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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

Sunday, 14 May 2017

CT Scan–Has Miss Piggy Returned?

Following on from my appointment with the surgeon 2 1/2 weeks ago, I had my CT scan today, at Mount Stuart Hospital in Torquay, to find out whether Miss Piggy, my hernia, has returned. This is a private hospital, but it takes NHS overflow for various procedures. Today the mobile CT scanning unit was in the car park and this is where we went.

The whole thing took a lot shorter time than the scans I’ve had at Torbay Hospital, where you are sitting around for ages, drinking and waiting your turn, and afterwards they like to keep you hanging around for a while longer before removing your cannula in case you exhibit any adverse symptoms from the X-ray dye. Today, though, we sat in the waiting room near the entrance to the hospital and were soon called, and they did the procedure straight away, inserting the cannula into my arm for the dye, and removing it immediately after the scan.

Mr. Pullan, my surgeon, had instructed me to perform the Valsalva manoeuvre in the scanner. Normally, you have to take in a breath and hold it while the scan takes place, but in order to make any hernia more obvious, I was instructed to exhale against my closed glottis in order to produce a strain on my abdomen.

I should have the result of the scan fairly soon – I was told that the report would be made pretty quickly, but there may be a delay in hearing from Mr. Pullan – I don’t know if they will phone, or whether they will call me in for another appointment.

I have been spending the past 2 1/2 weeks hoping the hernia has come back, so that they will go ahead and do the permanent repair in a controlled fashion, so that I am properly prepared and as fit as possible before the operation. The alternative is to wait for the sutured repair, done three months ago, to fail, and this could happen at any time, out of our control, and I am anxious to avoid the possibility of another obstruction, which would put me back in hospital requiring another emergency operation, again most likely performed by a general surgeon who is not qualified to insert the mesh around the stoma. He would again make a sutured repair, and we’d be back to square one again. There is a limited number of times the procedure can be done, and eventually the area would be so weakened that they’d have to relocate the stoma to the other side of my abdomen, which I am very anxious to avoid at all costs.

It’s a weird position to be in, hoping against hope for a hernia! Ah well, my life these days seems to consist of a series of weirdnesses, one way or another! We shall just have to wait and see what the scan reveals.

Thursday, 27 April 2017

Appointment with my Surgeon

I saw my original surgeon today. I had been told by the surgeon who did my emergency surgery three months ago, to repair the parastomal hernia that was causing an obstruction, that he was only able to do a temporary repair, and that I would require a further operation to insert some mesh to provide more permanent protection against the hernia recurring.

At today’s appointment, I told him that I had recently been experiencing some pain in the area of Kermit, my stoma, and suspected that the hernia might already have returned. He examined me and the results were inconclusive; he said it did feel rather “loose” but he couldn’t confirm it one way or another. He is booking me in for a CT scan which will show more clearly what is going on.

He said that the surgeon who operated on me didn’t normally do these hernia repairs, and that it would be most unusual to do a pre-emptive repair when there was no actual hernia, because of the risks that all operations incur. I asked whether they just left them to recur before dealing with them, and he said that was the case. I said I certainly didn’t want to have a repeat of my recent experience, having emergency surgery because of a blockage, but he said that wouldn’t necessarily be the case, and that if it did recur, they could repair it.

So we are a bit in limbo now. I had psyched myself up for a definite operation and now this isn’t going to happen, but I am left with a temporary repair that is inevitably going to fail (statistically a sutured repair of a parastomal hernia has a 100 percent failure rate) and we don’t know when that will happen, which is very unsatisfactory. Perhaps we will know more when I have had the scan. I told him I didn’t like the idea of living in this risky situation and really didn’t want to go through another blockage and feeling so ill again.

I whether, if it did have to be done, it would be done by keyhole surgery, and he said no; having already had two major operations in that area (three, actually, if you consider my hysterectomy over 20 years ago) there would be adhesions and it would not be safe to do keyhole surgery. Also, he said that the mesh would need to go in the muscle to do any good, and open surgery would be required for this. He said an alternative would be to re-site the stoma on the other side of my abdomen and I said I really wouldn’t want this; I want minimal interference with Kermit, and anyway, it would be putting me at even more risk of herniation – at the new site, and also at the old site, which would still be weakened. I didn’t want to have a stoma on the left side as I was used to it on the right.

I told him I was having problems getting support garments organised and that I felt really vulnerable. He said we’d get the scan done, and take it from there.

So that was that. No operation on the immediate horizon unless I’ve actually got a hernia, and so far, no support garments either.

After seeing him, I asked to see one of the stoma nurses, so that I could fill her in with the saga of the non-appearance of support garments that actually fit me. She was horrified that I had been waiting nearly 6 months for this to be sorted, and said she would be contacting the company, and phoning the lady who has been doing my home visits to discuss the matter. She was concerned that I had not been able to wear even the one pair of pants that were right, because they kept being sent back to the company to copy (and they keep getting them wrong so they don’t fit). I said that even when I did have them, and was waiting for yet another visit to collect them to copy again, I couldn’t wear them because they had to be clean to be sent off, and anyway, with only one pair, I had no spare to be “in the wash.” I told her I was seeing the lady this afternoon and will keep her informed of developments.

She came mid-afternoon and compared the original pair with the latest set of three which still don’t fit, and took them all away. I asked for this to be dealt with as a matter of urgency, and that a different seamstress be employed to do the work. I said the stoma nurse would be contacting her, and that she had said that they should be writing a letter to the company about this, because if this has happened to me, it is quite likely to be happening to others also. It is not like a normal purchase where a dissatisfied customer can go elsewhere, because it’s a small specialised market, and it would be hard to find another company that does a bespoke service and home visits. She said that the paying customer was the NHS and that shouldn’t make any difference to how individual patients were treated by the company. The stoma clinic has an arrangement with the company and so have regular contact with them, and will take up my cause. This is a relief, because I have felt trapped, frustrated and powerless to sort out the situation, and angered by the cavalier attitude of the seamstress who is responsible and who is not taking responsibility for her mistakes and trying to make out that it’s my fault, and I haven’t known who to contact about it. Someone needs to take responsibility for this because it is putting people’s health at risk. My hubby is convinced that the obstruction in my hernia that landed me in hospital could have been avoided if I had had the garments when I should have done, nearly six months ago, and he’s pretty upset about it. He suggested I inform the stoma nurse about it today, since we were in that department anyway seeing my surgeon, and it seemed a good idea, and I was glad to have the opportunity.

All I want is a satisfactory resolution of these various problems and to have some peace of mind that I am not going to have any further blockages caused by hernias. The last one was a major upheaval in my life and made me very poorly indeed, and took a long time to recover from.

Roll on the scan, and we’ll see what happens after that, and hopefully the correct support garments will be made for me in the very near future, so at least I’ll have some protection.

Monday, 27 March 2017

Kermit’s Second Birthday!

Today it is exactly two years since I had my bowel cancer surgery when my colon was removed and my permanent ileostomy (Kermit) was created. Really I don’t know where the time has gone. Two years!

Unfortunately, in view of my more recent surgery, I have not had the energy or time to hold a birthday party for him. I would like to have invited my two friends whom I met when we were all in hospital together two years ago, and I would like to have made Kermit a birthday cake like I did last year, but it wasn’t to be!

Here’s a picture of the cake I made last year to celebrate Kermit’s first birthday. Hope he enjoys the virtual version this year – I’ll try and do better next year!

10 Kermit's Birthday Cake

What a journey this two years has been. 2015 was a year out of my life really, dealing with the cancer diagnosis and the emotional upheaval as I prepared for surgery (the operation was postponed twice and I was under severe emotional stress for family reasons – thank goodness for my wonderful hubby who saw me through it all!) and then came the physical recovery and adjusting to my new way of life with a stoma. Once I was sufficiently recovered from the operation, I had to undergo 6 months of intensive chemo which really took it out of me, and by the time that was finished, I had the autumn to begin recovering, with my cancer all-clear being given at the end of November. What a rollercoaster! You can read the whole journey on My Cancer Diary on my other blog.

2016 was a good year all round, with my taking up several activities which I had given up several years ago because of ill health, thinking they were part of my past. These include singing and playing the guitar, restarting a Bible study group, and baking! These have all brought me a lot of pleasure, especially the baking! I have been able to keep my art going throughout all this, with periods when my creative mojo disappeared, but it’s always there for me when I am feeling well.

This year I was looking forward to settling back into a normal life – if a different sort of normal from before! However, I had to face emergency surgery at the beginning of February for an intestinal obstruction caused by my parastomal hernia. This has now been temporarily repaired and I face further surgery to create a more permanent solution.

I am very, very happy to have Kermit. Before he came, I was struggling with ulcerative colitis which, although horrible, was probably never going to be bad enough to necessitate a stoma, so I’d have had to put up with it for the rest of my life, with medication. However, when the cancer happened, it turned out to be a blessing in disguise as the whole inflamed colon was removed and for the first time for years, I found myself in control, and once I’d learnt to manage Kermit and his bag, realised that even if it were possible, I’d never go back to how I was before! Kermit has changed my life, no doubt about it.

Anyone facing what I went through, I would say, be encouraged – it’s not nearly as bad as you think. Yes, you have to get through it all – the surgery, the treatment, adjusting to a new way of doing things, but once you are through that process, life is good!