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.