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Roses are red,
Violets are blue,
In your bag you've got lipstick,
In mine I've got poo.

Row of Handbags

Row of Handbags

Friday, 28 August 2015

Stoma Pants and Wraps

Today, at long last, my prescription underwear arrived. I think it says something about my life at the moment that I got really excited – I know, I know, I should get out more…

They are made by SupportX and I got them on prescription, free of charge. I ordered two of each to start with. Your yearly allowance is six pairs of pants and three wraps, but I’ve got enough to be going on with for now, because the pants will not be worn against my skin but over my normal pants, so I can have “one on, one in the wash,” as they say.

I have to tell you, these are NOT the most glamorous underwear you’ve ever seen by a long shot. The pants are enormous! I couldn’t stop laughing, especially when my hubby said they were sweet! lol lol!!

Are you ready for this?

Stoma Pants

The pants are deliberately made really high waisted so that the top doesn’t interfere with the stoma, and everything is adequately covered up.

Turned inside out, there is a separate pouch affair that runs across the front, attached at the sides, and you wear this closest to yourself, and slip the bag into the pouch, so that it is sandwiched between the pouch and the outer layer of the pants, keeping it away from your skin. It supports it and stops that dragging feeling when the bag is filling, and distributes the contents a bit so that bulges are less likely to show on the outside.

Stoma Pants Inside Out

You an see that there are two holes at the bottom. These are for drainable ostomy bags so that you can, in theory, empty the bag without removing the pants. However, I am not doing this because I am afraid of making a mess!

I got the wraps to wear at night. They are similar to the pants, but more stretchy and tight. Again, they support the bag and keep it flat against you. I find that in bed, the bag does tend to flop about a bit and it sometimes wakes me up, and with the wrap, this should no longer happen.

Stoma Wrap

Inside out, the wraps also have an inner layer so that the bag is sandwiched between two layers of fabric and held away from your skin. The hole is there to push the bag through – it doesn’t look very big but the opening is very stretchy, and there’s no problem getting the bag through it.

Stoma Wrap Inside Out

What did I tell you? Not the sort of thing you see in Vogue lol! I think I am getting old… Before I went into hospital I got some new bras and was horrified that they had THREE hooks at the back – I told my hubby they reminded me of the “ladies’ foundation garments” that my mum used to wear in the 1950s and he said that sounded like concrete blocks! He wasn’t far wrong.

I think it’s rather funny that I have multi-coloured hair and wear quite funky clothes, and nobody (except you lot of course) will know what horrors lie beneath!

Hope this has given you a good laugh. It has me. But at least I know that my “medical appliance” (doesn’t THAT sound awful – but it seems to go with the pants lol!) will be held secure and will be more comfortable, and it should help with the prevention of leaks, too.

Oh, the joys of being a Gutless Bag Lady… Whoever would have thought Shoshi would come to THIS…

Monday, 17 August 2015

My Final Scheduled Stoma Clinic Appointment

I had a stoma nurse appointment this a.m. and she expressed herself as extremely pleased at how things are. She was very impressed with how well the operation wound and Kermit have healed up, and how clean and healthy the peristomal skin looked. I have been using Coloplast SenSura soft convex bags for a while now, and have recently started using Trio Silex Flange Extenders which are a total dream – very thin, flexible, almost invisible soft silicone which peels off really easily without leaving any residue, and breathable.

Because I am doing so well, she hasn’t scheduled another appointment unless I want to come back, say after the chemo has finished in the autumn, or if I have any problems.

Since my surgery, I’ve had problems with mucous discharge from my rectal stump – a feeling of needing to “go” and not being able to bear down. Quite a lot of discharge coming when I’m on the loo, with sometimes a definite “plop” as the plug comes out. Sometimes it’s a bit pink with blood. The chemo makes it worse. I have tried a technique called “anal stimulation” which spinal injury patients use to help them evacuate their bowels. You push in a finger a short way and twirl it round and round to open the anus, allowing the content to escape. I use a piece of toilet paper, to do this, and it allows quite a bit of mucus to escape.

My surgeon said a lot of people have this problem post-surgery and that it may eventually clear up.

I have read that mucus is a natural discharge from the large bowel and rectum, which helps lubricate the stool on its way out, being absorbed by the stool in the normal functioning system. Once there is no stool to come out, the mucus is still there and has to come out. I have a short rectal stump and am amazed how much it can produce! While for some people this can stop eventually, it seems more logical, given the above, that it would go on forever because it’s a normal body process to produce it.

I spoke to the oncologist about it last month and she said I might mention it to my stoma nurse, and then she said, “I’ll phone her straight away and see what she suggests.” (They are so marvellous – everything I tell them gets dealt with straight away and they always seem to have an answer up my sleeve to help me through my various difficulties, but the secret is to tell them everything so that they know, and can help.) She came back to say that the nurse recommended something called “Micralax” which is a small plastic capsule with a plastic tube on it which you insert into the rectum and squeeze the liquid in – it is a mini-enema. You keep it in for 5-10 mins or however long it takes to soften the mucus and then this comes away when you go to the loo.


She gave me a prescription straight away, and I tried it that night, but was amazed how painful it was – not the insertion of the tube, but the stuff itself. I couldn’t bear to keep it in even for 5 mins. and after I’d expelled it down the loo (before it had really had a chance to work) my bum was sore for quite a long time afterwards. I’d been told to do this twice a week, and it was just as bad the next time, after which I phoned the stoma nurse.

She said that this stuff does tend to cause a bit of pain, but in my case it sounded more extreme. She said there might be some inflammation in the rectal stump, and to try using it once a week. It was still painful a week later when I used it but not quite so bad. She said if it wasn’t any good, we could try glycerin suppositories which are more gentle, and to leave it until my appointment today, when she gave me some suppositories to try.

The discharge doesn’t seem to be so bad at the moment. I do find that the discharge comes in waves – for a couple of weeks or so it’s a real problem, then it seems to disappear for a bit, only to return. It’s very unpredictable, but the chemo does make it worse. I shall be trying the suppositories when it returns again.

She said that if they work, I can get them on prescription via my GP, so no need to return to the stoma clinic for them.

I also enquired again about support pants and wraps, which I’d asked for some time ago and nothing had been forthcoming, and she showed me some samples from their store cupboard and gave me some leaflets to take home. She suggested I search the Internet and find something I like, and they will arrange a prescription from my GP. I have been resting (and sleeping) this afternoon as I am feeling very wiped out again after my chemo on Friday. I have not yet therefore had time to explore and find what wraps/pants I want yet. Eventually, once I’ve decided, and started with a couple of each from the manufacturer(s), my regular supplier will be able to provide me with them with my normal orders from them for bags etc.

The stoma nurse was impressed with how well I am, despite the chemo, and how well I am coping. We chatted about attitude, and how being positive, upbeat, keeping a sense of humour, and thinking of others, all help one enormously. I have every expectation that I am going to beat the cancer completely and make a good recovery from all the illness and trauma of this year. I said to her that it has changed me, and hopefully made me a better person, and I have learnt so much, and made so many new friends around the world, and unpleasant as much of the procedure has been, given my time again, I would not change a thing. I never, never thought I could ever say such a thing but it is really true. My life has been incredibly enriched through this experience.

While we were waiting for my appointment, and then afterwards when we came out, we met up with 2 lovely ladies (it turned out my hubby knew the daughter from where we used to live) – the elderly mother is a new ileostomate (since May) and is struggling a bit. My hubby and I were able to tell her quite a bit and he’s given them our number so if she wants to come over and have a session in what my hubby calls my “girlie bathroom” (lol!) she is most welcome, and I am sure I can help her. I told her several good suggestions I’d learnt on the Camp Crappy forum on Inspire, which were news to them both, and said I’d be happy to help with any questions she might have. I feel so great, being quite a newbie at this myself (just under 5 months post-surgery) but doing so well and now being able to help others get through the rocky first months of their own journey. I am so grateful to Camp Crappy which has helped me so much and helped me to be informed, and much more able to cope. This poor lady has very poor appetite so we are going to try and help with some nice tempting food ideas too – my hubby has been “feeding” me throughout and we know what’s good for stomas, and what is enjoyable and appetising when one is on chemo and not feeling like eating.

The stoma nurse loved my hair! I told her I’ve started telling people it’s a side effect of the chemo lol! I’m waiting for someone to say, “What are you on? Can I have some?” Hahaha!!

Coloured Hair 1 23-5-15

Wednesday, 5 August 2015

My First Prescription Parcel

Last time I attended the stoma clinic, the nurse set up my supply line to get the stuff I need for Kermit (my stoma) – bags and accessories. All these things are available on prescription on our wonderful NHS. The nurse ordered the things I would need for the immediate future and the parcel arrived in due course.

After this, it was up to me to place an order when I needed anything, and last week I did just that. After the stoma open day we attended in June, where we picked up loads of samples from different companies, I had the opportunity to try lots of different products, and decide which ones suited me best, so I knew what to order.

When the stoma nurse put in the first order, she sent a template for them to cut the bags to size, but when I used the bag that she cut for me that day, the hole was too large and almost immediately I was getting itching and skin irritation, so I removed the bag and cut a new one myself, and phoned her to let her know. I contacted the company and asked them to send the first batch of bags uncut, and I would cut them myself, which is what I have been doing.

I spoke to the gentleman at the company and said I would post him a template in due course, and that I would like my bags cut to this size thereafter.

The parcel arrived today, and all the bags are perfectly cut! Not only are they to my exact template, but they seem to have cut them with some sort of hot tool or laser or something because the cut line is extremely smooth and regular – far more so than I was able to do with scissors. I shall phone them in due course to tell them how pleased I am.

They have sent me 3 boxes of my regular Coloplast SenSura soft convex bags, and enough accessories to last the same time as the bags will last: adhesive remover wipes and barrier wipes by Independence; deodorising spray: NaturCare pouch deodoriser/air freshener spray in zest vibrant citrus by Opus Healthcare – I decided on second thoughts that this was preferable to my original first choice of the OstoMart mint drops, as the smell is gorgeous, and it doubles as an air freshener spray as well; and Silex silicone flange extenders by Trio Ostomy Care. I did not order any adhesive remover spray as I have plenty in the form of samples from the open day, and what the hospital supplied.

All the companies supply complimentary disposal bags and dry wipes, but I asked them not to send me any this time as I still have plenty supplied to me by the hospital.

The supplier I am dealing with is Patient Choice. They are a non-profit company which also supports ostomy charities. They have a service for collecting unwanted supplies and redistributing them free of charge to those in need. When I phoned through with my order, I asked about this, and they said they would send me a pre-paid bag to put things in and post back to them. I have got quite a few redundant bags from the days when I used flat-backed ones, and quite a lot of samples which I don’t want, and various banana flanges which the hospital supplied, which didn’t suit me. I also had a lot of stoma rings which I’ve never been able to get on with. All this stuff was taking up quite a lot of space in my storage tower and I am glad to be shot of them! I have packed them all up and they will go off tomorrow. It’s very nice to know that the stuff I do not want, but which is perfectly OK, does not have to be thrown away and wasted, but can be of use to others. I think this is an excellent idea.

So far I am very pleased with the company. They have been consistently friendly and helpful on the phone. They have been revamping their website, but this evening I was able to register online, and once I hear back from them I shall set up an online account and order my supplies from the website rather than by phone.

How the system works is that after a supplier receives the order, they contact the GP who issues a prescription, and then they fill it and post to you what you ordered. Easy peasy. The only thing to remember is to order in good time, just in case there is a problem with the post or something – one doesn’t want to run out of things, so it’s a good idea to order while you’ve still got plenty in reserve, especially if you are going on holiday, or around Christmas when the post can become unreliable.

Like many of the other supply companies, Patient Choice are not tied to any particular manufacturer. Whatever products are on the prescription tariff, they can supply. Everybody’s needs are different, and one’s list of supplies consists of products recommended by your stoma nurse as being appropriate for you, and your own personal choice.

An example of team work: between the patient, their stoma nurse, their supply company, and their GP. It’s a tried and tested system with the least amount of hassle involved for the patient, who after all has enough to deal with, managing a stoma, without having to stress about getting the stuff they need!