Exercise safe for a sensitive stoma

Hi and welcome to stoma support part of the your online community.

That's a tough hand you've been dealt with your diagnosis, stoma and career loss.

I am quite perplexed why a UK stoma products supply company would trial you with a pouch knowing that it wasn't available on NHS prescription.

I am struggling to visualise the make up of the pouch and my thoughts are drawing me to ones that have the usual plastic covering which is initially removed to allow you to position the pouch then when the pouch is in position a paper cover is removed from the outer edge to enable the rest of the base plate to be stuck down which probably would give you a bigger area for the base plate to stick to your body. 

Most base plates allow for a maximum hole to be cut of between 55 and 60mm with a few allowing for a hole of 70 or 80 mm with a further area for adhering to the body, the one I use cuts to 90 mm with a good additional amount for sticking to my body and wonder if you shouldn't explore pouches with large base plates which depending on your cut size could give you quite a large excess adhesive area, if all that makes sense or if I try another way if you cut your base plate with a hole size 40mm and use my pouch you would have at least 65mm all round base plate sticking to your skin and as most pouches having a degree of flexibility they should give good all round adhesion.

My advice is too speak to your stoma care nurse and explain the problem and she should be able to advise you on the larger base plates available, I'm sure I came across a pouch from Oakmed with and extremely large base plate.

The other thing that crossed my mind when you are exercising is wearing a Sash Leakage Belt when you open up the green link you will see that the pouch is fed through a ring which rests on the base plate and stops it coming off the body. The belt is available on GP PRESCRIPTION.

I'm not sure if I've been of much help but if you can give me some more information such as stoma size, 1 or 2 piece system I'll have another think about pouches for you (which pouch are you using now).

Even although you are now 2 years post op you still need to listen to your body when exercising, it'll soon let you know if you're doing too much, again speak to stoma care nurse about exercising and get advice from her as she understands a bit more about the working of our bowels after surgery, remember with amount of surgery you've had everything behind your stoma has been shoved and pulled every way under the sun during the surgery and even after this length of time your organs are trying to settle back inside you. 

Please give me a shout out if I can help you in the future.

Ian

CC

Thanks Ian for the reply. I found the pouch I trialled and it was the Coloplast SenSura Mio. It was a smaller base and oval shaped but because it was so flexable and it stuck like the tape you can buy to further secure pouches it was ideal. Not sure why its not a standard popular base unless thats where the cost comes from, as the pouch I mostly use is the standard 416718, I can see exactly how its fit on as its an open window view but the base is thick and inflexible so movements easily causes lines of air pockets and doesn't stick as well so I need tape if I'm going out. Tbh I've tried so many pouches and they all have quite big weaknesses from inflexibility to no window to view placement, thin plastic to poor vents. I'm not really that fussy overall as I'm genuinely okay with the very basic one we get on leaving hospital with a new stoma but for the exercise and long travel thats when the weaknesses really shine through.

My stoma end is actually good. Healthy and always sticks out so in 2+ years I've only experienced a handful of "pancaking" from a shy stoma! Mostly seems to come from dehydration for me which is also rare for me. The stoma is a consistent 35mm so area of adhesion is always good. Just the issue of inflexibility. I've mostly learned the hard way from pain with movements I can and cannot do but thankfully never had a hernia blowout though I assume I've been close as the pulling I've had is pretty extreme to the point I cannot move and have to press firmly down just below my stoma to minimise the pain. Never keen to experience this but it has happened just me getting out of bed before so I guess its not always totally avoidable? I do see a few YouTubers wear Mio type pouches too but assume they can afford the good stuff with their popular sites. I will call the nurses to check for cheaper versions or maybe see about if I can afford a few for special occasions lol!

Thanks for the information, I can't see any reason for the Coloplast SenSura Mio not being supplied on NHS Prescription as all of the range are on the Drugs Tariff, the authorised list issued by NICE (National Institute of Clinical Excellence).

Because the base plate is like a clam shell it has the effect of being able to mould to most body shapes with the flexible adhesive.

Some of the Coloplast SenSura Mio pouches can be quite expensive so I am assuming that your local CCG has issued guidelines about the issue of these pouches, looking at the price per pouch as opposed to the benefits and needs of the patients.

If my assumption is correct, the word guidelines above should be taken in context and it is only a recommendation that pouches are not prescribed but not a mandatory instruction and your GP can override it and prescribe them, you need to enlist the help of your stoma care nurse for backup on this.

The other point I am unsure about is whether it is the one piece Pouching system or a 2 piece Pouching system with click coupling in SenSura Mio range.

My suggestion would be to discuss the product again with one of the helpful product specialists at Coloplast and explain the problem they should confirm that the pouch is on the Drug Tariff and let you have more samples, them speak to your stoma care nurse telling her that you've had a body assessment by Coloplast and tried out SenSura Mio pouches and they meet your requirements and would she authorise that you should be using them by writing to your GP (ask for a copy of the letter).

As I say I see no reason for you not getting the Pouching system that suits you, there are many people on this site who are using them, including myself who was told to use them by my hospitals stoma care nurses and ended up with boxes of them unfortunately the base plate was too small for me and I had to stop using them.

If you can give me more information on the pouches, whether 1 or 2 piece (reference number) I will go into the current drug tariff to confirm that they are still on the authorised list.

What did you think about the leakage belt.

How are getting on with Convatec Mouldable pouch you are using are you managing to the get the hole just right.

Would you mind coming back to me and letting you know the above and how you get on with obtaining your preferred pouches.

Ian

CC

Sorry I use the 1 piece drainables. The belt sounds interesting but is that a 2 piece? I see the clips look attached to the pouch so specialist pouches or are belts able to be attached to any pouch using some sort of inner ring you can fit over the adhesive area?

I did try out the mouldables but didn't get on with them at all. Had leaks every time. My stoma moves too much. Every time it would act like a conveyor belt to push waste into the mould area and force the pouch away so I just use straight cut hole pouches.

Thank you for the step by step to see if I can get them. I will look into it on Monday and yes I'll let you know how it all goes thanks. It would be nice to get some comfort back.

I need to chase up the full belt too as I have still yet to receive one, I hear these are useful to hug the stoma area when moving to prevent pressure too. I've followed up a couple of times but seems to be stuck in the system lol! I've only just started thinking about the special clothing too. But unsure the procedure to get them so will be a productive call tomorrow.

the best pouch for a large base is the oakmed 2040 I cut the hole to 70mm I have a large stoma but I still leak

Hi Ian, as requested I am replying with an update! Its a positive one! So I thank you greatly for your advice and in pursuing getting the pouches I preferred though originally declined. I'm now set up with the Sensura Mio. I have the 1 piece drainable which I prefer. They are so comfortable and flexable at the base. Now my main concern is only to not do something to risk a hernia rather than previously where I had to be careful not to bent the base of the pouch at all! Its a good addition to that peace of mind thats so important in life. So I now feel more ready for when the pandemic subsides.

Thanks again for your advice. Hope you are doing well in this lockdown too.

Michael

Wow that is very giving. How is it for flexibility at the base where the adhesive is? I have found the Sensura Mio perfect for me so far and I actually managed to successfully get them for prescription but I am very open minded to keep my eyes open for all products out there. Seems a lot has arrived in a short time like the star adhesives which I've tried and are like suction pads! Almost impossible to put it on wrong as its design hugs the skin comfortably though I don't remember what they can go upto size wise. I'm very lucky that my stoma is only 30mm but I always had to be careful of accidents with most pouches except the Mio. The only pouch I've never had an issue with so far.