Need tips on changing bag measurements - struggling with ileostomy

Hi all, I'm new to this site although I have had my ileostomy for 18 months now. Just to bore you (hopefully not too much), I was diagnosed with cervical cancer in 2008 and after having chemo and radiotherapy, I also had to have brachytherapy. Unfortunately, the brachytherapy caused 2 complex fistulas, although not until nearly 2 years after the treatment. This left me doubly incontinent. The pain from the fecal incontinence was unbearable, so I was taken in for emergency surgery in January 2011. The ileostomy was 'in a dip' due to massive weight loss (4 stone in less than 4 months), so I have always had problems with leaks. So that's what happened. My question (and confession) is that in 18 months, I haven't changed the measurements on the bag. I struggled to deal with the fact I had a bag. So, does anyone have any tips on the best way to do it? I struggle to look at the stoma and would never dream of touching it. I'm sure people think I'm daft, but I am where I am and I know that in the long run, it's got to be done.
Sorry for the long post, but that was quite cathartic.

First of all, Lynnsey, you're not daft nor is this a silly question. I always say "there is no such thing as a silly Ostomy Question" because we all had to learn and start from the beginning, and there is only so much information your doctor can give you. He sees several dozen patients a day - 5 days a week, so only so much time he has - and unless he has an ostomy himself (which chances are he doesn't), he can only tell you what he learned in med school or from someone telling him.

I received my ostomy well before there was the large network of information and support there is today - so I had to try to cope with very little support for nearly 5 years before I found my first online message board and support group, and when I did, not only did I learn more in just a few months than in 5 years from my doctor! So my best advice to you is to do as much reading as you can from posts from others - never be afraid to ask a question - and most of all, make some new friends! I think of all the dozens and dozens of friends I have made all over the world in the past 10 years as my extended family. It was talking to real people like you and me that live with an ostomy - and learned to accept it - and go on and live a normal life - that's got me over my issues of feeling less of a person with my ostomy. I've been in 3 relationships since my operation, and none of the ladies had a problem whatsoever with my ostomy - they taught me it wasn't others that had the problem - it was me! And once I realized that - and saw they loved me for who I was on the inside - then it was no longer an issue for me.

Now for your leak problem - are you using a "convex" barrier? In the beginning, I was lucky to get 2 days wear time with a flat one, but when my ostomy nurse finally had me try a convex, then that made a world of difference. Then I eventually started to wear a clip-on belt all the time except when I swim or shower - just for a little added pull of the barrier to hold it down good - especially when I bend. If you still get leaks using a convex, and you are properly cleaning the skin before you apply it - then that particular brand and style just might not be well-suited for your skin. Every make and manufacturer is different in how they are made and use different chemicals in their adhesives - so what gives me 7 days wear time might not work for 7 hours for you. So I tell all new or relatively new ostomates to always call, write, or email all the major manufacturers and request samples - and find out what works best for you!

So, take a deep breath and breathe a little sigh of relief, Lynnsey - because things will get better. Just continue to read and learn and make some new friends - who will be more than glad to give you a cyber hug whenever needed - and who knows, you might eventually find some fellow ostomates that live in your area. I've attended 2 national conferences (so far) and met several other of my ostomy friends in person - and there's no words to describe what a great feeling that is to be able to meet someone else just like you in person. CHEERS - James

P.S. - I now see you're from the UK - I have a couple ostomy friends in Southport and one outside of Manchester that's just a few years older than you.

Well, I don't think you are silly at all. Although I have crossed that bridge about looking at it (glares at her stoma once again) and touching it (omg, is that my????) it was a while before I could do either one. I am also new to this venue and I have found some very friendly people, but not in the General Chat room. No one is in that room. Wow, I do go on about that, don't I?

With regard to changing the measurements on the bag, my question is "what? Are we supposed to do that? Didn't the hospital do that once already?" With regard to the struggle to deal with the fact you have a bag, I too find there are days when I refuse to accept the fact that there is a freakin balloon attached to my stomach. I have found that refusing to speak to the bag does not work either, it is not offended by the silent treatment. I've heard some people have named their bags, so I thought perhaps that was my problem in getting along with it; however, it does not respond to "YOU BITCH" yet.

I suppose it is a bit like grieving, all those steps we have to take to get to the part where we can sit quietly (like the Mona Lisa) and just accept the obnoxious noises coming from our abdomen as if we haven't a clue where the noise is coming from. Acceptance, that must be the key. Well, I don't have that key right now. But, I'm looking for it and hope to one day be as valiant as so many of the people on this site are already. In the meantime, I'm busy negotiating, being angry with, and every once in a while blowing out my breath in exhaustion at a situation I did not ask for, is out of my control, but is the hand I was dealt. Is that spelled right? Oh, who cares? Anyway, my beloved daughter told me that as soon as I'm ready to fold the hand I'm holding, I'll be dealt another one. Easy for her to say. I can't wait to use that one on her someday.

Hang in there, sugar! It appears there are a lot of us in this boat. But look at it this way, if we all have an inflated balloon on our stomachs, the boat isn't going to go down easily now, is it?

Thanks James and Greer for your replies. It's so comforting to know that there are others out there who understand. Don't get me wrong, my family has been amazing (even my 4-year-old who insists on looking at it and then saying "eww, that's disgusting, can I have another look?") lol. They just don't really 'get it'.

OK, lynnsey30.  I'm not sure where to begin so I'll look for a beginning.  I'm a 71 year old guy living in New Jersey in the USA, preparing to celebrate the 50th wedding anniversary with the girl I met when she was fourteen.  I've been an ostomate since our 49th.  What a celebration that was! Before I was DX'd with a malignant colo-rectal tumor, then a bladder tumor I was, perhaps, the healthiest 68 year old on the planet.  After radiation, chemo, surgery, more chemo and about three years of constant pain and spending most of my life in the bathroom I got the stoma, the bag, the emotional distress and all that goes with it.  Before this I just didn't pay a whole lot of attention to toilet time.  I'm not a prude but I was never a fan of bathroom humor. We go because we have to and I couldn't really tell you size, shape, consistency, color or any other details regarding my BMs. I went because I had to go and that's all there was to it.  It's way different now.  Parts that belong inside me are sticking out of me. I never saw my butt before and now I could watch myself poop.  I don't but I could. People worry about odor control and so many other things that are not much different from before.  What was behind us is before is now in front of us and there are all kinds of things available to make it less unpleasant.  I'm told the stoma is not much different from our mouths. Really!  The whole digestive process begins in the mouth and ends where it ends.  I don't clean my mouth out with paper towels or wash cloths and I'm not going to sit around sucking on my fingers but I might have to wipe away some stuff from my stoma with TP and then I shower.  So what, it's me and it's my stoma and your stoma is part of you.  Wear surgical gloves if that makes it easier but just remember it's just a part of you that's saving your life.  Measure it so you get the best fit from your supplier and the longest wear time. Use the templates that come with the supplies and call the suppliers.  They're so helpful. The real disgusting thing about ostomies is how the medical profession, for the most part, speaks of them as the absolute worst, last resort, horrible conclusion to any digestive problem.  That's so wrong! It's a different way of going to the bathroom and, for most, it's getting their lives back.  I think you'll be just fine.  Keep reading the shared wisdom from our friends here and continue to share with us.  There's absolutely nothing for you to feel except fortunate for being you, getting healthy in body and mind  and having a place to vent.



Prayers,  Mike

My Ostomy Journey: LeeAnne | Hollister

I got my ileostomy on Jan 26, 2012. I was given some support and information when I left the hospital to come home. My supplies were ordered through Pharmasave, our drug store, so when I got home all I had to do was pick them up. A health nurse came and helped me with my first few changes. And then I was on my own, and that was when it started to sink in - the changes that had taken place in and on my body. I was scared about how I was going to handle this change. My wife tells me I am the worst person in the world to accept change, but also once I have accepted it, then I move on. My stoma has given me my life back, and I am now grateful. I look at the small things I am able to do now that I was terrified to do before. I look after my stoma, and I wear a guard over it most times to protect it. I do touch mine because it kind of droops down a bit, and of course, I have the stomach hair issue to deal with, so yes, I look at it and I touch it. And a couple of times a week when I do my appliance changes, I peel everything off and have a shower and let soap and water run over it, and it feels pretty darn good. On occasion, I measure it, but right now it is a pretty consistent size. People have named their stomas, and I named mine. I picked something that I really liked and enjoyed watching and is free and entertaining, so I called mine Bunny. I spent hours on this forum looking at old posts and new posts, looking for insight and for information. There is a lot of good help and wise people here. It will get better, and if not, it will get different. My drug store, I found, is not only good for my supplies but is also willing to just help wherever and even just talk to me about how things are going.

Thanks for your share.
Take care, Ed.

Lynnsy=

Honey, mine is in a dip - almost like it is in a tiny little bowl. It doesn't pop out away from my body like most I have seen on the web. I was having a HORRIBLE time keeping a bag on - sometimes losing up to 4 a day. I know firsthand how frustrating and painful this is to your ego and skin.

I found a great continence nurse who helped me find a new bag. I now use a one-piece Nu-Hope bag with convexity. Just in case you don't know, the convexity means that the part that attaches to your skin is convex, so when you press it on, it pushes into your abdomen - which helps those painful belly recessed stomas pop out some!

I use an Eakin seal between my skin and the bag, which, if you don't know, is a soft, sticky wax ring. This has helped A LOT with the leaks!!! I also used an ostomy belt to help keep it snug as Juust Jim mentioned.

The Eakin seals come in a clear, hard but thin plastic blister with a paper backing. When I need to make a new pattern, I use this piece of plastic to help. I place it over my stoma and use a sharpie marker to trace the EXACT outline of my stoma that I can CLEARLY see underneath that clear piece of plastic. Cut it out - place it on the bag, trace the shape, cut the wafer VIOLA!!

Honey, this thing has blown through me like a wrecking ball - I didn't want to look at mine either - but when the leaks kept coming, I had no choice. I now examine my stoma every time I need a bag change and check the pattern against the stoma to see if it may need even the slightest adjustment. The good thing about the plastic is you can clean it off! When you get those leaks under more control, you may not feel 100% perfect, but you will feel much, much better.

Love and luck to you!
Melissa

Thank you all for your kind replies. I shall try the seal things that have been mentioned. Not sure if my provider has these, but worth asking, I guess. My bags are convex (I think), certainly not flat, so that's perhaps the type that I should be using. I have been offered a tummy tuck if I decide to go ahead with the next operation, but I'm really struggling to get my head around being back in the hospital and leaving with 2 bags. Although on the upside, the stoma I already have won't be in a dip anymore. Thanks again xx

Hi Lynsey, well before I tell you about me, just read your opening lines and that is what I would tell you! I too had the treatments for uterine cancer and the fistulas etc. Only difference was that I was 2 years before you, so I can tell you a little of what the future may hold - and it's all good!
Initially I felt alone - I had never known anyone who had experienced what I was going through. I was angry, afraid and fearful that I would ever cope with such a mutilation as that is how I saw it. I leaked and at one time had 6 surface fistulas, how was I ever going to find a bag to cover all those holes? I didn't! I put up with it for as long as I could. My consultant who is [in my eyes] probably the most skilled, kind and finest in the world assured me that he would give me back my life. I was so depressed, my daughter was getting married and I felt an absolute mess. I refused the operation to repair the fistulas because I was afraid I might die on the operating table and no way was I going to miss my daughter's wedding day. He said I could go to him at any time, when I was ready to have it done. The wedding day saw me wearing the most beautiful outfit, on the outside I guess I looked composed and as the mother of the bride should look. Inside I was a nervous wreck, constantly going to the loo, checking for leaks. Even going home from the church to change my bag as it only ever lasted a couple of hours, despite my not eating the day before to reduce output. THAT incidentally doesn't work, as you still make liquid and that finds its own level!!! I'm sure you get the picture? Well I won't go on about me, but I can and do sympathize and empathize completely with how you're feeling. I was also terrified of touching the thing on my belly that always would decide to throw out its contents while I, with shaking hands, was trying to cover it up. Ooh the mess, I was a mess, the whole bloody situation was a mess. Fast forward.....4 years on! Well I did finally have the op' that put it all right and that was two and a half years ago. Believe me Lynsey when I say that I do believe the day will come for you when you will look back at all the pain, fear and suffering that you've experienced and say to yourself that your life is better now with a stoma than it ever was before. I don't think you will ever want to "function normally" again, with all the pain of the fistulas and treatments etc. Your stoma is your friend! The friend that tells you daily that you are alive, well and free from pain. OK so life is different, but it won't be long before you will be living life to the full once again and your lifestyle will be all that you want it to be - and more! Good luck and please try to be positive, after the storm, the sun will shine. Oh and by the way, you should have a stoma nurse or clinic in your area who will be able to help with all kinds of tips and tricks to make life more comfortable plus a good working knowledge of all the appliances and products out there too. Most of the big suppliers also have helpdesks that you can call and ask for advice. Some also produce a magazine that they will send FoC which is always a good read to hear about others in a similar situation. Please feel free to reply to me if you ever want to chat about anything.
Best wishes.

Darls, please go to a stomal therapy nurse. They will measure your stoma. You definitely need to get re-measured or you will suffer and the leaks won't stop. Please, please do it. And no, you're not daft. I never thought I would touch my stoma, but I did. I had an awesome stn to help me. It's pretty much like your tongue and I find it weird too, but sometimes I actually think it's another part of me. Guess it is. Please get yourself measured. I know you said you won't do it, but others will pop over here. I will do it for you. True, I would. Good luck. Welcome and whinge away. I've been there, done that, but like to lighten things up a bit. Suppose I've been around this site for way too long. xx ;xx mooza xx