Ileostomy Issues - Seeking Advice on Consistency and Skin Irritation

I have had my ileostomy for three years now and still have not gotten used to it. If I eat after 2pm in the afternoon, I am up all night having to empty my bag or in fear that I will have a break because a thicker consistency will break through the barrier. This ensures that I only eat once a day really and I am constantly hungry. Also, I have yet to figure out which product will work to make sure I don't have breaks due to thicker output and how to ensure my skin around the stoma is not sore and burning from a very liquid output. My stoma nurse was not as helpful as I would have liked and now I feel like I am alone in this. Anyone out there who has had an ileostomy for a while and has mastered these issues? Any suggestions would be very much appreciated.

Lauren,

I am sure that you will get a lot of replies on this and many good suggestions. I would think that after three years you would be a bit more used to it, but again, everybody is different. It sounds though that you are putting yourself through unnecessary discomfort. First, I have found that the more watery the output, the greater the chance of leakage not the other way around. To help with this, you might try a larger volume output appliance, especially when sleeping. I use the two-piece Convatec appliance and Durahesive. For many years I used the two-piece Hollister system which was quite problematic. I have found the former to be so much better, like night and day. It is hard to imagine that you can't eat after 2 PM! Something is wrong here. Obviously, the kinds of and combination of foods that you eat will affect the amount and consistency of your output, but it still should be manageable long after 2 PM. It sounds like you have to check on the size of the opening in your stomahesive or whatever wafer you're using. If it is the wrong size, you will undoubtedly run into trouble such as the leakage that you mention and the excoriation and burning around your stoma. Check on these. I have had my ileostomy for 33 years. Again, you will get a lot of help in here. Good luck.

X_

I think you should eat small meals during the day instead of one...applesauce, marshmallows, and yogurts help with the consistency making it thicker. I had problems with leakage under the wafers. Hollister brand was the worst for me. I am now successfully using Convatec 2 pc durahesive wafers bags. I change the wafers every 4-5 days and change bags every other day. I also use barrier rings around my stoma to prevent leakage. Does your hospital have an Ostomy Support group? That has really helped me out. I'm sure you will get a lot of advice on this site. Good luck!

That's not been my experience, Lauren. Thickness of content is not related to breakage. Xerxes' suggestion about a larger pouch is spot on. I can only add that you may need to train yourself to sleep only on your back or on the side opposite your stoma placement. I wake up a few times during the night and automatically check my bag. If it's at least a third full, I am off to the bathroom. For what it's worth, I use Hollister and am completely satisfied. I can tell you for sure that one meal a day is not the answer. Good luck in resolving your issue.     PB

Hello lauren.
I have a colostomy so I cannot comment on the problems associated with the liquid output etc.  For many years before my colostomy I was chronically incontinent of feaces.  Having  'managed' this as best I could with having just one meal a day, it needed some adjustment when I could eat whatever and whenever I wanted.  Logic would tell us that having more smaller meals spread over the day would be 'better' for us. However, I never came amiss with my one-meal regime and it helped with keeping my weight constant.  I experimented with the food intake and found that a small amount of oats  mixed with dried fruit (like they use in muesli) helped as it has a slower digestion rate than other foods so I felt less hungry.  In your case, you say you are feeling constantly hungry. This would certainly indicate that the one-meal approach is probably wrong for you.
The suggestions of bigger bags etc sounds good to me but what about barrier sprays or wipes to avoid soreness. I use a spray and dry one layer off with a hairdryer before applying another on top of the first.  This has diminished the soreness considerably.

Best wishes Bill

Living with Your Ostomy | Hollister

Hi Lauren, sorry to hear you're having problems. Someone mentioned to eat smaller and more meals a day, which is what I do. My last meal of the day is at 8pm in the evening because I work second shift from 4-12 midnight. So, lunch is at 8pm. Also, an empty stomach creates more gas and the ballooning effect that makes it harder to sleep. Good luck, Ron in Michigan.

Lauren,
Have you always had issues? I too had leakage issues and burned skin issues until it got so bad I had to stop working and apply for disability......but what I found at the wound clinic was this.....use stoma powder when the skin is red or raw, spray area with Hollister medical adhesive, use Hollister adhesive paste around opening of bag, use barrier ring around stoma before placing bag....and for Pete's sake....hold the area with slight pressure so our body heat activates the adhesive.

http://www.coloplast.ca/en-ca/productscs/ostomy/productfamily?commcategory=Ostomy_Accessories(Coloplast) cat=Canada

There is a link for free samples to help with leaking. I use Coloplast so I know this and it works for me.
I am sure other suppliers have good products too.

We all are different - I went to a wound clinic with an ostomy nurse specialist, and they really helped me out. It did take a few different tries and products, but eventually, it helped.

Lauren, I have issues with air building up in my appliance and this has caused leaks before while I was asleep. I use Hollister 2-piece system and I also use a barrier ring which seems to help fight the leakage issue. The idea of using a bigger pouch is spot on, but I also wanted to see if your issue is from the liquid output or do you have air buildup? I use a vented pouch and this has made such a difference not only while I sleep, but also during the day.

I have discovered that taking Metamucil during the day tends to thicken my output. It took some experimenting to determine how much to take but I've got it down now. If I ingest a lot of liquids or want to increase the time between "dumps" I just take some Metamucil. I have found that it works well in the evenings but I still have to get up at night. Be careful not to take too much as it can have the opposite effect you are after (blockage). It does not cost very much and might be worth trying for you.
As for the leakage problem, Hollister pouches were a big disappointment for me. I have been using the Cymed Micro Skin pouches with the Hollister Eakin seal rings (barrier rings) for over two years now with hardly any problems. I highly recommend trying these.

If you eat a lot of carbs (pasta, rice, bread) or drink carbonated drinks - this will cause major gas in the bag.....once in a while if I eat carbs late, I wake up with my bag hard as a rock from gas......I call this my girl morning man like boner....

Hey Lauren,

I've had the ileostomy for 3 months now. It has not been easy. Just like you, I do struggle with burning and discomfort. Someone advised me to try Friar's Balsam when I change the bag instead of the barrier. It heals the skin and also has a sticky residue when you apply it, so the bag then attaches securely. As for eating, I must say that I am eating now better than in the last 10 years of my life. I also agree with Xerxes that the more watery the output, the greater the chance of leakage. I use the Coloplast 1-piece ostomy bag and found that I have to empty it quite a few times a day. What I do then is rinse the bag out with a few bottles of water, and I make sure to empty it before I retire for the evening. The bag is hard from gas in the morning, so then the ritual for the day starts again - (I have to laugh at Moonshine's comment because I've had the same thought when the bag blows up like a balloon).

I do wish you well.

I've had my ostomy for 3 years. This past year, I've finally got it under control. Use Coloplast wafers and Coloplast Brava protected sheets under the water. This will help secure the water. And I swear by Coloplast Brava elastic barrier strips. They are strips that you stick on the edge of the water that covers the outside of water in a circular pattern. I have had leakages only because I laid on my side when my bag was full. Other than that, no leaks and secure. I play all sports and am confident my bag is on tight. Coloplast makes great products. Call them and speak to a rep. She'll tell you all about what I'm talking about. You'll be okay.

I've had Rosebud for over 2 1/2 years now...developed a routine...simple but it works for me...it was hard at first to have the output, didn't want to eat too much for fear of a blowout....thick output with gas causes blowout...watery output causes leaks...

Just had to get that part down first!....
So...watery output...eat some potato, baked or mashed, baked fish fillet, chicken breast, or oatmeal, banana, eat a couple marshmallows, rice or noodles, pasta, toast and peanut butter...cracker and cheese...eggs and bacon...
Output too thick...drink a little juice, some broth, some warm tea, eat a fruit cup, some melon, cooked veggies, like carrots, green beans, veggie soup...try to get to where you can eat regular meals with chicken and veggies, ground meat dishes...etc
Go empty 15-20 minutes after eating...never let it get full...never let it get too watery or too thick...this takes time and practice...but makes life a whole lot easier...and gives you a little peace of mind...

I have been using 2pc Hollister with seal, cut to fit wafer...no problems...once I got it right for me...clean dry skin...stoma powder, dust off excess...warm then apply moldable ring to the cut wafer first...then apply to skin, peel off paper and apply fabric tapes....., press down for one minute with empty Charmin tube around stoma...then cover with fingers around wafer and press for 1 minute...works for me

I cannot use pastes, sprays, or wipes of any brand...sensitive skin...made my skin red raw and weepy...my skin stays cleaner and less chance of leaks...ring stops leaks but removes easily and cleaner when making a change

Remember to eat protein in your diet...keeps you full and digests slower...I was told our body needs time to learn how to process our food a new way....

Add 1 new food at a time to see how it works for you
Try to avoid carbonation...I drink tea, water, coffee, milk and veggie and fruit juices....

Drink protein shakes for extra nutrition...after all this time...I have now added most kinds of food to my diet and know which ones will be a problem...always chew chew chew
Take a vitamin and take a Beano before any gassy food, and a Gas-X if you need it later

I had to get up 3-4 times a night at first...after a few food adjustments I now only get up one time...I eat a snack before bed sometimes and have no problems

I wish you the best of luck...and remember, good food...good nutrition is needed for healing and for your body to re-learn how to digest food...start small...a few wheat crackers with cheese and a small glass of juice...a small yogurt...a fruit cup and cottage cheese...a piece of toast with peanut butter and a few slices of banana...just a few suggestions for a simple light meal to try...

Hope some of this helps...Kathie

Lauren,

Many great comments here.

I've had a colostomy since 1976. Fortunately, products have improved greatly since then. What works for me is the Convatec Surfit flexible two-piece system. I use the smallest wafer size that fits my stoma and the smallest pouch too. Sure, you might have to empty it more often, but the smaller size means less weight tugging at your faceplate. My stoma sits right at the waistband of my pants. I eat a normal 3 squares a day. I generally change my appliance every 4/5 days. The paper tape around the Convatec product means I can swim, shower, ... without worry. I'm a side sleeper. If you eat regular-size meals, no problems. However, foods like nuts, corn, and beans can cause leakage issues if you don't chew well. The skin around my stoma still looks good, and I haven't had any problems. Ostomy nurse advice can be problematic, as they never wear the products they recommend.

Hope this is useful. Send a note if you'd like more info.

Mike Q

I've rowed competitively, rode horses, swam, ..... no problems. I'm a side sleeper. Deep breath and relax

Just been reading through these and I have had all of these problems. I find the looser my output is the better. Even if I have a bug and it's like water I have no leakage as soon as it's firmer my problems start and I have had my ileostomy for nearly 12 years now. Pancaking it's called just pushes my pouch off. Ruined many sheets. I also like to use the smallest pouch as less tugging. I find potatoes and vegetables the worst as they make a thicker output. I try not to change every day as it's better for my skin. I was told to be careful of nuts and mushrooms as they don't digest. Plenty of fluids, that's all I can say, and not to eat after about 6 as your digestive system starts working through the night. If I have a light snack before bed it starts my digestive system off so I try not to. Xx

I have a very liquidy output, which is a nightmare to control leaks. I do wear a seal or washer under my baseplate, but even these are just not sticky enough. I've had raw, sore skin just around the stoma. I've had this problem on and off for years now. The trouble is....nothing will stick to wet, excoriated skin surrounding the stoma. After just changing a bag...I've only got to bend over and my liquidy output seeps under the seal. It's only gotta be a tiny seep...but it spreads, of course - and hey presto! You've got a leak! Yes, I've tried the powder, barrier wipes, sprays, Friars Balsam, Calamine Lotion. You name it, I bet I've tried it (so far)....and nothing works. That said, I don't get leaks past the seal because I have found three superb one piece bags that do not let effluent seep through them (i.e. past the seal)....they are: The SALTS XND1352 (light Convex); The WELLAND one piece, (Flat) with Medical Grade Manuka Honey in the flange; and The B Braun Flexima (or Softima) Flat one piece (Eric - Vegan Ostomy on YouTube has reviewed the B Braun one and many others on YouTube). Do check out Vegan Ostomy reviews - there's loads and they are superb - and very thorough. Eric reviews all types of Stoma Appliances and Accessories. I'm still looking for a super sticky washer (seal). I'm currently trying out the WELLAND Washers, with Manuka Honey content. Seem pretty good so far. I have no luck with the Eakin ones....they do lift up on me, even if well warmed up before application. Any ideas folks? I find the stool thickening sachets do work, by thickening up watery output. I put one or two sachets in at each bag empty, and they work a treat. Drink plenty of water. Water drinking does not make your output more watery. I don't drink enough - but I'm trying to. There is a big risk of developing Kidney Stones if you have a Stoma, due to the lack of absorption of Water and Salts from total or partial removal of the Large Colon. Nearly all Ileostomists (no large colon) suffer from (unbeknown to them), from Dehydration. I eat right up to seven at night. I empty before bed and usually once in the night. I chew my food well (after suffering from a couple of blockages) and avoid all the blockage culprits ....nuts, raw hard vegetables, coconut, lettuce, sweetcorn, mushrooms, etc. Just think....if what you are eating doesn't dissolve easily, chew, chew, chew if you must eat it. I've had expelled mushrooms as if they've never been eaten!! All the best to you all. Please let me know what will stick to raw skin surrounding the stoma. Xxx

Further to my last comment.....the Lovely Sensura Mio appliance leaks on me. I just love the bag, but the flange is not sticky enough and lets effluent seep through past the seal - and quickly. Before I know it, I've got a complete side leak onto my clothing!! Others have this problem with the Mio. Shame!! Beautiful bag, spoiled by its flange and bag filter.

Hello, I'm Steve. My stoma was reversed a few years back, but I remember all the tricks to get through!! Would be good to hear from you? I was in Northumberland this year. I stayed in Berwick upon Tweed and loved it. Where are you from? Steve x

Hi, I am from Ashington in Northumberland. No, I don't really have any issues. Thanks anyway. If I control my diet, I am fine xx

That's good I found if I had a long day out planned that eating at the end of the day was a great way of not having any embarrassing incidents. You know what I mean! LOL! Is yours temp? X