Dealing with Ostomy Appearance & Smell: Seeking Solutions

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jpeters
Aug 01, 2013 12:21 am

I had a sigmoid colostomy 2 weeks ago and am having constant problems with appearance and smell.

I have a small diaphragm so they were forced to place the stoma right next to the belly button. To offset the increased risk of hernia in this location they brought it out a full 1.5". Of course, sex is impossible because the stoma would be in the way and I can't use my abs. But the main problem from location is that whenever I go out there's a giant point in my shirt, and everyone stares at me. A thin build makes it especially noticeable.

Another problem is the smell. There's always a bad smell, even with a tightly fitting wafer and clean bag. I think it's due to rectal mucus. The original problem was that the sacral nerves didn't stimulate the rectal muscles to tighten between BMs, so there was always a bad smell. Now I have the same problem to a lesser degree because the rectum doesn't close tightly enough on the mucus. I tried a glycerin suppository today, which did cause mucus to come out. However, I've been feeling rectal pressure all afternoon and when I went out people were touching their noses around me a lot more than usual. So it looks like I'm going to smell and have to hide from people for the rest of my life. Charcoal underwear is an option for social events that are absolutely mandatory, but it looks like day-to-day life will have to be solitary.

Has anyone else had these problems? Are there any solutions? Thanks for your time.

patri
Aug 01, 2013 1:13 am

It is an adjustment to make emotionally, these new bodies, jpeters. It really is a bit much; I felt subpar as a human for a while. My ostomy saved my life; it was cancer eating me up. That thought is what helped me snap out of my funk, that and just plain time. I've only had mine since March of 2012 and I've actually made it to the point that it's just a simple cosmetic concern to me. For the first couple of months, I could smell my feces when others swore they could not. I was told by a social worker friend that it was a neurological trick my brain was playing on me because I was hyper alert about smelling. She's a social worker for children, nonmedical so I don't know if she knows what she's talking about, but for me, the explanation kinda worked. In time, I stopped worrying about it and felt more comfortable, again I think it was just plain time passing that loosened me up. Finally, I settled down and tried irrigating and found that for me, it makes a big difference.

Hang in there, jpeters. Two weeks after surgery is no time to be making any decisions about the rest of our lives; right now it is normal and natural and to be expected that you'd feel uncomfortable socially AT LEAST so be kind to yourself.

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jpeters
Aug 01, 2013 1:28 am

That's for responding, Patri. I've observed people very carefully and they are reacting to a bad smell. I tried walking around the mall and people were touching their noses only when I walked by. I tried engaging a few people in small talk, and every single one of them touched their nose and reacted to me with hostility. The smell is real. It may be because I have a two-piece bag and there is a smell coming from the ring. Irrigation would fix that. But it may also be because of rectal mucus. I can't hold back waste the way normal people can, so it caused a bad smell for years. I seem to have the same problem with the mucus. After I used a suppository to flush out the rectal pressure, it was much worse and people reacted much more strongly to the bad smell. So it seems to be a rectal mucus problem, which means permanent isolation.

There is also the problem of how I look. What do you do about a giant point sticking out of your shirt front? I live in a very hot place, so I can only wear a coat 2-3 months/year. I don't know what to do the rest of the time...

mild_mannered_super_hero
Aug 01, 2013 1:53 am
Have you asked your doctor or nurse if you qualify for irrigation? If so, and I think you would, that will help your smell problem if it's the poo that's causing the trouble.

I assume that the rectum was not removed? If so, I can't help in that regard.

Perhaps if there is no chance of reversal, it should be removed.

If you can successfully irrigate, you can wear possibly a compression tee shirt under your normal shirt and leave the top shirt untucked.

I have a hernia and wear a similar setup to disguise it, and it works well.

I would add, do you use the Eakin rings? Possibly you are just not getting a good seal on your appliance. Newbies always have trouble until they get all the details worked out. There are several threads here on irrigation and also how to get a good/prevent leaks... search for them and read up. If I can be of any help or you can't find the threads on these subjects, just give me a message. Good luck, don't give up... it takes a little time.
patri
Aug 01, 2013 1:59 am

I'm delighted for you that you can irrigate. I believe that irrigating and wearing a cap instead of a bag and perhaps wrapping your torso with something snug to push the stoma flat will be a great solution. I also understand that right now things just feel like it's too much to ever sort out and the future looks grim if not uncertain. Hang in there, you are still in the worst part, things will look up.

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
jpeters
Aug 01, 2013 2:02 am

I'll definitely try irrigation in a few months, after healing more from the surgery. The compression t-shirt is a great idea if you only have to wear a cap on the stoma.

That will remove any stoma smell, but I'm concerned that the problem is the mucus. The surgeon refused to remove the rectum completely because it's a much more serious operation with risk of nerve damage, etc. So I'm stuck with it. He did clip the rectum down to 2" of the sphincter, so at least there's less of it. But there's still enough mucus to cause a bad smell.

I don't use Eakins because the stoma site is convex, not concave. I always get a tight fit with the wafer, and haven't had any leaks or bag malfunctions.

jpeters
Aug 01, 2013 2:03 am

Thanks, Patri. I've been sick for 5 years, so the ostomy really doesn't bother me. I'm just desperate to get rid of the smell. I don't even care if I look strange, as long as I don't smell. That's why I got the ostomy in the first place. I really do appreciate your kind words though and am very glad that you're doing well with your colostomy.

patri
Aug 01, 2013 5:03 am

You know, it's interesting; my adjustment period would have been offensive, probably for you, because I wasn't sick (that I knew of) before having the surgery. I got diagnosed with cancer and I think it was about a year later that I got the ostomy (either from the high doses of morphine or maybe from the chemo). I seem to have developed a problem computing math in my brain very well. When I try to figure out certain things, I keep drawing blanks. Not like I can't remember, but what I remember doesn't actually make all that much sense, really. I say offensive because I'm guessing, but it seems to me that Crohn's patients or Irritable Bowel patients (I'm rather ignorant of the various conditions that result in ostomies) might have little patience, understandably, for someone who felt fine their whole life then ends up with an ostomy. I'd imagine having been sick for years and probably in pain, the surgery is a relief rather than hardship, and yet along come people reacting as if it is a horrible thing. Life is so relative, like that happiness thing.



It took me some time to feel up to irrigating. It was easy to learn, even by myself, because there are people that have put up tutorials on YouTube. When you feel ready, search "ostomy irrigation" for inspiration, and meanwhile, hang in there. Sometimes that's really all we can do that's effective.



I hope that what's happening with you is like what happens with me when I'm out of balance with myself: nothing works, nothing makes sense, my future looks barren of pleasure or warmth, and there's simply nothing to be done for it but deal with it and try to be a good sport. I've learned that those moments pass all by themselves and to just keep busy doing something not terribly important but that will engage my focus. Eventually, I realize I'm back to some semblance of myself and see things more positively, feel more positive myself. Nobody wants to smell, I get where you are coming from. I hope that this is just one of those things that sorts itself out and in hindsight, you chalk it up to stress and are glad that it worked itself out. I really do believe stress does crazy things to us. It is my hope that things are just a bit rough right now and within a few months, you will be smiling and living as you expected when you decided to take the operation: looking, feeling, and smelling good.

jpeters
Aug 01, 2013 5:33 am
Hi Patri,

I'm not at all offended by your adjustment period. It's natural to feel depression if you go from feeling healthy to dealing with an ostomy. And although you didn't go through a long period of GI sickness, you must have suffered plenty from cancer and chemo. I'm really glad that you're feeling better and using irrigation to take control of your ostomy. Hopefully with time your memory will improve and things will start making sense again. Have you ever tried a brain training game like Lumosity? You can specifically work on memory, concentration, pattern matching, etc. It might really help. Also, are you able to get enough healthy fats, vitamins, and antioxidants in your diet? Your brain rebuilds neural pathways all the time, but it needs the right nutrients to do it.

I've spent the last 6 years going to the bathroom 20x/day and constantly smelling like waste. All I did was work and hide in my house. Unfortunately, the colostomy hasn't removed the smell, so I still work alone and hide at home. I've had to adjust to the idea of never having family, friends, or a girlfriend. That's what pushed me to get the surgery. And now things aren't any better. You might be right. The smell might go away with time, or there might be an effective method for flushing out the mucus. Suppositories aggravated the problem, but maybe an enema would do it. All I want is to smell clean, so I can have people in my life again. Beyond that, there's really no depression.

Thanks very much for your thoughtful and encouraging reply.

JP
Bill
Aug 02, 2013 8:55 pm
Hello jpeters.  I just wrote a long, rambling reply to this topic and then the system froze and threw me out. I am sorry, but I now do not have the time to try to recapture what I said.- If it accepts this post, I'll try to get on here another time to share my own similar experiences of this problem.

Best wishes Bill
Bill
Aug 03, 2013 6:37 am
I do not find that writing comes easily to me, so you might imagine my irritation at having written quite a long response to this thread only to have it aborted – apparently because they had trouble with the system on 02-08-13. Because of  this I am writing  this in Word as a test post to see if it will transfer easily over to the ostomates site.  If so then I will attempt to recall my previous comments in Word  so that I don't lose it all again.

Best wishes Bill



xmlo/o
hollska
Aug 03, 2013 9:11 am
It sounds like the reason for my ileostomy is very similar to yours. I had a colostomy in 2008, had a huge hernia repaired, and the stoma moved up to my waistline in 2009. My disease (Hirschsprung's Disease) continued to progress, and finally last September, I had a loop ileostomy performed—and this will certainly be with me for the rest of my life.

Actually, my colostomies were done originally to treat fecal incontinence. Because Hirschsprung's causes severe constipation, I had probably five surgeries to treat the complications of incontinence due to multiple fissure repairs and a megacolon I had developed. The bag was the only thing that allowed me to get outside of my house after several years of being homebound. My GI doctor explained that my colon below the stoma would continue to produce mucus. Fortunately, mine doesn't make lots of this mucus—but from time to time, I will have the sensation of needing to have a BM through my anus—and this is very painful. I have found the solution to this is an enema. I use warm water and usually use a Fleet's enema bottle, as I don't have much room for lots of water. I, too, have no sphincter muscles, so it's hard to keep the water inside long enough for it to loosen what is there, but I have found if I take a soft cloth and "plug" the opening and then lie on my side with a waterproof pad underneath me, I get the best results. I try to keep this inside my rectal area as long as possible and then I hurry to the toilet. When the water is expelled, the mucus comes with it. If you have more control of your sphincter than I do, you can do this in the shower as that's a relaxing time and you don't have to worry about dripping mucus and water on the bathroom floor.

This has completely helped me get rid of that painful, annoying "phantom pain" that has come as a result of having the mucus in my rectal area. Please consider giving this a try. I only have to do this every few weeks, but you could definitely do it once a day if you feel it's necessary. I hope this can give you some relief from the pain and also the distress of feeling like you need to be homebound. I've been there and done that—and it's really depressing. Let me know if you try this and it works—or even if it doesn't work. My GI specialist—not my surgeon—is the one who recommended it. He is a very skilled diagnostician, and I trust his treatment implicitly. Hope you get the same good results.
Bill
Aug 03, 2013 12:32 pm
Anal mucus solutions



Hello Jpeters.

My colostomy was done for similar reasons to yourself and Hollska so I won't dwell on the antecedents except to say that when I was incontinent of faeces I did have to anally irrigate. So, when all the recommended solutions to the problems of anal mucus were tried and found wanting , I turned to the method that I had used before.  

Before I proceed with an explanation of my own solutions to mucus, I would recommend anyone to try some of the less drastic solutions before attempting the sort of irrigation I now adopt.   I found that the coloplast  anal plugs were an ideal shape to hold in place reasonably well but they are made of the wrong material and do not absorb the mucus.  Also, the mucus builds up behind them and you run the risk of it all coming out at once.

I tried the largest size of Tampax, which worked well in terms of absorbing the mucus but , because of their cylindrical shape, when they were soaked they would also slide out with all the mucus attached and following, which somewhat defeated the object.

I tried suppositories and enemas but they were next to useless for me.  There is a sort of foamy soap stuff on the market for this problem but my doctor advised against this because its ingredients might cause unwanted side-effects for me.

Now to get down to what did work:

The Coloplast, Peristeen anal irrigation pack (29121) does not work in itself because the water bag is to small and there is virtually no pressure exerted by the water. For those who have sphincter problems and think that sealing the anus is the answer, the rectal catheters (29123) do have an inflatable balloon attached to overcome this very problem. Personally, I wanted to use the catheter so that I could flush water under (adjustable)  pressure in the bath, so that the mucus would just drain away at the time of irrigation in a place suitable to cope with the mess. Having faulty sphincter muscles proved to be useful in that it did not hold the water in the anus but allowed it out at the same time as putting it in.

The rectal catheters needed a bit of alteration before they could be attached to the shower hose. The first thing that was necessary was to disable the inflatable balloon. I did this by melting that section of the plastic and simply flattening it but I would think that a small plug in the entry end would also do the trick. I then had to attach a normal plumber's fitting to enable the catheter to attach to the shower hose. This was much easier than I had envisaged as the olive ring in the fitting was just the right size to fit over the end of the catheter.   These catheters are supposed to be for single-use only but the thought of making a ‘special' every time I wanted to irrigate would be beyond reasonableness.

The thing that concerned me the most was that I did not know how much of the internal tubing they had left up the anus. I did not want to be poking the catheter in and rupturing the anal wall, especially in the early days when the surgery had probably left weak points.  The obvious answer to this was to use the ‘finger-test' and I did not push the catheter any further than the length of my longest finger. This method was only of limited success because the catheters squirt water sideways  from two outlets at their end. It was not getting rid of the mucus from deeper inside the anus. I then cut off the end of another catheter and smoothed down the rough edges.  This acted like an open ended hose with a small enough hole to exert enough pressure to dislodge any persistent mucus from the upper regions of the anal canal. (and there was plenty of that)  Once the straight hose had done its job I would use the sideways jets, twisting the catheter round as I withdrew it so that it washed all the mucus from the sides of the anus. I joked with my wife that it was just like when I sweep the chimney.

This method worked very well and there is no describing the inner-satisfaction that emerges upon seeing all that grot floating off down the bath and into the plughole.  

However, like most things to do with ostomies, this only resolved part of the problem. Whilst it cleared out the smelly mucus and lumps of indescribable grot, I felt that it actually stimulated even more of a clear, non- odorous mucus. The main advantage to irrigating like this was that it cleared up the smelly mucus. The other, cleaner  stuff could then be dealt with by way of incontinence pads.  As time progressed I was able to stop irrigating for a while and the smelly stuff did not return. Also, when I was not irrigating there seemed to be less of it. So now I only irrigate when I think the smell is returning , which is approximately every 6 months or so and then I only do it on the odd occasion.

(Just as an aside, I investigated possible reasons for the smelly mucus and concluded that we humans have the remnants of primitive anal glands that other mammals have.  It is these glands that produce the smelly stuff and the purpose of this for other mammals is territorial marking. It doesn't make the smell any better but it does give a rational explanation for it!)



I do think there is plenty of scope to improve on my efforts in that the pressure- irrigator that I have made for my ostomy could well be adapted to anally irrigate as well, which would be less equipment in my bathroom or to cart around when travelling.

I did try the Braun irrigator but that too had a very small water container which would be okay for ostomies but I think not for anal irrigation.



I believe that it is useful to share with each other what we do to resolve problems. However, please do not take my methods as necessarily being suitable to your situation. There is always an element of risk involved in this sort of experimentation and great care needs to be taken not to cause more damage than there is already.  I have always shared each of  my ideas with a very interested and understanding ostomy nurse, who makes pertinent comments and suggestions as to how I can improve on my experimentation and also supplies me with stuff that I would not be able to put my hands on outside the medical profession.  If anything were to go wrong I would not be mentioning this helpful nurse, as the National Health Service are always looking for one or two of their own to ‘blame' for anything that goes wrong.



Best wishes Bill.
jpeters
Aug 06, 2013 3:20 am

Hollska,

I'll try warm water enemas from a Fleet bottle next. I don't have your issues with sphincter tone, so I should be able to hold the water in. If there are any issues, I'll try using a soft cloth as a plug. It would be great for getting rid of the phantom pain and constant rectal pressure. Thanks very much for the info.

JP

jpeters
Aug 06, 2013 3:32 am
Bill,

Thanks for taking the time to retype your post. It's always a good idea to type long posts in Word, just in case.

If the water enemas fail, then I'll try a tampon. I don't have your sphincter issues, so I should be able to hold it in longer. That may make it more effective.

I agree that phosphate and other chemical enemas are a bad idea due to side effects. It's especially important to maintain good health when you have an ostomy.

Next on the list is the anal irrigator. If I have the same issue as you with lack of pressure, I'll move on to rectal catheters. I'll try your method of using both a straight hose and sideways jets. As a last-ditch effort, that should completely eliminate the mucus.

It's interesting that your mucus smelled less bad over time. The smell is caused by bacteria, so it may be that you had to flush out lingering bacteria from when your colon held waste. It is good to hear that you have fewer issues with it now, and it's great to hear that you're married even with these GI issues.

JP
jpeters
Aug 06, 2013 3:35 am

Thanks, Mara. I'm switching to closed-end bags, but will consider your perfume option if I switch back to drainables.