Support for Miss Piggy

When I saw the stoma nurse last week she confirmed my GP’s opinion that I have developed a hernia, which, appearing next to Kermit (my stoma) has been christened Miss Piggy. She agreed that repair is not really an option, and that the way forward is support, and this afternoon a young lady from CUI, a company specialising in support garments for ostomates, came to the house to fit me with something suitable – she was absolutely delightful and we parted with a hug – she is originally from an African country and is petite and quite beautiful, and rejoices in the name of Moreblessing!! I certainly felt blessed by her presence. She was smartly and elegantly dressed, and with her beautiful smile, she was charming and friendly.

The fabric of which CUI’s garments are made is called Fulcionel, which consists of two stretch layers bonded together, forming a strong but flexible material which stretches in all directions. This provides adequate support for a hernia, while at the same time allowing the stoma bag to function properly without the danger of pancaking.

She began by showing me some of their support belts. They have an innovative system for putting them on which consists of a “glove” on the outside of one end – this is like a mitt into which you insert your hand – to get it the right way round, you insert the hand on the same side as your stoma, which in my case would be the right side. You then grasp the other end behind your back and place it over your hip on the opposite side from the stoma, and with your hand in the glove, you pull outwards to stretch the fabric, and then around in front, and place the end over the loops of Velcro of the other end. This system allows you to adjust the amount of support (you can loosen it after a big meal!) and makes putting the belt on, and removing it, very easy indeed. The glove also means that you are not screwing up the belt as you pull it, and it goes around you in an even and unrestricted way.

However, for me, despite the fact that these belts have a slightly tacky anti-roll band at top and bottom, as soon as I sat down, the belt rolled up from my bottom. When I was trying support garments from another company in the past to help prevent a hernia, I found the same problem, and was given some pants, which unfortunately I didn’t get on with, so I stopped wearing them. At that time I wasn’t given such a thorough fitting, and was just given a medium-sized pair, which really weren’t that comfortable Moreblessing (or Moby for short) said that it is worth investing the time and effort into a thorough consultation in order for them to provide a garment that really works for patients, giving them both support and comfort – there is no point in providing something that doesn’t work for an individual, and which just ends up in the drawer not being worn.

She could see that my shape wasn’t right for the belt, so she got out some samples of pants for me to try.

Trying on a medium-sized pair, she could tell by looking at me, and I could feel myself, that the support was good over my abdomen, and it felt firm and comfortable. However, the band at the waist was somewhat slack, and the legs were definitely too tight, cutting in when I sat down. She pinned a small dart at the waist with safety pins and measured how much reduction she had made, which she noted down. However, even trying on a pair which didn’t fit properly, I could immediately feel the benefit of the support over my abdomen.

She said that what I needed was a medium pair with a slightly smaller waist – the waist of a small pair was too tight – and the legs of a large pair. We looked at the option of an opening at the crotch – this is closed with a strip of velcro and there are two tabs at the sides for ease of opening – this means that you can go to the loo easily without having to pull down the pants each time. They are quite tight and a bit of an effort to get on and off, which proves they are doing their job – and the bottom opening certainly seems a good idea, and would make life a lot easier for me. She said that if they add a wider band of velcro loops, there will be room for some adjustment in the leg size, as well as cutting them slightly larger, and this will give me a bit more room for adjustment.

She told me the company has a team of twelve sewing ladies who make up these garments. Examining all the samples she’d brought along, I could see that they were beautifully made and very well finished, and I complimented her on that. The garments are all machine washable at 40 degrees but must be dried naturally without tumble drying, and since this is what I do with our laundry anyway, caring for the garments will be no problem.

The pants come in three colours: white, beige and black, and you can have them with or without lace. Without the lace, they look much more like a medical appliance, and reminded me of my original pair, which I didn’t like. The lace is a large panel across the front, attached along the band at the waist, and down the side seams, but loose across the bottom, with a slight gather to allow for the stretch across the abdomen. The lace extends across the back, attached along the curving seam at the top of the gusset, which has no support. They are therefore very pretty and feminine despite being high-waisted – they need to come up right over the top of the bag to prevent constriction.

I have chosen a beige pair with lace – they look really pretty and not like medical equipment! To start with they will just make up one pair for me, and if I am happy with them after wearing them for a few days, I can order more. I am allowed three pairs in one year on prescription, and I don’t want to waste the prescription by ordering three all at once and then finding that they are no good. They could take up to four weeks to arrive but it should be quicker than that.

Moby took down the details of Patient Choice, my stoma supplies company, and said that the provision of the garments would be through them, as they already have an electronic prescription system in place with my GP, who has told me she is happy to prescribe hernia support garments.

Following my visit to the stoma nurse when she told me I had “textbook skin” and her request for a photo for a training booklet for the staff, someone on the Camp Crappy forum on Inspire said that Kermit would want to make celebrity appearances from now on, in shows like “Dancing with the Stomas,” and “Stoma’s Got Talent” haha!! She added that if Kermit wanted to autograph the book, then things could get a bit messy…

So after this afternoon’s consultation, Kermit and Miss Piggy, and of course Shoshi, will soon be very happy and comfortable! It was a great appointment with a very charming young lady who told me she loves her job, which showed – she was enthusiastic and thorough, and a pleasure to deal with. I am very impressed with CUI and their thoroughness and efficiency and care, which will result in a bespoke garment which will make life a lot more comfortable for me, and prevent further problems with the hernia which is unfortunately here to stay. I cannot thank them enough.

Stoma Nurse Appointment

This morning I had an appointment at the hospital with the stoma nurse. This time I saw Nita, one of the senior nurses, who had helped us so much in the early days before and after my surgery. She is so kind, helpful, friendly and efficient!

She said it was a good idea to keep an eye on me periodically, although I am doing so well and no longer need regular scheduled appointments. I told her the GP had diagnosed a hernia, and as soon as she looked at me on the examination couch, she confirmed this and said it was clearly visible.

We took Kermit’s bag off, and her first reaction was, “You’ve got textbook skin! Whatever you are doing, keep on doing it!” This was very encouraging!

She asked what I was using, and we got Kermit’s handbag out and spread out the stuff – adhesive removers, barrier wipes, etc. She was interested that I was using Trio flange extenders – she asked how I liked them, and I told her they were the best – so thin and flexible, and almost invisible once in place. She said that in the clinic they hadn’t been terribly impressed with Trio but I had to disagree and said I absolutely loved their stuff. She could see that my whole kit was clearly working well for me.

She asked if I’d be prepared to come in again if she called me, because they were preparing some kind of booklet about stoma care (for training purposes, I think) and they were hoping to have a series of photographs showing how bad/good skin could be, and my skin around Kermit was so good that we’d be used for the example of the best skin! So Kermit is going to be famous. When I told them on Camp Crappy (the stoma forum on Inspire) I had some very amusing replies about this, saying that if Kermit was asked to autograph the book, things might get a bit messy! Someone suggested that he could seek fame in other directions, for example “Maybe future gigs at stoma conventions, or guest appearances on Stomas Got Talent and Dancing With The Stomas?” Ha ha! I just hope all this fame doesn’t go to Kermit’s head.

We spoke a bit about Miss Piggy, and when I told her the hernia was Kermit’s new friend and was called Miss Piggy, she said, “That’s hilarious!” I said that the GP had agreed with me that the problem may have been caused by, or at least exacerbated by, the fact that I have to strain every time I pee, because of the nerve damage to my bladder from the chemo – I told her I was still retaining up to 20 percent which has to be forced out. She agreed with the GP’s assessment that there was less risk to my health in managing Miss Piggy with support, rather than going down the route of self-catheterisation with its high risk of infection. These things are a balancing act, and choosing the path of least risk. She said that Miss Piggy shouldn’t present me with too much of a problem and that adequate support was the way to go.

We moved on to talk about support in more detail. I told her the GP was happy to prescribe whatever support garments I needed, and she agreed – she also agreed with what one of her colleagues had said some time ago, that I could go online and approach the company myself – I said this would save them time and work. I said that I had already contacted CUI and that they would be phoning me with an appointment for someone to call at our home to measure and fit me properly. She said that at present the local rep was off sick, and that someone was having to come down from London, which meant that she needed to collect enough appointments to make the trip worthwhile, and she’d find somewhere to stay for a few days while she got round to everyone, so I may have to wait a bit longer than usual.

She said that they now had an arrangement with this company, CUI, and had regular clinics with their rep there at the hospital. My hubby said wouldn’t it be easier for me to come in to be seen, but Nita said it was fine for them to do it at home. I think this is better – it saves us the hassle of going out, and it also frees up their appointment slots for others, who may need additional support from the staff on hand in the clinic. Nita agreed.

As we left, Nita said it was so nice to see us guys again, and wished us well. I came away feeling very well cared for and affirmed.

Only occasional pain from Miss Piggy, and I am trying to be careful when coughing, lifting, etc.