Warning – this post contains graphic medical details and surgical procedures. Those of a squeamish nature are advised to look away now or read with caution!
On Wednesday 28th March I was admitted to hospital to have my parastomal hernia repaired. Finally coming home on Thursday 5th April, it is only today that I feel up to updating my blog. The after-effects of general anaesthetic and morphine always causes problems with my eyes – nothing will focus, and I keep wanting to rub my eyes to clear them, and check my glasses to see if they need cleaning, and even checking to see if I’ve actually got them on! Also, my concentration tends to be poor and my energy levels are extremely low.
A bit of background – in March 2015 I had major surgery to remove my whole colon because of bowel cancer. My whole cancer journey can be seen here. By 2016 everything was hunky-dory and I was managing Kermit, my stoma, like a pro, and I thought that was “it,” and that my life would now move forward unchanged, and I was very grateful for the improvement that Kermit had made, with the total eradication of my ulcerative colitis. He was a very well-behaved little stoma who gave me very little trouble.
However, that autumn I developed a parastomal hernia. This is a very, very common problem for ostomates (people with stomas) because by the very nature of the operation to create a stoma, a weakness is introduced into the abdominal wall. If you are older, overweight, smoke, you are more likely to develop a hernia, and some estimates are as high as 60%, depending on how they calculate the statistics – one also has to consider the general health and fitness of the patient, and how long they have had their stoma, because with time, the risk increases. OK, I was overweight at the time, and over 60, but didn’t smoke, and really did hope that I’d make it a bit longer than 18 months before developing one!
They tend not to interfere with these hernias unless they are causing problems. I was prescribed some support garments, and went my way.
At the end of January 2017 I suddenly developed an obstruction, and had to go straight to A&E as this is a life-threatening condition. After a lot of waiting around and being poked and prodded to try and shift things along, all the while becoming more and more poorly, throwing up and getting very weak, the CT scanner was finally available and they discovered that my small hernia had caused the obstruction and I needed emergency surgery to correct it. Emergency… from Sunday morning I had to wait until Wednesday morning!
I was in hospital for 2 1/2 weeks and the whole experience was most unpleasant – emergency surgery is a lot worse in terms of outcome than elective, especially if you are poorly to begin with. To cut a long story short, I had a general surgeon to perform the operation because my own specialist colorectal surgeon was not available, and this surgeon was not qualified to do more than suture the hernia closed. Statistics show this method of repair to have a 100% failure rate, so it was then a waiting game to see when, not if, it failed.
Last year I created a little book entitled “Second “Wind” which depicts my journey in terms of the passage of a hurricane – the “first wind,” causing great destruction, being my whole cancer year in 2015, followed by the eye of the storm, when everything quietens down and you think the storm is over (2016), only for the “second wind” to arrive, which causes even more destruction than the first. You can see the book here, and the video flip-through here.
Throughout last year things were much less stable than during 2016. My colorectal surgeon saw me several times during the year and I had CT scans which revealed that by May, some fat was beginning to come through, and by September the hernia was back in full force. He was able to reassure me that large hernias are less likely to cause obstructions than small ones, which gave me peace of mind as far as my worries about a repeat performance were concerned. I told him that the whole area was quite unstable and causing the stoma to retract regularly, which caused output to seep under the flange of the bag rather than passing into the bag. This is a problem because with an ileostomy, the output is not a fully-formed stool and still contains digestive enzymes, which one’s normal skin is not designed to withstand, and after short contact, the skin becomes excoriated and extremely irritated and painful. When things are working normally, one only has to change an ileostomy bag every few days because the more liquid output is drainable from the bottom of the specially-designed bags, but by this time I was having to change the bag daily, and sometimes more often when there were leaks, in order to keep on top of the skin problem. After 3 years of experience I know how to deal with the problem so it wasn’t fazing me, but it was becoming a major pain having to do this on a daily basis. My surgeon said the problem definitely needed to be fixed. I saw him again in January and he put me on his urgent list for surgery.
I didn’t get a date for some time, and the end of March from January isn’t brilliant if this was supposed to be urgent but we all know the pressures the NHS is operating under at present. Then the snow came, and I thought I was absolutely guaranteed to be postponed, but determined not to allow myself to get upset about this, having experienced melt-downs in the past over postponements.
However, thanks to everyone’s very kind prayers, everything went ahead as planned, and down I went.
We turned up at the hospital at 7.30 a.m. as arranged, and it was not long before I was ready to be taken down to theatre. I felt a bit weepy and vulnerable before going in (I haven’t felt like that before and the only thing I can think of is that I’d been warned to expect some considerable discomfort afterwards but perhaps one can’t rationalise such things).
My surgeon approached the operation through Kermit, rather than opening me up right down my midline yet again (been done twice). He made a small incision horizontally either side of Kermit to give him more room to manoeuvre, as he told me he was intending to insert a much larger piece of mesh than usual because of my muscle weakness due to my ME. He opted for Permacol biological mesh, derived from pigskin, which gives better results than synthetic, with a lower risk of infection, and it being similar genetically to human tissue. It eventually becomes incorporated into your own muscle layers, strengthening them. It is ironic, and poetic justice I think, that having named my stoma Kermit, I had named the hernia Miss Piggy, and she has been banished (hopefully forever) beneath the surface with pigskin! When I told my surgeon this, saying how Kermit hated Miss Piggy and kept retreating from her, and how there had been this ongoing battle for supremacy of my belly, and that from now on, Kermit and I could resume our hitherto happy relationship together, he was very amused and laughed aloud! He roared with laughter when I first told him my stoma was called Kermit, and wanted to be reassured that he hadn’t turned green!
(Many ostomates give their stomas a name. It helps make friends with the little fellow and to see him not as a red alien that has arrived on your stomach and changed your life forever! While I was in hospital this time, there was a lady with a brand new ileostomy which had come about through an emergency, so she had had absolutely no mental preparation for it in advance, and the poor lady couldn’t even bear to look at it. I tried to encourage her as much as I could, having three years’ experience literally under my belt, and after a couple of days she made a huge stride forward and gave it a name – Prince Harry! All of us in the bay laughed uproariously and asked why on earth? She said because he is brave, and loves his mummy! I thought, well, if she can think of her stoma loving her, perhaps the day will soon come when she can love him back. I said the name was brilliant; Prince Harry is a popular, fun-loving guy who does a lot of good in the world, and even more appropriate because he is a redhead! I gave this lady my phone number and said to her and her husband that any time she wanted any advice or help, or just a shoulder to cry on, she could call me. I am sure she will do fine eventually but for her it’s a huge adjustment, because beforehand she wasn’t even suffering any bowel problems – her colon had pretty much died as a result of an adverse reaction to a drug she was taking for quite another problem.)
After the operation, my hubby joined me in the recovery ward and I was definitely away with the fairies with drugs, and in quite a lot of pain. Before long I was taken up to the ward and ended up back on the same bay I’d been in twice before, each time in a different bed!
Before going in, I had been concerned about the problem I had last year with all my cannulae failing because of vein damage caused by 6 months of chemo. At my pre-assessment, the anaesthetist said that it was possible that my veins might have recovered by now, but they would note my request for the insertion of a PICC line at the outset, while warning me of the risks associated with this. When I came round, I found a regular cannula in my left wrist, and further up my arm, a mid-line (a half-way house to a PICC) for them to use if the cannula failed, but in the event, the cannula was as good as gold throughout, so the mid-line was not necessary. I am reassured by this.
Everything went according to plan. As expected, with Kermit being remade, he is huge – as big as he was when I first had him, at 40 mm, but over the next few weeks he will shrink and probably end up about the same 25 mm he was eventually. I am now using flat bags rather than convex ones, as he protrudes enough not to need the surrounding area to be pushed in, and the team sent me home with enough supplies to keep me going until my next order to my supplier which I put in on Tuesday, and the parcel arrived yesterday.
Being in over Easter as I had been three years ago when I was in for my total colectomy and the creation of Kermit, I fully expected to be kept in until the Tuesday at least, to take account of the two Easter Bank Holidays. However, when Easter Sunday came, four days later, I was told I was fit to go, and they discharged me.
I felt far from ready to go. With my ME I have a lower baseline and it takes me longer to bounce back, but they said I would recover better at home, and surgically speaking there was no reason for keeping me in. So off I went, and on arrival home, went straight to bed.
I stayed there for two days, feeling very weak and unwell, and in quite a lot of pain. I didn’t interfere with Kermit that day, but on Monday I changed his bag. I had noticed his output was quite red (as if I’d eaten beetroot!) and put it down to the general early days recovery etc. but when I took the bag off, there was quite a lot of bleeding from the underside of the stoma itself. I was able to clean it up enough to get another bag on, and my hubby and I agreed I should phone the stoma nurse the next day (that day was a Bank Holiday) and when I did, she said these things usually clear up on their own but if it didn’t, to try cold compresses to constrict the capillaries, and if that failed, I was to come back.
On Wednesday late morning I again changed the bag and was concerned how red the output had been in the meantime; this time the bleeding was profuse, and from other areas as well. It didn’t seem to be coming from the operation wound but from places all over the surface of the stoma, and it was running down my stomach onto my legs, and as fast as I cleaned it up, it was running again. I changed basin after basin of water and was getting through endless dry wipes. If you cannot get the skin clean and dry, the bag simply won’t stick. I was getting so desperate and called my hubby, and together we battled with it for getting on for 45 minutes. Eventually I wrapped the stoma in a dry wipe and got my hubby to hold it while I cleaned and dried the surrounding area, and we quickly zapped on another bag.
I went straight to the phone and called the stoma nurse. As we were speaking, I felt some activity and asked her to hang on, and blood was already seeping under the bag. Asking her to wait, I grabbed some “blueys” – those large blue incontinence pads ubiquitous in hospitals, and stuffed my pants with them! I looked 9 months pregnant! She said to go straight to A&E and they would catch up with me in hospital.
Then began a horrendous time of waiting around. We got through A&E to the medical assessment unit relatively quickly, but we waited for hours, being seen every now and then by people who just wanted to take blood and do endless paperwork. Repeatedly I asked for pain relief, and it was not until I had been a total of eight hours with no pain relief that any was forthcoming. I was also instructed not to eat anything because they were not sure whether I would need further surgery. I was therefore in considerable pain, weak, hungry and pretty agitated and upset (and gave my poor hubby a bad time, but he will fuss so!! – I know it’s only because he worries, but it really doesn’t help anyone!!). Eventually I saw someone, and a stoma nurse and one of her HCAs came down and they had a good look at Kermit. She reassured me we’d done absolutely the right thing coming in, and there was no way we could have dealt with this. She also said that I should not have been sent home before the stoma team had been up to see me and check all was well, but none of them were in until the Tuesday. They would have spotted the bleeding and kept me in until it was dealt with, and I could have avoided all that stress and hassle, especially as I was feeling so weak and unwell, and less able to deal with it. My hubby said, and she agreed, that I was feeling a lot worse because of the loss of blood.
Before my operation I had been instructed to stop my rivaroxaban. I had been prescribed this anticoagulant in 2016 when one of my CT scans revealed numerous small pulmonary emboli. After the operation they had resumed this, and the nurse said this certainly would not be helping with the problem. For now, I have been taken off it, and have not yet had any instructions as to when, or if, I am to resume it. She said again that the problem usually resolves itself. They had removed my bag and put one of their clear hospital ones on, so that people could look at Kermit without taking the bag off each time. I was told they were keeping me in overnight, and then we had to wait another goodness knows how long until they finally found a bed for me.
They were keeping me in for observation. Having taken blood they wanted to check my haemoglobin levels and see whether I would need a transfusion, or IV fluids, but this turned out to be unnecessary.
I was put on a general medical ward, in a dingy little room on my own which was very depressing. The only adornment on the walls was a series of posters which were just too far away to read, and every single one had been stuck up crooked! I thought if I was in there for any length of time I would just have to get out of bed and straighten them all! I had to wait while the right airflow mattress was found, and when I eventually did get into bed and my hubby was able to leave, I was so exhausted that I couldn’t sleep till gone 4 a.m. As soon as I relaxed in bed I got a violent attack of restless limbs – I often get restless legs in the late evening, probably due to my ME, but never have I had it in my arm before, and while my legs were bad, my right arm was sheer torture. I eventually lay hard on it and eventually it subsided.
They asked me to save all Kermit’s output into a pan so they could measure it, and in the morning, because I had eaten so little, there was very little in there but about 1/4 bag full of blood.
In the middle of the morning I was producing output again and the blood was a lot less. The stoma nurse and her side-kick came in and had another look, and while the bag was off, my surgeon turned up, and was able to have a good look, too. He was satisfied that the problem was nothing to do with his excellent handiwork, and pronounced me fit to go home that day, and to stay off the rivaroxaban, and the stoma nurse said she would phone with a clinic appointment for me in the next fortnight, but I could contact them any time with any worries. As he left, he said, “I am very chuffed with this operation. It all went very well.” I know he had given it a lot of thought over recent months, wondering how best to approach it in view of the fact that the hernia was sited awkwardly – on the outer side of the stoma – and taking my ME into account too. He had told me this would not be a straightforward operation and would probably take some time. He is so charming and friendly, and I am endlessly grateful to him for all he has done for me over the past three years.
After lunch, my hubby was able to take me home, but the usual wait on the pharmacy to send up my drugs meant we didn’t get home till tea time. I went straight to bed and stayed there till yesterday morning.
I left Kermit well alone during this time, but kept a close eye on him through the small window in the bag, and his output, which seemed to have no blood present. I changed his bag again this morning and all was well – he is still bleeding, but not hugely. Stomas often bleed a little when you clean them and the nurses warn you not to panic over this; it is because of the rich blood supply and the delicate nature of the surface of the tissue.
Yesterday and today I have been up, and resting downstairs on the recliner. My hubby is looking after me very well, preparing the meals. I had cooked a lot of low residue meals to freeze before going into hospital and it turned out that I didn’t need to go on this very low fibre diet this time after all, but no matter – we now have lots of good home cooking available as single-portion ready meals and I can eat as much fruit and veg as I want to bulk up the fibre. I now have to rest, build myself up, move about a little in order to build my muscle strength and improve my mobility – I am still very shaky and weak, and not to overdo things.
This morning I showered and washed my hair at last – utter bliss! – but oh so tiring! My hubby and I sorted the vast quantities of laundry together and he stuffed it all in the machine and I pressed the right buttons, and later he hung it for me. Throughout these activities, I kept taking time out to rest for 20 mins or so, and then started again. Together we’ll get through it all.
The stoma nurse phoned yesterday to arrange a home visit next Thursday – I am highly delighted as this saves the drive to hospital and a lot of waiting around while I am still so weak.
Although they have taken me off the rivaroxaban, I still need some sort of anticoagulant treatment for the prevention of DVTs (deep vein thromboses) post-op. When I was in last year, because I was on rivaroxaban, this was deemed unnecessary, but I am now back on the normal post-op schedule of daily fragmin injections, but fortunately for only two weeks instead of the usual four. The district nurse is calling in each afternoon to do this for me and I’m counting the days till the box of little syringes is empty – this stuff really stings – like being stung by a bee! The great thing is not to rub the place afterwards because this makes it a million times worse!! They sent me home with the supply of syringes together with a sharps bin for the nurse to put them in, and she will take this away for proper disposal after her final visit.
So that’s me for now – hopefully on the road to recovery at last, and with time to build up my strength and be fit to enjoy the warmer weather and get back in my studio again!
