Now, nurses must be the most secretive of all people, something I both commend and dislike them for. When trying to elicit further information about my need for the scan I asked; ‘what should I tell the other hospital when I re-book the colonoscopy?’ to which she replied ‘just tell them to look at your notes, they’ll understand’. Now, I’m a genuinely calm positive-thinking person but at that moment I just felt like crying. Speaking to the nurse at the other hospital didn’t help my mood improve when she let it slip that she had 50 pages of notes on me and could she call me back in 10 minutes after she’d had time to look through them all! As it turned out, she found the notes relating to the scan and proceeded to book me in for a colonoscopy two days after the final SeHCAT scan (in fact the next possible day bearing in mind the day in between would be spent taking laxatives and sitting on the toilet). Feeling already a little unnerved she then proceeded to freak me out a whole lot more by telling me that the head gastroenterologist himself would be doing my colonoscopy which, from her tone, sounded a little unusual (but maybe I was hyper-sensitive by that point). So anyway, the scan was confirmed, the colonoscopy re-booked, I wrangled more time off from work and waited.

The appointment for the first part of the SeHCAT scan approached quickly and before I knew it I was sitting inside the ‘Nuclear Medicine’ department (surely they could have come up with a more comforting name!?!) waiting to receive the radioactive pill. The pill in question looked no more radioactive than the nurse holding it, except for the fact that she didn’t touch the pill herself (after holding it at arms length she tipped the pill out of the bottle straight into my hand) and that the bottle was marked with one of those scary black and yellow hazard warning signs (the kind of thing you’d expect to see on a visit to Chernobyl). After swallowing the pill she asked me to fast and return in three hours time but to make sure I sat outside of the reception area (I guess I was a little more radioactive than I thought!). Not being able to eat or drink anything made me a little sad when I realised that the only place I could wait was in the hospital canteen, but I headed there all the same and spent my time sitting in a corner trying to look inconspicuous.

After what felt like a lifetime later I was led into the scanning room where I was asked to sit on a stool in front an innocuous piece of equipment (thankfully I didn’t need to go into the huge doughnut shaped scanner which was slightly more terrifying). When being scanned you don’t feel anything, you don’t see anything, you don’t even need to get undressed or sit in a compromising position. All you have to do is sit still and stare at the wall in one direction for five minutes then turn around and stare at the wall in the opposite direction for another five minutes; all done. One week later I returned to complete the same procedure (minus the pill) after which I was told that the results would be sent to my consultant, and that was that.

From what I’ve read the aim of the SeHCAT scan is to assess whether I’m suffering from bile acid malabsorption. Bile acids (or bile salts) are made in the liver, travel to the small bowel where they help us digest fats and are then absorbed back into the body. For people suffering with intestinal issues such as Crohn’s the small bowel can become damaged and so is unable to reabsorb the bile acids, which in turn leads to diarrhoea. Reading that this is often linked to Crohn’s certainly didn’t fill me with joy but I can safely say that the procedure itself was one of the easiest, least invasive medical tests imaginable and for anyone undertaking it not something to worry about.

For those who don’t know what bile salt malabsorption is – please look here: Bile Salt Malabsorption Info

It’s basically very very painful and it means unless my digestive system decides to correct itself I will be on a very strict basically no fat diet for the rest of my life, and will have to take medication to go with it – to bind the bile that my body produces up to four times a day.  The better my diet, the better my digestive system and no pain!

I’ve been researching ways of eating and foods to steer clear of and have discovered the following foods are a no no as they increase the production of bile.

celery, daikon radish, garlic, horseradish, lemon, lime, watercress and high-quality dietary oils, artichokes, a high fat diet - polyunsaturated fat-rich diets

http://www.livestrong.com/article/448615-what-to-eat-to-produce-more-bile-in-the-liver/

So my main plan is to make sure I have a low in fat diet, but alsoI try to eat as well as possible because my bowel is now very sensitive since the cancer treatment and surgery.

Breakfast:

Dose 1 of my Questran drink (bile binder)

2x slices of white toast, with a very fine layer of flora light, seedless raspberry jam (I’d run out of skimmed milk so couldn’t have my usual cereal).

Muller Light Greek Style Black Cherry Yogurt (Fat Free)

Water to drink and a Options Turkish delight hot chocolate drink

Lunch:

Dose 2 of my Questran drink

Ham and gherkin sandwich (white bread)

Half a skinny poppy seed and lemon muffin from Starbucks (bought yesterday) – amazingly only 2.8g of fat for the whole muffin (2.2g per 100g) – I’m allowed 5g of fat per 100g – that’s my general rule.

Dinner:

Dose 3 of my Questran drink

Chicken breast with an incision through the middle and Heinz Sticky BBQ sauce put into the incision. Then I used a healthy unsmoked bacon rasher (Tesco healthy living) to cover the incision.  Mum and Dad had 2/3 pieces of bacon over their chicken breast.  Then squirted some more of the BBQ sauce on top of the breast and bacon.  Placed in a oven friendly dish filled the dish with some water and then added some of the bbq sauce to the water.  The water helped keep the chicken really moist.  Mum and dad had the same as me and they both commented on how moist the chicken was and how the chicken had lots of flavour.  Mum and dad could have had cheese on top of their chicken but they decided against it.  Served up with a baked potato and frozen mixed veg – contained peas, green beans, sweetcorn, peppers and carrot battons.

Once the chicken was cooked the water and bbq sauce that was still in the dish I poured into a jug, stirred it until the sauce was stirred well into the water, and then poured over the chicken just before serving.  BBQ gravy.

It was just what we needed.  Something filling and warming after getting in from the cold.  Definitely a success and a dish I’ll definitely be cooking again.  It didn’t feel like diet food and I’m sure my digestive system won’t have any complaints about it, which is a massive bonus.

Dessert/Snacks:

Muller Light Greek Style Black Cherry Yogurt (Fat Free)

Couple of spoonfuls of Waitrose Chocolate Frozen Yogurt which is 2.6g of fat per 100g – a proper treat food that I don’t really have to worry about.  It’s also one way of allowing myself a chocolate fix when I fancy some.  Finding chocolate which I can eat is a mission impossible really.  So I tend to just have a bite of a friend’s chocolate once every 2 months.

My last blog post explained how I’d been handed back some freedom and felt like I’d turned a corner. 

 So, where am I now?  Well, after a meeting with Mr Surgeon last week we had a general review of where I am and how I’m feeling.  Everything is OK.  Bloods are all OK and tumour markers are as they should be.  Nine months since my first post op CT scan and I’m still in the clear.  Next month will be the one year anniversary of when I had my first operation.  The operation where the cancer was removed along with my rectum.

 The weekend before I saw Mr Surgeon for my review I had quite an experience.  The medication was working.  Or at least it was until Friday.  I then spent most of the weekend feeling lilke I’d been dragged backwards.  I couldn’t quite put my finger on it.  Even though I wasn’t running for the toilet like I used to, I felt like someone had poured acid straight through me and my body wasn’t entertaining it.  It always seems to be a lot worse at night too.  Fun.

 I explained what was happening and went through what I’d been eating.  Not much at all if I’m honest.  The days where I noticed I was in a bad way though were generally days where I relaxed a little.  So, I might have had a bit of my mum’s (not spicy) curry (but had plenty of coconut milk in it), some olives, a baby quiche, some lovely focaccia bread.  I won’t list it all, but basically it was nice.  Oh and there were the few times I ate out…

 But on the days where I ate tofu, chicken, broccoli, noodles, rice, mushrooms, onions, garlic, alpro soya desserts, bananas, to name a few, I was OK.

 Mr Surgeon confirmed what I had been thinking, after a little internet research.  I’ll be OK and the medication will do its job if I don’t eat a high fat diet.  The more fat I eat the more bile I produce, which means I then have to get rid of it, via the toilet.  Which hurts like hell.

 Part of me is OK with it.  It’s one of those things.  I’ll adapt.  Someone said to me the other day “small price to pay” – I wondered why I flinched a little at that comment.  Why it kept bothering me.  It does bother me though.  It bothers me because I have another reminder of when I had bowel cancer.   Mr Surgeon can’t say how long I will have to live like this.  It could be for life.  My Oncologist has written a letter to me basically telling me she did everything she could during radiotherapy to prevent any damage (a possible cause) and hopes it’ll improve over time.  Mr Surgeon said it could possibly be from everything that happened during and after surgery.  We’ll never know, but between the three of us we’ve ended up leaving me feeling very different about food.  In some ways I’m scared of it now.  I’m scared of what it’ll do to me.  I’m scared it’ll cause cancer and then I’m scared it’ll cause bile which I’ll have to then deal with.  The foods I should be eating to keep cancer away are now foods that don’t agree with me.  That in itself is a complete and utter mind f*ck – excuse my language, but this subject makes me sweary.

 I can handle it when it’s just me.  Cooking for myself.  That’s easy.  I’ll eat what works.  I’ll just drool over the things I can’t have, or if I’m feeling brave and don’t mind being up all night I’ll have a couple of mouthfuls.  It’s when I’m around other people.  It’s like being with someone on a diet, a strict diet, that isn’t willing to have that “naughty” moment.  Frustrating for everyone.  Especially in restaurants.  My mother is high up on the list of people to avoid at the moment, especially about my latest diet discovery.  I’m often met with the following:

 “Do you think you’ll ever eat with us again?”

Yes, I’d love to.  Unfortunately you don’t seem to like cooking food from scratch and eating plenty of veg.

 “Do you want some cake, oh sorry, you’re on that weirdo diet again”

It’s not a diet. Through choice.

 “I bought you an Easter egg”

Well, I’ll pass it on to someone who can eat it.

 “You were ill again in the night.  You woke me up”

So sorry.

 “Do you think you should speak to someone who knows more about your stomach problems”

Oh that’s right, my BOWEL surgeon hasn’t got a clue…

 “I guess this is a great excuse for you to lose weight”

I don’t even respond to that. 

 I’m very aware I’ve just entered rant mode.  I know I am incredibly lucky to be in the position I am.  They got rid of my cancer.  I can get on with things.  I am though, a bit cross.  It’s a big shift in lifestyle and at times frustrating.  If I’m honest, I’m just really sick of having to think about food and what it does to me.  I’d love nothing more than to read a menu or even a recipe and not dissect it to pieces and put it in my “if only” file. 

 So, that’s where I am.  On the verge of entering a dangerously obsessive frame of mind over food.

After I hit publish on Saturday I went to  bed. The next day I woke up and spent the next 24 hours feeling awful.  I didn’t leave the bathroom much and cried pretty much all day.  The four day work week I had planned wasn’t looking doable and I’d decided to not bother with any new foods as I had had enough.  I was still thinking about not eating at all.

Things did calm down though and I managed to get to work.  I even managed a meeting at New Scotland Yard – somewhere I don’t know the layout of and was having visions of never finding a loo if I needed it.  Even with things calmer though, my brain wasn’t feeling as calm.  There’s been real low points, which is to be expected with any illness and recovery.  What amazes me though is how it comes and goes without any real warning.  A big black cloud parked on top of my head at the beginning of this week and I’m not sure if it’s leaving anytime soon.  The symptoms I experience now are in some ways worse than the symptoms I had before diagnosis and even during treatment.  This is hard to swallow at times.  At times I’ve wished I’d not bothered with surgery.  I sometimes wish I’d not bothered with treatment full stop.  Mr Surgeon understands the frustration though.  He saw just how frustrated I was today when he commented on how well I look. I told him people tell me that a lot lately, which is nice to hear, but I don’t feel well.  Sometimes I wish I looked how I feel, just so people would get it.

So today I saw Mr Surgeon.  He wanted to have a chat about the scans I’ve had recently.  A SeHCAT scan – general description here and a small bowel meal x ray too – which is this.  If I’m honest, I was expecting to be told “Scans are all OK – it’s diet and time that will sort this out”.  Honestly, if I had heard those words I think I would have knocked Mr Surgeon out.  Because I’ve had enough.

Hearing “You have a bile salt malabsorption” was like being told I’ve won the lottery.  We both grinned.  Because finally, we had a reason.  Mr Surgeon was horrified at the caveman diet I’m existing on.  He wants me well and he wants me living a full life.  So do I.  He wants me eating my veggies too.

Mr Surgeon wants to speak to my Oncologist and why this has happened.  It could be because of radiotherapy or it could be due to the surgery I had.  I’m not really surprised.

I’ve been prescribed some medication which fingers crossed sorts me out.  My body isn’t disposing of bile like the body should.  Instead it’s being taken into the large bowel and I’m getting rid of bile by going to the toilet.  It hurts.  You know when you’re sick and you get to the point of only puking bile?  It stings doesn’t it?  It makes your teeth feel funny.  It feels like chemicals.  Well imagine how it feels to pass bile through your backside.  There are often tears.

So, fingers crossed this magic glue like drink that I have to have four times a day will sort things out.  If it works it means I might not have to live in my bedroom forever.  I might be able to go to work and and go out to site without being worried about where the nearest toilet it.  I might get my life back.  I might be allowed to eat some food I actually like.  And GASP! I might be able to socialise.

It’s not going to work overnight, but I should see a difference in about 3 weeks.  Which would be just lovely because I have my birthday in April.

Maybe with this special drink and being a bit careful with foods, things might be about to change (I’m tempting fate again aren’t I? Maybe I should delete the blog…)

I might even be allowed some dairy.  I’m not ready to be THAT trendy.