Struggling with a New Ostomy: Seeking Advice and Support

I got diagnosed with a very tiny spot of cancer in my low colon in early March. Had surgery two weeks later. I begged the doctors, "No bag, please!! I can't deal with it. I already have enough on my shoulders without the headaches of a total life change, so to speak." They said they will do their best, no promises or guarantee not to get one. I prayed so hard for days for God to not let me have one, but after ten and a half hours of surgery, I found myself with a colostomy. I was so upset. Well, several days later, I had to go back into surgery and come out with an ileostomy! That's the one that's in use now. My colostomy just has gauze and tape over it. My ileostomy has been a total nightmare!! It leaked from day one. My skin was so red, raw, blistered, seeping, bleeding. It hurt so bad. My doctor had to "sew" things on my stoma to keep the poo off my skin to heal it four times, and yes, it hurt badly!! Nothing worked. I finally had my stoma moved two weeks ago. Kind of in a bad place... It's above my belly button about three or four inches to the left. My stomach empties out too fast, and I'm hungry a lot. I eat a lot but have lost a ton of weight the three months I was in the hospital. I came home a week ago Friday and got put back in the hospital this past Monday for two days and lost another 12 pounds. Has anyone else had this experience? Sheesh, losing like that, I'll be gone in a few more months. My bag is very active and has to be emptied every hour or so and mainly watery. I've tried eating binding foods and use stuff like Imodium, etc. Had that all in the hospital for months...no help. The last few months have been emotional for me...wondering how I'm going to deal with all this...and to even think of having a relationship with a man is unimaginable. Trying to be close or intimate with a guy and have the embarrassment of my bag flopping around or leaking... How does everyone else deal with these issues? I don't want to be alone the rest of my life, but I may be doing so...

Poor momma, all will be good in no time and the diarrhea will go away, and you will one day be surprised at how natural things will seem. My buddy had diarrhea for a month before all returned to normal. I suggest snacking on a lot of cheese, like block cheese that you cut, and crackers, then marshmallows for dessert. Jerky takes some time to pass through the system and might help to slow things down some. Please read more posts on dating and finding the right guy. If you are still tired and feel worn out, ask your doc for a shot of B-12, which you might frequently need, and I promise you will be okay and feel like a spring chicken again. Good luck and please keep asking questions. I care about your problems and we can work them out. Every problem you encounter is
in this forum, so take some time and read through.

Thank you Monty for your helpful information. Getting my stool to harden is my main concern and goal now since most food goes through the bag in 60 to 90 minutes. It's taking all I eat and putting it all right back out. Guess that is why I'm losing weight so quickly. I take an iron supplement and have for years as I've been anemic for a long time. Also take chewable vitamins. With things moving so quickly, it depletes my body of potassium and magnesium as I've had numerous IV bags of this in the hospital. I have read many sites' question and answer pages. Some are helpful. I've learned how to deal with all this a whole lot better than I did at first. Some friends reminded me what a strong woman I am and how I've made it through so much in my life and not let this bag get the best of me. At first, I just kept thinking my life is over....can't do this, can't do that...but have read things can be pretty much normal for us...it's not really a disability, but an imperfection God has given us to show us that we can overcome anything and show others we won't let this get us down. Of course, I had my month or two of boo-hoo denial woe is me time and realized one day lying in the hospital bed I was only hurting myself so I said enough of this. You're going to have this bag the rest of your life, so buck up and deal with it!! Sure, I still have days when I complain "I hate this thing," "I hate this thing," but know it will get better. Of course, we'd all rather not have them but God has given us another plan.
Thanks for the jerky idea. Never thought of that.
Not sure about the dating thing. When it's time, God will put the right man in my life. I spent many years with Mr. Wrong and with most guys I've talked to acting like pigs so to speak, I'm just waiting for some good ones to be with.

Hi Momma, I had this long reply but the power went out and now I will start over. Unfortunately, I can't type. Anyway, it is normal to feel down and out at this time in your life as I was in mine. I had all kinds of weird thoughts and did not want to live like this, but we have to carry on for our loved ones and we too need them. Thank goodness I have my son and daughter-in-law with two wonderful grandchildren moved in with me to help out with the cooking and cleaning. We all sometimes need someone to lean on. I was so disgusted with my colostomy and uncoordinated with the whole thing that I could not even change my bag, and my kids would do it for me. Now I can shower and change the bag in less time than it takes my daughters to put on their makeup. It just comes naturally, like wiping your butt when you used to. If you are having any problems, please let me know because I've been to hell and back with this. Please check with your local hospitals to see if they have a colostomy association that holds meetings. You might be lucky and find a decent one. We have a meeting once a month, and the girls bring cookies, etc., and swap stories and ideas. I actually look forward to them. Good luck and keep in touch. This has been a good week for me, same bag for 7 days now.

Thanks again for the reply, Monty.... Yes, we do need family support... I do have my 2 daughters to help until they return to college in August. One is going to be a doctor, so doing my wound care has been a good experience for her. The other girl is like me... can't stand the gross stuff lol!! So she helps with other needs... bathing, food, helping me walk so I don't fall, changing the bed... there's a lot I need help with and just can't do, which makes me feel worthless sometimes. I'm staying at my sister's right now. My doctors wouldn't release me to just go home. So it was here or the nursing home. Tough choice... nursing homes are not that great, I know. Needless to say, my sister and I don't see eye to eye often. We're sisters but are totally different lol!! She's been awesome though... spending hours a day at the hospital with me, especially when I spent weeks in ICU.... I feel like a burden and a big added expense for them. Not being able to make any money the past 3 months has put a lot on me. Now I have to find a way to hurry and get my house packed and sold cheap to survive. I'm going to be laid up awhile, unfortunately. The doctors and even physical therapy told me it would take me a year to fully recover and get back to normal.. Whatever normal is lol!! .. I joined an ostomy support group while in the hospital when having a really, really bad day. Talked to the man for a good hour. He was so helpful. I think that was the last day I cried over all this mess and confusion. That man really changed my thoughts, fears, and worries... once I can get around better, I'm going to the monthly meetings so I can actually talk to other ostomy people in person. They had their yearly picnic this month. Wish I could have gone somehow, but I was in the hospital.
The longest I have had a bag not leak is 4 days, I think. I heard someone say it's not good to let them go longer than 6 or 7 days. They don't change mine until it leaks. Not sure how I will wear pants or skirts when my wound heals... the middle of the bag is right where my pant line rests.
Any ideas?? Have a blessed day, Monty, and thanks again for all your information...

Hi Slow Momma

When I wrote the first version of this note, I was so new to the ostomy scene it hadn't dawned on me that managing an ileostomy can be much more difficult. Don't know if you've seen them, but regardless of what you think of the product, Hollister has some videos on maintenance for all 3 types of ostomies. While I know there are success stories out there, you've got my admiration for working through this, following the serious surgery you had to go through.

About the frequency for bag changing ... the 6 or 7 days is what the hospital also told me, but that's for colostomies I think. Medicare's standard is 10/month, as a reference point, but from what I've seen now on your type of ostomy, it sounds low.

The caution with frequent changing, as you've discovered, is your skin tends to get tender, however... Having said that, I use an adhesive remover wipe, that when I take it slow (5 or more minutes), loosens the "grip" of the barrier - practically dissolves the glue. The particular manufacturer I'm using for this product is MedLine.

TM

Not sure how I will wear pants or skirts when my wound heals...the middle of the bag is right where my pant line rests.
Any ideas?? Have a blessed day Monty and thanks again for all your information...

You might have to start wearing hot pants again or hip huggers like the good old days.

Skirts? Anyway, you should treat yourself to a new wardrobe, you deserve it and it will lift the spirits.

Yes, I do have Medicare. I have had it since '99. I have home health taking care of me now because I need wound care from my four surgeries. I hope Medicare pays for more than ten appliances a month because some days I leak and have two changes, like yesterday. I was just laying here and it started pouring out down my side, all over my wounds, etc. Once again, everything had to be changed. One wound is less than a half inch from the wafer, and when it gets goopy and wet, it wets the side of the wafer and then it begins to leak. My ostomy nurses have tried everything to fix it, so we're just going to have to deal with it until that wound heals up, hopefully in a few weeks. They used the Hollister paste on me in the hospital... never again. It burns, and you can't hardly get it off your skin without damaging it. The white Coloplast glue works better, but that's hard to remove too. So now I don't use any glue or paste. The most I have gotten yet is five days out of one bag.
I will pass on the hot pants, lol!! I'm going to be 55 in a few weeks and I'm kinda old for them! Haha. I will have to figure out a clothes idea. I've always wanted to join a nudist colony, so maybe that's an option now. Lol!!!

Hey Slow Momma,

It sounds like you picked the wrong name. Lol. When you first get these things they are unbearable, but as you learn and experience more it will get easier. I didn't say easy, I said easier. I will tell you what I learned and maybe it will help. First and foremost, don't listen to nurses and doctors about which product to use. Every major producer of ostomy supplies will send you free samples of their goods. Just call them and answer a short questionnaire about your condition. It is important to find the one that works for you. I tried 3 that drove me nuts before finding the one that works for me. Hollister is the brand I use. Two-piece with reclosable pouch. As far as diet, I would start by adhering to the pre-planned diets for ostomies. That said, 20 months later I eat whatever I want, in moderation and chewed well. Be sure to avoid drinking while you are eating, or keep it to a minimum. It seems that most of what you are experiencing is your body trying to adapt to the changes. I can tell you firsthand it will definitely get better fast when the wounds are healed. Mine was 1/2" away also (from the edge of the tape). My wound tape was on top of my wafer tape. Pain in the butt!

Ok, now for the adhesive and other products. There are so many out there that it is impossible to know what works for you without trying them, but here is what I do. I do not use the adhesive remover because it has a tendency to keep the next one from sticking well, or so they say. I used it before and had many issues and I don't now and have very few issues, but who's to say that alone is why. Once again, everything you read is only to help you decide what to try. Removing it without an aid is hard on the skin, but not so much so if you use a good adhesive barrier. Also, if you can get 5 to 7 days out of a wafer, it will remove easier because the adhesive is beginning to weaken. Ok, so I start by removing the old wafer slowly. Then clean the area with a warm rag and a mild soap, if you choose. I don't. The soap, I mean. After cleaning the area it has to dry COMPLETELY. Then apply a stoma powder (cover the adhesive area completely and then pat your belly to remove the excess powder. If you have seeping skin or anything you will have to apply the powder quickly after drying the area. Then I use a no-sting barrier film spray and spray the entire area. This film reacts with the powder and forms a protective layer between your skin and the appliance. This aids with adhesion and removal. Next I have to put a small piece of moldable ring in a low spot on the wound side of my stoma. Then I use a barrier ring next because I can fit it tight around my stoma and make sure it is stuck good. Next I apply the cut-to-fit wafer, which I cut slightly oversized so that it can be applied cleanly and I can secure the edge firmly to the barrier ring. And affix the pouch. This takes about ten minutes to do properly. I also use a belt that hooks onto the wafer and goes around you to hold the appliance firmly to your body. You probably can't use anything like this until the wounds heal but it is something to look forward to. That's it. Empty often. It's a pain but it's worth it.

I hope something here helps. Stay strong there will be better days.

P.S. There are belt type garments that keep the bag held tight to your body for intimacy, so fear not. Oh, and you're never too old to rock hotpants. LOL!

Good luck, Momma.

Dean

Products-

Bag- Hollister two-piece w/reclosable pouch
Stoma powder - Stomahesive by Convatech
Barrier film - Cavilon No-sting Barrier film
Barrier ring - Coloplast
Moldable ring (for filling) - Brava

Afterthought - Using a good odor eliminator will help make the emptying process more tolerable. I have virtually no odor and I use Stop Odor Plus by Montreal Ostomy Accessories. If you use a cut-to-fit wafer order some ostomy scissors (they are curved to make cutting a clean circle easier).

Hi Dean, well my real nickname is Racing Momma but with not hardly able to walk good cause of my surgeries and long hospital stay, Slow Momma seemed fitting. But I see with my fast moving bag, I should have left my name ride lol!!
When I was in the hospital, they had Hollister products and they didn't work well. Like I said, some days they were changing it ten or more times a day. So I found out about this place called The Pouch Place. I had made an appointment as I was supposed to have gotten out that Friday. Well, I couldn't go home the way the poo was pouring out of me. One of my doctors found out about my appointment there and since the hospital couldn't help me get it to stay on, he wanted them to see what they could do to help me. So I went up there by ambulance from the hospital. They were so helpful. They have everything up there. So many long rows of supplies. They worked on me for about two hours. They set me up with Coloplast products and the bag actually worked for two days! Woohoo! But then it started leaking more, and I ran out of product and my old home health place wouldn't order me any, etc. So back to the Hollister. After my last surgery of moving my stoma, the edge of the wafer is so close to the incision that it seeps and gets all over the side of the wafer and before I know it, the thing is leaking. I used the 2 1/4 wafer instead of the 2 3/4 and that didn't help.
I do eat often. But it just goes through me so fast. I get so hungry. I don't know if anyone else has this problem, but I get so hungry it makes me sick to my stomach. That can happen as quickly as 3 hours after a meal. My doctors and others told me about eating many small meals a day. I can't eat much at once. I'm just scared that since I'm losing so much weight that I'm not going to be able to find a way to level it off and stop losing.
The local ostomy group I joined has monthly meetings and they said that reps from some of the supply places will come to the meetings and show their products and give samples. I'm still recovering from my surgeries and haven't been able to go to the meetings yet. I hope to go in July though. Maybe talking to people in person will help me deal with all this too. No offense to all you wonderful people here as you all have been so helpful... I know this is going to be a long process but I'm trying to deal with it all...
Thanks again Dean for your information. Doubt I will ever need the intimacy supplies though... Have a good day. Barbara

I'm not sure if this would help you, but I used to eat ice cream sodas between meals. It helped me gain weight, and they are very filling. When you mix the soda with the ice cream, most of the gas goes away. I don't recall having any ballooning problems then either. And of course, they are delicious!

Oh, and don't forget the power of prayer!

Hi Dean,

What is the difference between a barrier ring and a moldable ring? I have been using a wax ring to try and stop the seepage lately and have not had good luck. Your help would be appreciated. Thanks. Rod

I'm up for any suggestions. I still need to lose some weight, but not 10 pounds a week or so like I have been. Did you lose a lot of weight with yours at first? I just hope things level off soon. Thanks for your input.

My output was pretty watery post surgery. The following foods helped and I still have them on a regular basis:
Bananas - I usually have two a day
Pretzels - the big fat ones - I love Snyder's sourdough - snack on these throughout the day
Bagels
Potatoes
Peanut butter

For now, you should avoid:
Sugary drinks
Watermelon
Coffee

Be sure to take in plenty of liquids so you do not dehydrate - you can try the Gatorade that is sugar-free - this will help with your electrolytes.

I actually change my appliance every three to four days. If I leave it on longer, I am more apt to leak. Also, your stoma size may change as the swelling goes up or down or with weight losses or gains, so be sure to measure and adjust the size of your flange as needed.

For supplies, I believe Medicare allows for 20 appliances per month. If you need more than that, your doctor can write a letter indicating the special circumstances.

You can also contact the various manufacturers and request samples of their products - they are more than willing to provide samples.

Good luck and keep the faith. Things will get better - promise...

Oh and forgot to mention that I lost over 70 pounds while sick and recovering (also starting losing my hair) - it's all coming back now.

Marisa

Thanks Marissa.... Your information was very helpful. Didn't think about the pretzels. They gave me watermelon in the hospital all the time. I will stay away from it now. It's hard to stay away from all the things you like. I will try Gatorade again and see if I can stand it. Didn't have much luck with it in the past.
I have checked a couple ostomy places online and signed up for free samples. I know there's all kinds of products out there to use. One called me back today and is sending a couple of one-piece and two-piece bags to me to try out. I don't have much luck with the appliance lasting very long. With the poo so liquid, it loosens the wafer pretty quick sometimes. I keep trying stuff to improve things for myself. I'm kind of new at this, so I go through a lot of trial and error yet. I just wish mine could be reversed. Like some, but I'm stuck with it all my life.
I'm glad to see that I'm not the only one who had lost a lot of weight...I needed to lose it but not 10 to 15 pounds a week. Losing so much plus being so weak from 3 months in the hospital is making my rehab slower than expected. Makes tears come to my eyes when I see people walking or jogging down the street and here I can hardly do 12 feet and I'm wiped out. I did make it to the bathroom to brush my teeth the other day as I've done it by my bedside over 3 months... May be nothing to most but it was a milestone to me after what I've been through.
I still have hair issues. It's still falling out. It's just hair and will grow back someday lol!! I figure once my wounds heal up, my hair will grow again and get back to normal.
Thanks again and have a blessed day.... Barbara

Slow Momma, things will get better... I don't know if the surgeons explained the differences between a colostomy and an ileostomy. In the ileostomy, they are working with the small intestine. This is the section of intestine that helps process the food from your stomach... the food is in a liquid state and as it travels through the large intestine (the colon), the fluid is absorbed and comes out of the normal system about the texture of a ripe banana.

In effect, what is happening is the food/fluid is slowly being absorbed. In the colon (large intestine), is where most of this takes place ~~ because your ostomy is in the small intestine, very little absorption takes place. This is why ileostomates have a more liquid output and pouch changes are more frequent.

You should have been told your output would be liquidish. Most of the ileostomates in my groups use an open-ended pouch (drainable) in the evening and a two-piece disposable pouch during the day when they're out and about.

I hope this helps and again "Things will get better!"

Good luck.

Slow, my output is liquid also. I can't thicken it up as I'm prone to obstructions. But what I use is Hollister New Image two-piece drainable pouches. I could never use a closed-end pouch as I am constantly emptying. The adapt rings have really cut down on leakage. Fortunately, the flanges and the rings are the perfect size for my stoma so there's no measuring or cutting to fit whatsoever. I change every 4 days. Any longer than that is a crapshoot.

Yes, I do know the difference. Matter of fact, I have both. The colostomy was put in with my first surgery. On my left hip area, then after my second surgery, I got my ileostomy with my second surgery as they had to take a whole lot of colon. So now, my colostomy just stays covered with a gauze as it does leak goop nearly daily. My doctor was concerned about the stool being so watery as I've lost so much weight, so he tried lots of things to help thicken it. Because of having it so runny, it makes my wafers not stay on as long as they should. I know I will get it all straightened out sometime. I just have to be patient lol...thanks for your help.
;Barbara

Regarding consistency for ileostomies, I noticed in my Edgepark catalog there is a heading in the table at the front for "Absorbents" from 5 different companies. Most are gel-based, one is crystal, designed to help solidify output. Don't know if that idea is any help - I've colonoscopy so don't need them, but just thought I'd toss the thought in the ring.

Blessings

I still have watery stool and have to empty my pouch about 10-12 times a day two years after my surgery. I have just incorporated it into my life. I wear low rise jeans, camisoles, bikini underwear and with dresses, I wear Spanx. This seems to work for me. I am not very hungry so I don't eat very much. But every night I have a shake made with Ensure, ice cream, and ice. This keeps my weight at around 104 and gives me all of the nutrients I might miss in the food I eat. I do everything I used to do: skiing, biking, Zumba, yoga, barre, Pilates, and hiking. I am 62 years old and some days I can't imagine living like this for 20-30 more years. I am married and have found a way to keep intimacy in our marriage by keeping a camisole around my middle. I do get tired, so when I do, I take a nap. I hope this helps.

When are you allowed to drink coffee?

I have colostomy, but a poster on another forum with an ileostomy suggests that liquid Imodium works much better for thickening and slowing output for him. If you've only been using pills, give it a try. Good luck! This is tough stuff going on with you...

Thank you. I used the liquid for about a month when I was in the hospital and didn't have much luck. I've been reading all I can about the ileostomy that I can to see what's good and bad for foods and bag issues and I've learned a lot from the sites. This one is very helpful. I guess with trial and error I will learn. I just keep on keeping on and stay positive...this is the last thing I ever wanted, but it's part of me now and I have to deal with it.
Have a good day. Barbara

Yes, yes, yes!!!
My son did and every time he ate, it didn't take long for food to come out. His was 20 minutes, one piece of advice try to change the bag before you eat...cause otherwise you will have a mess every time, okay?
My son is 9 now and has had an ileostomy for 4 years... here are a few things we have learned to thicken poo:
##White bread, banana, peanut butter is the first, it has salt in peanut butter, banana, and white bread thick and keep food in a bit longer.
#Instant pudding (you make it with milk).
#Custard_!!!!!! No jelly...some say yes, I say no cause the sugar makes motion runnier.
##Marshmallows, these work... WONDERS YES YES YES.
For the first 6 weeks, grif normal food like vegetables and fruit were not helpful.
###Ensure it's a milk solid that you make up...this is after all the other food first because he was extremely hungry but losing weight.
#####At first, you may need to go back to white solid bread, milk, bananas, porridge, ice cream.
##Potatoes, pasta, cheese, yogurt, pumpkin, carrots, mushy thick food, kumara--sweet potatoes.
##Not oranges, kiwi, apple...if you do pineapple, this has more acid than any other fruit.
##He also had to have an electrolytic drink because he was losing too much poo...I was wondering if you had thrifee juice in the supermarket cause this took that horrible salty, baking soda iery taste away, BUT IT DOES THICKEN UP...IT TAKES TIME...
Cheers Julie...any questions just ask????? Hope this helps...but you want the food to stay in, they told us to try medimucle or benefiber, and the tablets idoium (what the person said above but use it altogether, not one then the other'!...,Trail and error...frustrating as it is your here to give me advice too, my son lost lots of weight, that's why we had to try the dense food you know I feel like the nurse when we go to the hospital cause they say... what has he got?...he

Yes, yes, yes!!!
My son did and every time he ate, it didn't take long for food to come out. His was 20 minutes, one piece of advice try to change the bag before you eat...cause otherwise you will have a mess every time, okay?
My son is 9 now and has had an ileostomy for 4 years... here are a few things we have learned to thicken poo:
##White bread, banana, peanut butter is the first, it has salt in peanut butter, banana, and white bread thick and keep food in a bit longer.
#Instant pudding (you make it with milk).
#Custard_!!!!!! No jelly...some say yes, I say no cause the sugar makes motion runnier.
##Marshmallows, these work... WONDERS YES YES YES.
For the first 6 weeks, grif normal food like vegetables and fruit were not helpful.
###Ensure it's a milk solid that you make up...this is after all the other food first because he was extremely hungry but losing weight.
#####At first, you may need to go back to white solid bread, milk, bananas, porridge, ice cream.
##Potatoes, pasta, cheese, yogurt, pumpkin, carrots, mushy thick food, kumara--sweet potatoes.
##Not oranges, kiwi, apple...if you do pineapple, this has more acid than any other fruit.
##He also had to have an electrolytic drink because he was losing too much poo...but it does thicken up...it takes time...
Cheers Julie...any questions just ask????? Hope this helps...but you want the food to stay in.

Thanks dragon2 for all your helpful advice... It's so hard trying to deal with all this when it's all new to me. Everyone's input has helped wonders on here. I'm glad I found this site. I noticed the worst thing to eat or drink is anything with refined sugar. I'm learning lol...
Barbara

Hi Carol, I haven't seen a reply to your question so I thought I would say that I have a colostomy and always drink coffee. Just start out slow, one half cup maybe and work your way up to what you used to drink. Be careful though, coffee can dehydrate you quickly so drink plenty of water, (coconut is the best) juice, and whatever you enjoy.

This is practically my experience word for word, lol. I had the same problems in the beginning! It gets better. I still have problems with watery output from time to time, but I've done a lot of dietary research and have been able to fix it mostly with what I eat. If that doesn't work, I pop two Imodium - you'd want two, because one won't work. Ileostomy transit time is too short. I too lose my chow in about 90 minutes of eating, but girl I've gained 40 pounds since my surgery 9 months ago, lol. Which is a good thing, because I was a freakin' skeleton after I got out of the hospital! Like 98 lbs!!! So I'm way healthier. Another thing I had my doctor do was a complete nutritional lab panel. I didn't have any B12 register on the lab screen, so now I get B12 injections. I also take massive doses of vitamin D as well as a regular multivitamin and a prophylactic aspirin (my platelet count tends to run high because of the Crohn's). I drink a sick amount of fluid in a day - two quarts of Gatorade, for starters - to stay properly hydrated, I exercise and I *try* and get plenty of sleep. Some days that is harder than others, lol. But all of this was slowly. It took several months for me to get where I am now. Pretty soon you will look back on this time and say, "Whew! Glad that's over!!!"

There are ways to get around those intimate moments. There are belts you can wear. I found a bra and matching bag cover, go to Facebook and look around.
Remember that sexy comes from within. I know that this sounds corny, and it may take you a while to get there. It gets better sweetie, I promise promise.
If you're new, I definitely would try stoma seal.
And keep blogging, we are all here for you.