Feeling mauve - colour my mood.

Lilac - Syringa vulgaris © GAP Photos.
How could anyone feel mauve with the scent of lilac in the air.

It would seem I have been feeling a ‘little lilac’ for about 3 years now. It’s not the ‘mean reds’ or the ‘blues’ or even a ‘deep purple’ just a hazy mauve.

Since we have moved here from the West End things have gone from bad to well just about the same really!

Yes, we managed to get a mortgage to purchase this flat from the Belle Mere and yes we managed to get Erbie into the school we were happy for him to go to, but boy a lot of other stuff has happened, mainly involving The GR’s family - yet again.

Having decided to wipe the slate clean and start afresh with no family interference quite the opposite has happened. The grandfather split with his second wife and moved back to the UK. The prodigal brother got the big C and moved back in with the Belle Mere. Everything looked as if it was about to implode but it hasn’t. It has just continued. A visa, a wedding, a birth, a Christmas, a birthday or seven, all have been and gone and are coming round again (well not the birth, he’s going to be one - the prodigal son is the father). All with an underscore of very noisy and intrusive daily building works going on next door. Of course it is sod’s law, that as soon as we get our own place, somewhere we really need to relax and escape it would be destroyed at such close quarters.

I’ve been seriously questioning our luck attraction, and finding it hard to stay positive when there seems to be so much negativity around. I found myself saying:
‘I wish I wasn’t so tired and ill all the time’ the other day instead of:
 ‘I wish I was healthy and full of energy’.

I’ve just reread my old post about the clinical trial I did and how well I was, I remember vaguely feeling well, slim, fit and happy - ha! I haven’t exercised in 3 years and it shows, on the scales and in my clothes. My posture is appalling and my skin is constantly spotty, (ironically the mums at the school gates keep asking me if we’ll be having a second child, not because I’m fat, because of the outbreaks, I must look young enough to conceive|) double ha!

I know that positive thinking really works, it got me a garden. It’s just hard sometimes to focus when its the end of June and my feet are freezing cold and I’m feeling a bit, um well, mauve.

Anyway moan over, it helps to get stuff off my chest once in a while and it has been a while.

Now I shall go and make a cake. On second thoughts perhaps I’ll go and drink a bottle of water and do some exercise. Ha ha ha.

Toilets in Central London - Living with ulcerative colitis

[N.B: For W1 toilet locations - scroll to the bottom!]

Reading Jennifer Killicks’ piece in the Guardian this Summer prompted me to write about my own experience of living with colitis, probably one of the least talked about (amongst the most common) chronic conditions, due to it’s embarrassing and painful symptoms. I have a confession to make (that’s how it feels) I’ve been living with colitis for 20 years. 24 if I count the 4 years undiagnosed.

It all started after one of those crazy youthful Summer’s of Love that I expect most 20 somethings experience in varying degrees. Sadly mine was followed by a Winter of Discontent, after I found out my long-term boyfriend was sleeping with my best friend.

It’s rather shocking seeing bright red blood in the toilet bowl when you know you haven’t got your period, so I went to the doctor. Stool samples were duly sent off and came back negative so I was sent on my way. I stopped crying out every time I got one of the stabbing pains in my groin. I went through a break-up. I met The GR. I fell madly in love. Falling madly in love helped – a lot, my symptoms disappeared. We had 6 blissful weeks then a lot of bad stuff happened (which maybe I’ll share one day). I took Prozac for a couple of weeks. I moved in with The GR. The bleeding started up again.

Another unpleasant side effect of having rotten guts is having rotten breath. I was exhausted, constantly had a cold as my immune system was beating itself up and my skin was ravaged. At the time (my late 20’s) I worked hard and partied harder. I constantly felt dehydrated – the back of my mouth dry but put it down to not leading a particularly healthy lifestyle. I went to another doctor. I remember him saying: Now what is we can do for you?’ A little more ‘au fait’ with the lingo myself this time I replied: ‘There is blood in my stools.’ And him being the first person to acknowledge there may be something wrong by saying: ‘Oh that’s not good. Let’s get you to a specialist and find out what’s going on.”

She (the specialist) was lovely.

Specialist: ‘Do you get stabbing pains, like someone is pinching you on the inside?’

Westendmum: ‘Yes.’

Specialist: ‘When you have to go. Do you HAVE to go?’

Westendmum: ‘Yes’

Specialist: ‘Has anything stressful happened to you lately?

Westendmum: ‘My mum died.’

Specialist: ‘Oh your poor thing.’

Then I had my first colonoscopy. Someone holds your hand. They give you a sedative. A camera is inserted up your bottom, what you can’t do with fibre optics these days! There was a monitor above the bed which displayed what the camera could see.

Specialist: ‘Look, and then you’ll understand.’ (she really was very good). ‘This is healthy gut.’

I opened one eye, cripes there I was, inside-out on telly, all red and shiny.

Then. 'And this is one of the ulcers'. Euew, coldsores on the inside is how I’d describe it. Basically ulcerative colitis (notice I’m not giving you capital letters damn disease) is when your body over reacts and starts attacking itself, devouring the stomach lining leading to the production of lots of painful ulcers. And as happens with an allergy, your body produces lots of mucus to counteract the attack, which to put it politely is very slippery stuff.

Finally diagnosed I was prescribed a course of steroid suppositories, I put on some weight but they worked. I was symptom free for a wonderful and stress-free (it does make a difference) year.

That was 2005.

Since then I have done several clinical trials at the UCH one of them that worked for me was diet-based. I was tested for food intolerance and was flagged for yeast and eggs (I blogged about it here). My symptoms cleared quite well with extreme management on my part and again a stress-free time.

The new drugs don't work for me, in fact they seem to have an adverse effect. Sadly the company that made steroid suppositories does not make them anymore and as I only have about 30cm affected at the end of my colon the doctor is adverse to giving oral steroids.

I have found ways to cope over the years. If I am working I don't eat - anything and only drink black tea or water, no sugar or milk.

Erbie has never known me any other way and as up until recently he insisted on coming to the bathroom with me every morning knows me very much this way!

I recently came across the LO FODMAP diet which rang true for me. While I was pregnant and working I used to have a cup of tea with milk around 4pm, I rarely made the 15 minute walk home at 5.30pm without having to make a dash for a public lavatory.

I could tell you the location of all the accessible public lavatories in central London - in fact I will, this might make a good app.!

W1 Toilets
Marble Arch area.
Edgware Road - MacDonald's - downstairs.
Oxford Street - Mothercare - downstairs
Oxford Street - Marks & Spencers - downstairs
Oxford Street - Selfridges - basement

Oxford Circus area
Libertys - basement
Marks & Spencers - basement
John Lewis - up the back stairs

Trafalgar Square
National Portrait Gallery - basement

Bloomsbury
The British Museum - ground floor beside the shop.

Goodge Street
The Fitzrovia Tavern

Tottenham Court Road
Costa Coffee

Bedford Square
The Dog and Trumpet - basement

Clinical Trial week 12

I went back to the hospital today to for week 12 of my clinical diet trial.

I could have kissed her, it's made such a difference. She told me she had had mixed results but mainly positive, but they have stopped her funding, and she had only put 18 patients on the trial when she needs to have 100 for statistical purposes. With the new financial year and the credit crunch there is no longer the funding for the intolerance testing at the beginning of the trial. Ridiculous as the amount of money that could be saved on medicine if it proves relevant would far out way the test. I am on the trial for another 12 weeks. When I think of all the steroids and intrusive endoscopies, colonoscopies, and medication I've taken over the past 16 years, that perhaps could have been avoided, well, you work it out. Of course, there may be other factors, not speaking to Belle Mere makes my life less stressful, which could be a factor, and I've cut out a lot of dairy aswell as the yeast and egg white I'm reportedly intolerant to. But hey ho, for now I am happy and symptom free, I can wear white again and don't need to know where the nearest loo is. I'm even going to stay with friends for a couple of days without fear of embarrasing morning or midnight rushes to the bathroom every five minute. Bliss. My Bristol Stool Form Chart register is back on 5 for the first time in years!

Diet trial part III

My condition has improved, but I don’t know if it is the special diet (yeast and egg white free), or that I have also switched from milk in my hot beverages to soya, that I am drinking Actimel daily or that we have cut off the Belle Mere, and all the stress that used to include.

I didn’t fully take in when I signed up for the hospital diet trial that it was for 24weeks or if I did, my brain may have taken it to mean 24 days. 24 weeks is ages. Oh well I don’t really miss bread anymore and I’m managing without wine (one can and does slip occasionally), but I would like a nice Satdee cake.

I have to say, cynical as I was at the outset I have noticed a difference. Of course it could just be the iron tablets I’ve been taking over the past week, anyone with a normal functioning bowel will tell you of their stopping side effect.

Even if I don’t know what's making me better, I'll just keep doing what I’m doing.

Diet Trial PART 2

My tests came back with intolerances to yeast and egg white, so I am to avoid both for 4 weeks starting from the 15th June. The dietian said most people had difficulty with the wine – wine, what wine, well wine is fermented so has yeast, what, and beer, yes, and try to avoid all vitamin B, and of course Marmite – AAARRRGH. But it’s only for a month – I signed the form. I get the sensible information; try to eat 3 meals a day, exercise 3 times a day and for my body weight drink 2 litres of water daily.

I also get two pamphlets.
Yeast Free Diet :
No bread full stop, there is a handy recipe for soda bread and scones. No food made with bread – sausages, breadcrumbs, fishfingers. No cheese with rind, Camembert, Gruyere etc. No wine, beer, cider, lager, apparently vodka is ok? No buttermilk, soured milk or cream. No grapes, plums, or over ripe fruit. No soy sauce, Worcester sauce, pickles, vinegar, mayonnaise. What can I eat exactly? The list contains such delights as: Ryvita, Matzos, Oatcakes, rice cakes. YUM! I can feel my mouth getting dryer as I type.

How to avoid eggs :
No fresh pasta, egg noodles, egg fried rice, biscuits, shortbread, ice-cream, custard, ALL cake, nougat, chocolate containing lecithin and Horlicks. They provide a recipe for egg replacer – sounds yummy: 1 tsp baking powder, ½ tsp baking soda, 2 tbsps flour, 3 tbsps water. I mean would anyone actually do that.
So I begin. On day one and two I am at a complete loss as to what to have for breakfast, and end up eating strawberries and cream, which whoops, having typed up this, realise I should have read the yeast one properly, and avoided the cream. Someone suggested yogurt, so day three I eat a big tub, this morning I resorted to cold curry. If I was at least a little organised I’d be making lovely healthy dishes of tuna salad dressed with lemon and oil, cooking up snacks of asparagus wrapped in pancetta. I seem to have unwittingly been thrust onto Atkins, which means the last of the baby weight has come off, all my old underwear fits as do my clothes, and I even got on the waist cincher belt I bought in a fit of pique when I was 8 months pregnant.
All this is well and good and there is, I have to say, a slight improvement on the symptoms side, but I am sceptical as I had a whole year symptom free when I lived in France, and I subsided on wine and bread and very ripe cheese.
I can’t tell you how many times I’ve reached for bread but resisted and this week the only rosé coloured liquid to pass my lips was one vodka based Cosmopolitan.
But it is my intention to do better. Instructed to build up to strict following on the last 2 weeks, I may slip in a pizza today then really plan some menus and be good.

Diet trial

I’ve started a diet trial with UCH.

It’s to see if allergens provide any bearing on IBS symptoms.

It kicked off with an 8.30am appointment, after a 12 hour fast to test for lactose intolerance, this involved drinking a dusty liquid from a disposable beaker and then breathing into a breathaliser every half hour and noting down the readings until midday, as I live nearby the kindly researcher let me leave with the machine.

Also a blood test.

Note to anyone who has to have a blood test at a hospital, they send everyone in the morning, you wait in a packed waiting room, you take a number and watch the counter board clicks slowly higher, people cough. Or you leave and come back around midday when the waiting room is empty and 5 nurses are waiting around to take blood, you're in and out in 5 minutes.

I had Erbie with me this time and I am very squeamish, he was strapped to my front and looked intently on as I looked intently away, I wasn’t the only one giving blood in the room, it wasn’t easy. Anyway, touch wood, they never seem to have trouble finding a vein.

I also got given a chart to fill in. Everything that passes my lips to be written down and any symptoms noted.

And oh joy of joys The Bristol Stool Form Chart.

Anyone squeamish reading here, scroll no further. Men seem to love this chart. The GR was so excited he downloaded it and emailed it off to most of his buddies who also eagerly emailed back with desired information.

Urgh. I go back on the 15th to get a specially tailored diet, which should be good as although The GR seems to think we have a healthy diet, pizza, chocolate eclairs, full english breakfasts, pitta and houmous - probably is not.