Successfully Reversed

Elderly ladies in Regency days often kept a lap dog on whom to blame any audible or malodorous evidence of flatulence. No respectable lady would admit responsibility for such effects, and so the poor little doggies got a bad name.

I, on the other hand, was so overjoyed at the first signs that my re-joined colon was beginning to work last Saturday, 30 hours after surgery on Friday morning, that my txt msg flew around the world to close friends and family, announcing proudly: JUST FARTED! A message that may have offended those not in the know who happened to see it, but which elicited a great chorus of replies along the lines of “Great!” “Fantastic!” and “Wow!”

The Big Brother in charge of monitoring my e-mails and texts may be wondering if this is code for some kind of terrorist activity, but I can bring an entire medical team forward in my defence to explain that this fart – the first for two years – was indeed a cause for rejoicing.

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I decided to give the surgical team a chuckle, so decorated my last bag. They did appreciate a little humour in the operating theatre, and I was touched that a number of them came by to thank me personally.

And so I have joined the Noble Company of Dysons – ostomates who have undergone a successful reversal of their colostomy and are now bagless. At present, I still have 34 little metal staples holding my tummy together, and a dressing over the stoma site, which is not stitched but healing up very tidily from the inside out. The staples are due to be removed tomorrow, and as the surgeon made her incision exactly over the previous one I will be left with just one neat scar once it has healed completely.

Following that initial breakthrough – literally a breakthrough in this case – nothing much happened, so I took advantage of the fact that the hospital caterers provide such a wide variety of food to suit all ethnic groups in the region, and ordered a lentil daal on Monday evening and a vegetable chilli on Tuesday. They had the desired effect, triggering minor explosions on Wednesday, and so I was discharged on Thursday to my great delight.

Once again, I have to pay tribute to the kind, caring nurses of the NHS who looked after me, to the capable and skilful team of doctors and my very competent surgeon whom I look on as a friend after all she has done for me. I will gloss over the hiccups and mis-communications due to an unwieldy administrative system.

My Swiss granddaughter who generously appointed herself Granny-Nanny for the first few days, chauffeuring me to hospital, looking after her great-grandmother during my absence, stocking the pantry and generally running things as she would her own domestic empire, was shocked and amazed by British inefficiency encountered for the first time at close quarters. Her sister, arriving to take over, has now lived here for more than two years and grown accustomed to the English way of life and our habit of muddling through, so listened sympathetically but with a wry smile. Put Number One granddaughter in charge of the country, and she would solve all the problems that are giving Mr Cameron & Co such headaches. Alas, she had to return to Switzerland to her proper management job, so didn’t have time to put the UK in order. My mother wasn’t sure what had fired such indignation but gathered it had nothing to do with her, and simply enjoyed being able to stay at home with loving great-granddaughters to look after her. She, more than anyone else, was truly happy to see me home again, bouncing off the walls and in no pain or discomfort. I will say it yet again: I am very blessed to have my lovely family who are so ready to drop everything and leap into the breach.

Most of all, though, I thank God for bringing me through this with peace of mind and equanimity. I am also very grateful to all those who upheld and supported me in prayer and with loving thoughts. It has been a very interesting and enriching experience.

Goodbye To Winnie-The-Pooh

I shall be celebrating my second stomaversary by becoming a Dyson.

That sentence is probably meaningless to anyone who is not an ostomate – and what, prithee, is an ostomate? I hear you ask. Even my spellchecker doesn’t know the word (though that isn’t unusual; I am not impressed by my spellchecker’s vocabulary).

Put in simple English, I at last have a date for the operation to reverse my colostomy: to rejoin the two ends of my colon that were left after the diseased part was removed, and to restore its normal function (fingers crossed!). I am told by the doctor who did my pre-assessment that it’s a relatively minor operation, and nothing like the ordeal I went through two years ago when I was an emergency case and spent several hours getting sliced and spliced. Again, fingers crossed: he was a very dishy man, and I tend to trust beautiful people, which is a weakness of which I am only too aware; beauty is not always truth, whatever Keats says, but I really want to believe this.

Soon after my surgery I joined the Colostomy Association, which is a marvellous organisation, a very worthwhile charity providing immense support for its members, and working to raise awareness of the condition. It has a closed Facebook page where members can discuss all kinds of private issues, rant and rave, weep and laugh, make insider jokes and generally get all kinds of advice, sympathy and information that only fellow-ostomates can provide.

I’m giving them a plug here, because they deserve it and if you know anyone with any kind of ostomy, do pass on this URL. We have members from all over the world, although it is basically a British-based charity, catering for those with colostomies, ileostomies or urostomies, as well as their nearest and dearest. (You don’t know what those are? Look them up. Most people only hear of these when they get one.)

There is also a sister organisation for children, called the Breakaway Foundation, because contrary to popular belief it is not only elderly patients who have to undergo these procedures. There are a good many babies, children, teenagers and other young people living outwardly normal lives with this hidden condition, but – especially in the case of teenagers and young adults – sometimes suffering psychologically from “being different” as well as enduring the physical pain and discomfort from recurrent bouts of Crohn’s disease, ulcerative colitis, Hirschsprung’s disease etc.

These are just some of the things that are far more common than we realise, and because the areas of the body affected are private, the subject is generally taboo. Nobody wants to talk about those bodily functions, and I have also noticed some friends looking squeamish at the sight of my beautifully healed scar, which is now just a faint white line.

That is my one regret, because it’s about to be re-opened and will take a while to fade again. Having received my colostomy on 4 October 2012, here I am getting it reversed on 3 October 2014, the eve of the second anniversary of the great event, known in ostomate-speak as a stomaversary. Last year I decorated my pouch with appropriate designs. This year, I will become bagless, hence the term Dyson, from the vacuum cleaner of that ilk.

My wonderful DDD deserves a tribute at this point, along with her own DDD’s and all their respective DH’s. What am I talking about now? Well, I really have to thank my Dearest Darling Daughter for leaping into action and organising herself and my granddaughters as carers, and all of them for being willing to cooperate. I wouldn’t have been able to go ahead with the reversal otherwise. It impacts on the lives of my mother, my daughter and son-in-law, my granddaughters and their Dear Husbands, as well as on my great grand children. I wonder how many other people’s surgeries directly affect five generations of a family? All I can say is, once again, thank God for mine. I am very blessed.

I’ll be back after the event with an update, but for now I’m preparing to say goodbye to Winnie-the-Pooh.

I’m bidding adieu to Winnie-the-Pooh,
My life-saving stoma, that made me pull through;
This scheduled reversal is long overdue
And I’m happy to say that I won’t miss you.

You’ve gurgled and rumbled and burped for two years,
You’ve leaked on my undies, reduced me to tears.
You’ve pancaked and dribbled, you’ve stunk like a skunk,
Made my skin sore and red with your acidic gunk. 

So I’m saying goodbye, though I know you’re a blessing,
And I hope, when you’re gone and I’m left with a dressing,
That my idle intestine still knows what to do,
And works as it should without Winnie-the-Pooh.

A True Love Story

A beautiful and tender love story is unfolding under my nose,  a roller-coaster ride that I hope will have a happy ending.

In my facebook support group, a closed group where privacy is guaranteed, people are very upfront and open about all kinds of intimate and personal matters that they wouldn’t discuss even with close friends and family. It’s a wonderful place to let off steam and rant, seek advice or share secret worries. Most of us are complete strangers in real life, but in our group we are closer than many families.

One of our members, C, is retired but a very active man in spite of his colostomy, happily married for a very long time to a very caring and supportive wife, whom he calls “my Margaret”. Just before Christmas, he posted that  “My Margaret was rushed to A/E on Tuesday – bleeding on her brain, had surgery and now in induced coma, arms + legs active can’t say anything else until she is awake, maybe today. Please pray for her.“

Of course, there were lots of sympathetic and encouraging replies and certainly many of us have been praying, as we follow C’s regular updates on Margaret’s condition.

Over the past month I have seen how important the relationship with the group is for C and how his love for her has moved us all.

The day after her haemorrhage, he wrote:

Margaret is off the life support and breathing for herself, still lines into her brain. She can speak, all limbs are working, going to try today swallowing a vitamin drink, if she can’t the feeder tube will be put back, she is a little further down the line than the average recovery for this type.
Physio is moving her arms and legs and said she has good muscle tone and perfect lung capacity, all being good
Off to see her now.”

The next day:

“Today Margaret is improving. I stroked her forehead, asked can you feel that and she said yes, same on arm, yes, asked her to smile at me and she did. Still her eyes are closed. She has opened them only for a sec.
I am so pleased.”

Progress continued:

Margaret has started to speak, and is asking how people are. Some things are repeated and she said she had been to Beverly. This is normal at this stage. Her eyes are closed again normal, done other scans – all positive.
Kind Regards
C – Thank you for all your support – it does help.”

Then on Christmas Day:

“Margaret has a bad chest infection with high amounts of mucus, responding to antibiotics. This condition is common when drugs/long time in bed, and susceptible to germs around.
I am not as happy today, and sleep was difficult. I look at Margaret and remember her fabulous attitude to life and humour. She will get well in the end. I know it.”

Followed by:

“I am struggling today – been to Tesco. We always go on a Friday, and then for a coffee. Brings memories back.
Good news is Margaret is out of ICU and on a high dependency ward, a bit of progress.
Nurses are happy about how she is responding to the antibiotics, To me she looks poorly 
but the nurses see patients like Margaret every day, and they are happy with her.”

By this time, it seemed that every member of our group was behind C, cheering him on, sympathising, encouraging, waiting anxiously for his posts and sending healing wishes and prayers for Margaret. We know how much he has depended on her, and so when this next little post appeared just after Christmas, he was overwhelmed with advice:

“With Margaret being in hospital I will have to cook my own meals. I have just put in the oven a nice leg of lamb, I will be able to carve a few slices, cook some potatoes and veg for a filling evening meal. It is at 160c for three hours. Is this the way to cook the leg?”

His dinner turned out well, apparently, and C began to think of ways to cheer his Margaret up. He knows that looking good helps a woman to feel good, and he drew our attention to how beautifully dressed she always is on the photos on his timeline. We know that she could look like the back end of a bus, but in C’s eyes, she will always be young and beautiful. Should he take her some of her favourite jewellery into hospital, so she can wear her rings and bracelets, he asked. We all responded vehemently and dissuaded him, so he took her a pretty scarf instead. As the year was drawing to its close, he told us:

“Margaret is still stable and in and out of sleep, tired yesterday probably with the ward move. I shall ring the consultant’s secretary on Monday morning to arrange for me to have a chat with the consultant. Should be useful.
Visiting Margaret at 3pm today, hope she is not as tired.”

But the roller-coaster was still operating: On 30.12.13 C reported:

“Sorry to say Margaret was returned to the high dependency ward last night. The staff nurse said that Margaret’s symptoms are not unusual with 11/12 days post op.
Seeing Margaret again today and I will let you all know how she is going.”

We could feel his anxiety, and his attempts to soothe himself as he saw his beloved Margaret in such dire straits:

Margaret is still very drowsy, in and out of sleep. Staff nurse Helen explained that with the line into Margaret’s brain it will cause spasms and this makes the patient very drowsy. It normally does this 12 days post op and lasts up to 21 days post op.”

I’m sure the hospital staff must have felt much as we did, and did what they could to alleviate his fears:

“Now I know and understand the problem I feel much easier and I will cope better. Margaret did respond, squeezed my finger, and when I said “I do love you” she said “I know you do.” I then said “you have been very poorly” she replied “I am better now”. “Not quite” I replied.
Difficult to understand her with all the tubes and wires there.
Now the symptoms have been explained I am feeling a little better now. The support I receive is fantastic especially from B and A who visit Margaret with me alternate days.”

As New Year’s Day dawned, we remained with C on tenterhooks:

“Margaret is still stable but her responsiveness is again poor. We will have up days and down days I am sure. From the swabs taken three days ago a new antibiotic has been given intravenously to Margaret. Her consultant can only observe her and wait and see if the new antibiotics are successful.
It is so upsetting when she has a down day for me, you build your hopes up and then crash you are upset again.
Please keep praying for us.”

The news was no better on the following day, but C remained optimistic and didn’t lose his sense of humour:

“Margaret is still not responding. A sample of brain fluid has been tested and no bugs/infection found, good news. Her chest infection remains. Once that is cleared I am sure she will start to recover.
I made a large stew last night to reheat when I return from the hospital. It should last me
for three days.
I have started to use Margaret’s Smart car – it runs on fresh air. My car is a three litre, so when I travel the 65 miles to the hospital and home it will save me some money. 
I have developed a sore bum with all the bouncing around in the Smart .

Four days into the new year, there was no change:

“Margaret is remaining unresponsive, but on occasions does what you ask, like: hold my hand and squeeze,  put your tongue out.
A scan was done yesterday pm, I will be told the outcome today when I visit Margaret today. I will post you the results of the scan.”

Many members of our group have gone – and some are still going – through some horrific experiences, not only due to their own illnesses, conditions and ailments but also suffering the frustrating agony of having to watch loved ones in pain and sometimes dying. The empathy and encouragement expressed by these was truly heart-warming, and C obviously was drawing great comfort from their support.

“Margaret is not responding. She can hear and understand on occasions, but she does not speak – she nods, or shakes her head. The oxygen mask has been removed and she can breathe easily. Still has a small amount of sputum, the antibiotics are now working well. Margaret is a fan of Barry Manilow I took some CD’s and the staff found a CD player and I held it to her ear. Her favourite track is “Even now”. I played it to her and asked “Can you hear Barry?” and she nodded her head. The nurses are now singing along to Barry too. I am waiting for a time and date to meet a member of the neuro team. I have a number of questions to ask.”

But the next post was devastating:

“Yesterday I spoke with a doctor from the neuro team, He gave me news that I was dreading, He said what Margaret had is as bad as it gets, I am so sorry, all we can do now is to carry on investigating, looking for the answer, I am so sorry.
I will pray they do find a way of saving my Margaret.”

This was followed by:

“Why do consultants give you the the worst possible scenario? He told me that what Margaret had is the best it will get, and repeated I am so sorry
Yesterday all her lines were removed, leaving only the feeder. A doctor was at the side of the bed taking another fluid sample from the lumbar/spine as they had found something on the last test and they were double-checking.  A call today revealed there was air in her brain and that can bring drowsy sleepy symptoms, like with Margaret.”

C was so down, and once again our group members rallied round with prayers and words of hope. Yesterday he wrote:

“I can’t believe I am typing this post. I telephoned the hospital to ask how Margaret is, and the nurse replied she is much improved .She has been asking for someone it sounds like Carol. Carol is her best friend of 40 years, it may be her or me. Still a long way to go, but I am so pleased.”

This morning, we read his latest report:

What a day yesterday! I visited Margaret and she was sleeping because the physio had her out of bed and sat her on a chair for ten minutes.
Nurse said, “Wake her!” I did and her eyes opened and they were clear, not glazed over any more. I then said things you would say to someone who you love with all your heart, and someone you thought you were losing.
And then she spoke: “Is my car OK?”
Thanks Margaret! Her voice was husky and not
slurred, Then the nurse asked, “How long have you been married to C?” She said, “41 years”- correct. “Where do you live?” and she answered correctly.

I laid my face against hers for a few minutes. It felt so good.

Kind Regards

A very happy C.”

Happy Birthday, Winnie!

Today is my stomaversary, a joyous occasion, well worth celebrating. One year on from emergency surgery that saved my life, and the formation of my colostomy. So what if the Old Grey Mare ain’t what she used to be – I’m alive and kicking!

How best to mark the occasion? I did consider sticking a little birthday candle into my stoma, but only for a few seconds: the comic picture in my head made me smile. I would have to lie down on my back, of course, for the candle to stand upright, and I wondered if I’d have the necessary amount of breath to blow it out. There would also be the risk of my stoma spontaneously deciding to emit some gas and fulfilling the fantasy of many little boys who have attempted to light their own farts.  Oh yes, the potential for cartoons is high!Image1160

So abandoning that idea, I moved on to create a virtual candle by decorating my pouch in fitting manner, using food colouring. Food colouring seemed like a stroke of genius when I began my work of art but I rapidly discovered that it becomes indelible on the fingers and thumbs. Green fingers are, in my case today, not a metaphor but a reality. Image1156

It takes more courage than I possess to walk about openly flaunting my bag so I showed it to those closest here who I know would be amused, took a photo and shared it with those who would be amused but aren’t here. I was amused in turn by some of the reactions: it looks as though there could be a market niche for Special Occasion Ostomy Bags … with Hallowe’en and Christmas coming up, I might go into business! Any takers?

When Bad Things Happen To Good People

OWL[2]Someone on the Colostomy Association facebook page just asked:

“Why do bad things always happen to good people, and bad people get all the good things?”

I was about to join in the pity party but it suddenly struck me that maybe lots of good people are good precisely because of the bad things that happen? No pain – no gain, to quote an old cliché.

I believe I am a kinder, gentler, more empathetic person as well as being tougher, bolder, mentally and emotionally stronger, and gratefully aware of all the good and beautiful things around me since “bad” things have happened in my life. I’m not saying that I’m a good person, just that I’m better than I was.

Suffering has done me good. It makes some people bitter and resentful, understandably, and depressed. But the overwhelming impression from this group is that many of them have come through unimaginable pain and distress, and are so much richer for it. And they are so generous with their riches, so supportive and caring. Would that be the case if they hadn’t “been there, got the tee-shirt”?

I have been humbled by the genuine love expressed by these people, corresponding so closely to the definition St Paul gives in 1 Corinthians 13: 4-8:

Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.

It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
Love never fails.  

One of the most generous is a person who has had both stomach and bowel removed, but gets on with her life, spreading joy with wit and wisdom, and garnering prizes at flower shows.

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Another of the regulars on this page died recently – not unusual, as many of them are suffering from terminal illnesses such as cancer. She managed to write down her story before she died, and in fact was working on her book late on the eve of her death. This has just been released this weekend, and is available as a paperback or on KindleCancer to Coma – My Journey by Ciara O’Neill.  Proceeds go to charity.

 Shit happens, yes; but manure makes the roses grow.

 

Don’t Ostracise the Ostomates!

It sounded like the knell of doom.

Listening to the head of the surgical team telling me what to expect before I underwent the operation to remove part of my colon, I clung to the slim possibility of the two cut ends being rejoined.

A colostomy? That was a solution I didn’t want to think about. Gently but firmly he told me that this was the only option open to me.

The stoma nurse explained the practicalities of dealing with the condition, and gave me a stoma bag for my inspection. My mind was numb and I couldn’t apply this information to myself. She drew a circle in black marker pen about the size of a £2 coin on my lower left abdomen, taking care to avoid any creases and my six-pack (surprise – have I got one of those?) as a guide for the surgeon in placing the incision, and a few hours later off I went to the theatre.

I came to after surgery with a red stoma where the black circle had been. The nurses changed my bag during the first week, and then I had to learn how to do it myself. Very slow and clumsy at first, I gradually became used to the procedure so that by the time I returned home I felt more confident.

As a leaving present, I was given a goody-box containing a supply of bags, wipes, a paper template with holes of varying size, disposal bags, skin-friendly adhesive remover, deodorant air spray, and special scissors to cut the hole in the back of the bag to fit the size of the stoma: all provided free of charge by the NHS, and on repeat prescription. (In most other countries I’d have to pay for all these.)

Three cheers for the NHS (I’m becoming a fan!).

Trudi the stoma nurse came to check up on me once a week for the first few weeks, to make sure that I was coping and to give me extra tips. This was an eye-opener, as she revealed a whole catalogue of specialised products and tried out different kinds of bag on me.

In no time, the unmentionable had become a simple, unobtrusive part of my everyday life. A friend asked me if I had given mine a name – hers had been Harold – and I replied, “Yes, Winnie-the-Pooh.” Not particularly original, but a nickname makes it more acceptable, especially when it gurgles and makes raspberry noises.

Colostomy is a taboo subject – in polite company, who wants to talk about excrement? – and like most people, I had had no idea that there could be so many different kinds of stoma bag. Someone, somewhere, has a career designing these appliances, and thank God for that!

I deeply appreciate the fact that with a little trial and error, I finally found the type and shape that suits me best. They all seem to be that colour used for old ladies’ corsets, or else transparent: the latter allows you to see what is euphemistically termed “the output”, useful if there’s a problem, but, I thought, it would be nice if there could be a little variation in the opaque ones.

What about some lacy patterned ones for truly feminine clients, or jazzy, snazzy ones for the young at heart? Few people see your bag apart from yourself, but it is a tad boring for it always to be that pinky-beige, supposedly skin colour. If you are white, that is – what about black people?

And what about those intimate moments, when Winnie-the-Pooh can be rather off-putting?

A little googling in the virtual ostomate world answered my questions. Bags are changed frequently, so there is probably little point in “designer” styles. However, there are specially designed support knickers with an inside pocket for your bag, which is a practical idea, and for those whose bag is likely to be exposed there are bag covers in animal-skin prints, stoma-cap covers made to look like a dahlia or sunflower, foxy wraps in satin and lace, even thongs and crotchless panties with a discreet compartment to hide your pouch. TigerStripe3detail_IllusionWrap_Nude_frnt_1024x1024

 

It warmed my heart to see that somebody cares about those women (and men) who may be feeling embarrassed and unattractive with a scar down the middle of their tummy and a bag dangling like an askew sporran next to it.

There’s also specially designed swim- and sportswear cunningly made to hold your bag securely in place while you are active, without anyone ever dreaming that there might be an extra appendage underneath.

One of the beneficial side-effects of my own surgery was that, in addition to losing a few pints of blood (rapidly replaced) I also lost several kilos, so on my first shopping outing I bought myself a slinky black dress.

Does my bag show under it? No. My tummy has always been a bit round and it looks no rounder than before. Now, that is an incentive to keep my weight down and myself looking good! IMG_0918

Silver Linings

It’s such a long time since my last post, and I know that some of you have been wondering where I have been. The answer is simple: my diverticular disease flared up again with a vengeance, and I have been sampling the wonderful care offered by the local NHS hospital again (and this time managed to get through quite a large number of the items on the lunch and supper menus).

I use the word “wonderful” advisedly: I am in awe of the medical and nursing staff who have been my constant companions during the past weeks, and can’t praise them highly enough, not only for their attention to me but for their dedication, good humour, competence, and compassion. Watching them attend difficult or very sick patients has been a remarkable and humbling experience for me. None of them are doing it as a job just for the money, believe me!

My own case was classed as major surgery (Hartmann’s procedure, if you want the gory details, with a few extra complications to keep the surgeon on her toes) but there was no opportunity for me to feel sorry for myself. Initial pain was controlled by a morphine pump, and in fact I suffered very little pain. Moving about was awkward in the first few days due to a long seam down my middle that made bending difficult, but that has rapidly improved and soon all the clips will be out and only a scar left.

I am learning to deal with my colostomy, which ought to be reversible in 6 months or so (we’ll see) and is less of a problem than I anticipated, so all in all I think I’m making good progress. My mind is at peace, knowing that the biopsy showed no signs of any malignancy.

My two weeks in hospital seem in retrospect to have been almost like a holiday. I had an incredibly comfortable bed, with a special inflatable mattress to prevent bedsores, placed next to a huge window; I enjoyed the food, was pampered day and night, and had very congenial room mates. There was a great deal of laughter with no lack of wit and humour, and a fairly steady stream of medical students coming to interview me. It’s common knowledge that people love to talk about their operations, and I’m well aware that few topics are more boring to the listener, but here was a ready-made audience eager to hear every detail of my medical history, and to look with keen interest at my wounds. One of the teaching doctors finally admitted that I had had more than my fair share of medical students because I was an interesting case anyway and could give a coherent account of my illness.

Every cloud has a silver lining, and this one had many. Grateful thanks to my granddaughter and daughter for rallying round and taking care of my mother in the time I have been (and still am) hors de combat, and to their respective husbands for sparing them. Because they were here, my mother, obviously concerned about me, was far less stressed than she would have been and it is fantastic how well she and her great-granddaughter have bonded – a joy and privilege for both of them. And a huge thank you to everyone who prayed for me, sent “good vibes” and positive thoughts, cards and kind messages. Your love and concern are truly appreciated.