, I would occasionally get overnight blowouts from ballooning. This was usually a skin barrier failure. Since using Adhesive Remover every time, I have fewer blowouts, and they are now between the pouch and skin barrier - pouch replacement only!

Ballooning is my biggest issue. I found a product called OSTO-EZ-VENT by KEM Enterprises. This is a small plastic piece you stick to the pouch. Punch a hole in the center of it (I use a toothpick) and the gas can escape the pouch. I get them from my ostomy supplier. I may stick a toothpick in my pouch 3 or 4 times a night, but then I do not need to get up.

My appliance choice is Coloplast 2 piece Adhesive Connection Sensura Mio

My current procedure for ROUTINE changes is: For emergency, follow as closely as possible.

Do it first thing in the morning before you eat or drink anything. This is your best shot at a quiet stoma.

Remove the skin barrier, wipe the area clean with toilet paper, then CLEAN THE AREA WITH AN ADHESIVE REMOVER WIPE. Big ones are better.

Take a shower. Clean the area around the stoma several times with soap. I use Dial exclusively. DO NOT USE a soap with extra stuff like body lotion or cream. Dove or Camay are absolutely forbidden! The additives prevent tight contact. RINSE THOROUGHLY.

As soon as practical, fold a sheet of toilet paper in half, and wrap it around the stoma. ANY LEAKAGE FROM THE STOMA ONTO THE SKIN WILL DESTROY ADHESION! CHANGE THE PAPER AS NEEDED. I do this and all steps that follow in front of my sink. I have a small plastic tub by the sink for trash.

Dry around the stoma as best you can. I have a dozen cheap white washcloths dedicated to stoma care. Keeps me out of trouble with wife.

I then use a hairdryer to completely dry the skin around the stoma. It's useless on my head, but works well for this! Wet skin also inhibits adhesion.

I apply a liquid skin protective barrier. If needed, powder would go on now, then more liquid. ALLOW TO DRY.

I use a paste around the skin side of my barrier to stop leakage onto my skin around the stoma. I warm the skin barrier some with the hairdryer. I want it about body temperature. I now remove the toilet paper and QUICKLY place the barrier over the stoma. I try to not touch skin immediately, but rotate the barrier 90 deg each way to help distribute the paste.

My stoma is 1 inch, and I have a 1-inch white plastic pipe coupler which I place over the stoma and press the barrier in place. This applies nice even pressure near and around the stoma, helping the seal. I press RADIALLY - from the center out - to stick the barrier to the skin. For a two-piece system, The hose coupler also acts as a chimney to protect the landing area for the pouch from stoma output. MAKE SURE THE LANDING AREA HAS REMAINED CLEAN. CLEAN IF NEEDED. As quickly as possible, attach the pouch. If it is an adhesive contact, be very careful to press from the center out. If you press around the seal, you will often not get it absolutely smooth. This leaves a crease and a guaranteed leak.

CLOSE THE BOTTOM OF THE POUCH!! Been there. Forgot that.

Sit back and rest! You deserve it!

Hi Susan, regarding the constant production, try eating a low residue diet for now such as applesauce, chicken, pasta, rice, potatoes, yogurt, sweet potatoes, completely cooked veggies, white bread, eggs, peanut butter (unless you are allergic) a few marshmallows, apple juice, no caffeine products. Some people tell me yogurt helps too. Yogurt makes me produce. It sounds like your body is adjusting to the ileostomy and removed J-pouch and may take up to 6 months - one year to settle down. Keep hydrated also. It has been 2 and a half years for me and I still get up once a night to check on my pouch.

Regarding clothing, a person can usually wear most of the clothes they wore prior to surgery. I kept the clothing a little loose in the beginning post-op because of my incisions. Clothing was not comfortable. Try leggings or high-waisted items. Also, yoga pants are pretty comfy as well as dresses without a tight waist. I also wear lots of skirts because the waistline somewhat supports my pouch system. Skirts also allow for air and production in the pouch.

Leaking is frustrating. If you are going to go out for the day or half a day, I would put on a new, clean pouch, check everything to make certain all is ok, secure and go. Bring with you waterproof tape and a change of undies just in case. If you happen to spring a leak, clean up and apply tape at the leak site. Add extra for additional security. I like the hytape - pink stuff. It really sticks to the skin and is waterproof. It should keep you secure until you are able to make the change. Always remember, you probably already know this, to empty at 1/3 full. If you go longer, there is a risk of the flange pulling away from the body and causing a leak. I also would make a habit of just going to the bathroom to check on production level. I did this routine in the beginning because I really could not tell where I was with the contents of my pouch. It took some practice (learning curve). I still practice this routine if I am unsure. Ask my husband...LOL. Take care Susan and be gentle with yourself. We have all been there and it takes time to figure out what works best for you. LH

I also never got a good night's sleep EVER, so I don't really know what to say. Just try eating marshmallows maybe before bed, and you can buy Gastro-Stop or Imodium. Me saying that I need to get my stuff together, get a script to get 10 boxes of Gastro-Stop or Imodium, either same same for me to get 10-12 boxes. I do need a private script as they cost me about $10, which does add up. Getting a private script costs $6.10 for as many as I need :) Hope I can read some of the advice above too. I seem to jump into these way too quickly. MOOZ

Hi Mooza, welcome back! Haven't heard from you in a while. I hope all is going well. Take care. Talk to you soon. LH

Words of Encouragement from Ostomy Advocates I Hollister

I have had my ile bag since 2010-----truthfully I don't really eat after 3 or 4 pm ----- then I eat like I'm going to the chair when I wake up.

I also avoid carbs.............and I am Italian and have had to give up pasta as a trade-off for a gas bag..............

Oh well ---- and so now this is what it is.

Hi Susan,

I'm Marsha, and I've had my ileostomy for more than 50 years! I was 15. Back then, there were really limited supplies, and most were not meant for a child. Products have improved, so follow the advice given and try different systems. I use a two-piece product, with a convex flange, from Convatec. I find two-piece works better, since you can check on your stoma, and do repairs, without removing the flange.

As far back as I can remember, I tried not to compare what life was before and after. Perhaps that was because I was only 12 before I got sick with ulcerative colitis. ..... so for me, the comparison is between the sick years and months in the hospital, vs. living with an ostomy, which gave me my life back. Be patient, and try different methods. People gave you a lot of advice, but the best is trial and error, to see what works for you. I keep it very simple. I NEVER use soap on the skin around the stoma. I find that for me, it's an irritant, softens the skin, and inhibits adhesion of the flange. I started using adhesive remover, but just for the tape residue above the wafer tape. I find it too oily and difficult to remove from the skin. I use very hot water on the skin, and then very cold to close the pores. I use a skin prep, and then stomahesive powder. My stoma is now irregular in shape and pulls back into my belly, making it very flat, so I began using a convex flange (which really helped) and these days I put stomahesive paste on the flange, just under the opening. It's helping to protect the skin and prevent leaks...and it fills in the gap. I then put a very durable tape (scanpore) around the circumference of the wafer tape, just for more protection and security. I'm able to get 7 days of use during most of the year, but need to change more often in the summer, especially if it's very hot or if I swim a lot. Once you figure things out, it will get easier and better, and one day you'll realize that it's "just a part of you". Post more questions, or write to individuals if you need to vent or ask questions. Best regards, Marsha