Wednesday, 30 December 2015

Bye Bye 2015!

Hey everyone!

The last couple of months have been pretty stressful. With so much going all at once, it's been easy to get myself down, but with 2015 drawing to a close I thought it would be nice to look back at my Top 10 highlights of the year.

1. Launched new Chroma products!
2015 has been a crazy year for Chroma & one of my favourite parts has been the release of new products. It started off with the release of A5 spiral books back in January & in the last couple months I've released A4 notebooks, personalised pens & pencil cases. It is crazy to think how much the brand has grown in just 12 months and makes me so super excited for 2016.



2.  Signed a lease to rent a house in Cardiff.
Now this didn't end up going to plan BUT the very signing off the house was a pretty big deal for me. Having been poorly on and off for so long I have gotten very used to the comfort and security of home & living with my Mum and Dad. I don't like being outside my comfort zone and the thought of moving out scared me half to death but I stuck to my decision & signed for a house in Cardiff. Although my knee has been a huge set back, January 2016 I'm determined to make the move. Finally.



3. My wonderful friends have been doing amazing
2015 has been a year of change for change amongst my friendship group & we are all doing pretty good. We are moving all around the country (world), starting exciting new jobs & couples are moving in together. We all seem to be really growing up & I am so so proud of everyone.



4. The first moments of 2015
New Year's Day & the celebration the night before was without a doubt the best New Years I have ever had. One of my closest friends Zoe came back to surprise everyone after months of travelling and I was in on the secret. It was so brilliant to see everyone's faces when I turned up with her. The whole night was so much fun & one of the happiest evenings with my best and oldest friends.



5. Full time Chroma.
Making the decision to turn Chroma in to my full time job was a pretty scary leap of faith but is something I am pretty proud of. Less than a year after launching the brand I couldn't have imagined I would be making enough money to leave my part time job. When I move to Cardiff I will have to do something to supplement my income but it is all heading in the right direction.



6. Becky came back!
My gorgeous friend, Becky, came back to the UK for a months holiday a few weeks ago. I've had a pretty shitty couple months and her coming back has massively lifted my spirits. In the 13 years I've known her, she has always been so supportive & she never fails to put a smile on my face. It is amazing that you can go so long without seeing someone and it be completely normal when you do. She may be leaving again in a couple days but she has given me the boost I really needed.



7. Turning 24.
I love even numbers & two is my favourite. 2 x 2 = 4, making 24 just the best number and subsequently age ever! I also had a really lovely weekend celebrating with friends & family, including the best birthday lunch with Mum & Dad.



8. My cousins wedding
This year the first of all us cousins got married. It was a beautiful, happy day & so much fun even though I was on crutches with two swollen knees.



9. Coppafeel!
Volunteering for Coppafeel! at a festival was one of the high points of my Summer. Helping such an amazing cause & having the best time doing it was so cool. Dressing up as a boob and competing in a limbo competition was surreal & brilliant in equal measures.



10. Working with amazing brands, press & bloggers
Chroma has allowed me to work with some amazing people & brands. From American Airlines & Schuh to Estee Lauder & Coppafeel!, it's been crazy. Chroma has been featured in Glamour.com, Stylist, Tatler & The Telegraph Online & mentioned by the likes of Sprinkle of Glitter, The Saccone-Joly's & In The Frow; some of the biggest bloggers/vloggers in the world. So much has been crammed into 2015, who knows what the next year could bring.



Maybe 2015 hasn't been so bad after all... here is to 2016!

xxx







Tuesday, 27 October 2015

Bye Bye Bread

Hi everyone!

So, as I mentioned at the end of my last post, after months of waiting for medical help / diagnosis & finding out that it was all linked to having Crohn's Disease anyway, I decided to take matters in to my own hands and do my own research.

I know we are always told not to Google our symptoms, but since diagnosis I always have done and unfortunately have rarely been wrong. The control freak in me needs to know where I stand, all the possibilities and all the details. I have pretty much always been correct in what I think is happening, the treatment I will have or what I think the Drs will say, maybe I missed my calling in life!

After Googling arthritis due to Crohn's Disease & trawling through my trusty Crohn's Forum for advice, a few things stuck out. Lots of people noted that lifestyle and diet had helped their arthritis. Now diet has never been proven to effect/cause/cure Crohn's Disease directly, but many believe diet can effect inflammation. My joints have been inflamed for months & in fact everything "wrong" with me, comes in some form of inflammation; eczema, asthma, Crohn's Disease, arthritis. I am basically just one big inflamed thing. After much advice, positive stories & studies I decided to take on board some suggestions. For two weeks now I have been Gluten free and taking fish oil supplement every day (with bread, pizza & pasta being my favourite things, this hasn't been easy). I am trying to eat a much more Mediterranean / anti inflammatory diet. From what I have read, some have found it changed their lives, others have said it made no difference at all. I have never been one to believe or jump on to every new study/diet/fad but at this point, I haven't got anything to lose...

Amazingly, since I started this revamp two weeks ago, the swelling and consequently stiffness in my knees has gone down by about 90%. I am in a lot less pain & able to actually walk upstairs properly for the first time in a long, long time! Coincidence? After three and half months I would be surprised, although it does feel too good to be true. You might be able to control pain with your mind but you can't make your legs swell up to double their size.
I have also been having Epsom salt baths, massaging both knees, using moist heat with wheat bags & gently trying to get my normal range of movement back. Now the change in my symptoms could be down to any of these things or a combination of a few, I don't know.

What does feel really good is to have a little bit of control back or at least feel as if I do. For eight years I have been at the mercy of the disease, never knowing when I am going to be poorly. For most of this I have also been relying on my Dr's to keep me well, diagnose what is wrong & decide my medication. I am already on two quite harsh drugs and the thought of pumping another medication in to my body doesn't fill me with joy. If lifestyle & food can make enough of a difference to keep me from having to take more tablets, I am all for it. It won't cure me, there is no cure. But it may be able to make things a little bit better & it is something that is 100% down to me.

In the mean time, I finally had my appointment with the Ortho & Trauma Dr who was great. I filled him in on everything & what I thought was going on, after which he agreed with what I had said. I had some bloods taken looking for different things than my usual Crohn's blood tests & have been referred to the Rheumatologist who specialises in arthritis. Now the wait to see him begins which could be anything up to 18 weeks. I have an appointment back with the Ortho man at the end of January, to make sure things are progressing in the right direction, which I guess is a positive and should stop me from falling through the gaps & ending up with no treatment or help. Until then it's a sit and wait situation but at least I am able to get around much more easily, am not in awful pain & can start to work out when I'll be moving to Cardiff & getting my life back to normal!!

The only way is up after all.
XXX



*Please note, I am not a Dr & don't advise anyone to do what I do without seeking medical advice or help! 

Monday, 19 October 2015

A sorry state of affairs

Hi Guys,

So the last couple of weeks have been a bit mad. I had my cousins wedding mid September, which was so so amazing. Initially I was determined not to wear my bright blue knee brace, but in the end decided to opt for safety rather than vanity. I had one crutch throughout the day and managed to stay pretty much on my feet. I sat down a lot throughout the reception, as both my knees started to swell up & my muscles were aching but I did manage to dance, briefly, just moving my arms. The whole day was really beautiful and it was so nice to get out of Newbury for a couple of days.



The 4th of October was my 24th Birthday! By this point I had planned to already be living in Cardiff so it wasn't the exact weekend I had in mind a couple months back, but it was still a really brilliant birthday. On the Friday before hand I went out for some drinks with friends, it was pretty quiet but so lovely to see everyone who came. It was the first time I had been out in ages and I even risked it with no crutch or leg brace... Probably not the best idea but nothing too awful happened!
On the Saturday I went to Bath with my parents to visit my brother, Dan, who started Uni there in September.  On the Sunday (my actual birthday) I woke up to pink balloons decorating the lounge & some of the best presents! I even had a card from Toby!... Two of my best friends are currently on the other side of the world, which can be pretty tough, but they had remembered and had a card sent in time, which is pretty amazing of them and really, really made me smile. I went out for lunch with Mum and Dad before a bit of shopping with Mum. It was quite a chilled out day but perfect!



Through out this time my knees haven't really improved, I have good and bad days. Sometimes I am able to walk without crutches and there is minimal swelling, at this point I always think it must be getting better. The next week, the knee swells up so much I can't bend it and becomes so painful. What has been really strange, is my 'good' knee has often been worse than the 'bad' one. I've been soldiering on, counting down to my ortho appointment to discuss my MRI, waiting to find out what I have actually done.
Three months on from the yoga class I received a letter saying that my appointment had been cancelled and pushed back by another 2 weeks to the 29th of October. It is safe to say I had a bit of a melt down. I have been unable to work properly, walk Toby, drive or move to Cardiff & the thought of any more time not knowing what was wrong panicked me a little. I spoke to an ortho receptionist who I have to say was unbelievably rude & failed to help at all, she even disconnected the call when I asked to speak to someone else. After a good cry I rung PALS, hoping they might be able to help. Cutting a long story short, a couple days later I received the good news that the appointment had been bought back forward by a week, to the 22nd. Not ideal, but a definite improvement!

In the mean time, I also rung my GP, mainly to get more pain killers but also to touch base & to check whether she had access to my MRI results, as I still didn't know what I had done. She hadn't been sent the results (the new way of doing things) but was able to look it up for me. The scan revealed that, I had done no damage to any tendon/ligament etc and my joint was perfectly healthy. Safe to say I was confused. For 3 months I had been told by multiple people that they thought my meniscus had been torn. Although it has not been formally diagnosed yet, it is thought that my knee pain is actually an arthritic reaction linked to my Crohn's...

Yup. Three months of pain, sitting on waiting list after waiting list, being seen my so many different people & it turns out to be something completely different to what they thought. I had a bit of a wobble when I found out, the whole process has been exhausting and so frustrating, I couldn't really believe it.
I'm still not sure what the outcome is going to be but from what I understand, the yoga will have weakened and irritated my knee joints & my body reacted badly causing an arthritis flare. Normally, this is associated with active Crohn's, however, I am currently not experiencing a Crohn's flare and my bloods are normal. Aha this is where it gets interesting! This form of arthritis, although caused/linked to the Crohn's Disease can apparently go un noticed on bloods but also flare and react independently to the Crohn's. Brilliant news all round.

I am yet to know anything about treatment or when I will have any of it sorted. It is, however, looking like something I will have to manage and deal with, like the Crohn's, for the rest of my life. Fab. This revelation, does however, explain a lot. Why both knees were bad & why it goes in waves of severity, with one minute fine and the next awful. It is thought that I will be referred from ortho to rheomatology, to sort this all out. Who knows how long that will take but at least we are now (fingers crossed) heading in the right direction.

Right now, it is safe to say I'm pretty fed up but also un surprised. On hearing this, many people will be rolling their eyes, "classic Gabi", "always something", "here we go again" - & you would be right, but it also sucks. I'm sure I will get my head around it & once under control will be managed and kept stabile so I can get my life back to normal. Three months is a really long time to put pause on everything.

Due to the fact I have no idea when it will be sorted, I have started to do my research and take matters in to my own hands. A bit of a lifestyle over haul has occurred which I will explain more about in my next post later this week.

Lots of love xxx

Thursday, 10 September 2015

7 weeks later...

Hi Guys,

So it has been a while since my yoga catastrophe and things have not really been going to plan. As you may have read in my last post, I was sent home from A&E with a packet of codeine & the hope I would be on my feet soon.

Well 7 weeks later and I have just had my 'urgent' knee Dr appointment. In that time, I have gone from no weight barring at all & on two crutches to hobbling around on one out the house and getting by with none at home so that is an improvement. On the other hand, my one holiday of the year to Paris was cancelled, I have been unable to drive & the move to Cardiff has yet to go ahead, although I am paying rent on the new house. Safe to say I'm pretty fed up.

Luckily I am able to work at home with Chroma so that is all still going really well. Mum & Dad have been a massive help getting all my orders to the Post Office and driving me around at weekends.  I have however had to turn down a lot of part time work which has left me pretty stuck, money wise. I have also had to spend a great deal of time on my own, stuck in the house - the record has been 8 days straight without leaving our street. Great!

7 weeks feels like a hell of a long time to wait for an urgent appointment but there was nothing I could do about it. When I finally saw the Dr, he was very kind but said he needed an MRI to be able to know what was wrong. Even I knew that would be needed. I am now waiting for an MRI scan before waiting to go back & see the knee Dr to find out what exactly is wrong & what treatment is needed.

About 3 weeks into the injury my "good" knee swelled up and became very stiff, I had two swollen knees. Thankfully I had another phsyio appointment booked so I was able to get some help, she informed me that I was starting to damage the "good" knee and needed to stop that getting even worse ASAP. Since then I have been sporting a rather beautiful blue knee brace... on the "good" knee. It has helped a lot and the swelling has done down. The physio also estimated that worst case scenario I would be looking at 6 months before being able to drive/move out/walk etc. so fingers crossed improve a lot faster than that!

The main issue at the mo is that I should have moved to Cardiff about 2 weeks ago, my room is looking beautiful and everything is ready to go, if only my knees were too! I can't move until I am can drive, get to my part-time job & able to walk Toby. I don't know how long that will be, I've just got to play it by ear.

Talk about one thing after another eh?! Will of course update soon.
xxx

Saturday, 8 August 2015

Calamity Gabi

Hi guys,

So I like to keep things interesting and can never stay in one piece for long.
As I may have mentioned for the past couple weeks I have been having phsyio on my weak knee, although there is no injury there it was left a bit unhappy after the on/off arthritis. The physio and gym sessions have been going really well and my fitness and strength levels are at their highest. I went to the physio on Monday morning, she was super impressed with my leg strength and thought the bad leg was actually now stronger than the other! Great news all round. She suggested I do the normally painful activities like cycling and swimming lengths and sent me on my way with a final appointment booked to make sure things were still going okay.

That evening I decided to head to a Yoga Fitness class. I have done yoga and pilates before and my brother has gotten really in to this class in particular. A group of us went down and things were going well. It was a tough work out but my hyper flexibility meant that a lot of the moves were quite easy. That was until we moved on to a one legged lunge in to a knee raise. All my weight was on one leg and it involved balancing. We were supposed to do a set of 10, and I think I managed maybe 6 before it was really painful, I decided to skip the rest, my knee could not hack this. The constant switching between bending my knees and stretching them out had my legs feeling like jelly, but I assumed this was normal. At the end of the class I wasn't in an awful amount of pain so put it down to a good work out.

The following morning I woke up with some minor swelling in my left knee and a lot of stiffness, I just carried on with my normal actives. The next morning the knee was worse, I iced and elevated and took ibuprofen in the hope it would sort itself out. I had definitely done too much but went on a stroll, thinking it would loosen it up. On Thursday I woke up and the knee was huge. The swelling had gotten even worse and it was now really tricky to walk on. I still didn't take it very seriously and continued to try and act normally. By that evening it was the biggest it had been and nothing seemed to get the swelling down. We decided if it wasn't better by the following morning I would head to Minor Injuries. I had already tried all the normal things, pain killers, ice and elevate, normal movement, resting & hot water bottle so I was getting a bit concerned.

Friday morning came and it was no better. If anything, it was worse. My knee was now double it's normal size I was unable to walk or drive. I couldn't bend or straighten it, it was stuck in a weird position. Minor Injuries it was. I eventually saw a nurse who took all my knee history and decided I should be seen by the Dr as an emergency appointment as there was nothing much they could do. Later that day I went to my GP, who knows me well by now (I've been in and out of there far too many times) and we were laughing at how ridiculous it was that I had managed to hurt myself doing yoga of all things. As she tried and failed to bend and straighten my leg she told I needed to go to A&E... One week after I was discharged for Margaret playing up I was looking at having to go back. I think my face looked horrified and we agreed that we would wait over the weekend and it it was no better by 9am on Monday morning, I would see her again and go up to A&E. I asked what she thought needed doing and she replied, "an op".
Oh great!
I left with anti inflammatory tablets and the promise that if it got any worse I would go straight in.

Saturday was tricky but no worse, I crutched around town with Mum, rested it, iced the knee and took the tablets. I tell you what, crutches are exhausting, but at least it's a work out for my arms and core!  Unable to move my knee I had no choice but to sleep sat up right, with my leg propped up on a cushion. I couldn't lie on my side, how I normally would and was in quite a lot of pain. I drifted off at around midnight but woke up at 2am with such a sharp pain up my leg. I think I must have tried to bend it in my sleep - stupid sleeping Gabi! I failed to go back to sleep for the rest of the night. The pain was worse than ever and the swelling hadn't gone down.
Sunday morning I had had enough, it was getting worse, no better, so Mum took me in to A&E, again.

This time I wasn't at risk of getting really poorly so wasn't rushed through. Instead I had to sit and wait for a Dr, two hours later I was seen by a lovely lady who examined, took down all details and sent me off for an Xray. I was also given codeine for the pain, thank god! The Xray came back clear meaning there were no breaks to my knee cap or anything and the swelling wasn't down to fluid. This meant it had to be tissue damage. She suspected a tear in my meniscus but couldn't be certain, but my knee was locked, which explained why I couldn't move it. She said that due to it not being a break I would not be admitted to hospital and could go home. She put in and urgent referral to the knee clinic for me and hoped I would be seen soon.

I explained that it had gotten worse over a week and that I was getting pretty fed up. She suspected it would be some weeks before I was back walking/driving again. I then pointed out I had a city break in Paris booked for 4 weeks time, she just crossed her fingers. She hoped it would get back to normal on it's own and if not the knee specialist would be able to help. I left A&E with a pack of codeine feeling pretty down in the dumps.


Riding the hospital buggy

Since then my knee has gotten no better. The swelling has remained the same and I need codeine to help with the pain through the night. I am still on crutches and not able to put any weight on it. I don't see how it is going to get better on it's own and am just waiting for a referral. They've said it could be up to a 6 week wait for urgent referrals... what's urgent about 6 weeks I don't know. Until then, if nothing changes, I am pretty stuck, literally. I am lucky in that I mainly work from home and still with my parents so have help, it would be so much worse if this wasn't the case. I have had to turn down other work and don't really have any idea when I'll be on my feet again.
It is the most frustrating thing ever. I am gutted about potentially missing out on Paris, it's my only break booked all year. I am also due to move out the day after I get back which could potentially also be an issue if I'm still not back on my feet.


The left knee which I can neither straighten or bend

Morally of the story, don't exercise.

Saturday, 1 August 2015

Margaret continues to be on strike...

Hey guys,

So, I was now on my way to A&E, pretty fed up and little nervous as what could be going on. I assumed a block but didn't know how they even treated one if that were the case. I had read some horror stories but didn't think I was in any way poorly enough to consider those. For starters, I wasn't really in pain, when everything you read says that with a block you should be in agony.

We couldn't decide which hospital to go to, the one with my surgeon who made Margaret or the one with my consultant who knows me and my condition very well, we opted for the consultant one. Upon arrival I realised I had never been to A&E before! I wasn't a very accident prone child and although I've spent hundreds of hours in hospitals, they've never been in or via A&E. I was pretty excited to be going in, I'm a huge fan of medical based dramas and shows so found it really interesting... oh what a loser I am.

I checked in at the desk and sat down for what I thought and heard would be hours of waiting. 10 minutes later I was called in for my assessment. This is undertaken by a nurse who goes over whats happened, makes a file ready for when the Dr's call you when its your turn. She took down a couple of details before taking me straight through, out another door. To the poor people in the waiting room, it must have been ver confusing. There I am swanning in like I own the place, looking completely healthy and un-injured being taken straight through with no wait. They got me a bed within a couple minutes and had me dress into a hospital gown. I had ended up in Majors. For those that don't know in A&E there are three areas, Resus, Majors and Minors. Resus is for the critically ill, things like terrible breaks, strokes, heart attacks etc. Minors is the walking wounded, breaks, sprains, cuts etc and then there is Majors for the people in between who need urgent care but aren't in a life or death situation. Somehow I had walked right into Majors.




I was quickly surrounded by 3 nurses who were all so so lovely. I'm very used to being in medical environments so wasn't really nervous but if I had been they would have settled that straight away. they were all around my age, maybe a couple years older and it was nice to have a chat. I had all my OBS done (blood pressure, heart rate, temperature) before having a lot of blood taken and a cannula put in. I looked at my Mum, things seemed to be getting a little serious, quite quickly. I was given a bay, Number 12, which made me very happy as its my favourite number.



A Dr came to see me and I had to give the details for the 6th time that day, I then had an X-Ray of my stomach to see what was going on.

I then spent an hour or so waiting to find out the results of the tests. This provided excellent time for people watching, one of my favourite activities. After half an hour I knew what was going in most of the bays around me thanks to a lot of loud talking and nothing more than a curtain between us. The Dr eventually came back explaining that although my bloods were completely normal, the X-Ray had shown something partial obstructing my intestine. They weren't sure what this was, whether it was something medically that had gone wrong or food. She explained that she would be now talking to the surgical team about how to proceed and possibly how to treat it medically.

Surgical team?! Things seemed to have escalated rather quickly. One minute I'm ummming and ahhring about whether to bother to see anyone, the next they're talking about surgery! Thank god I had come in. I freaked out a little but tried to stay calm until I knew what was going on. My main worry was that my surgeon, who I really trust, is based elsewhere and I didn't know how that would work. The next time she came in, she thought that the surgeons wouldn't be getting involved (PHEW) and that the Dr's would try and treat it medically. When I asked what this would involved, she explained it would involved putting an NG tube down through my nose and into my stomach, to pump out what is in there. At this point I really freaked out. It's odd that I was more scared of the NG tube than I was about surgery. Ever since my awful colonoscopy experience a couple years ago I have a big fear of being put in pain, whilst awake, when something is out of my control. If I'm going to be asleep I'm not concerned at all but if I'm awake and know I'm out of control of what is being done to me, I really don't cope well. It's safe to say I got in a bit of a panic, which the Dr walked in on. Great! I'm always super embarrassed by crying in public, when normally I deal with things pretty well. She was really kind and explained that I would be being admitted to a ward and so wouldn't be going home today, I can't say I was best pleased but didn't have much choice.

They wheeled me up to the ward at about 11:20, I was placed in what seemed like quite a quiet bay on the Acute Medical Ward. There was just one other elderly lady when I got there who gave me a cheerful wave! I always try and make friends with the people in the beds around me, it makes the time there a lot less miserable. I had my OBS done again before being given a tablet designed to kick start my bowel in to moving. No mention of NG tube was made, which I was incredibly relieved at but also a little confused. Things went from surgery to NG tube to one small tablet in the space of a couple hours. I also hadn't been told what had caused the block or why it had happened. I felt pretty anxious, with the whole not knowing thing. I like to have all the information and to always be kept in the loop.

Mum left for the night about half an hour later and I settled down with an audio book to try and get some sleep...




Sleep never happened.
About 20 minutes after Mum left they finally turned out all the lights, it was about 1:40am ish, I was just drifting off when a lady was bought in, followed by a 3 or 4 person medical team. The lights went on, lighting up the whole bay. The poor lady was really poorly and had Dr's and nurses in and out for hours. She was in the bed next to me so there was no chance of not being disturbed. At around 4:30 she was settled for the night but she requested they leave the lights on... I was pretty irritated at this point and led awake desperately trying to drop off to sleep. This wasn't helped by the huge cannula in my right arm not allowing me to bend it or get comfy. Over the course of the next two hours, two further ladies were bought in, both elderly and unwell. At 6:30 the ward starts to wake up, with the shift swap over starting at around 7:00. I had made it through the whole night with not even a minutes sleep. I looked and felt like death, thankfully at some point during this eventful night, Margaret started to work a little.

For those that haven't ever had the pleasure of a hospital stay they are far from relaxing. They do a meds and obs round pretty early and I was given another tablet and breakfast before 8:30. Then the wait starts for the Dr's to get to you on their ward rounds. This takes time, depending where you are in the queue and how poorly those around you are. A gastro Dr popped in briefly very early on to let me know that from a Crohn's perspective things were okay. There was no obvious flare and nothing too serious on my Xray. He explained that as Margaret had started working he was sure the main Drs would send me home that morning. I was overjoyed and texted Mum to let her know. I was next visited by the main Dr who said he wanted to see Margaret work more before I was allowed to leave. I panicked a little as this was completely out of my control. When Mum arrived we did everything we could think of to get things moving; a walk, fizzy drinks, salty foods, water, a lot of orange juice and lying on my side. Margaret barely stirred but thankfully the Drs decided I was still able to get out of there and processed the paper work at around 1:00/2:00pm. I had the irritating cannula removed and was finally free!!

I was SO relieved but completely exhausted. I went home worrying that Margaret was still not working properly and that I was going to end up back in A&E. Thankfully over the next 24 hours she got her act together and managed to work again. They were never quite sure of what caused the block but I think it was down to food. Grapes, popcorn and lack of water are not a great combination. It's safe to say in the future I'm going to be very careful about what I eat and how much fluid I'm drinking. Popcorn is not my friend.

xxx

Sunday, 26 July 2015

The day that Margaret went on strike - PART 1

Hey guys,

Margaret and I have had a rocky couple of days, a couple days ago she decided to get the hump and stop working. I normally empty the bag 5-7 times over 24 hours, it's very dependent on what I eat, how much I eat and activity levels. The only times that I always, always have to empty are around 11pm before I go to bed, at some point in the middle of the night, usually 5am ish and when I wake up between 8:00 and 9:00 on a weekday.

Wednesday evening I went to go to bed and the bag was completely empty which is very odd, I didn't think too much of it but my stomach did feel kind of odd. It's such a hard feeling to describe but something was definitely off. I woke up at 8:30am and realised I hadn't needed to get up at all in the night and that there was only the smallest amount in there from the past 12 hours. This definitely wasn't normal as I had eaten my usual amount the day before. I started to do the many things they suggest when you think you might have a little block.  I couldn't think of any other reasons why Margaret wouldn't be working. I've never really had one before but they are a fairly common complication of having an ostomy. There are lots of reasons you might have a block, it tends to be, either damage from surgery, a twist or kink in the intestine, a flare up or food.

I had a hot drink, a little bit of something to eat & drank a hell of a lot of water. My tummy felt strange but was still looking normal and I wasn't in any pain so I headed to the gym thinking it would all sort itself out and that some activity would get things going! As the day went on my tummy grew more bloated, I had a hot shower, and led down with a hot water bottle in the hope it would shift whatever was blocking Margaret. Things did not improve and she was still completely shut down. At about 3:30 I started to worry, it had been 8 hours since anything had come out which is never okay. I rang my Mum to update her and then tried to get hold of my stoma nurse. The line rang and rang with no answer machine, nobody was in the office. I then tried to get hold of my brilliant IBD Nurse but managed to call after their office had closed. Nightmare. I decided to try 111, the NHS service designed to help people who aren't quite sure what they should be doing with their symptoms. The man was very polite and listened to what I had said before asking a set of completely irrelevant questions that had clearly come up on his computer screen.

'Have you been bleeding profusely for 30 minutes or more?' ermmmm no.

'Is your pain level high?' well, no not really.

Clearly my answers didn't flag up any form of emergency and he instructed me to see my GP within 12 hours. This is where, I'm afraid, 111 really doesn't work. I think its a great service for 'normal' accidents or medical queries. When, however, your issue doesn't fit the norm it doesn't make any sense. Although my symptoms on paper wouldn't qualify as a usual emergency situation, they definitely were not okay and had I left it the extra 12 hours, things could have turned out a lot, lot nastier. I rang the GP surgery and asked to speak to the on call Dr, having to explain to the secretary that no it couldn't wait until tomorrow. She said she would do her best and I settled down to wait for her call, really unsure what was going to happen next but praying that Margaret was going to kick back in to action.

The next hour and half went really slowly and my stomach grew more and more uncomfortable, I was now really bloated with back pain and unable to wear even my stretchiest leggings comfortably. I'm not going to lie I got pretty irritated with how at a loss I felt, Google told me that after 7 hours of no stoma output I should head straight to A&E but this seemed a little excessive to me and we all know you can't always take a Google medical search too seriously. I hate feeling like a burden and I never know when I'm poorly enough to seek help. I would usually put on a brave face and think I'm not ill enough, I'm constantly concerned that I will be wasting peoples time. In the past I think this may have been detrimental to my health and because of this I am getting better at speaking up when I don't think things are right. Nobody knows my body as well as I do and I knew here, that something wasn't okay. I was also pretty pissed off at Margaret. She has served me well for two whole years with barely a grumble and now for no reason or notice had decided to go on strike - she'd clearly put up with too much of my shit (hehe).

The Dr gave me a call at around 6:15, she wasn't my usual GP but she was so so brilliant. She heard me out and immediately said that she thought I should go to A&E. It was definitely not what I wanted to hear but I also felt relieved that I was being taken seriously and I wasn't going mad. The Dr thought it best that I got checked out, just in case. Mum had gone out with the dogs so I hung on until she got back, packing for an evening sat in an A&E waiting room. It felt better that I could go in on a recommendation rather than off my own back, that way if all turned out fine and dandy I wouldn't feel guilty at wasting anyones time.


- This is already pretty long so I shall continue with PART 2 soon!

Lots of love xxx

Wednesday, 15 July 2015

Perspective

Hi everyone,

So recently something pretty horrific happened. A guy I went to school with lost his life in an RTA whilst driving home. I didn't know him well and we hadn't kept in touch since we left school five years ago but he was in my school house and I'd known him since we were 11. Considering we weren't close friends the shock was huge, I felt pretty angry at the injustice of it. How unfair it was that this could happen to someone so young and so lovely and just like that, out of nowhere. What happened to this brilliant school friend really bought me back down to earth because you know what, life is too fucking short.

When I was really poorly and Margaret was looking more and more likely, I promised myself that once I was better I would do lots of amazing things. I wouldn't take 'normal' life for granted and would make the most of every situation. Recently I think I've forgotten this. I worry about moving house and not making friends, I worry that I need to lose weight and that Chroma isn't moving as fast as it should, I stress about what other people might think about Margaret and whether I should cut my hair short or not. Frankly, would I lie on my death bed wishing I hadn't cut my hair or that I hadn't moved out - I'd like to think not. These unnecessary stresses and worries take up way too much of my life and probably lots of other peoples. Delayed trains, traffic jams, missing a delivery or getting locked out, yes are irritating but really, there are worse things that could happen. Does Margaret even really matter all that much?

The untimely death of James has made me appreciate everything and everyone a whole lot more. Thanks to you, James, I'm going to grab life by the balls, not be such a scaredy cat & tell everyone I love them a whole lot more.

On that note I cut a good 8 inches off my hair... I've been thinking about it for ages and finally this week thought why the hell not. Baby steps to brave Gabi eh...


Saturday, 4 July 2015

Boobs, Limbo & Portaloos

Hi guys,

As promised, here is how I spent my Sunday. Those of you who keep up to date with what I'm up to with Chroma may have seen that I recently sent some notebooks to the lovely people at CoppaFeel! These guys are all about spreading the boob love, getting people to 'cop a feel' (see what they did there?!) & generally raising breast cancer awareness. They primarily target younger women between the ages of 18-30 and do it in the least scary or intimidating way. I first watched a BBC3 documentary about CoppaFeel! & it's founder Kris a long while ago but was re-inspired after watching The C Word a couple weeks back. I decided to emboss some boob based notebooks and also applied to join the festival team and volunteer where I could.




Thankfully my application was successful and I was asked if I could help at Wireless 10 Festival in London. I was of course so up for this and headed to Finsbury Park to spread as much awareness as possible. Upon arrival I met the rest of the lovely team and was handed my boob for the day. Yes, I was to spend my Sunday dressed as a massive tit. I probably shouldn't have been as excited as I was, but I am not ashamed to say, I loved it.



The first few hours were filled with drizzly rain and a lot of fed up people but as the day progressed things became a lot more positive. We were strolling past an activity tent when one of my fellow boobs noticed a limbo set up. Now, I don't like to brag and this isn't something I bring up often, but I love to limbo. The ability to limbo (& play Twister) are probably the only upsides to having hyper-flexible joints. It was safe to say once I had spotted the limbo bar, there was no way I was going to leave without having a go. I ended up completing every bar apart from the very lowest one, finishing with it below my hip height. It was only after finishing that it dawned on me, I had done the whole thing dressed as a boob. I was a big, limbo-ing boob in front of a lot of people. The video was snap chatted (brilliant) but I think I gained a lot of respect for my skills.


Limbo-ing aside the day was actually really great. If you've read my previous post you'll know all about my injured foot, so I did spend a lot of the time trying to catch up with everyone, limping around but it was definitely worth it. Encouraging people to sign up to the CoppaFeel! free monthly reminder to check your boobs was great & I had many photos taken with the festival goers  - who doesn't love a boob!

The day also marked the first time I went to a festival and used a portaloo with Margaret. I hadn't given it all that much thought until I noticed she needed emptying and realised this meant the dreaded festival toilets. I left it as long as possible before venturing in to one. Due to it being the first day of use, it wasn't actually that bad, although hardly pleasant. It was whilst locking myself in that I realised, I was wearing a playsuit. Not just that but a playsuit with a t-shirt, cardigan, waterproof and rucksack over the top... The effort involved in going to the loo was huge. You don't realise how small the space is inside those things until you're stripping layers off, thank god I didn't have my boob on. What felt like hours later, I managed to get out, wishing I could bath in antibacterial wash.
I decided to avoid eating whilst at the festival, to try and keep Margaret quiet, thank fully it all worked out okay in the end and the rest of the day went really well.



CoppaFeel! really is the most amazing cause, it is definitely worth signing up to their free text service - simply text BOOBS to 70300 for your monthly reminder, it is completely hassle free and could save your life. Spread the boob love and spread the CoppaFeel! word.

Lots of love
XXX

Monday, 29 June 2015

June Update!

Hello everyone!

With June coming to an end, marking half way through 2015 - I thought it'd be a good time to update you all on the bits and pieces I've been up to!

First of all, last week I finally had my physio appointment for my knee. It comes months after my initial diagnosis appointment and since then I have worked really hard at the gym, strengthening my legs and getting my fitness levels back up! The physio lady was so lovely and could see that I was already making progress - she gave me a bunch more exercises to do to help further and I'm going back in a month to see how I have been getting on. I was also informed 'I have a great walk', so thats something to add to the CV.

Speaking of CV's (kind of) Chroma has also been doing really well recently and has been keeping me very busy. I have given up my part-time childminding & am officially full time Chroma! Eeek! It's a bit scary but is probably only going to be for the Summer. I've decided I'm going to get a part time job in Cardiff to help with bills and to make some friends...

Now for the fun stuff! Last week I headed to London for a day of fun packed activities! I met up with my lovely uni friend, Em for the most incredible pizza ever at Franco Manca on Tottenham Court Road. If you're ever that way, you have to check them out for super cheap, stone baked, sour dough proper Italian amazingness. We did a spot of shopping before I headed for a catch up meeting with one of my old tutors who has continued to be hugely supportive with Chroma since I graduated last year. I walked in expecting to have a chat over a coffee and ended up celebrating one year of business with a glass or Prosecco and some yummy nibbles. Getting out of the house did me the world of good and it really helped to talk over how things are going with other people.

I then went on to a magazine issue launch party at a lovely boutique that Chroma had contributed to. Now, short of sticking me on top of a tall building with a pack of rats, these kind of things are kind of my worst nightmare. I always end up feeling incredibly awkward and lose my ability to make small talk or even introduce myself properly. This one, however, was the best so far! Networking is something I know I have to do and get better at so I set myself the task of talking to at least three complete strangers. I did one better and ended up chatting to 4 - my all time record! Most of the girls there were with friends and had dressed up for the occasion, I on the other hand had spent a hot, sweaty day in London & was carrying a bag of rugs I had bought with Em (don't ask). My make up had come off & I was limping (more on that later). I immediately felt intimated and busied myself pretending to look through the rails of clothes and stacks of jewellery. After 10 minutes I did pluck up the courage to initiate conversation and it went well! Everyone I spoke to was so lovely, I even met a fellow dachshund owner. It definitely helped build up my confidence & was actually quite fun. Next event I am going to up my game further and speak to at least 5 people!

I also have a new injury to announce (I like to keep you all on your toes)...
Whilst in London I managed to hurt my foot. I had stupidly decided to wear very flat, flimsy sandals which gave me a blister and didn't support my 'hyper-flexible' feet well at all. After power walking/lightly jogging to get to various trains, my left foot hurt like hell. The pain has gotten worse over the last three days, eventually leaving me pretty much non weight bearing yesterday afternoon. Today, I headed to Minor Injuries wondering if I maybe had a stress fracture, thankfully I have just pulled two ligaments running down the inside of my foot. I was pretty relieved, not just because it meant I hadn't broken anything but it also saved me the embarrassment of explaining the reason I had a cast was because I had walked too much.
I've been instructed to rest it fully for another 24 hours followed by two weeks of no excess walking or exercise - shame. A great excuse for lying in the sun watching Wimbledon if you ask me.



This post is already getting pretty long, but I shall update you soon on how I spent yesterday. It involved a limbo competition & lots of boobs.

Lots of love
XXX

Saturday, 6 June 2015

Two years on...

Hey guys,

Today marks two years since I had my ostomy surgery and welcomed Margaret in to my life. This time last year my post was pretty positive, I think mainly because deep down I still thought I would be able to have a reversal. Margaret felt temporary, where as now she doesn't. My life suddenly feels permanently changed, which is odd a whole two years on. Looking back on the photos of me around the time of my surgery, I feel kind of sad. I wasn't in a good place at all and in hindsight, I can see how shit things really were in so many ways. Despite my negative feelings towards having Margaret for ever, looking back makes me hugely grateful for how I feel right now. I'm pretty bloody lucky.



 


              (Day of surgery)                                                         (Two years on)


This past year I have achieved lots of things on my Big Life To Do List (although I am yet to meet David Beckham) and have plans in place to achieve some of the others. I'm both apprehensive and excited about what the next year holds. Of course, huge huge love and massive thanks to every one of my family and friends for their never ending support and to everybody who still reads this blog - you're all amazing.
As always, onwards and upwards.

Love XXX

Thursday, 28 May 2015

Knee Update

Hi guys!

As I said a while back, as well as few goings on with my tummy, my knee has been playing up a little bit. Nothing major but at the start of the year it was really starting to ache, the gym seemed to be aggravating it and on occasion it was swelling up. I mentioned this to my consultant a couple months ago and I was referred to a rhoomatologist. The referal came through and I went up to my usual hospital to see him.

I wasn't really sure what to expect as most of the time there is nothing to physically see but I described my symptoms and then the Dr & an as siting physio put my joints through a series of movements. Bending my knees and elbows, neck and back. One exercise had me, feet facing forward and my shoulders turned round to face the opposite way. Apparently most people can only get a quarter of the way round. I, on the other hand, could go nearly 180' so my shoulders were pretty much facing the back and my feet, the front - I felt a bit like an owl!
With no stretching or warming up I was also able to put my hands flat down on the floor and my head on my knees, with my legs straight. I've always known I was flexible, I danced until I was about 15 and did gymnastics as a child. My joints have always been able to bend or do strange things but I didn't realise this was widely not normal. The Dr informed me I have joint hyper-mobility syndrome. For some people this effects their wrists, hands or thumbs - we all know the kid at school who was "double jointed" - but for me, it effects most of my joints.

The Dr explained even the way I was sat, was straining some of my joints with out me even knowing. Just because I can hold/rest in a certain position, doesn't mean I should. It doesn't put me in any pain, so I never think anything of it - but for others it would and they would stop. Even though I'm not in any pain, I am still straining my joints.

When talking about my knee specifically, he thought that an old ski injury had weakened the joint and so when I was unwell and was having a Crohn's flare my body was attacking the weakest joint. The way to help this, is to strengthen all the muscles around my knee joint to create more support. Right now its a wobbly joint, which explains why my balance has been awful for the past few years! I was also sent for an MRI of the knee to make sure there wasn't any old damage from the skiing injury. Thanks to the lack of laxative, this MRI went a lot more smoothly and Margaret didn't explode... which was great news for all involved! The results showed that there was nothing serious going on, so no key hole surgery would be required. It did show inflammation however so I have now been referred to a physio to see if that helps.

I have since been heading to the gym a lot more and have had a programme created by a personal trainer, specifically to strengthen my leg muscles. The work out is tough and leaves me struggling to walk up and down stairs afterwards, but my legs hurt in a normal 'after-a-work-out' kind of way, rather than a pain in my knee, which is really encouraging.

The whole thing has explained a lot, and past injuries or joint pain I've had from my early teens, now makes a lot of sense. Hopefully by strengthening the muscles around my joints I will be able to improve any Crohn's induced arthritis I suffer from in the future. Well, heres hoping!

Lots of love,
XXX





Sunday, 24 May 2015

things are a-changing

This post isn't so much Crohn's related but is something that has played on my mind for quite a while...

From the age of 4 you go into school and are immediately surrounded by fellow children, all eager to make friends. This continues all the way up until you're 18. You obviously move to secondary school and some people change schools or relocate, but each time you are generally set up with a group of people - all your own age, in the same place, for hours each day & you make friends. Again, when you go to Uni, you arrive on mass, with hundreds if not thousands of others, all eager to meet and talk to new people. & then you graduate.

Suddenly after 18 odd years of being on the conveyor belt of life you are flung in to the 'real world'. Many get a job and keep on moving forward. However, if like me you don't follow these steps you take an alternative route whilst everyone else seems to move forward around you. Some people decide to take a year out, move home, can't seem to get the job they want or simply don't know what they want to do yet. Some, like me, opt out of the job hunt & end up going it alone. Don't get me wrong, I love Chroma. I love being my own boss and the huge satisfaction of creating something from scratch and watching it grow and achieve. It does however get pretty lonely. I spend all day, five days a week, on my own. Even at the weekends the vast, vast majority of my school & Uni friends have gone two ways, jobs in London or travelling abroad. This hasn't left many people in my home town, and those that are around are busy working hard towards their own goals. I'm still living at home and so surrounded by my lovely family and I see the few friends still around once(isn) a week. It's funny, however, that even when you're super busy and have a lot of people around you, you can still feel on your own.

I start to doubt myself, watching the onslaught of 'successful' lives on my Facebook, Twitter & Instagram feeds. Suddenly people seem to be growing up. There are engagements, new jobs and pregnancies left, right and centre. Everyones lives are so transient with everyone moving at a crazy speed. Right now is also a time when you start to really work out and see who your real friends are. With everyone spread out around the country and even the world, you don't keep in touch with everyone as easily & that big group of school and Uni friends, starts to get that little bit smaller.

I sometimes look around and can't really work out how it has all happened. I know I have all my own stuff going on too - I'm moving to Cardiff (which I'm finding more and more nerve-wracking every day) and Chroma is steadily growing and taking up a lot of my time. Maybe others looking in, think I've got all my shit together too. But whilst I sit in on the weekend, contemplating heading to the cinema on my own, I wonder if lots of people are feeling the way I do. Everyone relocating, heading off to travel, starting new jobs or still wondering what on earth to do are feeling just as freaked out and lonely as I am...

Tuesday, 19 May 2015

IBD Day - Book for Crohn's

Hi guys!

So today is not only World IBD Day but is also the day that a fantastic book is being launched. 'Book for Crohn's' is a new book that looks at Crohn's Disease from a different point of view, that of the Crohn's community. It is a book compiled by Crohn's sufferers, their Dr's and their loved ones.

When I was first diagnosed I did what we are all told not to do, headed to good old Google and scared myself half to death. Everyone has a different approach to these things but I was itching for as much information as I could get my hands on. I wanted to know every medication, every possible outcome and worst case scenario. I felt like I was preparing myself for anything that could be thrown at me and although in many ways I believe it helped me get my head round it all, it was also pretty terrifying. The internet is FULL of horror stories. Naturally people tend to write about their negative experiences, only posting on forums when things are tough. When things are going great, you don't feel the need to reach out to others for support in the same way. As I read through pages and pages of information, forums & stories, I struggled to work out if what I was reading was 'the norm' or not. At that time and at many times since my diagnosis, I wish I had had this book.

Book forCrohns is filling a gap that is greatly needed. Answering all the questions that you wonder as a newly diagnosed Crohnie. The book starts with looking at Crohn's from the a medical stand point, discussing the basic symptoms as well as areas such as diet, surgery, lifestyle, sex and medical treatment. This is done in the least scary or dramatic way and doesn't fill clinical in the way many medical information sites can feel.
This is followed by looking at Crohn's from the perspective of those living with the disease. This I feel is one of the best aspects of the book. These stories are fantastic, from diagnosis to every day life and going through surgery, employee rights to having a relationship with the disease and it's psychological impact. It tackles Crohn's from all angles. There are also accounts from the loved ones, giving such an amazing insight into how the disease effects everyone else, something which I think is largely ignored! A medical view is also given throughout the book allowing the reader to have a much deeper understanding of each topic. The whole book acts as a complete guide to living with the disease.

I could not recommend the book enough, especially if either you or a loved one has had a recent Crohn's diagnosis. Even us long time sufferers would benefit from having a read! I'm going to be giving it to my parents, to get their perspective but I think they would have really benefited from reading the section written by and for children and young adults with the disease during mine and my brothers diagnosis.

A huge, huge plus point is that all profits from the sale of the book will be going towards funding further research into the disease. I've added a link below to Amazon, where you can buy the book online. I hope that it helps some of you and you find it as positive as I did!

Lots of love
XXX

http://www.amazon.co.uk/Book-Crohns-Written-community/dp/1500601691




Wednesday, 13 May 2015

Onwards & Upwards

So guys, I have some super exciting news! I am officially moving to Cardiff. Yes, at the grand old age of 23 years and 7 months I am finally moving out of my parents home. Before this blog even started, I did move out for about five months, for just over half of my first year at Uni. Since then, for the past three years, I have happily lived at home with my Mum, Dad and youngest brother, Dan. For a chunk of this time I was pretty poorly and really couldn’t have lived anywhere else. 

Since my surgery and especially in the past year or so, things have been going really well. I am both the happiest and healthiest I have been since before my Crohn’s diagnosis and I have managed to achieve lots of really exciting things. Many of these I wouldn’t have been able to do, had I not been living at home. I have to say aged 18 I never imagined that I would still have been living at home at nearly 24 but I think it has really been needed. Aside from the 18 or so months of being ill, the months after my surgery were pretty tough. I was adjusting to a huge Margaret shaped lifestyle change as well as a particularly nasty break up and needed the comfort and familiarity of home. It felt like it took quite a while to get back to my old self and get some of my self esteem & confidence back. I think it would have taken even longer had I not been surrounded by my family and old friends. Living at home has also allowed me to set up & establish my own business which I never dreamed, in a million years, I would be able to do. 

My parents have been nothing short of amazing, not batting an eyelid at me still living at home. Their love & support throughout everything has never wavered and I am so lucky to have such an incredibly solid support system around me. I know that if I wanted to they’d let me live at home forever! 

In the year since my graduation things have been largely really positive and I finally (kind of) feel ready to move out and on to the next chapter. As excited as I am, I am also utterly terrified. I know I’m going to miss home a stupid amount and it’s going to be a huge adjustment process. But I do feel, if I don’t do it now - it might never happen! It would be really easy for me to sit back and stay settled with my parents and I really don’t want to get too comfortable. I know the longer I leave it, the harder it is going to be... 

So, yes, I will be moving to Cardiff at the start of August 2015. I will be moving in with my brother, Sean, his girlfriend, Caz, & three other housemates. Three girls, three boys in a really lovely house with a small garden and spare room which will help with Chroma. It even has a working outside toilet... It’s like the house was made for me! I will be working from home and of course Toby is coming with me! As silly as it sounds, he is my main worry. The poor little guy is really going to miss my parents and other dogs (something I’m trying really hard not to think about) - he has never known anything different. I couldn’t ever leave him behind, we would both be miserable and I think he is really going to help settle any anxiety once I’m there. 

So there we have it! A bit of exciting (scary) news! I will, of course, be blogging my way through everything and updating you with how I get on. Any tips of moving out would be greatly appreciated, I feel a bit pathetic for being this nervous!

Lots of love 

XXX

Sunday, 10 May 2015

So do you still have Crohn's?

I begin this blog post as my last one ended. It is something which has gotten under my skin on various occasions and in my opinion has become worse since having Margaret...

So do you still have Crohn's?
Yes. Unfortunately an ostomy doesn't provide a cure. There is no cure. It is simply a way of managing the disease...

... Crohn's is a hidden disease. Unless steroids make your face blow up like a beach ball or arthritis causes your joints to swell so badly you end up on crutches or in a wheel chair nobody would ever know you were walking round with an incurable, chronic disease. As I have said before this is both a blessing and curse. Being able to appear fit and healthy makes this a hell of a lot easier. There are no pitying looks or people treating you like you're about to break - something which I think I would find quite hard to deal with. In fact, I think despite having had Crohn's for nearly eight years and now having a bag permanently stuck to my stomach, many people forget I even have it. Before Margaret I did too. I guess in some ways this is to my credit. I have never kept Crohn's or Margaret a secret and by being so open about it and living my life as "normally" as possible it seems it is easily forgotten.

But the fact of the matter is, I still have it. Margaret has not changed this. Granted, the majority of my symptoms have largely gone away. She has allowed me to be the healthiest I think I've been since my diagnosis aged 16.
I still, however, have to empty my bag 5 times a day and suffer from irritated & sore skin on a daily basis. My stomach will randomly bloat and I will get some cramping for no reason at all. One of the hardest symptoms however, is how stupidly tired I get. I have to manage my days and weeks pretty well. I have learnt to juggle all aspects of my life, trying not to over do anything. One big night out or a series of badly slept nights can ruin the next day. This is why I often choose not to drink too much or go all out on a night out. A lot of people don't get this and I do get a wind up comment or an eye roll for yet again going for the diet coke. But over the years I have learnt to listen to my body and take it easy when required.

The annoying thing with Crohn's is, this requirement is needed more often than I would like and is not 'fixed' after a good nights sleep or bit of rest. A flare, even a minor one, can take me months to get over. If I was exhausted and symptomatic last week, the likelihood I am again this week. I am not 'better', there is no real 'better' there are just some days or weeks when I'm feeling a lot more like a 'normal' person than others. So yes, I still have Crohn's.

Lots of love,
XXX









Sunday, 3 May 2015

FAQ!

Hi everyone!

So... I know a post on my knee is overdue & I do plan to update everyone on this really soon! In the mean time, I thought I might do a super quick FAQ on all things ostomy. The number of people reading this little blog is only ever increasing and I have lovely new readers all the time! Even some of my nearest and dearest don't fully 'get' what an ostomy is all about & an FAQ update feels needed!

Here are just some of the questions I am asked pretty regularly (many by once people have had one drink too many) - it is less about the 'health' side of things and more about the my day to day reality of living life with Margaret...
(All my answers are from my own experiences, I am not a health professional nor do I speak on the behalf of all ostomy owners. Everyones experiences are different.) 

How is the bag stuck to your skin?
- The bag sticks to your skin with a flexible sticky wafer thing called a 'flange' (ewww). This flange has a hole in the centre that you cut in to which fits neatly around your stoma (piece of intestine) allowing it to pop through & collect waste inside the bag. There is an opening at the bottom of the bag which you empty out the waste from.

What does the bag feel like?
- I can't feel the bag on my skin. Thats something a lot of people find really weird, but imagine having a big plaster on your skin! Obviously half of the bag is flapping free so unless I am wearing a stomach wrap or high wasted underwear, the bottom corner can sometimes dig in to my leg. The only times I can feel the bag is when the skin is really irritated, unfortunately for me, this happens a lot of the time. The itching feels like lots of ants crawling over your skin but somewhere you can't quite reach. Imagine trying to scratch and itch with oven gloves on... thats what its like. I have really sensitive skin & seem to be irritated my most things so my skin feels like this at least a couple times a day. Antihistamines help, as does lightly slapping the skin around Margaret. I have to stop myself doing this in public...

Can you feel it when 'output' comes out? (ie. can you feel yourself poo?)
- Nope. In no way, at all. Stomas have no nerves so you can't feel anything. I never have 'the urge to go' or can control how much, when or where my bowels decide to push out waste. I could be sat in traffic, at a shop, watching TV 'poo-ing' away without a clue, it's a doddle! Instead, I empty the bag 5/6 times a day as it fills up.

Does it smell?
- Like when anyone goes to the loo, when emptying the bag the output does smell, nothing horrendous or anything worse than anyone else. Day to day, walking around, you thankfully can't smell a thing!

Can you still fart?
- Unfortunately not. It is something I actually really miss... but obviously my colon is completely bypassed both by poo & gas. Instead gas empties in to the bag and is released when emptying it.

How big is it?
- This depends on the brand or style you use. Mine is a small and so it falls just to the top of my thigh.



What can you eat with an ostomy?
- I can eat pretty much anything. Those who know can vouch for the fact that there is not much that could get in the way of me and food. The only things I avoid are mushrooms, nuts & seeds as they can cause blockages. Popcorn is one thing that I have been advised not to have but cheerfully ignore. I instead drink a hell of a lot of water when eating it & chew really, really well.
I have had to up my fluid and salt intake which is irritating but do-able. I avoid fish or cheese the day before going out as it doesn't produce the nicest smell.

Can you still drink alcohol & go on nights out?
- Yes. Well, I still do. I can't/don't overdo it, I rarely go mad or have more than a couple of drinks at a time. A lot of people don't get this and I do get stick sometimes for yet again going for the diet coke but my body tells me when it's feeling up to it (or not) and I often make the decision to pace myself rather than suffer later.

Can you still swim / do exercise / go on roller-coasters?
- Yes! I can do all of these things and have yet to find something I can't do! I even read an article once on how you can deep sea dive with an ostomy!

Do you still have a bum? 
- Haha, this is something which I have been asked twice, both times by people who had had a little to drink and clearly lost all embarrassment in asking! To me, of course as with most things, there is very little embarrassment and I think a completely valid question! Yes I do. My ostomy is still 'temporary' so nothing has been removed. When it is made permanent, some people go on to have EVERYTHING removed. This would include your rectum etc. & they go on to sew up your bottom end. I'm sorry but even as write this I can't help but laugh. I recently read it being referred to as a Barbie Bum which is the best thing I've ever heard!

So do you still have Crohn's?
- Yes. Unfortunately an ostomy doesn't provide a cure. There is no cure. It is simply a way of managing the disease. This question is something I think I could dedicate a whole blog post to...

Hopefully this gives a bit more of an insight... as always, if anyone ever has any questions they've always wondered no matter how weird, please just get in touch!

Lots of love
XXX


Thursday, 16 April 2015

Tummy Update

Hi everyone,

Again, it has been such a long time since my last post and although nothing huge has been happening I guess things have developed over the last couple of months.

Firstly! I don't know if I've mentioned it before but a couple of months ago I popped back to see my consultant as I found an ulcer on Margaret. I was changing the bag one day, when I spotted a small flat red mark on her, I took a photo (for evidence) but wasn't overly worried. Stomas aren't the toughest things and the smallest bump can make them bleed or cut so I assumed that was probably what has happened. Upon the next bag change, however, the little flat red mark had evolved in to a slightly larger, darker dip in to the flesh with a white-ish centre. It didn't hurt or bleed or produce any other weird or wonderful liquids so I really wasn't sure what to think. As ulceration and active Crohn's has always been on my insides, I had never really seen what it looks like up close, I decided to take to Google to see if I could identify the little thing. BIG MISTAKE! Not only was the list of possibilities huge but the photos were graphic and not particularly pleasant - whatever you do, never ever Goggle Image 'Crohn's Ulcer'...

About a week on, the mark had yet to improve so I took the plunge and contacted my IBD Nurse, sending her my photographic evidence. I'm always a bit apprehensive when contacting my Dr's as in the past it has always lead to more tests, appointments, developments or medication changes - most of the time, things have gotten worse. I have gotten pretty darn great at knowing my body and knowing when things weren't okay, I don't think I have ever received a piece of news that I hadn't already considered and thought was probable. As expected, the IBD Nurse contacted my consultant and I was booked in the following week to be seen.

My appointment day arrived and I went in as usual, my consultant had a new trainee IBD male nurse with her, I introduced myself before talking through my little discovery and removing the bag to show them what it looked like. I always find it really bizarre, that with this kind of disease you meet someone for a matter of minutes before whipping out a private part of your body. 'Hi my names Gabi, now have a look at the intestine sticking out of my stomach'... but I guess they are incredibly used to it and it's pretty impossible for me to be embarrassed anymore.

My thoughts were confirmed and Margaret, the little bugger, had grown an ulcer. This was not the greatest news. Margaret was placed where she was so that all active Crohn's (ulcers) were below her, thus giving that diseased part of the bowel a chance to heal. This discovery showed that there in fact Crohn's above Margaret (and on top of her) meaning that the disease had moved places/spread and my current medication wasn't doing its job properly. Luckily, from the ulcer we could see, and the minimal stomach cramps I was getting, it was easy to assume that the flare up wasn't severe and easily solvable. It was this appointment that lead to the disastrous MRI scan that I wrote about in my last blog post.

A couple of weeks ago I went back to go over all my test results. The good news is that it doesn't seem to be a huge flare and the little ulcer on Marge has disappeared, the bad news is that my Humira injections have been put up to every week again. This isn't a huge deal but is a bit of a faff and nobody likes sticking needles in their stomachs! The other repercussion, which although not mentioned by the Dr's I feel is very true, is that the likelihood of me having Margaret reversed has gone even lower. If my body and the medication I am on can't hold off the Crohn's with Margaret it sure as hell won't be able to do it without. I know I've already been told that it's probably not going to happen but every bit of news like this just makes that all the more real.

On the next post, I'll tell you all about the story of my wobbly joints....
G xxx

Monday, 2 March 2015

My interesting morning...

Hi everyone,

I know it's been far too long since my last post, but life has taken over! I will update shortly but first I wanted to tell you about my rather 'interesting' MRI scan I had this morning.

I received my appointment letter about 5 weeks ago and rang straight away to inform them of Margaret in case that changed anything about the scan. Having a small bowel MRI involves drinking a lot of a pretty grim drink in order to see how it moves through your bowel. You are then given a contrast via a cannula in your arm, so the MRI picks it up. I was assured to come along as normal, with the only difference being that I would be given less of the drink.

I arrived bright and early this morning with my Mum, ready for what I thought would be a pretty easy, hassle free scan. The knowledge that I would be drinking less of the nasty tasting stuff and the fact I have had now had countless MRI's meant I wasn't nervous. On arrival I went through my medical form and was presented with a jug, half filled with orange liquid. I did as I was told, downing a cup full every couple of minutes to ensure that the whole thing was gone within 20. The drink isn't pleasant but is bearable, I've had it many times before so managed to get it down with relative ease.

Once finished I shuffled on through to the scanning room and hopped on to the MRI bed. A fairly weighted guard/brace piece of equipment was then strapped to my body, leaving my legs free but my arms stuck down my sides. It was a snug fit but not uncomfortable. It did however mean that there was quite a heavy item pushing down on my stomach... and Margaret. It did briefly cross my mind that this may not be great for her, but I didn't think much of it, as they knew all about Margaret.

I was given a buzzer to hold in case I needed the machine to stop and was then fed through in to the MRI scanner. I am not claustrophobic but wouldn't say I am the greatest fan of being in tight spaces. MRIs however have never bothered me. They are well lit and normally your legs or head are poking out the end - so I've never really felt trapped. No music was played through my headphones this time but I just settled down to lying still for the next 40 minutes.

Whilst being scanned, a mechanical voice tells you to "breathe in, breath out, hold you breath". It was about 10 minutes in, whilst breathing out that I felt Margaret's adhesive slowly peel off and a wave of fluid spill across my stomach and down my side. My heart sank and I frantically squeezed my little buzzer, unable to move either of my arms or stop the flow from Margaret. On being removed from the machine, I discovered that the drink I had been given was in fact a laxative... which had powered through the little colon I use at a remarkable rate of 15 minutes. What had poured out of me was the exact liquid that had gone in and I was covered in orange squash laxative. The weight & placement of the brace and the fact that I had downed A LOT of laxative fluid before lying very still was a recipe for disaster. I was not even half way through the scan and I was already a soggy, bright orange, mess with the bag hanging off my stomach. In short, I looked a complete state. I went out to my Mum laughing at how ridiculous I must have looked and most concerned about the staining all over my new jumper. We did a pretty good job of taping the bag back to my stomach (thank god for my Mum) and after emptying Margaret, had no real choice but to hop back in to the machine for round 2!

Another 10 minutes later and determined Margaret broke free from her tape and poured once again all over me. At this point I thought, 'What the heck' and didn't bother to press the buzzer again. I wanted the scan to be finished as soon as possible and already looked as if I had gone swimming in orange squash so things couldn't get much worse! I continued to lie there and with every 'breath out' instruction more liquid flowed free. I couldn't help but start to laugh at the pure ridiculousness of the situation I was in. Strapped in to a tube with a ridiculously quantity of orange squash pooling underneath me... What had my life come to!
What felt like a lifetime later, the scan finally finished and I had the cannula removed from my arm. I hobbled out to my Mum in an even worse state than we she had last seen me... I ended up being driven home with the majority of my sodden clothes removed, sitting on a bin bag. My Monday morning certainly didn't get off to your average start.
Thankfully I had the rest of the day free to chill out, I felt pretty sick and headachy after downing the laxative and the speed in which it had gone through me meant I was pretty dehydrated - something which isn't great for any stoma owner. I've tried to relax for the rest of the day, my body aches from holding it in such an awkward position for so long and I have generally felt pretty exhausted from the whole ordeal!!

It turns out that a lot of places don't even offer the laxative to those with an ostomy and I would certainly raise this issue in the future. I've never heard of this happening to anybody else in the past but my advice to any ileostomy owner having this particular scan is to explain the possible consequences of mixing a stoma, laxative and body brace...

XXX

Thursday, 15 January 2015

"Too Ugly For Love" ?!

Hi everyone, 

This week whilst scrolling through Facebook, a post popped up from The Crohn's & Colitis page, highlighting a show that was to be aired that evening on channel TLC, which would include 2 people living with ostomy bags...


"This observational documentary series follows 10 unique singletons, ordinary people living with extraordinary medical conditions, on their quest to find love. All these conditions can be kept secret during a date, and with that comes a whole world of dilemmas"


I thought it sounded mildly entertaining. Along the same lines of 'The Undateables' - a show following a people with a range of disabilities on the quest for love. I guess it would highlight these various issues and medical conditions, bring them to the publics attention, showcase a very real problem of having a 'hidden disease'. Nothing wrong with that I guess & it is not the show I really have a problem with. What disgusted me was the title that TLC chose to use.

Too Ugly For Love (?)
(The question mark is inconsistently used but makes no difference. Without it is a statement, with it is asking the public for their opinion.)

Now I am obviously speaking from the IBD/Ostomy stand point but this show includes people living with such things as, alopecia, ostomy bags, severe burns and missing limbs  apparently conditions which OBVIOUSLY deem them far, far to ugly to find or be loved. Cheers TLC!

I would like to think I am relatively thick skinned and resilient - I was able to brush off the title with a laugh and a strongly worded OFCOM complaint. But to the teenage girl who has just had an ostomy fitted, or the terrified man on a waiting list to have one, the news that they could now be considered 'ugly' would be a pretty low and confidence crushing blow, no doubt voicing private worries they have themselves.

Having an ostomy is a huge lifestyle change, it takes its toll and a while to adjust. From my experience, initially your confidence is knocked, your body doesn't look how you want it to and you'll worry what people might think. Then to be publicly told that you are too ugly for love, is nothing shot of vile. 

Some may argue that the show does positive things for raising the exposure of IBD and ostomy bags, bringing it to the attention of the UK public. I would argue that this kind of exposure is far from positive. Portraying those with ostomy bags as so widely different from 'normal' people that they need their own dating show only compounds an idea I hate. Yes I have Crohn's, yes I have an ostomy and aside from going to the toilet in a slightly different way, I am the same as every other person walking down the street. The show highlights an insecurity that is not exclusive to those with medical conditions but effects everyone who has ever had low self esteem, felt insecure or low in confidence - if you ask me thats nearly everyone at some point in their life. 

Judging by the hundreds of comments, tweets and posts in Crohn's support forums I have read today I am not alone in my views. It is also heartbreaking the number of people who have been upset and negatively effected by this title. TLC you should be ashamed. 

xxx

It is also important to note that I am in no way judging the people involved in the show. Marcia who is involved with the show and has an ostomy responded to the outcry with her own statement here - highlighting that she was unaware of the shows name until filming was almost complete. Antony, who also features with his ostomy, explained in his statement that the shows name was changed last minute. I think they're very brave and were only ever taking part for positive reasons.