IBD Family, forCrohns, Marshalling

Afternoon!

Firstly, I just want to mention how overwhelmed I am in regards to the likes and shares via Facebook that I have received as well as the lovely comments about my blog so far, I really wasn't expecting such a beautiful response. Thank you all.

I just wanted to take the opportunity to talk about my past few days and the importance of fellow crohnies to me.

On Sunday I marshalled a 10km run for forCrohns. forCrohns is a fabulous charity which was created by 2 daughters who's mothers both live with Crohn's Disease. They are the only charity in the UK who are solely dedicated to raising awareness and funding research into Crohn's Disease. They really do some brilliant work which is why it is important to me to help them how I can, so marshalling the 10km each year works well for me :)

I am still suffering quite a bit from fatigue even though it really is improving day by day. However I knew there was no way I could stand marshalling for a few hours as well as walk the length of Hyde park! So as mentioned in my previous post, the lovely Kelly from "A Spell for the Unwell" arranged wheelchair hire for me so I could still marshal the event.

Thank you Kelly for the Wheelchair!

Sarah and I were down to Marshal, and Hayley came along with us. As usual we were apparently the loudest marshals on the route! It's great cheering all the walkers and runners on for such a good cause, and most of them seemed to appreciate the encouragement!

Hayley and I 

My lovely friend Vicky did the 10km walk even though she is not long post surgery, and she did an amazing job. We met up with her at the end, as well as met up with Lance, one of the kindest, most humble souls I know. We all then went for lunch at the intercontinental hotel which was absolutely amazing, and the public loos were gorgeous so Jimmy was also impressed!

Selfie in the Intercontinental Hotel

Speaking of Jimmy, he was on his best behaviour that day. No leaks! I was concerned as our marshal point was nowhere near a public loo, however Hayley reassured me and put me at ease! It is great having friends who have been there and done it and have a great understanding!

It's the small things that people take for granted, like the public loo situation, that I think can be the hardest thing for Crohn's sufferers. We always have to be aware of our surroundings and know things such as where the closest toilet is or how long until you would be able to reach a toilet. People generally don't notice but I am always scoping a new place out and have a bit of fear, even before Jimmy was in the picture (but especially now Jimmy is in the picture).

Anywho, back to what I was saying. It's days like Sunday that make me realise how lucky I am to have such an amazing "IBD Family." I have been lucky to know Sarah for 13 years, and if it wasn't for her I probably wouldn't have been diagnosed when I was. I can remember like yesterday texting her about all of my symptoms, and her saying she thought it was Crohn's, and to go and request a colonoscopy. Thank goodness she said it when she did! We have always been close friends since school but I think that common ground gives us something extra special in our friendship :) As for Hayley,Vicky and Lance, I could go on for ages about them too. However I haven't asked their permission to mention them in my blog (lol, oops) so I will stop here. Just know they are all amazing in their own special ways and I really don't know where I would be without all of them, either to hear me moan, ask for some advice or just generally chat about shit that isn't IBD related (or go on amazing holidays, Hayley!). So if you guys are reading this, Thank you :)

That's not to say there aren't other amazing individuals with IBD that I am in contact with who just weren't there on Sunday. Even just recently I have been talking to some absolutely amazing people and we are all trying to arrange an afternoon tea for the ones that we/I haven't met/don't see as often due to distance. All have their own story but also understand that Crohn's doesn't own a person and there is life alongside Crohn's, which is the type of person I really connect with. There is always someone worse off, plus filling your life with your own negativity will just make you worse in my opinion, so I can't be dealing with people like that. Soz.

I then went to watch NFL at my friend Laura's house and Jimmy still was on his best behaviour. To be honest I was shocked, it is like at the moment I am always on edge waiting for a leak to happen, but hopefully that feeling will go soon.

Yesterday I was absolutely shattered. I think I may have overdone it on Sunday; even though I wasn't doing a lot, I was doing things all day. I need to remember I have had a big operation, but it is hard when I feel so well apart from the tiredness. I NEED to get back to swimming as I know that will help my fatigue, but I still have to wait for a couple of wounds to heal. Hopefully in a couple of weeks I can get back to it.

As for my e-cigs, they still haven't arrived. However I am definitely not smoking as much as usual, so watch this space.

I hope you all have a lovely week!

Love x

What is Crohn's Disease? What are Fistulas? What is an Ileostomy? These, plus some other questions, answered.

Good morning all.

I thought it would be a good idea to spurt out some facts, as well as some common misconceptions, as well as tell you about my evening last night. Please bear in mind that I am not a doctor. Be prepared for a long one!

I suppose a good place to start is...

What is Crohn's Disease?

Let's start with a definition from Crohn's and Colitis UK, a charity I am much involved with (I volunteer on their support line as well as raise money):

"Crohn’s Disease is a condition that causes inflammation of the digestive system (also known as the gastrointestinal tract or gut). Inflammation is the body’s reaction to injury or irritation, and can cause redness, swelling and pain.
Crohn’s Disease is one of the two main forms of Inflammatory Bowel Disease, so may also be called ‘IBD’. The other main form of IBD is a condition known as Ulcerative Colitis.Crohn’s is sometimes described as a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission) as well as times when symptoms are more active (relapses or flare-ups).At present there is no cure for Crohn’s, but drugs and sometimes surgery can give long periods of relief from symptoms."

Awesome. However I feel this is a very broad definition (thanks internet). It can give a layman a decent overview, however it is much more than this. Everything said is true however please just bear in mind this is broad. Let's look at some of the symptoms:

"• Abdominal pain and diarrhoea. Sometimes mucus, 
pus or blood is mixed with the diarrhoea.
• Tiredness and fatigue. This can be due to the illness itself, from 
the weight loss associated with flare-ups or surgery, from 
anaemia (see below) or a straightforward lack of sleep if you 
have to keep getting up in the night with pain or diarrhoea.
• Feeling generally unwell. Some people may have a raised 
temperature and feel feverish.
• Mouth ulcers
• Loss of appetite and weight loss. Weight loss can also be 
due to the body not absorbing nutrients from the food you 
eat because of the inflammation in the gut.
• Anaemia (a reduced level of red blood cells). You are more 
likely to develop anaemia if you are losing blood, are not eating 
much, or your body is not fully absorbing the nutrients from the 
food you do eat. Anaemia can also make you feel very tired."

Again, all true. However symptoms vary dramatically from person to person. As the most common place to develop crohn's is the ileum (last part of the small intestine) or colon, these are probably your most likely symptoms. However, in my case, my crohn's is at it's prime in the perianal region. This means I deal with daily pain in my bottom end, abscesses and fistulas. They leak pus, they hurt, wind passes through them and sometimes even faeces (not now of course, as I have jimmy).

What is a Fistula, I hear you ask?

It's very hard to explain. Luckily, thanks to Crohn's and Colitis UK, I have a definition for you as well as a diagram:

"A fistula is an abnormal channel or passageway connecting one internal organ to another, or to the outside surface of the body."

These can happen in many places, however I will focus on perianal:

"These connect the anal canal (back passage) to the surface of the skin near the anus. These are the most common form of fistula and are often associated with an abscess around the back passage"

Fistulas: Thanks to CCUK

Lucky me, I have high fistulas which are complex, meaning they are harder to treat. There are loads of different ways in which to "treat" fistulas, but if they work is another story unfortunately. I currently have seton stitches in mine, please see below.

Seton Stitch: Thanks to CCUK

This is a soft plastic thread which is passed through the fistula and out through the anus. It is then tied to  form a loop with protruding ends. They use these more so in high fistulas as laying them completely open would most likely result in incontinence, as they go above the anal sphincter muscle.

ANYWHO, as you should know from my previous post, I now have an Ileostomy. This is to hopefully allow the fistulas more chance of healing, as bowel movements won't be passing through the fistulas.

What is an Ileostomy?

Now I'm a bit lazy, so I have attached a youtube video. What I have is a loop Ileostomy (skip to 3mins into the vid). If you go back a bit though you can get a bit more info in general about ileostomy.
Click here: Ileostomy Explained
It is hoped that this will be a temporary thing, however I am living with the thought that it could be permanent if things do not work out, then I can only be pleasantly surprised! 

Some common questions answered.

I'm sure many crohnies can relate to this, so I wanted to clear some things up.

Is it true that junk food causes crohn's? NO. They do not know what causes, or cures, crohn's. As a child I had a good diet, I wouldn't say much different to most. So basically, no.

Would changing your diet so it was more healthy help your crohn's now? NO. Every person with crohn's disease is different, and may have "trigger foods", which cause their symptoms to flare. In my case, my trigger foods are mostly "healthy" foods, such as apples. My go to foods in case of a flare are pizza, white bread and cheese. Think what you like, but it works for me. This doesn't mean I don't generally try and keep to a healthy, balanced diet though.

Surely you should stop smoking? Yes, you're right. The chances of surgery dramatically increase if you are a smoker, so I am not helping myself at all and I am aware of that. I quit after diagnosis for 9 months but here I am smoking 15-20 a day. Since my Ileostomy my smoking has cut down a lot, and I am waiting for my e-cigs to arrive so I can gradually get off the ciggies.

Is Crohn's Disease like IBS? NO. I can't even be bothered to explain this, sorry. It is a huge frustration. Google will teach you that they are very different :).

Rant.Over.

ANYWAY...

Enough of all that, I hope it has given you a bit of an insight.

Last night I went to dinner with my lovely Tash, and went to see the inbetweeners 2. Hilarious! Jimmy was on his best behaviour thank goodness, however my bottom end was not. When they did the ileostomy they also butchered at my bottom end, removing one stitch and laying past of a fistula open, resulting in 2 huge open wounds, ouch. Anyway they decided to bleed like hell last night, I have no idea why, but all is calm again in the Lindsey household.

Don't know why I'm standing in such a way. Anyway, me and Jimmy ready to go to the cinema

Today I am going to take it easy, as tomorrow I am marshalling a 10km for a brilliant charity called forcrohns. Please take a look at their website, as they are awesome. Also, applications for the 10km are open until 9pm tonight!! You can run or walk it, and it's a gorgeous route (around hyde park).

www.forcrohns.org

Luckily a fabulous lady called Kelly who runs a new charity named "a spell for the unwell" managed to hire me a wheelchair, which will be perfect to get around at marshaling,  as i get tired so easily and Hyde park is a bit big! A Spell for the Unwell focus on giving financial and emotional support to young people with chronic health conditions, please take a look at her website:

www.aspellfortheunwell.co.uk

Anyway I feel like I am getting RSI from all of this typing, so I'm sure I will be back on in the next day or so to let you all know how the 10km went. 

xox

Introductions

So I have seen many people blogging and always felt I did not have the time or need to do the same, however suddenly I now feel this is the time to start! 

So here is a bit of an "about me"...

I'm Kelsea, a 24 year old from south london/surrey. I am a qualified gym instructor who worked in the leisure industry for 5 years (this will be relevant later on!) And enjoy swimming, exercise classes and the typical "socialising" that everyone mentions.

My life was pretty normal up until my diagnosis, I was a normal teenage girl doing normal (maybe a bit naughty) teenage things!

At the age of 19/20 after approximately 6 months of constant abdominal pain and vomiting, I was diagnosed with crohn's disease (November 2010). This was during my final year of an IT degree, resulting in me not being able to complete exams, however I was still given a degree (just not an honors degree).

I had my first operation (a laparoscopic right hemicolectomy) in April 2011, after being on a liquid diet for 8 weeks prior. This seemed to be a great success in removing a hugely ulcerated and narrowed section of my bowel. I believed this was the start of getting back to normal, with the help of my medication.

Things very quickly went downhill in May 2011, when I developed my first perianal abscess. Between May and now, I have had approximately 10 operations due to perianal crohns disease, such as insertion of seton stitches, laying open of fistulas and abscess drainage. I currently have 4 fistulas with seton stitches in situ.

Going back slightly, I decided to start a degree in midwifery which commenced in 2011 which I thoroughly enjoyed. However, during my second year I started to notice the strain a course like this was putting on my health, however I decided to ignore it. In 2013, whilst in Canada seeing family (and being in remission bowels wise since my hemicolectomy), I had a bowel obstruction which resulted in me being close to death on the plane home and being blue lighted to hospital for an emergency laparotomy. 

My (very neat, thanks to my surgeon) laparotomy scar

It was a few months after this (beginning of 2014) that I decided I needed to have a break from midwifery with the possibility of returning in 2015. My health was deteriorating, my perianal crohns meant my mobility was affected, and my anxiety and depression was getting worse, resulting in me having to be medicated for this for the first time and having to return to counselling (which I hadn't had since 2011). I was completely stuck in a rut with no idea what my next move would be health wise,  what I would do for money etc. It wasn't a fun time!

The decision was made with my surgeon to go for a temporary ileostomy to give my bottom end a rest, and hope that the fistulas may heal with time.

Present day: i had my ileostomy surgery on 21st August, so just over 2 weeks ago. It was a keyhole procedure and I surprisingly feel pretty good, just tired and not enjoying waking up covered in my own mess or having accidents in restaurants! However i appreciate it is still very early days and luckily I have a huge support network, including people with ileostomies, who ensure me it will improve!

3 days post op at hospital with Jimmy, looking very rough and bloated!

I was discharged from counselling at the beginning of August and mentally I feel better than I have in ages. I of course have down days as I am having to completely adapt to life with Jimmy (my stoma), however as a whole I am ready to get my life back. I'm waiting to see my surgeon for a follow up and see what the plan of action is now the ileostomy has been done.

I have been offered a job as a front of house manager/member service manager for a leisure centre which is brilliant as leisure is my forte! I am due to start this at the end of this month which is very exciting. I feel this role will be less stressful and suit me better for now in my road to recovery.

I have also decided to try for the second time to quit smoking,  with my set of e-cigs currently in transit. 

This blog will mostly be me probably talking a lot of rubbish about how I am getting on, mainly focusing on my road to a healthy lifestyle and getting back into fitness, starting with swimming (as I will need to do my lifeguard qualification at some point soon!) And my determination to stay off the fags this time!

I appreciate some terms on here may not make sense to some, but I plan to write something a bit more factual about crohn's disease as well as ileostomies at some point, probably tomorrow. Or you can comment and ask me what certain things mean.

I hope you enjoy reading about my journey!

Much love :) xx