UCVlog: Showering with an Ileostomy

[Joey2027ify]

Thank you for the information. Very helpful. I am a critical care nurse and usually do not have to do any teaching, the patients are usually more receptive when they are on the ned surg floors. However, I did have a pt asking questions such as "can I take a shower?" I did not want to give him the wrong information, so thank you , I very much appreciate it. 

Ginni Keyser, RN/ICU

[TheVanessajane]

Re- To Megusman.I am Diabetic too.After my Illeostomy I had many a problem with my bag.After showering was the best time for changing it.After trying various kinds, I finally found a suitable one.Now had the procedure reversed & things are back to normal.Or as near as normal can be after that operation.A bath or shower is the best way ever for a good refreshing sensation!!!!!!! Make the most of things we are still alive!!!!!!!!!!!!!!!!

[Dolphindream15]

@TheVanessajane I too have an illistomy and Iam a dibitec also  but with my ostomy Im sosposed to eat more calories because I dont absorb a fourth of what I take in,,because i have no large instine ,,I cant eat high fiber and shouldnt have all the rougage,,but because im a dibitec its in REVERSE,,they want you to have high fiber and to eat rougage and to eat less calories,,if I did ,,I would loose weight,,my dietician just throws her arms in the air,,how do you manage a diet,

[medguzman]

this is amazing, courageous and informative of you to do this. i am a student nurse trying to study for boards, and you have helped me a lot. an old friend of mine suffered from (controlled) IBD and was very insecure about it. it is great that you are here to help anyone who has IBD by talking about your personal experiences.

[Dolphindream15]

I have an illistomy I never had a problem showering in fact I find it easier to change in the shower to get the stoma good and clean ,,but my problem is DIET,,I had to have the surgery because of the chronze disease,,I need the extra calories because I dont absorb what I take in,,cant have the roughage and cant be eating high fiber,,BUT in 2009 I was told I had dibetis,,a dibetic diet is in COMPLETE REVERSE,,from what Im sosposed to eat from my Ilistomy,,HELP

[lokalllize]

how do you sleep

[UCVlog]

@lokalllize Search for "Sleeping with an ostomy" and you'll find the answer to this question.

~Dennis

[lokalllize]

@UCVlog found your video but in another channel /watch?v=QcTxeX-11OQ

I have chorons I feel really lucky nothing bad has happened so far but this scares me a lot

[MotivatedSoccer18]

I'm 19 years old and just have been diagnosed with UC for about a year. I'm flaring up and I wonder if you can help me with some tips to reduce symptoms? I want to keep my colon for a while and maybe you can help me with tips. Thanks so much Denn.

[UCVlog]

@MotivatedSoccer18 Well, if you are in a flare up you definitely want to talk to your doctor. Personally, I believe that taking your medicine properly is the best treatment for flare ups. Others suggest certain diets and supplements, but I can't speak to those things from personal experience. Diet didn't seem to have much effect on my flares. Also keep track of how often you go to the bathroom and the consistency, any bleeding, etc. This information is very important for the doctor.

~Dennis

[theatomizer]

Whats is feel like when you touch it? :o

[UCVlog]

@theatomizer The inside of the intestine actually doesn't really have nerve endings. I'm not sure if they are nonexistent or not, but you can touch the stoma all you want and won't feel a thing.

Dennis

[theatomizer]

@UCVlog Huh, thats interesting. Thanks for replying. :)

[2009yonnie]

hey dennis! i'm david, i had my bowel completely removed after a really bad case of crohn's and i've had a bag for 2 years now, inspirational stuff man. glad to see i'm not the only one who has just took what happened and learned to kick lifes downs in the balls with what we still got...keep it up!!

[Dolphindream15]

@2009yonnie I had to have my large instine removed and part of my small due to crohns disease I wear extra long shirts to cover up my bag,,showering isnt a problem for me I usually go about 2 weeks before I have to change it,,when I do change it its easier to do that while in the shower,,to get the  stoma good and clean,,then pat dry once your out of the shower and put another flange on,,,my problem is DIET,,I dont absorb what I take in,,but Iam also Dibetic

[FiberMania]

Bless you UCvlog... It takes a strong person to share this. Hopefully it will help someone who sees this! Peace.

[FiberMania]

Nitroreviews.... But for the grace of God, perhaps YOU may have to wear one of these someday soon? Maybe huh? How about one of your loved ones?

[shadeus]

Hey Dennis, I have a serious question. It may sound stupid, but I always had a normal colon. Do you get the feeling that you are going to have a bowel movement, or does it just happen? I"m sorry if this sounds gross or rude or facetious, but I am being completely sincere about it.

[UCVlog]

@shadeus That's a perfectly fine question! I do know when I'm having a bowel movement. When I had my ileostomy it just came out, but I could feel it when it was happening. Now I have a J-pouch, but they left in the very end of my anus, so that I still have the bowel movement feeling.

~Dennis

[Tepadj]

How does it feel when you dont have to take a crap?

[UCVlog]

@Tepadj Well, quite comfortable actually. But when I had my ileostomy (I don't anymore), I also had either a dormant rectum or a dormant J-pouch, so I still went to the bathroom about once every two days to get rid of mucus.

~Dennis

[Coragioso]

Hey man, I totally encourage what are you doing, to benefit other people with UC. And truth be told I recommended your Vlog to many patients not only with UC but with Stomas, as many of them sometimes forget about it at first. Bless you and I wish you all the best of luck.

[ohhFOCK]

Hey Dennis, I want to say thank you for doing this, a lot of people wouldn't have the guts to. I know I wouldn't. I am 15 now, and was diagnosed with UC when i was 14, 2 days before my 15th birthday. Yeah, I'm scared for my future, but for right now, I'm doing fine, I'm sticking it out, and trying to keep everything under control, so I don't need the surgeries. Thank you for all the video's and everything else you have done.

[bratwa]

I understand you have colitis. So do I. I'm now in a good remission. My poop is totally normal. I even drink coffee. I'm kind of afraid to have a stoma or a pouch. Since the beginning of my CU, 2008, I never felt any big pain. Only had some periods(couple of days) when I had to go to the toilet max. 4 times a day. My question to you: Before this pouch, you always had pain or did you go to the toilet very often? And why did you took this pouch? Did you ever had stable periods and how long? Thnx

[NitroReviews]

Sucks to be you man

[UCVlog]

@NitroReviews Umm, not really. I have no problems being me. And the ostomy didn't bother me that much.

~Dennis

[Phestor2010]

@UCVlog Me neither, I have had one for a few months now and its not that bad! At least I'm alive and well now.

[Phestor2010]

@NitroReviews Be nice, you could be in the same situation...

[durgaaa]

@NitroReviews --You are quite immature, and your comments are really completely worthless.

[alucard1931]

My mother has an ileostomy due to colon cancer...From what I know, the colon's main task is to absorb water. Do you use Imodium to prevent dehydration?

[UCVlog]

@alucard1931 I take Imodium, but not so much to prevent dehydration, but to slow down the bowel movements a little. I have a J-pouch now, not an ostomy anymore. I take it almost everyday, so I suppose it does help with the dehydration a little.

[vacuumlover1]

do you have solid bowel movements?

[UCVlog]

@vacuumlover1 With an ostomy I didn't have bowel movements if you're asking in the normal sense. All my waste came out of the stoma. With my end ileostomy the waste can be thick, but not in the way before I was diagnosed with ulcerative colitis. With my second, diverting loop ileostomy, the stool was almost always thin.

~Dennis

[jalchrist]

what i found out works well is when I use a shower head that is detachable it is easier to shower with, I don't get my bag as wet

[welshxgirlie]

Having an Ileostomy does not mean you have the option to have a bag or reversal. I have had my ileostomy since april 08 and had a new stoma fashoned in sep 09. I had to have this operation because or crohns disease. I have limited small intestine, no colon (large bowel) but i still have the rectum. I am unable to have any reconective surgery or pouch formed. I hate living with an ileostomy but it's better to be alive with a bag than dead with a bum!

[RalGash]

What about putting a plastic baggie on the bag and then taping it? That would help keep it dry.

[UCVlog]

@RalGash You can certainly wrap plastic around the bag if you want, but I found it wasn't necessary as the wafers do alright when exposed to water. My wafers usually lasted 4-7 days. It all depends on how much effort you want to go through keeping the bag dry.

[HOTTHUG4U]

@jlh945 why would you search and watch something like this just to leave silly comments. i noticed you commented on another similar video.

[donalt45]

What a load of rubbish.What sort of outdated system is he on? Dry it with a hair dryer!

[Deezy404]

Yoooo... whats up my name Deezy and i had a ileostomy pouch for 4 months. The reason I got mine is because I got shot in the stomach & the bullet hit my colon. I should be getting my surgery to get it reversed in June. But tell me this...how do you stop the bag from stinking becuase I have that problem sometime...

[UCVlog]

@Deezy404 Look for Hollister M9 odor eliminating drops. They are blue in color and you put a few in the bag each time you empty it. Those sometimes help. Also, some people tell me they put a couple Tic-Tacs in the bag to clear up the smell. I've never tried that so I don't know if it works. Some people have even told me they put a little mouthwash in their bags, but others tell me the alcohol might break down the bag.

Also, changing the appliance every 4-5 days will help.

[jenneastman]

Thanks so much for sharing, my bf has one of these and we have so many questions!

[deeee1969]

Just to inform those who dont know much about the bag situation. ileostomy means you have an option to keep the bag or have a reversal. The colostomy means your colon and rectum have been removed.

[UCVlog]

Just a small clarification, a colostomy is made from part of the colon, whereas the ileostomy is made from the intestine. People with colostomies may have part of their colon or rectum removed. I had a friend who had a colostomy temporarily because her rectum was tore open in a jet ski accident, but has since gotten the colostomy reversed.

[2009yonnie]

@deeee1969 i have an ileostomy and it cannot be reversed

[deeee1969]

I have a ileostomy. My doctor refused to see me because I have outstanding payments. Since then I have had pain on my left upper side of my abdomen. I still live with a colon and rectum I dont even need. What should I do. I actually dont have a problem with showering. Probably its the type of pouche I use. It last me 5 days and I bath everyday.

[UCVlog]

I'm not sure what to do about the money situation. I've heard that you can still go to the emergency room if you have serious problems and they can't turn you away. If you're having a lot of problems it's better to keep telling somebody, I would think, and try to get help from some doctor.

[ChiaKaCheng]

ugh, im only 15 and i had sigmoid volvulus. 53cm of my large intestines has been removed and it takes 6 weeks for it to grow back perfectly, then i have to undergo another surgery to 'close up' the stomy. i only shower with the pouch attached to my skin since its water-proof.

[anhowert]

i have crohn's and am supposed to have this surgery soon. im pretty nervous.. ive never had a surgery before and the thought of having a bag attatched to you seems a little scary. How bad's the pain?

[UCVlog]

Pain from recovery might last 2 weeks to 4 weeks, depending on the person and what is done during surgery. Generally, pain decreases as time goes on, so it's not likely that the 4 weeks is unbearable.

After you recover, the ostomy itself won't really have any pain. The only pain that might come up is if the skin under the wafer gets infected/chapped.

[anhowert]

wafer? the doctors didn't really explain anything to me.. so I'm not sure about all the terms. They said they'd just attach a bag to the good section of my intestines and then they sent me on my way. I guess since i'm only 15, they don't want to get in to the details and freak me out too much... how big is the hole?

[UCVlog]

The wafer is an adhesive that attaches to your skin around the stoma (the part of the intestine that comes out of the abdomen; it's not a hole per se), and then a bag or pouch attaches to the wafer.

If the stoma is made from your intestine, it'll be about an inch to an inch and a half wide. If the stoma is made from your colon or large intestine, it might be a couple inches wide.

Don't worry, the hospitals have nurses who specialize in this area and will help you before you leave.

Dennis

[anhowert]

thanks! the doctor said that we'd try it for a month just to see if after giving the colon a break, other treatments would have an affect... so at least it won't be for a very long time! Thank you again for answering my questions!

[nlesta1]

I am an ostomy student nurse, a trick a woman with an ostomy once told me was she folds her ostomy pouch up and places a sheet of EZ seal plastic wrap over the pouch to protect it from getting wet in the shower. So after her shower, she simply removes the sheet and unfolds the pouch and it remains dry. You can buy the EZ seal plastic wrap, the one with the adhesive on one side, from the supermarket. Hope this helps.

[map78520]

why do you have that: * Crohn's disease * Ulcerative colitis  * Familial adenomatous polyposis * Total colonic Hirschprung's disease

[UCVlog]

I had ulcerative colitis and had my colon removed. I had an ileostomy for six months before I could start using my J-pouch, which I use now.

[LeighAndrew]

I had my reversed i november. are you able to have yours reversed? how long have you had it for?

[Assassinator41]

I finally got to shower without any of the backing or bag on for the first time since my most recent surgery 7 weeks ago. Your absolutely right, water on a fresh scar hurts like hell, the biggest issue I dealt with was getting out of the shower and stopping the stoma from continually going, I have a very high output. Hope you are well and thank you again for all your videos, you are an inspiration.

Peace,

J

[LeighAndrew]

that was so annoying for me, during when i used to change my bag i used to take a shower, it was a whole lot easier for me, but as soon as i finished it wuld go again and i wuld have to take another shower :(

[jaspersnoncool]

Hey mate i got one of these a month ago, my IBD was so bad, they told me last week i can have it reversed..probably in 5-10 months, i was wondering is it any easier having it reversed? like i know how u feel it starts working when ur trying to change it lol, its kinda making me miserable, do u recommend getting it reversed?

[LeighAndrew]

Of course, it's like 100 times better and you not get so much hassle and you brings you back to some kind of normality even though it won't be near what it was like before your operations, but your going through the right way! It's similar to having the bag in that you have loose stools and you may need to go alot more that most people, it gets better as time goes by. You will be very sore for a few months after the op but thats a little way off for you yet

[Muddlesbella]

Dennis - I have been watching your videos the past two days after I learned that I too must have this surgery (scheduled for 2/15/10). Thank you for putting yourself out there and going over small details.  It helps someone new to this process to see. Thank you again - I will be watching more of your videos.

[MsJenn1985]

@Muddlesbella

Hi my name is Jenn and I have an Ileostomy and I am 24 if you ever want to talk I am here, good luck with your surgery hun, here if you need to talk, xxx

[gilky1]

@Muddlesbella

Hope all went well today,xx xx

[15kmw]

I would rather live with a bag then have a character (or lack thereof) as sad, pathetic, and offensive as you do. No one goes out and makes a choice to live with this. It's people like you that are what is wrong with the world.

[15kmw]

Dennis- thanks for all of your ostomy videos. I underwent step 1 of a j-pouch surgery on october 7th. I've had major complications with my ileostomy and as a result will have my take down on November 5th, but in the meantime learning how to handle having the bag has been extremely challenging. Thanks for sharing such a personal thing to help others learn how to deal with this. You're a saint.

[PurpleCantaloupe79]

You know what?? You are so RUDE. Don't you see that people who have ostomy and colostomy bags deal with inscurities and situtational acceptance concerning their condition. Why would you even comment if you have nothing nice to say! Just keep your mouth SHUT no one cares what you have to say!

Dennis-

Thank you for this. I'm going to be a nurse and we just went over ostomy care and I commend you for putting this up and educating others by letting us in on your experiences.

Best of luck~

[milkbone2]

Sorry it all depends on the pouch system you use I have actually got some of my best wear times after an afternoon in the pool. I had longer wear time because the seal around the edge melted a little with the water then stuck to my skin even better. please you need to add some disclaimer that this is not the end all be all of ostomy care for every ostomy is as different as ones finger prints. that tape you talk about is latex and can cause some bad reactions

[UCVlog]

I appreciate the comments, though I think many people realize this was my way of managing my ostomy. Looking at the related videos on the side of the page people can find other examples.

If you have other ways of managing your ostomy I'm sure the community would appreciate seeing videos made by you about how you do things. Let me know if you make any!

Dennis

[UCVlog]

That's a very ignorant and offensive thing to say. Don't be so quick to judge others and their health. Living with an ostomy is no first choice of anybody. However, it is often the best choice when faced with uncontrollable bowel diseases or cancer. In most cases, the person would die WITHOUT the surgery. Somehow, having a reduced quality of life is far better than NO LIFE at all. And really, as many people will tell you, living with an ostomy is not nearly as bad as initially supposed.

Dennis

[Assassinator41]

I absolutely agree, I now have to live with a permanent ostomy and people that are so close minded don't realize, like you said, that people like us could have DIED without doing this. Some are lucky and only deal with a temporary ostomy but those of us who have a permanent situation are at least able to live out our lives, we don't need close minded comments, we are people too.

[LeighAndrew]

i culdent stand the temporary one, god knows i culdent if it was permanent, i was lucky i was able to have it reversed?

[AAUUSTER]

Thank you very much for sharing with this valuable knowledge. It helped me to understand more of the day-to-day practices to live with illeostomy.

[F8L]

This is a great use of YouTube and I am happy this kind of information was posted for those curious about living ileostomy bags. I was just outfitted with an appliance and while mine is temporary I still find the information helpful. Thank you for posting the video.

[AFowler1966]

Thanks for doing this hun. I have Crohn's and have had an ileostomy for 21 years. I use Sween Prep around the collar to help keep the water from degrading it. And then I tape it.

[Alana515]

I find the best seal i have tried so far (this is my skin though) is Eakin..I just recently started on it and I havent had any skin problems, or leaks.

[towringer]

Wish I had known about this. I had a colostomy for 15 months following a gunshot wound to my abdomen. I did not shower for that whole time for fear of degrading the seal. I was so happy the first time I took a shower following my 4th & last abdominal operation.

[prispris23]

tegaderm, secondskin, best stuff ever made