Shoshiplatypus

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Today I had my long-awaited appointment with Mr. Daniels in Exeter. I first saw him in April last year, and had had to wait a full four months for my CT scan in August, and since then, had not heard a whisper about a follow-up appointment. I told Mr. Daniels that by the New Year, I was getting so concerned that I had not heard anything that I phoned his secretary, only to be informed that I had slipped through the system.

He examined me once again, and informed me that the scan had revealed that I had more of a prolapse than a true hernia. I’ll include the diagram I drew last year when he explained the difference to us – I needed to have the CT scan to find out exactly what was going on.

I told him that in the past few months things had deteriorated somewhat, and I was starting to get leaks and having to change the ileostomy bag more frequently, and also that every time I changed the bag, I had to treat the broken skin around the stoma. This was not something I was having to do before; the stoma nurse had said to me at one time that my skin was perfect, and whatever I was doing, to continue doing it! I also mentioned that the stoma seemed to be larger than before, and he said this was because more bowel was protruding as a result of the prolapse. I told him that I was getting intermittent pain, especially when I first got up in the mornings before I had the chance to put on the support pants.

He said that left alone, things would only deteriorate further, and the bulge on my abdomen would continue to grow. It was a question of quality of life; he explained that with cancer and similar problems, treatment was more about saving and extending life, but with these hernias, it was more about improving quality of life, and weighing up the benefits of surgery and its risks. I said that things were definitely getting worse, and I did not want them to get as bad as they had been back in 2017 after the first hernia repair had failed; I was getting so many leaks that I was having to change the bag several times a day instead of twice a week, and the area was extremely unstable. I said that I could not live my life like this. He wanted me to be aware of the balance between risk and benefit, so that I could make my own informed choice as to whether to proceed or not. He readily acquiesced with my decision to go ahead with surgery.

When he examined me he could see how much floppy excess flesh I have on my abdomen, mostly because of the weight I have lost over the past few years. In addition, my muscle tone is poor because of my ME. He said this state of affairs was good, because it gave him more to work with. He explained that he would do an abdominoplasty (tummy tuck) and showed me which bits he would move around. He would keep the stoma in the same place, and I would be opened up along my old hysterectomy scar horizontally along the bottom, and at the sides of my abdomen. There is some scarring at the right hand side where the large drain had been put in in the spring of 2018 when I had my severe post-operative infection, and of course the large central vertical scar from my initial colectomy surgery. He said that the operation would involve me losing my tummy button, so I said he would be turning me into an alien! He said he had lots of aliens on his patient list! Having this done would strengthen and stabilise the whole area, and I would end up with a nice neat little stoma again, which should give me no further trouble.

I asked him what sort of time-frame we were talking about, and he said the waiting list was NINE MONTHS!! I said that in view of how long I had already been waiting, due to the fault of the hospital, this was not acceptable and asked whether it would be possible for him to expedite matters. Since things had deteriorated quite a bit since I’d last seen him, I could envisage a lot more deterioration by the autumn. Also, if I do not come up on the list for surgery until October, this would mean I would have been waiting for almost two years since my initial referral – Mr. Pullan’s referral letter was written a year ago to the day, 29th January 2019.

He said he didn’t have any control over the waiting lists, but my best option was to visit the PALS (Patient Advice and Liaison Services) office by the hospital’s main entrance, and register a complaint, and ask that in view of the way I had slipped through the system, that my operation should be expedited. I readily agreed to this, but when we found the PALS office, it was closed. Not great. I picked up a leaflet which had contact details on it, and when we got home I emailed them straight away, giving full details of what had happened.

I told Mr. Daniels of the problems I had had with the woman doing the scan, and I also included this in my complaint to PALS. He had requested the scan with me lying on my stomach, and when I told her this, she initially refused and told me to lie on my back. I had to insist, and said that if I lay on my back, I would only have to come back and have it done again, and I’d already waiting 4 months to have this one done. She left the room without a word and I could see her on the telephone. She returned, and without a word of explanation or apology, told me to lie on my stomach, and the scan was done. I told Mr. Daniels I wasn’t very impressed with this and that she had been quite brusque with me, and that clearly there had been some sort of breakdown in communication.

He had with him a specialist bladder and bowel nurse, and later in the consultation I was able to discuss my bladder problems with them. The nurse said that the bladder and bowel nursing service was county-wide, and that with a GP referral, I could get an individual appointment and a bladder scan, and that this could happen at Torbay Hospital so I wouldn’t have to go to Exeter for it. I explained about the group session I’d had with some other ladies, led by a physiotherapist. The physio had explained that this system was great because with the right information and training, many people are able to retrain their irritable bladders or weak pelvic floor muscles, and need no further help; this meant that those who did need to take it further were able to be seen more quickly. I told Mr. Daniels that I had sustained some nerve damage to my bladder as a result of my chemotherapy, and he said that the surgery itself would have contributed to this, and this was combined with problems that many “maturing ladies” experienced (very politely put)! The nurse suggested I went back to the GP, but when I explained what the physio had said, she said that would be fine and it could be set up through that channel. I have not noticed any great improvement in my bladder since the group session, and believe that my pelvic floor muscles are pretty good; it is more of a lack of sensation and not being aware that I need to pee until my bladder is really full, and experiencing urgency and mild incontinence at times. Not sure what, if anything, can be done about this, but a further appointment might produce something to help.

So all in all, it was quite a helpful appointment, if unnecessarily delayed by a few months! I just hope that now we’ve got the ball rolling and I’ve put in a complaint to the proper authorities, something might be done to speed things up for me and shave a few months off the waiting time.