Thursday, 29 June 2017

Hello again square one. I've been expecting you!

A recent hospital visit has concluded that I have pouchitis, yet again.

It was only a few years ago that chronic recurrent pouchitis was a major issue for me. It was resistant to Ciprofloxacin and Metronidazole didn't agree with me. It was not aided by VSL#3 and remission became dependent on being on > 20mg of Prednisone. Budesonide (Entocort) had no effect.
Azathioprine eventually helped me achieve remission but this was short lived, although I was grateful for the few months I had, free of disease activity!

I was supposed to start Infliximab and had the initial scope to determine disease was active, chest X-ray and bloods to make sure I was a suitable candidate for the treatment. At the same time I was also undergoing investigations at a second hospital as I was adamant that the extreme abdominal pain was not Pouchitis and my current hospital had disagreed, so I requested a second opinion.

Before the Infliximab started, an abscess and twist were found in my intestine which I underwent emergency surgery for at the hospital I'd been referred to. This resulted in a temporary ileostomy due to the pouch being damaged during surgery. The resulting few months of 'pouch rest' were great for my pouch and I finally achieved remission.

I've been having some Pouchitis symptoms since last year, but it's been on and off. I didn't feel like the inflammation in my pouch was a constant thing, so had assumed it was irritable pouch related rather than active IBD and had been trying different methods of management at home. When I began bleeding I contacted my IBD team, did the usual blood test and stool sample and then paid a visit to endoscopy. I have never bled as a symptom of Pouchitis, so it seemed odd to me, but there are ulcers in my pouch which were obviously the source of it.

I find it frustrating that you learn how your body works so that you can identify a flare beginning, but then the symptoms change?! The unpredictability of IBD often makes it difficult to manage.

It had already been said that if I was to have Pouchitis again, the treatment plan would start again from the beginning, in accordance with the St Mark's Pouchitis Protocol that had been used previously. My hospital are now using the ECCO treatment framework, but it's basically the same thing.

Admittedly I had a little 'episode' of, I don't know, frustration? Anger? Basically I was having a paddy whilst in with the gastro, and had to give myself a swift mental slap because starting over and taking meds that haven't worked in the past, makes me want to bash my own head in >.<

I am happy to have left the hospital with a plan that tells me what's next, if / when medications don't work. It's just that, I'm at THAT stage where I'm really really fed up of feeling unwell.
I am currently taking Ciprofloxacin and VSL#3 for 4 weeks, again.
If there's no improvement I"ll take Budesonide for 8 weeks, again.
If there's no improvement I'll have Infliximab infusions.
And we all know what happens after that..

I'm crossing my fingers and hoping that medication that has previously failed to help, will this time, and I suppose there's nothing to say that they won't, due to the aforementioned unpredictability of IBD!


Wednesday, 28 June 2017

When people that don't understand the cause and management of IBD make statements about them

I 100% understand the frustration of IBD patients when people that obviously don't understand Crohn's Disease and Ulcerative Colitis make incorrect statements about the cause and management of them.

However, I do not understand why this results in name calling and insults! To me, this just proves that there's a very long way to go in terms of raising awareness and educating people about Inflammatory Bowel Disease. It should be seen as an opportunity to educate people calmly and respectfully!


If their response makes it clear that they're unwilling to listen or be educated, by all means inform them what a massive douchebag they are, but until then, the drama and nastiness is unnecessary!
Why is respecting others so fucking difficult for so many people? Did your momma's never teach you "If you don't have anything nice to say, don't say anything"?

If your momma didn't teach you, surely Thumper in Bambi did?



Source: My Facebook profile

Saturday, 10 June 2017

Waiting | Poem

I’m lying in bed waiting for doom,
I know it will come sometime,
More than likely soon,
I don’t know when it’s coming or when it will arrive
But it’s on my disappointment that joy does thrive.
There’s a knock on the door ‘we’ve come to take you away!’
I sit in silence, what more can I say?


This was a poem I wrote when I was around 15 years old. Kinda depressing huh? It won a competition anyway... 

Wednesday, 7 June 2017

Do you know how many of your health issues are actually IBD related?

The list of extraintestinal manifestations of Inflammatory Bowel Disease is extensive. Those newly diagnosed in particular, could easily not realise which of their other conditions are actually related to their IBD.

I have been guilty multiple times of linking things to IBD when I have been unwell, which have turned out to be completely unrelated, and I should in fact have sought help for sooner. Equally, I have not linked things to IBD (or the medications I am taking to treat it) and been completely off the mark there too!
I like a list, and I feel this is the perfect time for numerous lists, for simplicity and clarity. Please remember I am not a doctor and this is by no means a complete list. I have no doubt some of you will spot something I have missed.

Primary symptoms of Inflammatory Bowel Disease:
Stomach cramps / spasms
Fever
Diarrhoea and / or constipation
Bloody stool
Decrease in appetite / Weight loss
Increased wind (which is actually a sign of the intestine being inflamed)
Tenesmus

Secondary symptoms and other autoimmune conditions related to Inflammatory Bowel Disease:
Fatigue
Strictures
Nutritional deficiencies
Fistulas
Anaemia
Skin tags
Anal fissures
Malabsorption / Malnutrition
Blood clots (including DVT)
Thinning / weakened bones
Depression
Anxiety
Joints (pain, swelling and inflammation)
·         Arthralgia
·         Peripheral Arthritis
·         Axial Arthritis / Spondylitis
·         Ankylosing Spondylitis
Oral
·         Aphthous ulcers
·         Canker sores
·         Herpetiform ulcers
·         Dental cavities
·         Periodontitis
Eyes
·         Episcleritis
·         Scleritis
·         Uveitis / iritis
·         Keratopathy
Skin
·         Erhthema nodosum
·         Psoriasis
·         Pyoderma gangrenosum
·         Rosacea
·         Acrodermatitis enteropathica
·         Pyoderma vegetans
·         Vasculitis
·         Vitiligo
·         Clubbing
·         Sweet’s syndrome
·         Eczema
·         Epidermolysis bullosa acquisita
Kidneys
·         Kidney stones
·         Enterovesical fistulas
·         Ureteral obstruction
·         Uric acid stones
·         Hydronephrosis
Liver
·         Hepatic Steatosis / Fatty Liver Disease
·         Cholelithiasis
·         Primary Sclerosing Cholangitis
·         Pericholangitis
·         Cryptogenic Cirrhosis
·         Autoimmune hepatitis
·         Gallstones
Rheumatoid arthritis
Fibromyalgia

Side effects of medications include but are not limited to:
Acne
Joint pain
Thinning of the skin
Increases susceptibility to infection
Fatigue
Hair loss
Insomnia
Thinning / weakened bones
Nausea
Increased risk of lymphoma and skin cancer

It’s always worth seeking advice from a GP if a new health issue occurs as even if these are IBD related, they can be treated with different medications.

I hope I made my point here that Inflammatory Bowel Disease is MUCH MORE than a disease only affecting the intestines..