New to Colostomy - Waiting for the Other Shoe to Drop

Hi

I am very new to the ostomy world and am finding it all very amusing. I had an emergency colostomy done on the 11th November, 6 days after seeing a specialist up at the emergency room at the hospital. I knew I was in deep trouble with constipation, but I did not expect to have to have a colostomy as the first choice solution. That spun me out! But at that point, I was at the shoot me or fix me stage from the pain and that bullet was sure looking attractive.

I was so upset and so confronted by it all, but then a friend put me on to this forum and I came here and found you guys. And that made it so much better. Real folks with real voices who understood my terrors and my worries.... I went into that operation the next morning knowing I would at least be able to come get some support afterward from people who seemed to be talking my language. I learned so much in the 20 minutes I got to sit and read this forum - thanks for that.

So I had the operation and am now pain-free for the first time in 40 years. I lost pains I didn't even know I had until they went away!!

I have gone from eating one meal a day and suffering heaps of pain and terror going to the littlest room in the house, to 3 meals a day + snacks. And still, I've lost 2 dress sizes and a cup and a half up top. I can go to the toilet and not worry about bleeding from the wrong places, stop worrying about pain, and I have stopped fainting off the toilet! Yippee.

I am feeling so much better than I was.

That said, I am sort of waiting for the other shoe to drop. It can't all be this good, can it?

I sincerely hope so.

I got out of the hospital after 8 days of the stoma playing nice. I could change the bag in seconds and could change the appliance within 7 minutes. It was great.

I got out of the taxi after being driven home to the first leak I'd ever had. When you guys talk of leaks.... well, I thought you meant something completely different..... That first leak was horrible. Tomi did it again the next morning, necessitating a full change at 7 am. Then he did it again.... but I figured out what I was doing wrong - forgot to run my fingers around the stoma to ensure a seal - too worried about getting ick on my fingers! LOL. Now, I just don't care... don't want the whole leak problem again. Bleerch.

Oh but those changes that take seconds in the hospital - 20 minutes for a bag change at home! 20 minutes!!!! I was sodden by the time I finished and in tears.

Sunday I had to do 4 bag changes in 10 hours because Tomi wanted to show off that he could work - or was that overwork.

Monday I was convinced I was never going to leave the house again or even get dressed ever again. It was a bad day and made worse by the fact I had to actually ask for help. I hated that part of it. But I got a Community Stomal Therapist who was able to come out and visit me. That was great.

She came and took photos of my stoma and thus was born Tomi the Celebrity Stoma.... and I have been milking that for all it's worth to keep my humor.

I can't believe how massive a change in me there has been less than 6 weeks post-op. Sure I get tired easily and I can't lift anything heavier than the phone book, and I can't run to catch a train, but I have left the house, gone shopping, got on a train, eaten out in a restaurant, have the energy to eat, have an appetite for the first time in 10 years, and am pain-free.

God bless Tomi is all I can say...

Thanks for sharing, LilacFaerie. Your cheerful and positive attitude, despite your leaky issues, is inspiring. Stay well!

Welcome LilacFaerie!

Yes, it most certainly can!

Even with a few leaks, if you're feeling good just 6 weeks after surgery, it can (and does) only get better!

2 years after my ileostomy, I am living proof that life has never been better. After 20 years of Crohn's disease, it's such a good feeling to be living my life rather than just observing it!

Thanks for such a positive post,

Jo x

Hi there and welcome aboard! How lovely to read your story and how good you are feeling now despite those leaks - even after 6 years I still get the damned things!
Keep smiling,
Rach xxxx

Hi - glad to hear you're coping. A very good leakproof system that works for me (having tried ALL the others is this:

Hollister type 3624 pouch, Eakin 839002 small cohesive seal, and LBF no sting skin barrier
No. 3820.

Also Hollister type 8770 clamp. The pouch is clear with micropore flanges (essential)
so you may want to get a pouch cover.

This cut down my leaks 90%!!

Good luck, Ray

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Lilac,
I'm glad that you came away with such a great attitude. You seem to have "him" under control. And, it will get better as you learn to cope. Even take long soaks in a bathtub, but be careful!
You don't say if you contemplate a reversal. The prognosis is supposed to be that if it was an emergency procedure, it is reversible. I had my colostomy due to being injected in the abdomen and puncturing my colon 8 times. I was getting the injections for another condition and am very thin, the injection was given straight on instead of at an angle. However, you may be eligible for a reversal. My surgeon told me that I could have a reversal in one year. But when the year was up, she refused to do it and told me that I would have the bag for the rest of my life. I told her that "that dog won't hunt" and went and found me another surgeon who did the reversal. I have been "back" for over a year now and all is well and I am fine.
Although you are happy now, and I am glad for you, in time you will want to reverse. Then hang in there and find you a surgeon that will accommodate you.

God bless

Jacksprat

Hi

Thanks for the kind words of support!
I am looking forward to the long soak in the bath. I have Reynault's Phenomenon where my body reacts to the heat and the cold, but I don't feel it until my legs are purple to the knees or I am burned... not fun, so I have been terrified of burning Tomi. I've been bathing in about a teaspoon of water... or so it feels. LOL

I would love to be able to relax and just soak.

I had a handheld shower fitted into my bath this morning so that will help a lot.

I went to see my surgeon on Friday and she is very pleased with my progress. She is planning on leaving me to enjoy 3 months of pain-free existence then getting me back in to see her in March 2011 to discuss surgical options for my future. I have massive scarring and fissures and hemorrhoids inside my anus and a very stretched and floppy descending colon. The surgeon is hoping a nice long rest will let much of that heal on its own, but if that doesn't happen she will do some surgery to fix me up. She wants to do a colonoscopy to see if I have diverticulitis to add to my joys down there... have all the symptoms.. but then I have all the symptoms for bowel cancer too, but am so far okay. I am hoping that it will all heal itself. I'm a fast healer so that is a bonus.

The surgeon is talking that it is a temporary colostomy and we are estimating an 18-month time frame to let everything sort itself out, however, to avoid disappointment etc I am thinking permanent so that if it is temporary that is a bonus.

I have to say I don't think I can go back to my pre-Tomi state. That was just awful and I didn't know it wasn't normal so never got any help for it. I got used to it and it was only when I had massive bleeding from my anus that left me sick and fainting in Edinburgh on holiday that I thought I ought to do something about it. Of course, I waited till I got home and then another 6 months before that thought became action and I asked for help. And 6 days after being seen by the specialist into surgery I went.

Kind of got the message this was serious! And the surgeon told me on Friday if I had not had the surgery I would have died. OMG!!! Yes well, good thing I finally asked for help. LOL

Now all I have to do is learn to take things slowly.. I am not good at that. I forget that I have limitations right now, and zoom off to do something, and after it's done, Tomi complains and my stomach hurts. I did that yesterday and today bending is a trial. I will learn that Tomi is there eventually but I tend to forget and zip here and zip there and oh boy!

Tomi has been a total lifestyle wake-up call, in all the most positive ways. I can do things and enjoy things I have never been able to do or haven't done for years. Okay, I need to add them more slowly to my new lifestyle, but I am learning to pace myself, but gee it is so exciting to be able to eat, to be interested in cooking and eating, to be able to move without stabbing pains in my hips.

I feel alive for the first time in years and I would hate to do a reversal and end up back where I started so this will be a huge decision when the time is right. At least now I am getting the medical care I needed so many years ago, and now I am able to listen to my body and take care of it. I am still a newbie at reading its signals - but I am learning.

Isn't life exciting??? It feels like I woke up in the hospital to a brand new world and I am loving every minute of it.

Right then, firstly welcome to our wonderful forums. The people here are the most supportive and friendly bunch I know.
Secondly, thank you for being so open so soon after your ostomy was formed. It takes some people a very long time to accept they have to crap differently and the work that goes with having an ostomy.

Thirdly, when your stoma is overactive, has anyone ever mentioned using a drainable pouch? When it's full, all you need to do is go into the toilet (I used disabled toilets 'cause I can) and empty it into the bowl, then rinse it out. Two minutes and you're done. Just check out the Hollister, Dansac, and Coloplast websites. They have heaps of info.

Lastly, don't let your stoma stop you from living life. Sure, eat what you want, but remember moderation or you'll gain too much weight. Also, if you want an active lifestyle and worry about hernias and such, then get an ostomy support belt or undergarment from Omnigon (they have a website too).

As for burning your stoma, never fear unless you're pouring water from the kettle (God knows why you would do that, lol). It's fairly resilient. I have soaks in the bath now and then and swim and such, so go for it. I also go to the gym five days a week and work out, do weights and cardio, but I always wear my level 5 hernia support belt. God knows I have had my issues with hernias, but we'll cross that bridge if you come to it.

Anyhow, G'day from NSW (go the Blues) and welcome to the fabulous world of ostomates.

Lilac;

It's great to hear your story, and know that some of the good folks on this website were able to provide you with some comfort in the pre-surgery stages. Now that it's all been said and done, I did have a few thoughts on your ongoing issues.

Everyone here will tell you that in the beginning it's always tough. You have leaks at the worst of times (is there ever a good time)?, you have sleepless nights where you are terrified that the bag is going to burst and spill poop all over your bed sheets, etc. This is normal, we all go through this stage of "normalization". I should mention here that I use the word "we", but I personally do not have an ostomy, my husband does. I say "we" though, because during his adjustment period, we both went through many scary and smelly experiences hehe.

You mentioned waiting for the other shoe to drop, and said that it surely couldn't be this good forever. Well, you're right, it *won't* be "this good" forever. It'll be BETTER! Trust me! As time goes on, you will get more used to your new body, and you will quickly find that a new lease on life is gained post-surgery. It sounds like you're already starting to experience this, actually. But you'll see it and notice it even more once you aren't so worried about leaks, and have had some time to adapt to how your stoma is going to work (the nature of your output, how to best care for your peristomal skin, etc). It all comes with time, trial and error, and lots of practice. Your sense of humor will carry you through, and serve you well in the end.

Welcome to the forums, and here's to hoping we can help you as you go through the motions of getting used to your brand new (probably much healthier) body.

Tiggy

Welcome to the club!
Goodness, I remember my first leak. It was dreadful. I was in line at the bank and had to run home. I had several accidents that first year as I adjusted. The worst one was at the airport and my supplies were checked in my suitcase. That was traumatic and incredibly embarrassing. Needless to say, when I travel, I keep them with me.
The other shoe that will drop is while the surgery is a lifesaver, you have lots of maintenance issues to deal with - mostly around keeping hydrated and watching what and how you eat. Also, watch what kind of medicines and pills you take. They can get stuck and not all of the capsules will break down, making it ineffective.
It is so nice to talk freely here. I second that.
Good luck, dearest.

Thank you so much for your kind words.

Oh my - I think I would die if I leaked in public. You are all very brave. You handle it all with such aplomb. It's really cool. If I can handle my disasters in public even partway as well as some of you on here, I will be happy. I dread the whole OOPS in public. But I've been shopping - even managed a little Christmas shopping, - although I do tend to guard Tomi all the time and I am scared of folks bumping into him or slamming their trolley into him. I'm sure you know the shopper I mean... walking one way while looking the other..... lovely.
I am scared of hurting Tomi and am very gentle with him.

I have experienced the pouch explosion at night - eeewwwwww - and dealt with that. I have not had a leak out of the house yet, but am carrying supplies just in case.

But I have managed to get into a sort of routine with him, and even talk to him when I do the bag changes and the whole appliance change. I've been able to change the bag seated on the throne so I am happy.

Funny thing though, I ran out of the Adapt lubricating deodorant.... and for well over a week I went without. I had been told that the bag could be lubricated with vegetable oil (does that count as having veggies in your diet.... LOL) so I got a bottle of olive oil and so Nodor anti stinky drops, and used that instead. I think Tomi likes this mix more than the Adapt. He sure works better with it. With the Adapt I got pancaking around the flange, but with the olive oil, no pancaking, no sticking, no stinking and best of all I didn't want to scrub my fingers the minute I got the oil on them (Yippeee!)

Now we have the Adapt, and I used it - Pancaked within 10 minutes. And stank too.

I guess Tomi is opinionated...... LOL

Anyone else have trouble with the Adapt lubricating deodorant? Does it smell? Or is it that the stuff is interacting with the Hollister New Image flanges and pouches?

My biggest problem is remembering to drink enough, and coffee doesn't count I have to drink a minimum of a litre of fluid a day, and I find it so hard. I am trying to do the whole water thing, but geez. So I've added Apple Juice to my diet and I can drink that all day every day. I love it. But getting that water content is hard. I'm working on it. I can do it if I am doing nothing else, but the minute the phone goes, or the TV goes on or I am talking with mum.... I forget to drink. It's not fun.

I have tried salad veggies and done okay with Cos Lettuce, but I think Tomi is not good with bean shoots. They gave me gas. rats! Oh well. I will be trying more stuff as the days pass.
I've lost 10 kilos to the horror of my doctor (gaining my ideal weight has been a 20-year struggle) gained back 5 kilos through healthy eating, and am monitoring what I eat to ensure I eat only small meals but lots of them. I think my body is in shock! It's quite a jump to go from barely eating anything to 4 or 5 small meals a day. And it means Tomi works throughout the day. He seems to like it so that helps.

I feel like I am chewing for Australia lol but that is better than when I was in the hospital - I was peeing for the Olympics. I managed a mega 940mls one time... trust the nurses to be monitoring and measuring my output. It was embarrassing. But then I was drinking about 2 litres of water a day. Pity peeing isn't an Olympic sport... we'd all be able to take home medals. LOL

I'm building up to the big taste test... Brussels sprouts. Oh how I love them, and I just have the feeling that Tomi is not going to. So I have reserved them for a brave day in the future. He's had enough challenges recently what with pickles, and bean shoots, and cauliflower... And it's turkey tonight - that should give him something to think about. LOL

Who'd have guessed the result of the colostomy would be food pacing..... giggle

I am finding that I am enjoying my life so much since the operation. I can't believe how much more I love life. Yes, yesterday was a bit of a down day, but I'm upbeat today and am loving my life. I can handle the odd down day, better than being dead.... that's down for the count and I am so not ready for that!