Hey Leonie, it’s your birthday...

We had such a lovely weekend, on Saturday we drove down to Gosport again to see our brand new grandson Zachary. This time Ben, our youngest son and his girlfriend Kaitlyn came too. 

It’s not a quick journey, anything involving using the M25 is a crap shoot of journey time.  

Thankfully it only took 3 hours to get there. Totally worth the drive though. Baby Zak is getting on well and so too are Sam and Milly.  

Any journey away from home comforts, no matter how long can be daunting. I only have to remember that it was only a couple of weeks ago that I had only reached Chelmsford station that I realised my bag had leaked, and that journey was only about 25 minutes. It’s left me a little nervous, not anxious yet but certainly cautious.  

All I can do is hope for the best but prepare for the worse. The day my bag leaked at the station I only had 1 spare bag with me, which I had to change into, leaving me with no spares and no second (third) chances. What sort of masochist only takes one spare bag?!? Leasson learnt I have in my possession 4 spare bags in my hand bag at all times now, there’s no way I’d need 4, but who really wants to play poo roulette, not me that’s for sure!

For the trip down south to see Zak I wanted to be super comfy and casual. We were going for a walk along the sea front and to a cafe, no need to go all dolled up.  

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Top from Jack Wills, Leggings from Next, Shoes from Yeezy.

I bought this top the other day, it’s so cute with its classic stripes and bowed cuffs...it’s great till you try and put a coat on, I ended up looking like Popeye with the bows bulging up the sleeves.  :)  

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The journey was fine with no misphaps, and these leggings although tight are actually very good for poo room....and at the end of that long drive is beautiful baby Zak. 

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We like to wear stripes, ok, so it’s another coincidence but I like to think he wants to dress similarly.  hahahahaha 

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Oh my Lordy, look at that boy! My heart melts just looking at him.  

It was such a lovely visit and it was Ben’s first time meeting his nephew Zak.  

Ben isn’t very experienced with babies, and until quite recently I’d say he was nigh on phobic of them, but he took to him like a duck to water, apart from when Zak sneezed and scared the living day lights out of him...oh Ben, a sneeze?...seriously, expulsions from babies get way scarier than sneezes! Hahahahaha 

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Reading A-B to Jay Z, starting his rap education young. Hahahahaha  

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Kaitlyn having some Zak squashing time.  

We had a great but brief visit, before we headed off home for a very important party.  

We had to get back for Ben’s friend Leonie’s 21st. Ben and Len have been friends since they were 11, when they met at high school. Chris and I adore her, Ben has been blessed with incredible friends, they’re good people, not surprising as he’s a great person too. You get back what you put out into this world. 

Knowing that Len was getting all dolled up I knew I had to dress to impress...not easy when you’re an old lady compared to all these glorious 20 year olds.  :O

Knowing that Len was getting all dolled up I knew I had to dress to impress...not easy when you’re an old lady compared to all these glorious 20 year olds.  :O

One tries one’s best. Hahahahaha. Have you seen girls these days, not only are they all experts in flawless make up they all know how to pose and pout at the right angles and in the right lighting for great photographs. To say I’m jealous is an understatement. All we had when growing up was “say cheese!”. Hahahahahah 

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Top from The White Company, leather look Skirt from Marks and Spencer, Shoes from Rockstuds, Valentino.  

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Happy birthday Len, love from your Fake Fam.  

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Leonie had a fabulous time. And even though she was entitled to cry, being that it was her party and all she actually didn’t. ;)  

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The last 3 years Leonie has battled on at uni, in the beginning I really thought she’d throw in the towel, she was so miserable there, but she just kept at it. She never really settled, a misplaced lack of confidence in her abilities and chronic homesickness was a huge part of the problem. It’s not to be underestimated how debilitating homesickness can be.  

I am so impressed by her tenacity, that she just kept going and in the next few months she’ll be taking her final exams and passing her degree.

Len wants Chris and I to go up to Nottingham for her graduation, she said she understood if Chris can’t get the time off work but reckons I’ve got no excuse because I don’t have a job. I think she’s forgetting I do work an hour a week for Neptune in Colchester! Hahahahaha 

No one but Len herself can take credit for her up coming degree. She’s been amazing, I hope she’s as rightfully proud of herself as she should be. She is lucky as she has a great mum and dad and other family who have been amazingly supportive. And she has a fake set of family that’s equally proud of her too. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Today I’ve had a little trek up to London again, I’ve got to be honest I was nervous, although I’m body confident and a very happy ostomite I still have nerves on occasion, and the last time I came up to Queen Mary’s university for a meeting my bag leaked. It’s silly to think just because I’m going there that it would happen again (I mean I’ve been to London since then without an issue) but I was was worried, my mind anchoring to the horror of struggling to change my bag in the tiniest toilet cubicle in the world,  Needlessly so as it turns out. No leaks today mum!

Thank god, it’s funny though, leakages were still in the back of my mind even though it didn’t happen.  Most issues for me with having a stoma are psychological rather than physical. For me personally I fret about what ifs. What if it leaks, what if it makes fart noise etc.

I have never worried about what if it shows through my clothes. I mean, I really don’t want it to show, who on earth would, I will take steps to avoid it showing but quite honestly anyone staring at me to such a degree that they can see my stoma bag through my clothes needs help far more than I ever will. Hahahahaha And let’s face it, I post enough photos of me in a bikini that I think it’s clear I’m not worried about the visible side of colostomy-ing but just for neatness sake, when clothed I’d very much like to keep the bag from being an actual accessory. 

On the subject of annoying bag life issues, I’m fully aware that a lot of people suffer terrible skin irritations and leaks, I’m really lucky because although it happens, it’s very infrequently for me. But I do have absolute sympathy for anyone struggling with it, it is rotten, and feels like a never ending cycle. Someone at the meeting mentioned a steroid based cream that can clear severe irritation in a few days but it stings like hell. Not sure what’s worse really, but might be worth enquiring with your stoma nurse or a doctor about it. 

I can’t say too much about today’s focus group, as it’s all bound by confidentiality agreements. But I will say it lifted my spirits to think there’re people out there developing new and exciting technology for ostomites and future ostomites. I came out of there buzzing.

I explained the things that I would love to see in production. 1, I’d like quieter plastic for the bags to be made of, I hate the crinkling noise when I move. It’s like constantly being followed by someone rustling a carrier bag, it drives me insane. I can hear it when I move, I find it aggravating, but I also find it’s a great disadvantage for sneaking up on people, as childish as it may seem I like to jump out on people, and now with this crinkling plastic, early warning system it’s very difficult!

I also requested that the sticky pad be made much larger, keeping the bags the same size but extra adhesive area would buy me time when my bag has pancaked, you can use extenders (those little half moon sticky pads) but it would be better if the sticky pad itself was bigger, therefore extending the time I have to change the bag. Someone else asked for empty-able bags to have a softer plastic where it opens from because as it stands it makes constant little cuts and scratches on the top of your leg where it touches. I know this to be true as I wear ileostomy bags even though I have a colostomy, I don’t like closed bags as they make me feel trapped and claustrophobic. I will wait with bated breath to see what happens. 

 If anyone with an IBD or stoma is interested in development of stoma devices, medical research or any other bowel related research I would urge you to follow Bowel & Cancer Research UK and look out for any focus groups that might be of interest.  

Today’s group was fascinating, It was really nice to meet other people with stomas. This may surprise you but I don’t know anyone in real life with an ostomy. I don’t belong to any form of support groups or any stoma related forums. I’m a lone wolf of stoma-ing hahahahaha. 

I count my blessings that I have a fairly well behaved colostomy. Some people are dealing with far trickier stomas than mine, it really brings it home how lucky I am with my little pink blob.

As the saying goes “if everyone threw their problems in the air, you’d be glad you caught your own!”

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