New to ileostomy - seeking advice/friends/help/sanity lol

I am sorry to start a new post, just easier than trying to find answers in older ones. I am 32 and had surgery 3/4/14 - ileostomy. I had suffered with Crohn's for 10 years, then developed cancer for which I am about to undergo 6 months of chemo.

I have always been a very positive person but am struggling with this situation. And I just want to get back to work as a teacher.

Basically, I just want any good, general advice.

My output was high, but after St. Mark's solution is lower now. But it is still watery most of the time. I also have severe gas problems overnight, I feel like I am going to float away my bag is so full of it lol.

Bags sticking are also an issue I am having to use convex bags which are so sticky to remove, uncomfortable. If I try the normal, lighter bags they come unstuck around my stoma and I get leaks.

I realize there must be so many of these posts lol, and everyone has similar problems, but I really need to start getting answers.

Also, things like how often do people change one-piece drainable bags? Does a bag need changing after a shower? Should I be showering with no bag at all? Are covers useful? Are caps useful? How do I know which bag is best and which products to use? As good as stoma nurses are, they are busy and do not tell you everything.

If I get any replies I will be eternally grateful. I know people say stay positive but it's really difficult when a few weeks ago I had a normal torso and didn't mind having a shower lol.

Sounds like you have an ileostomy............I have had mine since 2010......Showers are okay, but I love when it's bag changing day and my skin can breathe...I use a one-piece drainable pouch......I dry my bag with a towel or blow dryer

I have no idea if what I am doing is right or wrong, all I know is it works for me. April 12, 2012, my surgeon removed four masses of cancer and left me with an ileostomy. One of the rookie nurses showed me how to change the bag, but I was more concerned about sitting, which was difficult.

I went home after 5 days in the hospital and, of course, experienced the embarrassment of the clip coming off and the whole bag coming off. And driving without stopping until I was home where I jumped in the shower clothes and all, I did take out my wallet but left the money. I usually have two bags going, one that was wet hanging inside the shower with a clothespin, which is ready for the next use. I empty the two-piece Coloplast or Hollinger bag and then remove the bag while taking a shower and after rinsing it with a high-pressure hand shower, I hang it up to dry. I pay for all supplies so I'll reuse when appropriate. I went through chemo and radiation without any side effects, had a few after-effects. I took the prescribed steroids, a bit sleepless, a bit hyper, and three days of anti-nausea, but only because the oncologist insisted. I encountered a slight onset of nausea and used a trick from working on a ship and immediately ate, nausea gone. In order to make the flange stay, I use a heavy-duty medical tape around the edges ("Strappal"). This keeps the flange attached and leaks if and when they occur to a minimum. Now if it occurs during the night, I just tape a couple of paper towels around the flange to absorb any leak after they occur and go back to sleep. The leaks are that small that waiting till the morning is feasible. I use a hairdryer plugged into a GFI outlet and replace the flange while sitting on the edge in the bathtub. I make absolutely sure that both the skin and the new flange are warm and dry. I use the cap of the shaving cream to apply pressure to the flange then use the medical tape all around to provide extra adhesion. Don't hesitate to "wink" at me or ask here should you require additional information. Oh, make sure you have an emergency bag with appropriate supplies, including a shower curtain to place on your car seat should that be required.

Ed

Hi, I am new here too. :) I have a colostomy now, but in 2011, I had an ileostomy for 10 months. I called it Pooey Louie. Sadly, I had to have it reversed because I lost too much weight from it being too active. In my experience, the St Marks Solution is good. I also drank more Powerade and Gatorade than water. I saw a dietitian, so I recommend that to you. Also, there are a lot of foods that can slow the output. Try pasta, marshmallows, and sponge cake (if you haven't already lol). Avoid foods that gave you gas before the op as they will give you worse gas now. I pop a wind tablet into my bag each night because I suffer from a lot of gas too. I also take charcoal tablets and Buscopan (stomach ease) regularly, which helps also.

Hang in there, things have a way of working themselves out eventually.

Thanks, I don't know if 7 weeks is still early days or not but I am so frustrated. What is a wind tablet please?

Thanks for the reply. I just change mine whenever I have a shower. Not showered without it in yet as I don't trust it to behave lol. There is just so much to learn. How do I choose the right bag? How do I know if I need to put anything on under my bag to make it stick better and be less sore? Do I need to use a hair dryer on the bag like a lot of people say? The convex bags I am using are so sticky it hurts to take them off. I tried the normal bags a couple of days ago which are so much nicer to remove, but it wouldn't stay stuck around my stoma :-(. I feel out of my depth!!!

Hi, thank you for your long reply.  

My main problems now are watery, yellowish output and gas. I guess time will tell if it is going to settle down. Just feel like it controls me at the minute though.  

Hi, thanks for the reply :-). 

What is too active? Mine seems to do a little bit every second of the day. I haven't named mine yet, am still too mad I have it lol. I might speak to nurses about a dietician. What are wind tablets please? 

Hopefully it will get better, it's all happened very quickly (only found tumour two weeks before op). I just wish output would thicken a bit, then I can start to think about types of bags, covers etc. Things that will make me feel better. I do love that I can eat marshmallows constantly now though haha. 

Watery output is normal for an ileostomy, and color is dependent on the food you eat. Wind tablets are tablets to reduce gas output.

http://www.webmd.com/drugs/mono-8265-SIMETHICONE+TABLETS2FCAPSULES+-+ORAL.aspx?drugid=9208 drugname=Gas-X+oral

I don't worry about gas, but you can change your diet to minimize gas. Pasta, rice, potatoes, peanut butter, marshmallows will reduce the liquidity of your output, but again why worry other than that it may increase the potential of leaks. As far as activity, unless you don't eat continuously seems to be normal.

I seem to be the only one who has problems keeping their weight down. I was 220 lbs prior to surgery, down to 185 after surgery, and back at 215 and watching my diet trying to prevent my weight going higher. Other than metformin for diabetes (most of the times) I take no medicine.

Guess attitude is primary.

Good luck,

Ed

Hi Scord, the hair dryer is used to warm the adhesive on the flange and to warm the skin where you're going to stick the flange. This increases adhesion and reduces the likelihood of leaks.

If you find the flange is painful to remove, be careful how you are pulling it off — try gently lifting up the flange bit by bit with one hand while the fingers on your other hand hold down the skin next to the place you're lifting.

Be aware that some companies provide a choice of adhesives; for example, Convatec has one flange called Stomahesive which is easier to remove, and another called Durahesive which is more difficult to remove but it reduces the likelihood of leaks.

Thank you for the reply three :-).

I got these sticky bags because I needed the convex type, but they are such a nightmare, especially now I have hair again lol. The other bags I had before, but which kept leaking, were a breeze to get off, but they would not stick around my stoma, which is a bugger lol. The bottom and right of my stoma are quite shallow, almost flush to the skin, which may be why.

Thanks for the tip about taking it off. And if I go back to the other bags, I will try a hair dryer. I definitely do not need any extra stick with these haha. I see my stoma nurses this week, so no doubt will discuss bag types then.

Thanks again

Are there any specific tablets to help with gas? It's one of my big issues right now. Do peppermint tablets work?

Hey Scord, sounds like you're going through a bit of a rubbish time right now. I also have an ileostomy and I also have had big problems with leaks and stuff. My stoma is almost flat so I use a convex bag from Salts which is tackier than some of the other bags and helps to stop the leaks. You don't need to use a hair dryer to warm it. To remove it, I use Appeel adhesive remover spray (just lift an edge slightly and spray, wait a moment, then spray more if needed - the spray melts the tackiness and the bag literally falls off). I also use Wipeaway wipes to remove any remaining adhesive (but only because I can be allergic to it so I need to make sure it's all removed from time to time), then I wash the area with soap and water. I do all this in the shower so that a) my skin can breathe for a while and b) it doesn't matter if my stoma is active - I just rinse everything down the drain. I know some people will think that's gross, but they're probably not the same people that are trying to change a bag when it's shooting liquid up the walls every 2 minutes! I have had to change my diet quite a lot since having my stoma in order to cope with blockages and high output. I love my fruit and salad, but I find now I mostly have to have cooked veg - salads and many fruits just make everything too liquid and then I get more leaks. Marshmallows, jelly cubes, and wine gums are great standbys, and I find cooked porridge oats also help to keep things a bit thicker. For the gas problem, I either try and avoid gassy foods (onions, beans etc - the usual culprits!) or I "burp" my bag. This is when you undo it (lying down) and tip the contents to the top of the bag so the air can come out of the bottom, then you do it back up again. I can almost do this in my sleep now! Best of luck with your treatment. Rosa

Thanks Degurosa,

I will start by saying nice pic, you don't look your age ;-) lol.

Then I will say thank you for taking the time to reply. The leaks have definitely calmed down since using these sticky convex bags, but I just don't like them haha. I use the spray and wipe and stuff too, a lot of spray! I guess finding the right bag will take time.

Well, the gas can't be my food as I am still on a strict no-fiber diet, no fruit or veg or anything lol. I don't know why it's so bad. Thanks for the tips though.

I just this second got out of the shower actually haha, but I'm not at the stage where I am confident to take the bag off yet, so I am about to go change the damn thing. It never wants to stop long enough to let me, cheeky thing. I am sure it knows lol.

I will persevere and hope it keeps getting better and I can be active again without worrying.

If you ever want to chat, message me :-)

You don't have to change your bag after you shower (only if you think it needs it). You can shower with the bag on, it just needs to be dried.

I use a pouch cover, it is more a matter of taste.

Hi, thanks for replying.

I wish I hadn't changed it, it wouldn't stop for me and now I am sore :-(. Lol.

I will look into shower covers when I know what bag I will be wearing consistently.

Really hope it settles down soon, especially as I have 6 months of chemo to come!

Hi scord

Why don't you get onto the chat, and speak

to us, you will feel better, believe me I know it.

I was like you until I got onto chat

and made friends

Regards

Midgey

Re: Chemo... During chemo, my body and mind felt heavy and dull. I found Reiki (a form of energy healing) was extremely helpful in lifting this heavy feeling from my body and mind. (Check Reiki on Wikipedia if you are not familiar with it). I also attended healing meditations which also were a great help.

Dear Scord,

1. With an ileostomy, you will have mostly "loose" stool. An ileostomy is performed in the

small intestine, which is where most nutrients are removed from the food you eat... this area

has nothing there to absorb moisture. Hence the loose stool.

The colon (large intestine), if you still have one, is responsible for absorbing most moisture/water

from the food we eat, making the stool firm.

2. You can shower or bathe with the appliance on or off... Water will not affect your stoma. You

can also swim, if you're so disposed. Many men in my support groups are swimmers.

3. Here's an article I hand out to new ostomates I visit in hospitals; it deals with pouch changes.

Steps For 'Properly' Changing Your Pouch

Wash your hands well and have all equipment available.

***Gently*** remove the pouch. ***Push the skin away from the seal.***

***Do not pull the ostomy wafer away from your skin.***

Wash your stoma and the skin around it carefully with soapy water.
* Do not use a soap that has perfume or lotion added to it.
* Use mild soap, such as Ivory, Safeguard, or Dial.
Look carefully at your stoma and the skin around it for any changes.

***Allow your stoma area to dry completely*** before connecting the new pouch.

Trace the shape of your stoma onto the back of the new pouch and barrier or wafer

(wafers are part of a 2-piece pouch system).

* Use a stoma guide with different sizes and shapes, if you have one. Or, draw the shape of

your stoma on a piece of paper. You may want to cut out your drawing and hold it up to

your stoma to make sure it is the right size and shape.

The edges of the opening should be close to the stoma, but they should not touch the stoma itself.

*** (leave 1/8" leeway).***

Trace this shape onto the back of your new pouch or wafer. Then cut the wafer to the shape.

* The skin around your stoma should be completely dry and smooth.
There should be no wrinkles in the skin around the stoma.

Remove the backing from the pouch. Make sure the opening of the new pouch is centered

over the stoma and pressed firmly onto your skin.

* Hold your hand over the pouch and barrier for about 30 seconds after you have placed it.

This will help seal it better. Warming the skin also helps.

4. You can find a "Tips" Booklet here... It's titled "The Ostomates Owner's Manual" or

'Techniques You Should Know When Addressing Your Stoma'

http://www.premiersystems.net/owners.manual.pdf

I hope this helps.

Hi visitor,

Thank you for that :-). I am not sure I will ever be confident enough to shower with no bag, as much as I would love to free my stoma for a bit and have no bag on lol, because it never seems to stop functioning.

I will read the article you sent :-). I guess it is just going to take time getting used to my new life. I just hope (after chemo) I can be active again.

Thanks again.

Scord,

It's a learning process... I felt much the same. After awhile you get used to it.

You know "you have to crawl before you can walk."

Things will get better as you gain confidence day-by-day.

Rome wasn't built in a day... M.L. King Jr. once said "If you can't

run then walk, if you can't walk then crawl, but whatever you

do you have to keep movin'."

I run 2 support groups and everyone with an "ostomy" goes through

this learning process. And as I mentioned, once you gain that confidence

the ostomy becomes second nature to you. It's the "initial learning process"

that takes time... Much like math. and learning times tables - pain-in-the-ass

at the beginning but once mastered "a piece of cake!"

If I can be of any help don't hesitate, I'm not called "The OstomyVisitor"

for nothing!

GOOD LUCK.

Haha, thanks. But be careful what you say about Maths, I am a Maths teacher :-P haha.

Thanks again. I am guessing 8 weeks is still regarded as early days???

Hi, I only just read your post. I've been in the hospital for almost a month and have come home for a couple of weeks' rest. Then I will be going in for further surgery. As you don't know me at all, I am a registered nurse, but I am also an ileo/cancer/chemo patient. I am having my fourth surgery on the 2nd of June.

Everything you described is exactly the same as I have encountered. You have been given excellent advice so far, and I can't add much more than to say whatever you do, you will have watery, yellow output while you are undergoing chemo, etc. This is also made worse by eating fruit, fizzy drinks, and certain vegetables. I would recommend that you get help from a specialist dietician/nutritionist to work out a plan for a person who has an ileo and is undergoing active treatment. I don't know whether you have been advised to be careful when disposing of your used appliances because of cytotoxicity from chemotherapy.

That aside, I lived with constant leaks, running to the bathroom to empty my bag, having accidents in public, but I have made a number of changes, and I will list the products I use for you. I would switch to a two-piece system, preferably closed bags (not drainable) because of the chance of a leak after chemo and because your stoma will get very aggravated and painful from the treatment and the acid in the excrement. With an ileostomy, you will never have a proper poop. You just need to find something to help thicken it enough without blocking it. Try porridge for breakfast or scrambled egg on brown toast (not grain bread), toasted sandwiches with cheese and some meat on brown bread for lunch (if you want salad, gradually try a little bit at a time). These all thicken your waste. Have your last meal or snack by 6 pm at the latest, or you will constantly be up all night.

I use Hollister New Image base plate, very flexible and easy to apply.

Hollister Midi Opaque click-on bags.

Wash my stoma (after showering with my old bag on and remove the device with an adhesive remover wipe of your choice. Don't pull or tug, just let the remover wipe slide under the base and keep moving down and around). Wash with Hollister skin cleanser. Never use soap at all in that area. Even plain warm water is better for you than any soap out there, and make sure you dry it thoroughly. I place a wad of tissue over the end while I prepare everything, and it air dries.

I pre-cut my wafers a box at a time, and I use Hollister medical spray-on adhesive on the back of the baseplate just before I use it. Make sure to let it have five minutes to absorb and make it extra strong. You don't have to change your base for 3 plus days then.

Then I spray with Cavillon all over the area that will be stuck down, plus your stoma. I also clean my stoma with baby wipes every time I change a bag, making sure to keep the clip area clean too, and reapply the Cavillon to the exposed area so that you don't get pain and it is protected from bile and stomach acid.

I was a good nurse for over 30 years but became a better nurse and patient after my surgery. Take your time, don't be embarrassed, and always carry a bag with clean clothing, a wash bag and wipes, extra pouches, and deodorant.

That was very long-winded, but you are not alone. So many people here have a story similar to yours. Keep positive, stay strong, try to keep your routine as normal as possible, and I promise you will be a better person for it.

Good luck. PS: It will be at least 6 weeks until I check back in. Lorraine

Hi, thanks for replying.

Sorry to hear you are poorly. Why more surgery, if I can ask?

I am still on a low fiber diet so no fruit or veg for me yet anyway lol. No, no one said anything about disposal. I will ask my oncologist. No one has mentioned the extra irritation from chemo either :-(. I am worried now.

I am not yet allowed porridge or brown bread so that will have to wait lol, but thank you for tips :-). I have been eating about 6:30 then having a couple of bits before bed, but luckily I am not up much at night. I put something in the bag to thicken output. Gas is my issue at night lol.

I currently have to have convex bags so not sure about 2 piece. My stoma is quite flat at the bottom and right so normal bags cause problems.

That's a lot to have to take everywhere you go! I really hope I can be a teacher again

Thank you so much for your advice. Good luck with the op

Don't worry, I'm just surprised that your oncologist hasn't said anything. I have to put my catheter and bag plus stoma bags in a clinical waste bag for up to 7 days after.

You will get back to work, even if it is a different way. Maybe become a net teacher or private tutor, or open university? I have gone from nursing to telephone nursing, meaning providing advice or medical help when needed, with the flying doctor service in Australia. We also have 123health where people can speak to a medical professional outside of doctors' hours. We can then advise whether to treat the symptoms and use over-the-counter meds until the next morning or tell them to go to the hospital or call out an out-of-hours doctor. Phew, that was long.

The two-piece Hollister is so pliable it conforms to any stoma, so you don't need to worry about convexity. But the Cavillon spray is so important because your medications have to leave the body and even without chemo, it is very acidic and worse with your situation. It literally puts a seal over the area. Keeping a bag on even for a day and emptying from the bottom is really not a good idea for you as your stoma waste will build up on your stoma and irritate it. So with two-piece bags, just put a hand towel over your lap while you sit on the loo, have some wipes and a clean bag plus the spray ready, and remove the old bag. Thoroughly wipe the waste away quickly, spray the stoma, and click on the bag. It takes less than 2 minutes. Make sure the wipes are unscented and for sensitive skin. Usually baby wipes for sensitive skin.

You won't have to carry all that around once you find the right product, but it is a good idea to keep a holdall in the boot/trunk of your car just in case.

I am the same as I can't have any gluten or fruit and nuts/seeds. But eggs and cheese work well. Supplements are vital in this case. If you message me privately, I will give you a list that will help to keep you well.

Unfortunately, I have more cancer, so for the fourth or fifth time since August, I am facing major surgery and will be in ICU in a medically induced coma for approx a week, then a few weeks in a private room to recover and rehab. I have also been diagnosed with it in my pancreas and breast. But God willing, they will get it sorted and removed at the same time, that's the plan.

I wish you well and you can always privately message me. I just won't be able to answer for a few weeks. Primeboy is excellent for advice and support.

Sincerely, Lorraine from Brisbane, Australia

Hi Lorraine,  I just need to say your advice to Scord was priceless.  Though a lot of our situations are similar, we're just enough different in some respects that we need to sift through the advisories and choose what's best for us.  As Scord well knows, this is way different from a acience.

Beyond that, Lorraine, I've missed you and will be thinking about you and praying that you get the care you are so willing to offer others.

Sincerely,

Mike

I found paper tape a good way to hold the bag down -- I have to be very careful with reactions to glue -- anyway, I discovered the underwear was actually rolling the edge of the "flange" so eventually it would leak. If you are going to shower and then change the bag, it doesn't make sense -- remove the bag and enjoy a great shower - then the bag - I trust you use the powder and wipes to protect the skin and help with adhesion. I was told to keep my hand firmly over the bag for at least a minute to help with the adhesion.

Don't let this get you -- remember the "thing" is not as smart as you!!

Hi Ewesful,

How do you know if you have reacted to glue?

I just don't feel confident enough yet to shower without a bag on, my stoma never stops and there is no way I could get everything dry enough to get the bag on without getting in a mess.

I don't use any powder, I use barrier spray and cavilon, but it has extra sticky bags at the minute anyway.

It all seems so complicated to find the right bags, products, way of putting it on, when to change, stop it being watery, stopping gas, etc. And it's all about to go backwards with my chemo I hear, watery acidic output, more of it, leaks, swelling, and soreness of the stoma.

I just hope it all sorts itself so I can get back to teaching!

Thanks for replying, and to my other post.

I hear you!

I taught for many years and understand your concerns. There are other teachers in this group with good thoughts. You can go back through the older replies for their ideas.

One - the chemo issue is going to make this a whole different experience for a while - please don't give up or get discouraged - it will all come together. I have FAP and lost a lot of organ mass, and it affects food choices and digestion immensely - I still do a fair amount of school stuff/subbing. I just have to say the first time was scary and after that I just got back in the swing --

The powder and special wipes are for skin barrier protection. The bag glues actually cause welts on my skin. Bathing - letting the stuff pour down the drain is just fine, and use a hand towel or paper towels to stop it when you towel off -- It will just make you feel so "normal" and together again!

The items we have mentioned for food really work, but you may not find that they are useful with the chemo/radiation procedures. I find a lot of potato works wonders, and I eat marshmallow fluff and peanut butter sandwiches for one snack - if too sweet add a layer of pickles. I was given creon at first, but that is because I lost stomach and part of the small intestine and the pancreas. I don't use it now, and I cannot see where that would help in your case -- do talk to an oncologist and the team to see what they can suggest.

As for teaching - are you up to it mentally and physically yet? If so, add plenty of deodorizer to the bag and arrange for a bathroom with the school - they have to provide some space for you.

You will be surprised to know how many teachers have bags and manage fine. I have a small school nearby (100 kids) and two on staff have them. There are always oops - but look at them from a more global perspective and how lucky it is we only have this to contend with -- we are SO LUCKY.

When you go back to teaching - do not try to do a whole day - take a couple 1/2 days like a Thurs and Fri to give yourself a time to rest and then see what you can do -- a grumpy teacher and a tired one are bad for the kids! Are you also getting all the nutrients you need and having them checked every 3 months -- GOOD LUCK

I wear a pocket wrap that I bought before surgery and use it both to hold the bag and to keep a little tension on it -- stays neater under clothing -- You may need to redo your clothing style - maybe some Hawaiian shirts or something cool the kids will like and you can feel more comfy in for a while. The guys should have several ideas.

Between classes just de-gas the bag - add more Altoids or whatever and continue on -- YOU CAN DO IT!!

Hi Scord, when you're new at this it seems really overwhelming but you'll be surprised at how quickly you adjust!

I have Crohn's and an ileostomy too and had some of the same problems you're having now - leaks, hard time finding the right appliance and products, constant output. It still is pretty constant, but you can thicken it up and slow it down with a combination of what you eat and loperamide, lol. I went to a convex appliance with an Eakin seal (which is a moldable, skin-friendly barrier ring you fit around the stoma) and use a two-piece appliance because I find that with an ileostomy you empty more frequently and change it more frequently as well. As far as thickening output, there's a lot of foods that will do it, but the best ones seem to be carb-based. You can get LOTS of samples of products on company websites so definitely take the application advice from the folks you see here and try them out! It's the only way you'll find out what works best for you personally.

You CAN go back to your normal life, you're just taking a bit of a detour right now :-) I went back to work and three kids after eight weeks of leave. Yours might be a little longer since you are battling cancer as well, so definitely pace yourself and take care of YOU. Listen to your body and do what it says. You sound like a really positive person with a great attitude, and that will take you all the way as long as you have patience :-)