Hi there gavin ... sorry to hear your going through a worrying time right now .. I know my brother in law has a stoma bag and I’ve never smelt anything and he’s had it awhile an seems to be coping o.k ... if your in pain I’m sure a call to your g.p and tell them, they will give you something to help ... as for sleeping, when I have problems sleeping I put u tube on and listen to either sleep meditation or westlife songs ... and trying to stay calm and not panic coz you can’t sleep... just go with the flow and you should drop off quicker ... especially if you can get something to help the pain too ...

hope that helps a little ... take care ... Chrisie xx

Can't help with the sleep problem or what will happen at your consultation. 

Pain can usually be managed with pain killers. Sometimes several must be tried before adequate relief is possible.

I have a colostomy and a fistula. Thee fistula is connected to my rectum and the stoma to my descending colon. I've had my sigmoid colon removed due to sepsis caused by radiation colitis. The fistula drains mucus from the rectum.

While adverts for stoma products will show people living active lifestyles, there are many people who have problems. People happy with their stomas are unlikely to spend much time on the interweb shouting about it and what you see mostly are bad news stories. Mine is one such.

There are loads of different bags from different suppliers, some with filters in and some not. Different bags suit different people and there's a certain amount of trial and error about it.

Leakage is a major problem for some. This will obviously cause smells. It only neds a pinhole size leak of air. This happens to me on the fistula site from time to time and I can correct it sometimes or otherwise simply change the bag.

Occasionally, bags will smell for no apparent reason, some makes more then others, apparently.

Blowouts and leakage of fecal matter. Happens occasionally if the bags are not sealing to the skin properly or the bag overfills due to excessive output. Bad sealing is often caused by skin problems. Sore,weeping skin will make a bad seal, which will make the skin worse. Barrier creams and sprays can help heal the skin but they can also react with the skin and create the problem to start with. That's happened to me.

My main problem is with my stoma. It keeps retracting beneath skin level and closing over. I've had it repaired once and am having it done again next Friday.

I could have the colostomy reversed and be rid of the bags but my toileting situation would be worse than before. Even bags with problems are better than that for me.

In general, having a bag should be better for you, providing you have no major problems. Once you are used to changing and emptying bags, it's just a different way of using the toilet and shouldn't, in the normal course of the day, cause any problems. And unless there's a problem, they don't smell.

I hope the above can help in some way. If you have any more questions, feel free to ask.

Best Regards

Taff

Thanks for the information. I am just starting on the road so will see what happens. But people with the stoma bag etc are a mindfull bunch with loads of information. Got the GP to see for the Free Presciptions form as paying for things at the moment. Or does a stoma nurse help with these forms?. And going to see if i can claim some benifit as lost my part time job and only get a small private pension to live on and pay bills.

Thanks

Got to say had a brilliant nights sleep used Vaseline on bum area no pain all night until pain killers due in morning. Thanks what a great world.

I can only say what happens in my case but I think it applies to everybody.

After you op and while in hospital you'll have clear bags given by the hospital, so they can see the stoma easily through the bag and without removing it.You'll be able to empty this though for the first few days the nursing staff will do it for you as it's hard to do yourself while lying in bed.

You'll be introduced to your stoma nurse team who'll show you bags you'll get to take home and you'll be left with one to learn how to open and close it. Dead easy but apparently some people get confused.

You'll be allowed home only when the stoma nurses are confident that you know how to use and change the bags. I was given Coloplast bags which apparently are some of the best and the automatic choice of my health trust.

You'll be given loads of bags as well as a free wash-type bag full of stoma gear to take home.

You'll have follow up appaointments with your stoma team on a weekly basis for at least six weeks and may have to try a range of things to overcome any problems. Not all supplies suit all people.

What happens with prescriptions is, your stoma team prescribe the necessary bags and accessories and pass it to your doctor. They'll also sign you up with Charter, who'll provide your stuff.

Well before you run out, you'll place an order with Charter. You then contact your doctor and tell them the order and they send a prescription to Charter. On receipt of the prescription, Charter despatch your order which is delivered by UPS.

Any changes to the prescriptions have to be initiated by the stoma team.

All stoma supply companies offer a sample service so after a while, as you become used to things, you may wish to try other products to try and counter minor problems yourself rather than wait for an appointment with your stoma team. If you find anything you like, you just phone your team and get them to change the prescription.

You can also get hernia belts and special underwear on prescription. You will be at very high risk of hernia, some say 100% given enough time.

As I understand it, stoma prescriptions are free for everybody if they're permanent.

Well worth having a look at the Coloplast and Charter websites.

Regards

Taff

Regards benefits.

If you're having chemo or recovering from chemo, you are automatically entitled to ESA and will not need an assssment. You will have to apply for it though and fill out the required form.

PIP is not dependent on what condition you have but on what you're able to do. There's a mobility component and a care component. Its a huge form and most people will need expert help to complete it as the correct terminology is required. People on chemo are likely to experience chemo brain and be unable to complete it themselves. Macmillan nurses have specialists in this area but never got back to me. Luckily I'm something of an expert on these forms myself although I needed help from my daughter. I was off me head on morphine and chemo brain for months. Still am a bit.

Hope this helps

Regards

Taff

Hi Gavin, sorry your having difficulties but your in a good place for support. From your message it seems that you haven’t yet got a diagnosis? When you see the consultant the medical team should have plans to tackle the issues. This includes timescales and whether things like radiotherapy and chemo are needed, or surgery. At the same time you may have contact with s specialist nurse who is part of the clinical team, this person should be there to give advice and guidance during and after treatment. Many people have treatment without the need for a stoma, it’s a case of wait and see, which is hard. As far as your question about stoma, smells and others noticing - many people go through life with iliostomies and colonostomies without others knowing and without mishaps which may create aromas.

i have had treatment over the past 18 months for bowel cancer, had chemo and radiotherapy then surgery and for 9 months a temporary iliostomy/stoma. I learned to have the stoma and bag and didn’t have accidents, smells or others knowing, went to the gym, trained in running cross country and had a full life.Four months ago this was reversed and I’m free of the bag which is great.

About your pain see your GP who should be able to prescribe appropriate relief. Sleep disorder is difficult, trying to reduce stress (which is hard) helps but also when and if a treatment plan is set up this may clarify things for you and help. Keep away from gooogling for information, much of it is out of date and misleading. Stick to good sites such as this one and the Beating Bowel Cancer charity site. This has great advice and information and a forum for patients.

Try to manage one step at a time without projecting into the future, it makes things more manageable. I hope things work out positively for you.

best wishes Chas

Thanks for the sound advise. Doctor said before the biopsy that i will need a stoma and radiotherapy  but have googled loads of bad information. I just want to get on with life thats why i came to this site to get users information facts. 

Really appreciated.

And there you see it Gavin, in Chasmac's post, the opposite end of the spectrum. While he was problem free, I'm still having problems. It has to be said that the only major blow-outs I've had were when I tried a barrier spray, which ruined the seal between bag and skin. Barrier wipes that I tried made the skin bright red and broken. I was able to overcome these problems myself. My problem is scarring that's pulling the stoma inside my skin, which then heals over. Eating solid food is another problem and at present I survive mostly on chicken soup. I'm amazed at the difference needed in diet pre and post op.

Anyway, here's hoping you get a problem free stoma.

Regards

Taff