More About Convex Bags and Support Garments

This morning I saw the support garments lady at the hospital. I took in with me the wrap and pants I’d got from SupportX online some time ago, and she shook her head at them and said that neither was giving any real support at all, which I was pretty much aware of. I told her that the wrap kept rolling up at the back and was not wide enough top to bottom.

She suggested a proper belt with a Velcro fixing, and got several out for me to try, but again the back rolled up, and she said they were not really suitable for me, and that I’d be better with support briefs. These garments are all specifically designed for people with stomas.

We tried a pair of these and they were much better. They are made of very nice firm smooth stretch fabric and she said they would offer sufficient support to help prevent a hernia developing. Hernias are very difficult to treat and the operation is not always successful, and prevention is very much better than cure, and even though the support garments are expensive, they are a lot less of a drain on the NHS budget than a hernia operation.

She has ordered one pair for me to start with, and after a week or two, if they prove satisfactory, I can phone the number she has given me and they will order 2 more pairs. I am allowed 3 during one year, and she doesn’t want to waste my prescriptions by giving me 3 all at once, in case they aren’t right for me, but I think they will be fine.

On the subject of convex bags, after I spoke to the Coloplast rep at the open day back in June, I was told that I would be contacted once the new Sensura Mio convex bags were launched, and I would be sent some samples to try. I was told this would happen in the autumn. Not having heard anything, I phoned in October and was told they would be launched in November. I then heard that earlier this month someone on the stoma forum on Inspire had already got her samples, so I phoned again, and was told they would phone me, which they didn’t.

I phoned again last Friday and was told that someone would definitely phone me on Monday (yesterday) – they need to speak to you so they can fill in a form, getting information from you about the size of your stoma etc. so that they can send the correct samples out.

At 4 p.m. yesterday they still hadn’t phoned, so I rang them again and I was told that no way would I have been phoned yesterday because each request took 24-48 hours to process! She wanted to know who I’d spoken to, and of course I couldn’t remember his name… She could find no evidence that I had phoned at all! Honestly, I do get fed up with these firms that pass you from pillar to post and nobody will take any responsibility, and all they can say is, “They shouldn’t have told you that…” as if it is my fault!! I said I’d been waiting a long time, and had contacted them repeatedly, and I was anxious to get my samples asap as I wanted to be able to order them with my next order from my supplier if they were suitable, and I’d been deliberately running down my supplies. I told her yet again which days I’d be in and when I wouldn’t be available this week (I have 3 hospital appointments 3 days running) and she said she’d try and push for a phone call this morning (Tuesday) before we left for the hospital for my support garments appointment. Of course, there was no phone call.

She told me I might not hear before Friday! I told her that was a whole week on from when I’d first phoned them asking for samples. I really do think this is pretty shabby and I told her so.

I wouldn’t be a bit surprised if they phoned tomorrow when we are out. I wouldn’t put it past them…

I know they are inundated with requests for samples of these new bags, but I have been on the list to receive them since June, so surely I can hardly be considered to be at the end of the queue. I am wondering if I’m ever going to get them!!

Tomorrow I am going in to the day surgery unit so that my surgeon can examine my rectal stump under general anaesthetic. When I saw his registrar at the end of October he couldn’t see much because it was full of muck and pus, and it was rather uncomfortable having the proctoscope in for any length of time, so he said he would discuss it with Mr. Pullan who would probably want me in for a fuller investigation. I have to be there for 8 a.m. having had no breakfast. I should be home by lunch time, depending on how things go, and how soon I am over the anaesthetic and able to leave.

On Thursday I have my CT scan, and on 27th, bloods to be taken at the Ricky Grant (chemo) unit. On 30th November I am seeing the oncologist after she’s received the results of the scan and bloods, and I am hoping for the cancer all-clear! I counted up all my appointments this year since my diagnosis in mid-January, and up to and including the oncology appointment at the end of this month, the total is 49!!

Stoma Clinic Appoinment–Bag Advice and Support Garments

Recently I noticed that where the convex flange of my Coloplast bags sticks to my abdomen, it has been making the skin a bit red, and now that the moat has disappeared from around Kermit, I wondered whether perhaps I still needed to use convex bags, or whether I could return to the flat ones, so I contacted the stoma clinic and they arranged for me to come in and see someone after I had seen the surgeon at the hospital this morning about my rectal mucous discharge (see my Cancer Diary entry today for details of that appointment), as it was in the same department.

I saw Nita this morning, and she had a look, and said that my skin continued to look very clean and healthy, and that all was well. She said that Kermit does not protrude very much – we laughed when we reminisced how freaked out I’d been before my surgery, by the stoma clinic’s DVD with the young lady with the red willy on her tummy and how I’d asked Mr. Pullan NOT to give me one of those!! – but sometimes a bit of protrusion is no bad thing! She said that I should continue with the convex bags for now, but there may come a time when I could return to the flat ones. I do not mind either way, as I am happy with the Coloplast soft convex bags, and am awaiting the arrival of the new Mio convex bags – I just wanted to be sure they were still happy with how things were, so I was reassured. The main thing is to avoid the possibility of leaks, and if the stoma doesn’t have a very long spout, the convex bag does make it protrude more, so that the output is sure to go into the bag, and not seep out under the flange and start irritating the skin.

She said I had done the right thing, coming in to ask. If the skin redness gets worse, then it might be time to look again, but probably there wouldn’t be likely to be any change during the next two or three months.

When she removed the bag, she remarked on the banana flanges I was using and asked if they were the Trio ones, which I confirmed was the case, and how much I liked them. They are their Silex Flange Extenders.

I was also able to report that I was getting on very well with Patient Choice, my supplier, and how businesslike they were, emailing me as to when to expect my parcel to be delivered, etc. She was pleased to hear that, because she said that not all companies were that businesslike.

We also spoke about support underwear. I mentioned to Nita that I had been experiencing a bit of pain around the stoma and in my abdomen lower down, but that the surgeon had reassured me that there was no evidence of a hernia. People with stomas are much more at risk of developing hernias because their abdominal wall muscles have been compromised by the cutting of an opening, and support garments are a good idea to prevent hernias developing. The surgeon said the pain I had been experiencing could just be the development of some scar tissue – there may be some adhesions, especially as I have also had a hysterectomy (20 years ago) and there’s been a lot going on in that area, but it was nothing to worry about. Nita could see that the rather large SupportX pants I had on were doing very little in the way of support; even if they were smaller, the fabric was not particularly firm or stretchy.

A few weeks after I received the two pairs I’d ordered from SupportX, they sent me another two, which have remained in the drawer still in their original wrapping, so I took them in today and gave them to Nita to put in her cupboard in case anyone else wanted to try them.

She said we could do better than this, and suggested I came in to see the lady who does the girdle fitting, so I have an appointment on Tuesday 17th November in the afternoon.

Nita said that they were getting very good reports of the support underwear now available in regular clothing shops such as Marks and Spencer’s, Matalan and PriMark, and they were not expensive. She said in the meantime I could try those, so after my appointments at the hospital we went off and I got a couple of pairs of pants (they only had two in my size, but they will keep me going for now).

You can see that there is a lace panel on the front. The fabric the pants are made of feels very firm and stretchy, and I think they will offer a lot more support than the SupportX ones.

I told her that the SupportX wraps I’d been wearing at night were a perfect pain because they are not deep enough and keep rolling up at the back.

In SupportX’s picture it looks nice and deep but on me it seems about 2/3 the depth!

She said the girdle fitting lady should be able to provide me with something better, and in the meantime I told her I’d ordered some cheap pregnancy body bands from Ebay which I thought I would try.

These look a lot more generous! They were very cheap, so I hope they will be stretchy and supportive enough. They are supposed to support one’s back as well as one’s abdominal muscles, but we shall see.

Another advantage of these garments (and my main motivation for waning them originally) is that they hold the stoma bag in place so that it doesn’t flop about – this was something that used to bother me quite a lot at night. During the day, they help maintain a smoother profile so that the bag doesn’t show so much through one’s clothes.

Obviously I have had to pay for the belly bands and the Matalan pants myself (the were not too expensive either - £6 per pair), and I bought two pairs, intending to wear them over my regular underwear as I have done with the SupportX pants), but anything recommended by the girdle-fitting lady or the stoma nurse, manufactured specifically for stoma care, should be available on prescription. The products designed specifically for stoma care use often have a separate pocket to contain the stoma bag, keeping it out of direct contact with the skin, which obviously normal support garments available in regular shops do not.

This whole thing continues to be a learning curve! An interesting one, though. I have found the whole process both fascinating and educational!

Part of the problem is having to shop online for certain products, and not being able to handle them to see how stretchy and firm they are, and not being able to try them on. The advice of the stoma nurses is extremely helpful, though, and I am sure the appointment with the girdle lady will be informative and useful.

I offered my services as a volunteer to help anyone wanting to speak to someone who has a stoma, and she was happy to put me on their list. We had a chat about what it is like for people in the early days – I reminisced about my tears on the phone and in the clinic, when I felt totally unable to cope, and wanting to phone the hospital lab and ask for my colon back (minus the cancer!) so that it could be sewn back in and I could resume my life as a butt crapper!

There are times when one thinks one will never get to grips with the bag, as one’s body changes shape and the stoma shrinks, and you get leaks and skin irritation. All being well, and in the absence of other complications such as prolapses or hernias, suddenly things slot into place and one starts managing like a pro, and it just becomes part of one’s daily routine. I said how very comforting and reassuring it had been during those difficult times, to phone up (usually in a bit of a state!) to be told to come in and they’d fit me in, and they always managed to sort me out, calmly and efficiently, putting my fears to rest. She said that this was the bulk of their work, helping people out in the early days and teaching them how to manage, so it’s all in a day’s work to them! They are the unsung heroes of the colo-rectal world!

I hope anyone reading this, who is struggling through the early days, will be encouraged and reassured. It really is not that bad once you get used to it, and always remember that the stoma nurse is your best friend!

Do I Need to Change to a Different Bag?

On Friday I phoned the stoma clinic to see if they could fit me in on Thursday morning when I am due to see Mr. Pullan about my rectal discharge. They promised to phone me back but were very overstretched and understaffed, and I didn't hear anything until today. They say they can fit me in, and all I need to do is tell reception when I arrive, and they will be available once I come out from seeing Mr. Pullan. None of it should take too long.

The reason I want to see the stoma nurse is that recently I have noticed that my body has changed shape again and the moat around Kermit seems to have disappeared. Where the convex flange of the bag sticks onto my abdomen it is now leaving a reddish mark - not sore or anything, but it may be indicative that the bag is now putting undue pressure on my skin, and it may be that I no longer require a convex flange. I need to see the stoma nurse so she can have a look at it, and she will know whether I can return to flat-backed bags. It is now 7 months since my operation and I thought my body had stopped changing shape, but apparently not!

I have also noticed with the last two bag changes that there had been a bit of seepage of output underneath the flange. I am surprised there was no skin irritation, but it has been fairly thick output recently, and that may be something to do with it. I shall tell the nurse about this and see what she has to say.

When I spoke to the nurse on the phone today, I mentioned that I would like to go on their register of volunteers who are willing to meet with newbies and encourage them through their initial stages, pre- or post-operatively. I am managing so well now, and although I'm only seven months into my stoma journey, I know that I can encourage others on this path, and reassure them that it will get easier, and help them to come to terms with having a stoma. It is a huge change, and can be very frightening and daunting, but once one gets through the initial teething problems, there is no reason why one cannot live as full and normal a life as one did before.

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!!