The Basics of Crohn's Disease

Seeing as it's National Invisible Chronic Illness Awareness Week I decided to write a post that explains the basics of Crohn's Disease. It used to amaze me that people know so little about the illness, but in reality, I knew nothing of it until I was diagnosed and Googled like there was no tomorrow. Now I consider myself an expert in terms of being a patient. If you've never heard of it before, brace yourself!

For some reason I'm usually always asked, "What is Crohn's Disease?" over dinner or at a gathering, and in both settings the same effect takes place. *Cue silence* *all eyes on me* *sweaty palms and upper lip* Fortunately I've never been asked this over dessert, it would bring a whole new meaning to Chocolate Dessert wouldn't it? (The Chocolate/Poo Pie scene in "The Help" (2011) comes to mind). I'm probably still one of the most squeamish people I know, but educating you in this forum is so much easier than trying to explain it face-to-face. So to stop the awkward dinner questions, here goes...

Crohn's Disease - What is it anyway?

Quite simply CD is a chronic (long-term) condition that causes swelling to the lining of the digestive system - that's anywhere from the mouth to the back passage. It can affect people of all ages, including children, but research suggests that most cases develop between the ages of 16-30. (I started experiencing symptoms at 16 years old). 

A large percentage of cases find that swelling mainly occurs in the last section of the small intestine (ileum) or the large intestine (colon). If you're wondering where it affects...so am I. Only joking, mine's in the colon.

When the intestine becomes inflamed, the most common symptoms that can occur are:

• Diarrhoea 
• Blood and mucus in your stools (poo)
• Abdominal cramps - not the same as Period Pains at all
• Fatigue
• Weight loss

How did you get it?

In most patients, the exact cause of CD is unknown, so I can never really answer this question. However researchers believe it is a combination of a few factors, but again, their suggestions can be problematic. See here for some of the causes.

Treatment

At present there is no cure for CD, but symptoms can be improved through treatment. This is usually in the form of Corticosteroids to reduce inflammation. (Yes these are the Steroids that fuelled my weight gain *straight face*) They also prescribe medication to suppress the immune system so that the intestines stop attacking itself. Because of this, the Flu Jab is usually recommended during this time as you're prone to getting "ill" quicker. That's right, the treatment causes more illnesses - welcome to my reality. Also, regular blood tests must be done to monitor the white blood cell count.

It can take a long time before we're completely symptom free, but when we are, this is known as being in remission. However, that doesn't mean the symptoms won't flare up and become difficult to manage again. For a full list possible treatments, see the NHS Website.

In severe cases, some CD patients undergo surgery to remove the inflamed part of the diseased intestine and stitching the healthy sections back together. This is called a resection. Others undergo a procedure called an ileostomy, which redirects the digestive waste from the inflamed colon allowing it to heal. For more information on this procedure, read the NHS' introduction to the Ileostomy.

What's next then?

The Gastroenterologist - man I feel so smart typing that without error - or the gut specialist as I like to call them, will advise on the numerous options available. For every CD survivor, our main goal is maintaining remission. That means we want to live each day without being forced to take what feels like 101 tablets that leave an awful after taste. However, this doesn't mean we come off medication entirely. Some patients may choose to use natural products to help them, but as I've stressed before, no two cases are the same so that might not work for everyone. Either way, whatever path chosen, the patient will need to attend regular follow-up appointments. (Note to self, get blood test form and actually get the test done).

Another way to maintain remission is through diet as some foods can aggravate the intestines. For me, too much Fruit, Veg and Whole Grains have me stuck to the loo. I actually like fruit and veg so it's a bit annoying, but I figured out a way to eat them without upsetting my stomach. I kept a food diary and worked out which items were fine and the ones to avoid like the plague (Cabbage and Pineapples are the worst).

Finally, it is important not to get stressed as symptoms tend to worsen when a patient is under stress. You know what that means? Everyone *clears throat* back off...please because "I'm too blessed to be stressed." (I asked nicely!) Stress takes us back to the flare up stage and the treatment cycle begins again, just help us out by being nice. I understand everyone will face stress in life, but you have to find ways to eliminate stress so that it doesn't take it's toll on your body. Low intensity workouts like swimming or walking definitely helps, as does *cough* retail therapy - you're still walking aren't you? 

So for everyone who wasn't familiar with the weird and wonderful disease - cannot believe I just said that - I hope this gives more of an insight into what us Crohnies go through. Now when someone mentions they have it, or know someone with it, you won't need to ask them what it entails, you already know. It was much easier sharing it on here than I thought actually. Maybe I'm becoming less squeamish *checks mirror* Nope, I'm still blushing...never mind.

Please share to help raise awareness of Crohn's disease and always remember to stay fabulous and keep smiling.

Sam. xx

Be Positive

Yesterday was one of those days that had the potential to take me back to an extremely low place physically and psychologically. I had to leave work almost as soon as we opened so that I could get an emergency Doctor's appointment. I was experiencing the worst kind of stomach cramps; cramps so painful that stopped my speech mid-sentence. I’m used to just getting on with things, but this I couldn’t ignore, especially as I began to walk like a Penguin to try and ease the pain.

I couldn't quite pull off his moves

Surprisingly, I left my work place feeling calm while trying to be more Cara Delevingne, less Mumble (Happy Feet - penguin waddle). Normally I would've started to panic and run through every worst-case scenario it could possibly be. A flare up? Bowel Cancer? Will I need surgery to remove the diseased intestines? But I didn't this time; I simply decided to find out what was wrong. It's so easy to exacerbate every twinge we feel in our bodies because we're so used to bad news with Crohn's. Well let me tell you now, stop doing this, it's not healthy! We don't allow ourselves the chance to be told how it can be managed, we jump straight into "life is over" mode. If this is you right now, shake yourself - literally - and get a grip! *Shakes self*

Couldn't have said it better myself.

My Doctor confirmed that I'm not experiencing a flare up, it's simply a case of - forgive me for being so graphic - Piles (Haemorrhoids). (To find out more about them, if you dare, click here). I was still in the "are you sure that's all it is?" mode, and looking into my Doctor's eyes to see if she was trying to hide bad news from me. But it turns out, that's what it was. Although it wasn't amazing news, to me, it was good news despite the pain. At that point I realised that my relaxed attitude helped me get through it - well that and the fact that I didn't need an internal examination! (Not a nice experience but has to be done now and again).

So true!

Today is a better day, and although I'm still in pain, my mindset doesn't tell me it's the end of the world. Don't get me wrong, pain is awful and right now, Buscopan (IBS relief) is my best friend, but I won't allow myself to stay down, and I won't allow you to either. If you need to cry, go ahead, I do and did when it was necessary - and sometimes when it wasn't necessary - but if it helps, let it out. There's nothing wrong with crying, you usually feel better afterwards too. Just don't let it consume you and become the only thing you do.

LOL - Crohn's humour that keeps me smiling!

Why am I telling you about this? Because how you deal with bad news about your health - or anything else for that matter - today, tomorrow, or in the future determines how well you'll get through it all.  And no, crying doesn't mean you're weak and won't get through it, it just means you need to release some built up emotions. Perhaps Freud would call it the Weeping Cure? (I studied his work in Literature and Psychoanalysis, there's a name for everything). Freud might say that crying relieves the patient of "emotional sufferings". (Ok, I'll stop now - I clearly miss studying). But you see where I'm coming from, a certain amount of crying helps. The main thing is how you move forward.

See the funny side of things.

It's important not to over think a situation, let things happen without obsessing over what it may or may not turn out to be. I used to do that, and the only thing that came out of it was a guaranteed headache. I was feeling really rotten yesterday but told myself that I had to get out of bed and stop feeling sorry for myself, and it helped. I also put on Finding Nemo just so that I could hear Dory sing, "Just keep swimming". Call me childish, but I thought it was a great movie.

Just keep swimming!

I guess when all is said and done the only person that has the power to change your thoughts is you. Don't stay stuck in a rut, get up, get out and do something different. If you want or need help there are plenty of people waiting to help you, all you need to do is ask. I'm one of them too, I talk a lot, but my name actually means "listener" so I'm here whenever you need me. If not, there are lots of places you can get support, the IBD Community is massive. Things will get better one day, just be patient and learn to smile through the hard times and talk to someone about how you're feeling. You matter, your feelings matter and you are important.

I love you all so please remember to stay fabulous and keep smiling.

Sam xx