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Thursday, 20 March 2014

What The Diagnosis Says // My IBD Journey

This blog post is a health update of what the diagnosis is, what the previous hospital appointments have said and my personal observations and feelings about everything at the moment.
If you want to know then read ahead but I wanted to clarify, I'm not an expert and people have different views and opinions when it comes to IBD as there is no direct link to its causes. This is just my journey with IBD.

My Diagnosis

In the last post I went through my colonoscopy experience and explained that biopsies were taken and that I had to wait for the results.
I have been officially diagnosed with having Ulcerative Colitis. Thankfully the biopsies showed no signs of cancer or cancerous growths which with the waiting was a worry.

To clarify a little more; Ulcerative Colitis or UC is a form of Inflammatory Bowel Disease or IBD that affects the large bowel and rectum. It is a chronic condition that causes inflammation and ulcers. It's life-long condition, there can be periods of remission and times of relapses/"flare ups". UC has various forms:
- Proctitis - Inflammation that is only found in the rectum.
- Proctosigmoiditis - Inflammation from the rectum to the sigmoid colon.
- Left Sided Colitis - Inflammation that begins at the rectum and continues into the left side of the large bowel
- Extensive Colitis or Pan Colitis - Inflammation that affects the entire colon.

What Ulcerative Colitis Does

The large intestine is responsible for stool changes, with UC the inflammation causes loss of the lining of the colon. This leads to complications such as bleeding, loose bowel movements and abdominal discomfort.
The common symptoms of UC included: anemia, fatigue, fever, loss of appetite, loss of bowel function, weight loss, rectal bleeding, loss of nutrients and nausea. 

Whilst UC can develop at any age, it is most commonly found in people between the ages of 15-25. Men and Women are equally as affected by this. 

Treating Ulcerative Colitis 

There is no cure for UC and though every case is different, treatment has taken leaps and bounds in the last couple of years. It is mainly tablet based, although UC can be controlled with injections, intravenous treatments and/or suppositories. 
A common medication, which most people start with, is Mesalazine or Sulfasalazine as they have been found to respond well to the inflammation of the intestine and prolong the risk of flare-ups. If the case is very severe then surgery may be required, it is estimated that around 30% of people with UC will have surgery at some point in their life and that it is commonly performed to form a stoma to attach a colostomy or ileostomy bag.
The most common way to diagnose Ulcerative Colitis is by Colonoscopy, I have previous blogged about my experience of this.

My Appointment

When I finally had the appointment that concluded everything, it was a relief. Being ill for so long and coming in to find a plan with taking Octasa tablets made me feel as if someone was finally taking my pain seriously. I was very lucky that no surgery was needed straight away as I am classed as having a severe case. I will need a check up every three months with a blood test and discussion of how the medication is working. I have started to do better than I maybe realise. I've developed anxiety with everything going on, so I double guess myself a lot.

How I'm Feeling

Since the first hospital appointment, it's fair to say that starting out on steroids was tough. They control the flare up but the side effects can make you feel like they aren't worth taking. For the first 2 weeks I was fatigued and had muscle weakness. I broke out on my forehead, nose and chin which isn't the biggest thing they're just spots, but when you go through a stressful, emotional time, everything starts to frustrate you.
Steroids really affect your hunger. Even as I begun weaning off the steroids I still never felt full and it wasn't like a starving feeling, more a dull hunger feeling, so I grazed between meals and in evenings.
One thing to remember is that the boost you have is only temporary, which sucks but it doesn't necessarily mean that you'll instantly go back to feeling the way you did before and having the same situation with every bowel movement. I have found that the "urgent" feeling can sometimes come up unexpectedly but you can hopefully get better control once your medication starts working.

I have been on Octasa tablets for nearly a month and off the steroids for about 3 weeks. The boost from steroids won't last so fatigue was my main gripe. Despite the side effects, I was very scared of coming off the steroids. In my first blog post about the beginning of my journey with UC I mentioned how I had been misdiagnosed for so long. In that misdiagnosis of IBS I was just given tablets and told its trial and error to find the right ones for you and I didn't want to experience that over and over again. On the steroids I went out more and was able to feel like myself again and I came to have my confidence back. I may not be completely the same on Octasa as I was on steroids but I have to see how it goes.

So far I have been out with my friends more times in one month then I have for the past year. I will be honest and say I have had some bad mornings and bad spouts but eventually I will adapt to it all. I am just staying as positive as I can as I know this is something I will live with.

You Are Never Alone

If you feel like your alone in this you're not! I am always here if you want to message me or comment below I found comfort in talking to people online in forums and on Tumblr. 
One person in particular is Hanna who has a tumblr called Life according to crohn's. Crohn's is a form of IBD and I found Hanna's tumblr when researching. I found someone who got what I was feeling and her posts are informative, honest, positive and funny. Thank You Hanna, for being there for so many people and being such an amazing person. 

As always, thanks for reading...

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