Living with an Ileostomy: Challenges Beyond the Bag

My wife's stoma (ileostomy) sometimes bleeds and is very itchy. We use the powder, Cavilon, but at times it gets red and irritating. She hates the bag, but reversal is not an option as she would spend the rest of her life on the toilet.

She is accepting her condition more now, but anyone who says you lead a normal life with the bag doesn't have a bag. Quality of life is not there, but she's alive.

Anyone who leads a normal life, Kold, probably doesn't have a life, right?

Normal as compared to that which it was, so we'll call it the new abnormal.

This happens to me if I leave my bag on longer than 2 days. Has your wife talked to a stoma nurse to see why she is bleeding and itchy?

Sometimes, if you cut the wafer hole too small, it will rub on the stoma, and when I get itchy, I know that I have a leak starting to happen. I am one of the normal ones, whatever normal means to each and everyone. The normal day is different. I change a couple of times a day depending on what I do, and the weather doesn't help me either. Well, good luck and have a nice day.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

In retrospect, I think my previous comment about not having a life is short-sighted, perhaps even insensitive. All of us have our own understanding of and appreciation for what's normal; and, depending on so many different circumstances, normality can be good or bad or neither. Years ago my mother told me that sometimes the less said is the best. I should have remembered her advice before making that post. Normally I do, but.... PB

I don't agree with this at all. Sorry your wife is suffering, but after 7 years and 3 reversals, my life is normal, but my toilet habit isn't. At least I know normal life can really mean anything. What's normal if your body is whole but your brain is wrong? Is that normal? I think I will leave this to somebody who actually can deal with it. I will just agree your comment is quite rude and puts everyone down who is struggling, but hey, what do I know... Boo to you. Ugh. At least you got attention. Not nice at all, whoever you are. I didn't bother looking at the name and won't be looking for a reply button either. :-(

What are you talking about, Mooz? I never rudely put anyone down. Apparently, there's a god up there who can cure all ills but gets a cheap thrill from seeing us suffer.

She should see a stoma nurse ASAP. They are wonderful at helping. I am only 3 months out from getting my ileostomy and am preparing to go to a wedding this weekend, followed by a week at the beach. I will have to make adjustments for the stoma, but there is still life to be lived. Stoma nurse ASAP!

Thanks, reed4vols, that is what we will do. Frankly, the ileostomy is the least of our problems. There are complications due to diabetes. I am her caregiver due to eyesight issues, not to mention other disabilities. This woman has way too much on her plate. Love her to pieces though; she is a trooper.

what the heck is normal about an ostomy?

My sentiment exactly, Mike.

What the hell is normal about letting us know it? Duh, no, it's not normal, but neither are some people with having an asshole. Geez... We feel like crap too, you know, just trying to live this NORMAL life for Christ's sake. Maybe there are many pills to get rid of the bag once and for all, hey! RIP

I see you're online. Meet you in chat if you want. So many of us struggle with even more than a stoma, but some people stir too much crap up. Job well done. Obviously, you're not coping. Can't you get home help?

With what you're talking about, I guess what am I talking about? It hurts other people with comments that make others with ostomies feel like they aren't normal. That's what I'm talking about, mateeeee.... I find it offensive. That's what I'm talking about. You want help, then it goes on to "not normal." Plenty of people with disabilities—would you go tell them it's not normal? For God's sake, I'm not getting into this shite convo...... Too boring and confusing at the very least. Hey, have a lovely day :DDDDDDD yey happy happy

Mooza, even I got lost in what you were trying to say. Guess you weren't too happy about the comments Koldkanuck said about how we seem to him about life with a stoma. I am more interested as to why his wife didn't have her say, as she is the one living with a stoma. Guess whatever rocks your boat. Some make it a big deal and others don't. We all manage in our own way. So did you in the end get it sorted with Kold.......? Gee07

My wife cannot use the computer as she is legally blind. I am her live-in caregiver and very happy to do it for her. What I am not happy about is the surgeons hack you up, then you are on your own to deal with the 'normal ostomy' that you are left with, and life quality is virtually non-existent for her. I didn't mean to crap in Mooza's porridge, but I guess that's normal too! TTFN

Koldkanuck, you have to remember that there is a lot of passion on this site when it comes to coping with a stoma. Most of us cope, but it doesn't mean we are all made of stone, so at times we do get upset with some comments, as I think Mooza did. Perhaps, you could have worded it a little better. I don't think it helps when the comments seem to come from a person who doesn't have a stoma. I know your wife is blind, but if you had made the remark in her words, then perhaps that wouldn't have upset others. I do realize you are the one typing, but the remarks were from you. We are a funny lot; we can say most about ourselves but don't seem to accept it so well when a non-stoma person criticizes. As for your surgeon letting your wife down, I am sorry to hear that, but that is common in a lot of our cases. I myself had my stoma from U.C. way back in 1971. There was no such person as a stoma nurse. Only if you were lucky or unlucky, depending on how good they were, to have an Appliance Officer. Mine was the female from Hell. She woke me after a nine-hour operation by slapping my face; no hospital staff were around to stop her. Then she removed the op. bag and kept making me wake up to watch how she applied it. Left saying she would be back in two days' time, not to let poo get on my skin as it would burn me. So what I'm trying to say, there are a lot of us that have been left to get on with it too. Now times are better in that there are stoma nurses out there now. So get help by getting in touch with one for your wife. Once your wife starts to get the right help and her quality of life gets better, she will begin to cope better. We are all low in the beginning and still at times throughout, depending on how well things go. She is, I'm sure, feeling very down, but you have to be more than positive for her. It's good she has you to help her, as my husband was there to support me when I had loads of setbacks in the early days. She will get there, and you both will start to have happy times again. Don't let any of this stop you from coming onto the site, as we are all in the same boat and therefore, ready to help if we can. Get help first for your wife. Please let us know how things are going. If anything of my past has shown me, it is to get tough with the medical lot and push for your needs to them. As for your wife's itchy skin, you should use Cavilon every time, not just now and again. As a rule, if one's skin is itchy, it means it could be leaking or something your wife is using that doesn't agree with her. Try testing on other parts of her body to see if this could be the problem. I couldn't in the very early years wear any plaster flanges, can now but it took me years to get my head to accept it. Still today, can only use Micropore 3M tape. Hope I have helped a little. Gee07

Hi Koldkanuck, The problems that your wife faces and the pain that you feel, on her behalf will resonate with everyone on this site who will have been through their own version of hell to get where they are now. Some will be in the same place as your wife is now, some will be safely through to the other side and getting on with a happier life and, probably most will be somewhere inbetween. Don't give up and don't forget, when you are lashing out at the unfairness of life that you are preaching to the converted.We've all been there and are all, potentially your friends or allies and I'm sure most, if not all will be glad to help where they can. As for advice I can see you've already had plenty. I don't know if any of it has been what you wanted or needed to hear? It's difficult to give specific help without knowing a bit more about your situation and, very importantly, where you are based. Operational procedures,availability of help and products varies wildly from country to country and, with the best will in the world it's difficult, if not impossible for the likes of myself, here in the UK to give specific advice to someone, for example in the USA. So register, on behalf of your wife and give a bit of background history and enable those nearest to you to be able to help or, at least give this information in your posts. There are, as has already been pointed out stoma nurses or their euivalent in most developed nations and they are supposed to be there for you. Like others, on here I have had mixed experiences in this area but you have to remember they are all human beings; to some it will just be a job, to others a vocation. Find the right one and it can change your life or at least change your perceptions.If they give you a dud then change his/her attitude or, as you have already been advised get tough and demand the help you need. This goes for all parts of the medical profession. Of course this is all dependant on the system adopted by your country/ local authority.As for dismissing the idea of a reversal, why? It may or may not be appropriate but (forgive me for saying so) your comment did not sound like it had been made after reasoned discussion. I, personally have had an end ileostomy, a loop ileostomy and am now bagless.(A fiend has taken to calling me Dyson; a joke you will get if that particular proprietary product is sold in your neighbourhood.) All three states come with their own, particular problems and with their pros and cons but let me assure you that, in the right circumstances all three are perfectly viable states, though the loop is only intended to be a temporary one whilst awaiting healing after another operation; in my instance, the creation of a J-pouch.I didn't want to live with a bag as long as I had the choice because, unlike others it offered me no advantage over my prior state; I had U.C. but coped well with it and only lost my Colon because of medical negligence, on the part of my GP, prescribing medication that it was known that I could not tolerate. To some, though it's a new beginning; the chance to escape years of pain and suffering. Everyone is different.I awoke from emergency surgery to find this 'thing' attached to me. I had litle or no warning about what was going to happen to me and, certainly no 'education.'Post operatively I was very ill and was unable to take in anything I was being told by the stoma nurse. I just felt revulsion and self- pity, which is pretty normal. We all go through a bit of a grieving process and wonder what we, or others could have done differently and we all cry 'why me' and shed a tear or two in private. Then we all learn to get on with it. I don't necessarily mean, 'make the best of it', though we all have to do that, in the interim, I mean that we all have to learn to forget about the past and do what is best for us for the future and create a better life for ourselves. I have, and I'm sure that I am not alone found some positives to take from the whole experience. I have improved my lifestyle, in as much as I can and have a better understanding of the worth of things and what is really important. I still 'sweat the small stuff' to a degree but not as much as I used to. And, though I've got rid of my stoma, long before it went I realised that, if all else failed and I was stuck with it for life then that would not be the end of the world for me, unless that's what I wanted it to be. Hope your wife gets the help she needs and that the sun shines on the pair of you.Best regards, Keith Murray.

Hi Koldkanuck, I find it very sad that your wife feels she cannot lead a "normal" life. I have an ileostomy and a supra pubic catheter. I lead a very fulfilled and full life. I am a retired teacher, I have three Highland ponies, and ride regularly, and seven grandchildren I often help to look after. Life need not come to an end with a stoma; try to emphasize the good things rather than dwell on the negatives.

Hi Koldkanuck... Are you by any chance Canadian? Your name sounds as though you might be. I am, and I had my permanent colostomy 2 years ago, with many surgeries since for a strangulated stomal hernia. My best friends are my ostomy nurses. I too have a ton of stomal bleeding, but they cauterize me and it helps for weeks on end. Good luck to you and your brave wife.

Wow... I don't even know where to begin. Okay, let's try this: First off, as far as the bleeding is concerned, it depends on where it's at really. There will be bleeding at times depending on how the wafer is cut, and the stoma is very sensitive so even the slightest brush may cause some bleeding. If it's still scary, her ostomy nurse will definitely be your best friend to you both in explaining things and helping with that. :) Now, the other thing... itchiness. Ahhh, don't we all? ;) Like another person on here who commented, if it's itching, definitely check for leaks. That, or... maybe she found an allergy. The reason I say that is because I found out that I'm actually allergic to the tan wafers and cannot use them. Whatever dye was used to make them, etc., my skin breaks out really, really bad. So, I've started using the white wafers and have had no issues since. That was so long ago. :) Check it out though, just to be sure. Lastly, I'm not really sure how long your lovely wife has had her ostomy, but truly, it is not the end of the world. Please let her know and letting you know as well, Kold, that you have lots of friends here to help get you both through it all. It does seem scary at first. I'll give you that, but let me tell you... it definitely made my life a whole lot better in the end. My definition of 'normal', as it were, has never been 'normal', but I sure feel like I am. :) I will always feel that way, even with an ostomy. One day she will too. If you all ever need to just talk, that's why we're here. Good luck to you both. Let me know how it goes, okay? (hugs) :D God bless!

I have a colostomy bag and have had one since I was 17 due to Crohn's and colitis. I am now 20 and I feel I lead a very normal life and do all the things I did before without the pain and suffering. Your bag is nothing to be ashamed of, and you can live life normally; you just need to find the right product! Best of luck to you.