2018–A Review of the Year

A year of distinct ups and downs, mostly dominated by health problems and not a lot of creative output this year, apart from one major project.

It is now just over a year since my mum died, and it has taken all this time for the solicitors to wind up the estate. Yes, there were some complications because the law had changed between the deaths of my respective parents but we as a family think they could have got their skates on a bit more than they did! My hubby worked wonders with all the paperwork at the beginning of the year, while he was still laid up with his broken leg, which eventually healed, but it took a long time.

At the beginning of the year, we had a memorial service for Mum which was very well attended, and which was a good celebration of her long life of 96 years. We planned this together and I designed the service booklets as I had done for Dad. We played a selection of her favourite music and I sang “I know that my Redeemer liveth” from Handel’s Messiah, accompanied by the organist from our church. I was able to speak about Mum as well.

Art Projects

I decided to make two copies of a mini-album about Mum, one for her best friend and one for us to keep, and I was not able to blog about this while I was making it in case our friend saw it, and things have rather taken over and prevented me from completing the uploading of the almost daily posts I did and saved as drafts at the time. Something to remedy in the New Year, perhaps?

Anyway, I did blog about the finished project, and made a video flip-through of it.

Later in the year, I made boxes to keep the two albums in.

The other main project I made this year was three small heart-shaped frames that I altered, as gifts for friends.

To accompany the purple one, I also made a birthday card.

Other cards 

These included a birthday card for a beekeeping friend.

For our wedding anniversary, I made this card for my hubby, with a swinging heart with our initials on either side, with a faux woodgrain effect.

For Valentine’s Day I made him this one:

with a pop-up inside.

For a friend’s 100th birthday I made this card, using some dies I got at a craft show early in the year.

Embroidery

Also for this friend’s birthday, I made this small cross-stitch plaque from a chart I designed many years ago.

I made no further headway on my other embroidery projects, I’m afraid!

Knitting and Crochet

I’ve really got back into this again this year. This year was supposed to be the Year of the UFOs, when I was determined to tackle my huge stash of UnFinished Objects but as usual this rather bit the dust! I did manage to unravel a tunic top I’d made many years ago, and started to knit this up again to a new design which will hopefully fit me a lot better than its previous incarnation!

I have now completed the back and begun on the front, but haven’t photographed it recently.

I also finished knitting a striped scarf I began while I was having my chemo in 2015.

For this, I made a lot of felt and crochet embellishments, which I have yet to attach to the scarf. (Another UFO…)

I knitted another scarf from a single ball of gorgeous yarn I bought in a charity shop.

Again, I haven’t managed to complete this – I am still making the peacock feather embellishments for this.

I shall need to buy some more yarn to complete these.

Not a terribly productive year art and craft-wise. Hope to do better next year!

Health Problems

One of the reasons for my lack of productivity was a major health crisis at the beginning of the year.

I saw my surgeon at the end of last year when he agreed that my recurrent parastomal hernia really did need repairing as it was causing me major problems. I went into hospital to have this done in March, and within a fortnight I was back in again with sepsis. I had two large infected haematomas in my abdomen and had to have two drains to deal with these, and I also had intravenous fluids, two units of blood, and three different cocktails of powerful IV antibiotics before they finally found the right combination to deal with the infection. I was in for nearly three weeks, in quite severe pain for most of the time, and feeling dreadful. It took them over 24 hours to get my temperature down to a safe level, and the whole experience was not something I ever want to repeat.

I saw my surgeon again in August and told him I was sure the hernia had returned, which was confirmed by a CT scan in the autumn. I saw him again recently and we discussed options. He is consulting a colleague in Exeter in order to come to the right decision for me. I blogged in detail about this here.

Hopefully another appointment will be forthcoming in the New Year, and I will know the way forward. Having discussed everything at some length with him, I feel a lot easier in my mind now about the possibility of further surgery if they deem it necessary.

It took me quite a while to get over all this, but I am convinced my recovery was helped no end by a friend introducing me to fermented foods.

Some good news, though – at my regular oncology appointment in November I was told I am still cancer free.

Fermented Foods

I got very interested in fermented foods in the summer, and started drinking kefir and kombucha, to try and counteract the ill-effects of so many powerful antibiotics on my system. A friend who had had many gut problems over several years had benefited greatly from this, and she kindly got me started on this route, and I’ve become a complete convert! My hubby and I are both consuming kefir and kombucha on a daily basis and we believe this is also having a beneficial effect on his diverticular disease. Everyone is telling me how well I look these days!

I have become very interested in the whole new area of research into the gut microbiome, and have been reading a lot about it.

Making kefir.

Making kombucha.

During this time I also invested in a kefir cheese maker which is a lot easier to use and more efficient than using muslin in a sieve. I am getting very good results with the kefir cheese which is delicious, and the resulting whey is extremely beneficial too.

Sourdough

In the summer, I also started making sourdough bread which is extremely nutritious and good for general health.

I made my own starter, called Esmeralda.

After many months on a pretty steep learning curve, I think I’ve finally cracked sourdough making and am getting consistently good results now. I have blogged about my efforts and photographed the loaves I make most weeks, so that I can see how I have improved with practice.

We both enjoy eating this on a regular basis.

Other bread

I am also continuing to make my regular seedy bread in the bread maker.

Another sort of bread I make every now and then is challah. Delicious! Really sweet and rich. When we can, we attend a regular Shabbat meal held locally by a friend, and I always like to supply the challah if we are going.

This year, I have also started making brown seedy baps which are much nicer than the shop ones!

 Other cooking

With excess sourdough starter, I have been making crackers and pancakes, from recipes I found online.

I have also been experimenting with Middle Eastern cooking, having been given a brilliant recipe book. We both very much enjoy this delicious, delicately spiced and nutritious food, and it’s so easy these days to get the more exotic ingredients online. My hubby has been enjoying the results of my efforts in this new area!

With the apples from our wonderful tree in the garden, I made chutney for the first time this year, and it was a huge success. Here is the jar I made for a friend, complete with the label I designed for it.

I also made some sourdough crackers for the same friend on another occasion.

Since being ill, I have gradually worked through our supplies of refined carbohydrates and we have been eating more whole grain foods and plenty of fresh fruit and vegetables.

I seem to have spent more time baking and cooking this year than making art!

Diet

My 5:2 diet has been ongoing throughout the year but this year I haven’t really lost any more weight. I have put on a few pounds since reaching my original target weight, and have found it very hard to maintain at that level, so I think realistically my current weight is probably my ideal weight. I have still lost around 4 stone since I started and I am well satisfied with that. My hubby has now agreed to join me on this two days a week fast, and doing it together I can support him in his aim to lose some weight.

Bible Study

Our little group went into abeyance for a few months because I was so ill, and it took me quite a while to pick up the pieces of my life again and catch up with everything that had got neglected during that time. When we resumed in the autumn, we gained two new members which has been a great joy – both contribute a lot and we have some interesting and lively discussions during and after the teaching. I continue to design plenty of visual aids on my desktop publisher, photo editor, and Inkscape (vector images) to produce on PowerPoint which we show on the TV screen. This year we have embarked on a major course on prophecy, and during the coming year, interspersed between these sessions, we will again be covering the Feasts of the Lord at the relevant times throughout the year. I have been studying the Bible in depth for over 30 years and it is always such a privilege to be able to share the fruits of my studies with others, particularly when they are as hungry for it as the lovely people in our small group. It would be lovely to see our numbers grow, but there is a great deal of apathy in the church today and most people are not prepared for the commitment, or to put in the time and effort required for study – such a shame, as it has proved to be the most exciting adventure of my life.

Kitties

Our two new kitties celebrated their first birthday in May, and with the nice summer weather we let them out in the garden for the first time, and they were soon enjoying it to the full, spending all day out there, chasing butterflies and relaxing in the sun, and keeping us company when we were sitting out under the apple tree having our meals. It was such a lovely summer in which to let them out.

Recently, though, we have been having terrible trouble with Ruby escaping through my hubby’s kitty defences and he has been working on improving them. Until we are sure they are safe, both kitties are grounded for now, and have reverted to being indoor kitties. They don’t seem to mind too much, and it’s probably a good thing the weather has been so wet lately!

Not only has Ruby developed into a regular Houdini, but she has also developed into the more naughty of the two in other ways too – she is a terrible food thief and will pinch stuff off your plate if you just look away for a few seconds! She can smell butter at 500 paces and absolutely nothing is safe from the little monkey. Lily, on the other hand, doesn’t seem bothered about our food at all and is generally very well behaved! There’s always one, isn’t there…

They continue to be an absolute delight. They are now fully grown and adult but they will always be our babies! They are very close and get on so well with each other, with only the occasional spat, usually at meal times. They are affectionate and love to be with us, and communicate with us all the time. Their little personalities are so different from each other and they seem to have settled down with Lily being the senior of the two. We are absolutely delighted with them both.

Outings

We have had some lovely outings this year. In May we attended the Devon County Show, a fixture I should hate to miss! I wasn’t long out of hospital and was determined to be well enough to go.

Teignmouth.

Hope Cove.

Tyntesfield, near Bristol.

Knightshayes Court.

Meals Out

We also had some fabulous meals out, including a really posh nosh evening at a Michelin starred restaurant for which we were given tickets.

A meal out with a friend. Very chefy food at a pub near us.

For various reasons it is difficult for us to get away on holiday, but living where we do, there are so many lovely places to visit, and friends to eat out with, and so on, that we hardly miss it. I love being at home anyway, with our lovely surroundings and beautiful little garden, our kitties, my studio and all the things I enjoy doing.

Computers

At the end of the year I had a bit of a crisis with my remaining laptop which involved having to format the hard drive and reinstall everything. My hubby’s laptop completely died around this time too, and with Mum’s money about to make an appearance, I decided to buy us both a new laptop and we went off one evening after doing some online research, and got a couple of Acers. I’ve always had HPs in the past but my last one really wasn’t as good as previous HPs so I decided not to get another. That laptop will now go up in the office as a replacement for my previous HP which died (I have been struggling up and down the stairs with it and really need one permanently up there for the accounts etc.) and the new Acer will now become my main computer. I still haven’t got everything back on and working as I would like it but I’ve got the essentials, and the rest will happen in due course.

Summary

Looking back over that little lot, despite my various difficulties this year, I’ve actually done quite a bit! The year has generally been a very good one and we have a lot to be thankful for. I hope to achieve a bit more on the creative front in the coming year, and for once I’m not going to list all the things I intend doing because I always fail to do them!! I shall do what I shall do, and hopefully I shall enjoy the process!

Wishing all my followers and visitors a very Happy New Year.

A Fruitful Appointment with my Surgeon

Warning – medical details – do not read if you are squeamish about such things!

I saw Mr. Pullan, my colorectal surgeon, today, as a follow-up after my recent CT scan which confirmed my suspicion that my parastomal hernia had returned. This is one of the images from the CT scan, which I annotated – it clearly shows the hernia.

This hernia has now been repaired twice, and last time I saw Mr. Pullan, in August, he said that if I was correct and the hernia had returned, it would be more difficult to repair this time because a) it had already been repaired twice and b) there was now a Permacol biological mesh in place.

Today, having seen the scan images, he was able to enter into a more constructive discussion of options. He didn’t have the images in front of him so I showed him this one on my iPad and he was fascinated by the annotations! He found it useful as he was able to point out various things, including the considerable size of the defect through which the hernia is emerging.

He said first of all that (as I already knew), the next step in such cases was to re-site the stoma on the other side of the abdomen, because repeated repairs weaken the surrounding muscle and any further repair along the same lines would be less likely to be effective. I reminded him also of the fact that during the hernia repair operation he had made extra incisions either side of the stoma to give him more room to manoeuvre which would have further weakened the area, and he agreed with this. We also agreed that we were starting from a disadvantage from the outset, because my muscles are already very weak due to my ME.

I told him I really didn’t want to go down the moving-the-stoma route, which he understood and appreciated – I said that Kermit, my stoma, is working fine, and I am used to him being where he is, and surely moving him would just introduce another site for potential herniation, which he agreed would be the case. He said that also, there was a lot more “plumbing” involved with moving an ileostomy to the left-hand side of the abdomen – ileostomies are always on the right because this is where the junction between the small and large intestines is, so it is logical to place the stoma here when the colon is removed. Colostomies, on the other hand, are always sited on the left, and lower down, for the same reasons of anatomy. Moving the stoma would mean starting from scratch again with a brand new stoma and all its associated problems – although of course I now have quite a bit of experience under my belt (literally!) and I wouldn’t be dealing with these as a newbie, and would know how to cope with it all. I told him that since the last repair operation in March of this year when he inserted the mesh, I have had no trouble with Kermit because as I requested, Mr. Pullan made him longer so the output tends to go into the bag rather than underneath it. Previously he had been retracting flush with the skin and causing a lot of leaks and skin irritation. During this operation, Mr. Pullan inserted the mesh through the hole in the abdominal wall through which Kermit emerges, remaking him in the process, thus avoiding open surgery again, which I have already had done twice. Kermit is now a much better shape than previously, causing everything to work a lot better, and I am reluctant to disturb this state of affairs.

I asked him what were the pros and cons of simply leaving things as they were. He had told me after my first repair operation in January 2017 that smaller hernias were more likely to cause obstructions than larger ones. That operation was an emergency, following an obstruction caused by the first hernia which was quite small, and could easily become restricted. I asked him how large the hernia is now, in terms of risk of obstruction. He said it was medium-sized, so I suppose it carries medium risk of obstruction. He said that having experienced one before, I knew the signs, and would know what to do. I told him I knew that obstructions were a call for an emergency visit to A&E and that they were life-threatening, and that if there was nothing in the bag and I was throwing up, I would go straight away. He said that that was good, but it could be in a dangerous state even if I had not started vomiting, and if I noticed any change from normal, such as pain in that area, I should be on high alert and seek immediate advice.

My hubby said that if we just left it alone, it might cause another obstruction, necessitating emergency surgery again, for which I was not prepared, and in an already weakened and compromised condition, leading to a less favourable outcome as far as recovery was concerned. I said I agreed with this, but having elective surgery also carries risks – after all, my repair operation in March of this year led to a serious, life-threatening infection.

Turning to the possibility of further surgical intervention, he said this was quite a problem. It’s not just the fact that it’s been done before and there is now mesh in place, but the position of the hernia is an issue, being in the right iliac fossa, where there are quite a few structures in a relatively small space – the most difficult site for a parastomal hernia. Each time it has recurred in the same place. He examined me again, and remarked that I am quite short in the body and there isn’t a lot of space between the bottom of my rib-cage and the top of my pelvis, which makes this situation worse. I suggested six months of spinal traction to stretch me but he laughed and didn’t think that would really help!! (Might be nice to be a few inches taller, though…)

He said there were various alternative surgical approaches to repair intractable parastomal hernias, including a procedure known as the Sugarbaker technique. I told him I knew about this, having done some research prior to my last repair. It involves attaching a piece of mesh to the inside of the abdominal wall, and rather than cutting a hole in the mesh through which the end of the intestine passes in order to form the stoma, the mesh is applied over a length of bowel, forming a tunnel over it, trapping it against the inside of the abdominal wall and preventing it from moving around and emerging through any defect in the muscle. There is some risk involved in anchoring a section of bowel in this way as the loops of intestine are designed to slide over one another with the passage of food, and it can cause a blockage. He said that he had not performed this operation but the literature was positive about its outcome. When I got home I did some further research on this, and found that compared with other forms of repair (simple suturing – 100% recurrence – this is what I had for the first repair, performed as an emergency following an obstruction, performed by a general surgeon not qualified to perform a better repair at that time, and “keyhole” repair, where a hole is cut in the mesh, through which the stoma passes – a slightly better prognosis but still resulting in fairly high percentages of recurrence – this is the type of repair I had in March of this year), Sugarbaker has a much lower rate of recurrence and is more likely to remain stable. Statistics vary, of course, depending on a variety of factors, such as the length of time spent monitoring for failure post-operatively in the various trials, and differences in individual patients, such as age, weight, lifestyle etc.

Here is a diagram of mesh attached using the Sugarbaker technique.

I said I was fairly reluctant to face further surgery if it could be avoided, especially in view of how ill I was after the last operation, and he understood this. We agreed that it was a matter of weighing the risks of further surgery and doing nothing, which could result in another obstruction and the necessity for emergency surgery with all the disadvantages of that – for example, no proper physical and emotional preparation, which can adversely affect the outcome with slower recovery times etc. Also, as happened to me before, by the time they eventually did operate, I had been vomiting and not eating for several days (waiting from the Sunday morning till Tuesday evening for a CT scan!!) and was in a seriously weakened state which is not ideal for someone about to undergo major surgery.

We spoke a bit about my post-operative experience this year, being readmitted a fortnight after discharge with a severe infection. He recalled the further operation required to insert the larger and deeper of the two drains, I told him how much pain the larger drain had caused, especially when it was first moved, and then removed – about the worst pain I had ever experienced – and we talked about my brief stay in Mum’s nursing home on discharge, not just to help me convalesce, but also for my hubby’s benefit. I said that I had felt so poorly with the infection, and he agreed that I had been very seriously ill.

I said I did not relish the risk of a repetition of that, and I asked what was the cause of the abdominal haematomas that gave rise to the infection. He said that I had probably been put back on the rivaroxaban (anticoagulant) a bit too soon after surgery, and if there had been something weakened that had bled a little, under normal circumstances this would have healed up on its own, but in my case, the reduced clotting of the blood had caused more extensive internal bleeding. In such cases, the body launches a defence in the form of an invasion of macrophages to mop up the bleed, and the whole thing can get very sludgy and infected. It was a relief to know that there was a logical reason for the internal bleed and that it was not likely to happen again.

He also said that the internal bleeding itself could ultimately have led to the failure of the hernia repair. It could cause the mesh not to adhere correctly, leading to an early return of the hernia. The biological mesh would eventually be absorbed by the body without having done its job. I found this explanation for the failure of the repair quite fascinating, and it did explain a lot. Initially I was amazed and disappointed that the mesh repair had failed so rapidly, and couldn’t understand why this should have happened.

Mr. Pullan said he would like to consult a colleague at the Royal Devon and Exeter Hospital (RD&E) and run some of his thoughts past him to see if he could come up with any other ideas of how to deal with this intractable problem, and to weigh up the risks and benefits of various approaches. He would send him my scan images and full details of everything that had been done to me so far, and he may or may not want to see me himself. He is probably one of the colorectal surgeons from that hospital who came to speak to our local Ileostomy Association about parastomal hernias soon after my original operation – it seemed to be an area of particular interest to him. It would be strange if it was the same surgeon – unfortunately I can’t remember his name.

I really appreciate all the trouble Mr. Pullan is taking, and the thought he is putting into my case – I have been very impressed with this aspect of my relationship with him throughout. He is a very thoughtful and thorough man, and he is always very open with his ideas and suggestions, keeping me fully informed, and all the while listening carefully to my own views and opinions, and answering all my questions in a considerate and informative way. I always come away having learnt something interesting. I have always taken a great interest in all aspects of my various medical conditions and their treatment, and have taken a lively interest in everything done to me and for me, and I have found that everyone associated with my care has responded very well to this, and have been more than willing to explain and discuss in depth any issues of interest to me. Probably the majority of patients just go in, have stuff done to them and leave, happy to remain in blissful ignorance, but that’s not enough for me! I find the whole thing fascinating, and this attitude seems to be appreciated as most of them love their work, and enjoy talking about it. I love to hear of the latest advances etc. and how the professionals are working at the cutting edge (sometimes literally!) for our benefit. We are so blessed to have such consummate professionals to care for us in our wonderful NHS, especially when they are as charming and personable as Mr. Pullan and those others who have been involved in my treatment and care. Hats off to them all!

I came away from the appointment with answers to questions I had not even thought to ask. It was a very constructive and informative consultation and an educational experience. We now await further developments.

I was also able to have a word with the stoma nurse about the ongoing saga of the support pants. Having heard nothing further from the company for a while, I phoned the rep yesterday and left a message on her voicemail, asking for a progress report on the final pants that I am still waiting for. I have two pairs, and can just about manage with those, but I will be stuck if I have an accident – I need one on, one in the wash, and a spare in case of emergencies. She said she would email them today and ask them what was going on, and to contact me asap. She said it was very poor that I had had to wait over three months to get even the first pair. I said the trouble was, they had no competition as they are the only company that does both home visits and a bespoke service, and she said lack of competition should make no difference, and the way things had been dealt with was not good enough. She did add, though, that when they got it right, the garments were excellent, and I had to agree with her. The two pairs I have got are really good – a very good fit, beautifully made, and they do what they are supposed to do, too.

So we await further developments on that front, too.

Follow-Up Hospital Appointment

This morning I had my long-awaited follow-up appointment with the surgeon, after my operation at the end of March and subsequent major infection in April. At the time, he said he wanted to see me a fortnight after my discharge, but NHS timing being as it is, for them, two weeks = three months!

I had been having trouble with Kermit, my ileostomy, for weeks after the operation wound had healed, with many leaks and frequent bag changes. I kept hoping for an early appointment so that I could see the stoma nurse at the same time, and during this time, I was dealing with the problem myself and getting more and more frustrated with it. I suddenly remembered I’d had exactly the same problem after my original operation in 2015, and after trying various solutions, the stoma nurse had given me convex bags to try, which act by pressing on the parastomal area and making the stoma protrude more into the bag, and this solved the problem. I had been using the normal flat bags since the operation because initially, you have to let the area heal before using convex bags, and also, because Kermit Mk II was longer after being remade during my hernia repair surgery, I thought it would no longer be necessary. Anyway I decided to try, and hey presto, it worked, and the problem was solved.

I phoned the stoma team a few days ago to ask if I could see someone during the surgeon’s appointment, and was told that they were very short-staffed, with two on leave, and one with a broken wrist, but they would do their best. The HCA (complete with cast and sling) did manage to come, and she and the surgeon saw me together.

They agreed that I should have new support garments. The last ones I had were in January 2017 and they should be replaced every year as the elasticity tends to diminish, and I had also lost weight since then, so my current garments are probably not providing adequate support. The stoma nurse will arrange for a representative from the company to make an appointment with me, and she will come and see me at home.

I told the surgeon that I had a suspicion that my hernia had returned. He examined me, but couldn’t be sure, so he is booking me in for a CT scan to see what is going on. He said that if I had got a hernia again, it would be very much more difficult to repair, firstly because I have already had two repairs done, and secondly, the mesh that he inserted in March would make things a lot harder. I said that I realised this, and that I was most unwilling to have Kermit re-sited on the other side of my abdomen, which is what they often do under these circumstances. Not only would I have to get used to managing Kermit on the other side, but it would also introduce another weakness in the abdominal wall and a potential site for herniation.

Anyway, we shall have to wait and see what the scan reveals. If it has herniated again, I am going to suggest that we leave well alone, and try and manage it without further surgery, and I have a feeling he will agree. There is always a risk of it causing another obstruction, which would again involve major emergency surgery, with the added complications listed above. Meanwhile, we will try and get new support garments as soon as possible.

I told him that I was feeling better than I have felt for years, and my hubby agreed that I was much better these days. I told him I had decided to try and restore my gut microbiome by drinking kefir when I came out of hospital and was still on the strong antibiotic cocktail to combat the last of the infection. In hospital I had three different combinations of intravenous antibiotics and came home with the oral version of the last, and this was playing havoc with my gut. I knew my friend had had great success in dealing with her long-standing gut problems, by consuming kefir and other fermented foods, as well as some radical changes to her diet, excluding certain foods that were causing her problems. She came round, armed with some kefir grains and a lot of very helpful information. Since then, I have been immersing myself in this whole new world of fermentation and the diversity of the gut microbiome. My surgeon didn’t say anything in reply and he probably thinks I’m a weirdo, unless he’s kept up to date with the latest research in this area! Anyway, the proof of the pudding has been in the eating, literally, in my case! (A little aside: I do hate the way this expression has been adulterated recently – I keep hearing people on TV saying, “The proof is in the pudding.” This is nonsense!!!)

We also discussed my anticoagulant treatment. Up until my recent operation I’d been taking rivaroxaban, because some time previously, a CT scan had revealed numerous small pulmonary emboli. I was told to stop the rivaroxaban before surgery, and resume it immediately afterwards. This became a problem a few days after I was discharged, with profuse bleeding from the stoma, and I was readmitted overnight until it settled down. I remained off it during the following couple of weeks, during which time I was brewing up with the infected haematomas in my abdomen which led to the early stages of sepsis and my emergency readmission. When I was discharged, I asked about going back on the rivaroxaban and they said no, but to have the daily fragmin injections for several weeks (horrible – like bee stings!). Once these were finished, I spoke to my GP on the phone and asked again, and she said she had had a letter from my surgeon saying that I should not start again until I had seen him in the outpatient clinic. We all thought my appointment would be a lot sooner than it was, so all this time I have been without them. He said that I really should be taking them, and would inform my GP accordingly. It is a relief at last to know where I stand on this.

All in all, it was a good appointment. My surgeon is so expert and experienced, and speaks with authority but without being patronising, and is friendly and charming. He is always ready to listen to my point of view and we have fruitful discussions, and informed decisions are made. I am extremely blessed to be cared for by such a man. I always know I am in very good hands with him, and that he always acts in my best interest, and gives a lot of thought as to how to deal with the various problems I have had. I have the greatest confidence in him.

So now we wait and see what result the CT scan brings.

A Major Health Setback

Warning – medical details, but some nice photos at the end!

After being discharged from hospital recently for the second time after the bleeding from my stoma, I was hoping to make a good recovery and start picking up the threads of my life again.

However, although the early days seemed to be going OK, I didn’t pick up as quickly as I’d hoped, and for several nights running, woke up soaked to the skin having had night sweats – something I’ve never suffered from before, even during the menopause. I mentioned it to the district nurse and she agreed that it could be a reaction to ongoing use of paracetamol and I tried cutting this down but it didn’t help. Later, several doctors and nurses said that paracetamol didn’t usually have this effect. (So much for Dr. Google…)

Towards the end of that week I was starting to feel worse and was off my food, until on the Sunday (15th April) I couldn’t bear the smell of it cooking. I kept feeling extremely cold and shivery and that night we took my temperature and it was around 38 degrees – I didn’t really trust our little thermometer and decided to ask the district nurse to take it again the next day when she came.

That night I started to feel quite poorly and my hubby phoned the out-of-hours doctor – why is it that I always get ill over weekends and bank holidays when nobody is around??!! – he was absolutely useless and was clearly going down through a printed checklist and wasn’t really listening to me. At the end I said, “What about my high temperature?” He said I’d probably got flu!!! I said I definitely hadn’t got flu because I’d had no throat or nose symptoms – he said you can get flu without those. I knew I hadn’t got flu! Anyway, if someone reports a temperature and has recently undergone surgery, you don’t think “flu.” He said to phone the GP surgery in the morning if I was still concerned.

In the morning I felt terrible and collapsed in the bathroom. My hubby happened to come in just at the right moment and helped me back to bed. We took my temperature again and it was still high.

Then the district nurse arrived and we asked her to check it and she was so concerned that she immediately phoned the GP surgery and a doctor came up within 20 minutes. He examined me and said he was calling an ambulance. I was apparently showing two markers for sepsis and this needed dealing with immediately. Apparently if we’d left this another 24 hours it could have been curtains for Shoshi…

Once we got to hospital we had a bit of a wait but at least I was able to be lying down. I was in a cubicle in A&E and various people came in and took details and examined me, and all the while I felt absolutely freezing cold and my hubby wrapped me up with extra blankets etc.

Eventually a bed was found for me and they said that my feeling cold was my body deceiving me – my temperature was in fact quite high – nearly 39 degrees – and if they didn’t bring it down I was likely to have a seizure. They therefore proceeded to take away all the blankets, saying that they were actually making things worse rather than better, and turned electric fans on me to cool me down! I spent the next two nights shivering uncontrollably and not sleeping at all, but my temperature did fall a bit, and over the next few days was up and down.

The first thing they did was to try and identify the source of the infection I evidently had – I had a chest X-ray and they tested my urine, both of which were OK. I had a CT scan that revealed some post-operative haematomas and this was believed to be the source.

I saw my surgeon and he said that haematomas can often cause night sweats, so that was the explanation for those. I continued to have them during those first few nights in hospital – one night having two – what a hassle having to change all the bedding etc.

I was put on my first cocktail of IV broad spectrum antibiotics and was given one unit of blood as my haemoglobin levels were falling alarmingly. They were supposed to give me two units but they said a side effect of blood transfusion can be to increase one’s temperature so they held off on the second one – this happened a few days later.

Once they had established the location of the haematomas, they inserted a drain on the left side of my abdomen, with ultrasound guidance under local anaesthetic. I was pretty nervous about this procedure but it wasn’t as bad as I thought it would be. This drain was a fairly fine tube and didn’t penetrate very deep; it was attached to a bag from which they took samples for culture, and at the top end it had a two-way tap to enable them to flush the drain daily. This drain wasn’t uncomfortable at all but limited my movement somewhat. It also had the effect of lowering my temperature quite rapidly as the infected fluid was draining away, but it was apparently not having completely the desired effect, so a couple of days later I had another CT scan that revealed more problems.

It’s hard to remember the exact sequence of events because I was feeling pretty lousy most of the time.

 

I do remember that my surgeon wasn’t on call for ward rounds for a few days and I was looked after by one of his colleagues, and he hummed and haa’ed about the infection being under the mesh, and query remove mesh? He wrote this on my notes. This gave me great cause for concern because this is a very serious matter and extremely difficult to deal with. When my own surgeon came back, he read this and said, “What’s all this about removing the mesh? We don’t need to do that!” He wrote in large letters in the margin, “Leave mesh alone!!” and signed it, putting my mind at rest straight away.

He said I needed a second drain, and as this one would be bigger and deeper, it would have to be put in under general anaesthetic. This was done, and afterwards I remained in severe pain until a couple of days after it was removed – it was very difficult to get out of bed and I managed to get onto the commode and that was it. This drain was connected to a vacuum bottle to assist the drainage of fluid, and with drains on both sides of my body, with a bag on the left side of the bed and a bottle on the right, my movement was even more restricted.

During the rest of my time in hospital, they tried me on two more cocktails of IV broad spectrum antibiotics because we were clearly dealing with what my mum would have described as “a very virile germ” haha! The final lot did seem to start working, and all through this time my temperature remained within normal limits, and my blood pressure (always on the low side) began to climb a bit so that the systolic pressure was up to three figures again – when it was down in the 80s they were quite concerned.

After a few days my surgeon decided I should have another CT scan to see how things were going, and said that the large drain on the RH side needed to be withdrawn by 2 cm in order to continue to drain more effectively. When the nurse tried to do this the pain went through the roof, before it had even moved a millimetre, and she said she wasn’t going to touch it any further without consultation.

They tried again, this time administering gas and air, but this had absolutely no effect except to make me feel slightly woozy. The pain was absolutely excruciating and I dreaded the moment when the wretched thing would have to come out altogether.

This drain was the first of the two to be removed. I told my surgeon that the gas and air had been useless and he said that because of the risks, it was not usual to remove drains under general anaesthetic, but he would give me some sort of sedative. I was given a Valium tablet which I had very little faith in, and again, all it did was make me feel slightly woozy – and less so than the gas and air. When they pulled out that drain I thought my last hour had come! It was about the worst pain I’d ever experienced.

By this time I was at a pretty low ebb, having been through so much, and all my reserves seemed to have gone, and everyone who did anything to me seemed to hurt me in one way or another! My poor hubby was so worried because I was at such a low ebb physically and emotionally, and it didn’t take much to reduce me to tears. Everyone has told me in the past how strong I am but on this occasion I definitely wasn’t, and felt completely at the end of my tether.

My surgeon said that that drain was very large and deep, and had penetrated through the same complex muscle layers to the right of the stoma (which is why the hernia operation had caused so much pain as well), and when a drain has been in for a few days, one’s body tends to develop tissue which “glues” it in place, which is why it is painful to remove. He said that after a day or two the pain should reduce, and it did. He said that the other drain was of a different sort – a much finer tube, less deep, and into simpler muscle layers. It came out a day or two later, and although it was pretty uncomfortable, it was nothing to compare with the removal of the deep one.

From the beginning I had problems with cannulae failing again. I had requested a PICC line from the outset before my hernia repair surgery but they were reluctant to do this and for once, the cannula they put in did stay the course. However, with this recent admission I was having endless problems, and having them dig around for a new site, causing me yet more pain and then for the wretched thing not to work from the outset, was becoming very wearing. They left the first one in for a couple of days longer than regulations required because it was still working and I was anxious about how a new one in a different vein would perform, but eventually they said it had to come out because of the risk of infection. Over the weekend I again requested a PICC line and they muttered on about risk of infection, and it not being necessary for short-term treatments, etc. until I was getting desperate. On the Monday my surgeon turned up again and I told him the trouble I’d been having, and immediately he said, “Let’s get the vascular access team straight down here and get a PICC line in right away, shall we?” He cuts through all the flim-flam with such authority but with such charm, and I always feel so safe in his hands! While I was in, I told him I’d already trusted him with my life three times, and he knew more about my insides than anybody but God, and I didn’t want anyone else messing about with me! He laughed! My hero.

I must share this funny photo with you. My hubby was endlessly amused by this chair – there was a stack of these chairs in the corridor for visitors. He pointed it out to quite a few other visitors and everyone had a good laugh!

Note the redundant apostrophe before the final “s” – this is something that always bugs me lol lol! We both thought that the writer’s spelling and grammar left a lot to be desired!!

After being in for 2 1/2 weeks they said I could be discharged. The infection was 90 percent plus dealt with, the drains had done their job, and the current course of antibiotics (now being taken orally) would do the rest. Because I’d had almost total bed rest during that period I was almost unable to walk, but could only shuffle very slowly with a walking frame. Because my hubby was so tired and so worried, and to give him a break, and also to allow me a transition period during which I could regain enough strength to be able to wash and dress independently and also to be more mobile, he fixed for me to spend a few days convalescing, and found me a room in the home where Mum had been.

This was rather a bizarre experience! I had had pretty negative vibes about the place because she had been so difficult, although I knew it was the best place and the care second to none. I knew a few of the staff and knew them to be efficient and caring. So off I went, last Friday, 4th May.

I didn’t sleep well throughout my time. On arrival there was a regular mattress which proved to be too hard after resting on it for half an hour, so they gave me an air mattress – I spent several hours sitting out of bed getting very tired indeed as they tried first one, and then a second, mattress – both of whose pumps were not working properly – they had been put away without being checked. In the end, I had to sleep the first night on the regular mattress, and they found a third air mattress the next day which did work, but the pump made such a loud buzzing noise that I had to continue to wear my earplugs as I’d done in hospital! Also, the room was small and the window couldn’t be opened very wide and I got very hot. I had come out of hospital in winter woollies and suddenly we were in the middle of a heat wave!

They cared for me so well. After that first night, a carer showered me and washed my hair – I was still very weak – and this gave me a tremendous boost, not having been able to do this for nearly 3 weeks!

The next day my mobility improved greatly, and I was able to walk, not shuffle, with the walking frame, up and down the corridor several times. The weather was glorious, and my hubby came over and we spent quite a bit of time over the few days I was there, sitting on the wonderful roof terrace they have, high up, overlooking the beautiful bay, and it was so hot that I began to catch the sun, and we had to go back nearer the building to sit under the umbrellas there.

The care home is part of a retirement village, which consists of the original beautiful Victorian manor house where I believe there is some accommodation, and where you can have meals; they have various functions there, and people who are not resident can join the club. My hubby belonged for a while during the time Mum was in the care home – he would often sit in the lounge with a book and a cup of coffee if his visit had been a difficult one. He got to know the staff there quite well.

Another part of the complex is a small building above the care home which is for convalescence, but since there were no available beds, I had a room in the main care home.

Below, there are some luxury apartments for people who are able to live independently. You can see the edge of this building on the left in the next photo, opposite the manor house.

Last year they had an open day and we were able to visit a couple of vacant apartments, and they were stunning – one or two-bedroom apartments with a small kitchen, bathroom and a lounge with a balcony looking straight over the sea.

Higher up, above the retirement village, is a block of luxury apartments, privately owned. In the foreground is the overflow convalescent home.

Looking back towards the care home from the roof terrace.

I think if the weather had been bad during my few days’ stay, I would have gone stir-crazy a lot sooner than I did – but sitting up in the sunshine and getting my first taste of fresh sea air and warm sun, and the sight of natural beauty after so long being confined in a place where everything you looked at was functional, was bliss. The views over the bay were stunning, and just what I needed!

On bank holiday Monday (2 days ago) my hubby took me out for a little drive and we went along the sea front, and enjoyed seeing all the holidaymakers in their summer clothes and the kids fishing in the rock pools with their little nets – some things never change – I remember loving this when I was a child! – and being so grateful for the glorious weather which would attract the holiday-makers and give a boost to the flagging economy of the town.

It was so lovely to get out and about, to be in the car, to see how much more green the trees were – just to look at something different and alive!

During my stay at the home, I got to know quite a few of the other residents (I was the youngest by far lol!!), most of whom were absolutely delightful and charming. I sat with the same people in the dining room and they were good company. The home has a weekly schedule of entertainments and activities, and on my first full day, you could go down to the manor house for a meal, and my hubby joined me for that. Half way through the meal my energy suddenly drained away and my hubby knew immediately that I had to go and rest, and said afterwards that it must have been serious if it prevented me from staying and enjoying some pudding!! He knows me too well… Yesterday was the day when residents could go out for a meal – this happens about once a fortnight. They have a mini-bus which can accommodate quite a number, including several wheelchairs, but my hubby drove me, and joined us. We had an excellent meal in a place near Dawlish, and when I came home, arrangements had been made for the continuation of my injections by the district nurse at home, and I was allowed to go.

Staying there opened my eyes to a few things. I was aware that there were social activities laid on, and how kind and efficient the staff were, but when Mum was there, she did not avail herself of any of this and preferred to spend her whole time in her room. I know that her deafness really isolated her, but having met the other residents, it saddened me that she didn’t make the effort to make any friends because they were all so lovely, and it was not surprising that she got so depressed, not taking advantage of all the lovely facilities in the home – there were several beautiful sitting rooms, one with a TV (she preferred to watch the TV in her room) and the beautiful sun lounge on the top floor giving access to the roof terrace. There were always jigsaws out, and lots of books and magazines. One of the things they provide is for someone to sit with residents in their rooms to keep them company on certain days each week, to prevent loneliness for those who perhaps are not well enough to leave their own rooms. Mum never took advantage of this, and then complained that nobody ever talked to her!

I am very glad I went, but oh so glad to get home yesterday afternoon – a few days was enough for me. My hubby had anticipated me being in for a week, but as I was so much better and he was looking so much more relaxed and less tired and strained, we decided to call it a day and get me home. Never has “Home, Sweet Home” meant more to me!

As for the kittens, when I first got home, they ran away from me, and when I attempted to get close to Ruby she was having none of it – I tried to cuddle her a couple of times but she squeaked and pulled away. Very disappointing when she had missed me so much during my absence but I thought maybe I smelt different! However, later in the evening I had two lovely long cuddles with her and she purred her little head off and got quite drowsy in my arms – this morning she’s again been a bit wary of me but things are definitely improving! My hubby says she’s a lot more settled since I got home, and isn’t looking for me and crying any more. I’ve never been away from home for so long and it must have been very worrying for her, wondering where I’d suddenly disappeared to for so long. I have missed them so much and last night I told my hubby how glad I was to be home, back with my little family! Life will soon return to normal, I am sure.

Meanwhile, he is doing the meals, which he was doing anyway in my absence, and having had that few days of convalescence, he doesn’t need to help me with any personal care. He is coming and going, and not worrying about leaving me on my own – all visitors (including the district nurse) have been told to let themselves in round the back to save me from having to get up to answer the door! Oh, it’s so good to be home!!!

Parastomal Hernia Repair

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!