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