The problem with stoma bags

I have been trying various stoma bags for my and Tomas’s needs recently and really need to find my perfect bag, and I don’t mean a Gucci.

 

I need the perfect bag, who can solve my problem? any takers

Since I first got my stoma 4 yrs ago I have been on the search for the right stoma bag, and  it is a very long journey indeed. They all have good points, some more than others but can I find exactly the right one to meet my needs? the answer is unfortunately no, not for me and my fistula with its irregular base shape and output issues.

If I could have a mixture of bags rolled into one my choice would be…

The base plate of the Pelican Platinum with vitamin E

The colours and no sagging effects of the Salts Confidence B

The selection of sizes and baseplate sizes of the Coloplast Sensura Mio.

So the things that don’t work for me but would work for me if different…..

The Pelican Platinum balloons like a dodgy lip job, but the base plate sticking is by far the best I have ever used ( and believe me when you have a pooing fistula, this is essential) When it balloons it can lift off with the weight of it which then causes leaks, it isn’t all the time but it is a problem. The size is great for me with it being a mini but I don’t mind larger. If this bag was in the colours and material of Salts Confidence B and Coloplast Sensura Mio, I would be the happiest ostomate.

 

Salts Confidence B is an amazing bag in many ways, the colours are superb, the material is perfect with next to no ballooning and the way it sits ( no sagging when full ) is fabulous, BUT the baseplate although sticks well on the whole, it can’t manage to stick well where my fistula is. This is a real shame because I really like everything else about it and it causes very sore skin just at the bit around my stoma.

Coloplast Sensura Mio is a great all rounder with a a good solid grey colour and many options with sizes. Again it doesn’t seem to balloon and it sticks quite well BUT again, it can’t cope with my fistula, so again this is sad news because I love the bag too.

I cannot explain how painful and itchy getting sore skin is, it is so bad that the only thing to help it is to take the bag off and attend to your skin, let the air get it ( with plenty of tissues ) and try various lotions and potions to ease it. Can you imagine a sore then loose poo getting onto it for hours? It burns.

I know there are others bags on the market, but for one reason or another I really didn’t like them. These three are as near to what I like that is available ( I think ) so if you, the supplier, could get your heads together I would be very pleased.

So for now at least, I will be continuing with the Pelican Platinum because the baseplate is so important to me and my skin.

 

4 year stomaversary

I started this post just before the coronavirus pandemic became more widespread  so that is why it hasn’t been mentioned in this post, yes I am worried as I have other health issues that mean I could be vulnerable if I do get the virus, stay safe everybody.

Sometimes it seems an age ago, sometimes just yesterday, but what is for certain is that it’s a rollercoaster ride having stoma surgery. 

Stomaversary 3rd April

How do I feel 4 years on ? Do I celebrate or commiserate? Well I am certainly still here, and mostly enjoying life. I say mostly just because of the little blips I keep having or have had since surgery. My stoma’s friend the fistula, that’s a big blip and so is my leaking bottom parts, that’s more than a blip, but in general I feel good.

 

All the years living with IBD make me realise things are so so much better with a stoma. I can go out and about without the worries that go with having a severely diseased colon and although I still need to use a toilet to empty my bag, the urgency isn’t there anymore.

What about body image after all these surgeries? I admit I don’t like the bottom of my abdomen scar and having my large bowel removed seems to have made me lose my power of a fast metabolism, that I don’t like, as I have a love of anything sugary. I am still going to the gym which I actually like when I am there, and I come away feeling much better. I have limitations at the gym but I work around them. ( Alas this is not to be anymore for the foreseeable future due to coronavirus)

I have met some wonderful people in the stoma community and have a new interest with my blog which has given me some great opportunities. I have brilliant family and friends so I manage my issues with support. I have been lucky enough to have helped others with my story and hope to keep helping others who need it. My story isn’t there to frighten but to prove life goes on with a stoma and it isn’t so scary after all once you are through the surgery and recovery period.

One thing to mention is that most stoma patients don’t just have the stoma to cope with, many of us have either complications from surgery or disease severity before surgery, and /or other auto immune diseases/ issues, so life can be difficult but with the right support, we can enjoy our lives.

I am awaiting for another MRI to see why I still leak and am on a different inhaler for my asthma. I still have foot drop after walking a distance and have been given various devices to help me, but to be honest they are not that great. I have had a confirmed diagnosis of idiopathic intracranial hypertension after two lumbar punctures found raised pressure, which I have pulsatile tinnitus and headaches, luckily for me I don’t appear to have papilledema which causes blindness due to the swelling of the optic nerve.

It would seem I am doomed to ill health, and believe me I felt that way when I started with all this and still do to some extent, why me ? who knows but it all happened in the last ten years ( apart from the Crohns colitis, that was when I was abut 20 years old.)  It could always be worse so for now I cope with what has happened.

Once again stay safe everybody and hopefully this awful time will pass quickly.

 

 

The struggle is real / stoma bloopers

CROHNS AND COLITIS AWARENESS WEEK 1-7 DEC

WARNING EXTREME TOILET HUMOUR

There are many occasions when things don’t go to plan with a stoma, it can be a right nuisance but you can laugh about it after,  if you can see the funny side.

1. Splashback, we’ve all been there sitting right back on the loo, you pop a piece of loo roll onto the front of the bowl and open the bag. Before you know it the bit of loo roll had slipped and the poo has gotten all down the front of the bowl AND splashed back onto yours truly. You might not even know it’s happened until you catch a glimpse of the underside of your underwear. Either that or it’s all over your thighs. Maybe you have extremely watery output and open the end, find there is some air so give it a squeeze, before you know what has happened its missed the bowl altogether.

2. The placing of the bag. This one happens to me on a regular basis, you clean yourself up get everything organised , cut the base plate to a perfect size peel off the seal and carefully place it over the stoma, you stand back to admire your work … and realise the opening is somewhere facing  your other leg. ?

3. The noises, these will only happen in a quiet public place or when you are relaxing quietly watching a good film. People will look but you can tell they are not convinced it was a fart but are not quite sure what it was. You try and muffle the stoma by covering it will anything you have to hand. This seems to work initially but not for long.

4. Back to the loo, when it doesn’t flush properly, usually a public loo who’s water pressure is useless, and the toilet tissue at the front of the bowl trick hasn’t  worked. You usually have to wait and try again. What do people think you are doing in there ? they hear rustling about, and the loo flushing but no one comes out.

5. Naughty pesky stomas on change day. They can all misbehave when you are trying to clean them, particularly if you are airing the pest. Just when you think it is safe to leave it alone, wham.. output all over the place and you can’t get tissues quick enough, and once it starts it’s like mount versuvius, trouble is you can’t put the bag on until it settles because it will be all over that too. You shout at it because it makes you feel better, yes I know you do too

6. You are constantly checking it’s still there. Yep your hand creeps up and you check that you are not ready to burst, do you leave it a while longer and risk it or do you decide the risk is too great? it can be a shock to find the bag full when you can’t really feel it filling up.

7. Absentmindedly squishing the contents. ( for non stoma folk, it is very clean and nothing gets out )This one sounds disgusting but is something you just do quickly now and again.. It starts when you are checking the contents, is it still watery? has it thickened up yet ? is it ready to empty? then you end up just squishing it about for a short while. No reason.

8. Smelling a fart and being able to categorically shout ” It is definitely not me”

9. Who else can watch TV , talk to your friends on the phone ( or in person ), go out for a drink, eat, sleep…..all whilst having a poo. The ultimate multitasker.

Consequences for IBD patients when consultants can’t commit

 

This is a subject close to my heart and a very controversial one. There will be many people who are concerned with this subject but I feel it needs to be said.

I am a member of many IBD and stoma forums and the most overwhelming subject that keeps cropping up is patients being left to the “wait and see” approach. This to me is very dangerous as I also note that many patients’ bloods and observations are not indicative of the disease progression. These patients are being left in an unbearable position, in pain and suffering and for many this carries on for many months. It also means that if surgery is later than it should be, then the consequences of that can be major. There should not be anyone that is having life saving surgery for IBD ( there are some exceptions, like toxic mega colon that cannot be foreseen ). But I do know from experience that surgery could have been sooner with better outcomes.

I was one of those patients. Yes my consultant knew I had severe left sided disease, although it was constantly put down. It started as severe proctitis then gradually worked its way round to the left. I was feeling extremely ill, and my bloods were showing this at times. I was having temperature spikes, but because it wasn’t happening in clinic, I was disbelieved. I ended up with emergency surgery with no chance of reversal because my rectum was too severely diseased, to the point that I had rectal stump blow out, a major rare complication. I was also nutritionally poor before surgery.

These concerns are real and need addressing, the surgeons seem to have the right idea, ” don’t wait” . They are the ones that have to operate on people that could have been much better in health and now have many issues that could bring poorer outcomes. It will be the surgeons that have to work with what they have been given. I am sure the consultant GI’s are trying to do what they think is right for a chronic condition but I implore you to listen to the patient and take a leaf out of the surgeons’ book.  It doesn’t mean you have failed ,it means you haven’t. I know that IBD is a complex and unpredictable disease with many forms, and very difficult to treat, but if treatment is not working anymore then enough is enough.