When I talk about IBD Im often faced with blank stares and so here is my A-Z guide to Inflammatory Bowel Disease… Please remember that I am not a trained medical person and these are my opinions only. Always speak to your GP, doctor or nurse about any worries or concerns you have. xx
A is for Ass – IBD covers both Ulcerative Colitis and Crohns and is a disease of the digestive system, Ulcerative Colitis is a disease of the large intestine whilst Crohns affects anywhere from the mouth to the anus. They cause diarrhoea and bleeding and so sufferers have to deal a lot with their ass (or arse if you’re from the UK) – My site name came from my nearest and dearest regularly asking me ‘how’s the ass?’ and my reply being ‘I’m so bad ass right now’
B is for Bowels – Your bowels or intestine go from your stomach to the anus and consist of the small and large intestine, the small intestine begins at the duodenum, which receives food from the stomach, the duodenum transmits food to the ileum. The large intestine consists of the colon and rectum. The colon connects to the rectum, and finally the anus. IBD can affect all the parts of the bowel and causes pain, cramps, bloody diarrhoea.
C is for Colectomy – A colectomy is the name of the surgery that I had in 2013 and consists of the surgical resection of any part of the large intestine. I had a sub total colectomy which means they removed all of my colon apart from the rectum.
C is also for Colostomy – Most people have heard of a colostomy, which is a surgical procedure in which a stoma is formed by drawing the healthy end of the large intestine or colon through an incision in the abdomen and suturing it into place. This allows waste to leave the body and be collected in a bag.
D is for Diarrhoea – not the nicest thing to talk about but one of the biggest symptoms of IBD. Imagine that time you got horrific food poisoning or the worst stomach bug ever, you know that one time when you couldn’t control your bowels and it felt like an alien was about to burst forth from your stomach… Remember that? Yeah, thats what IBD diarrhoea is like.
E is for Endoscopy – Endoscopy plays a key role in the diagnosis, management, and surveillance of IBD. Because there is no single test that can diagnose IBD, endoscopy is useful in establishing the diagnosis, distinguishing Crohn’s disease from ulcerative colitis, defining the extent of the inflammation. In established IBD, endoscopy helps define the extent and severity of the disease which aids medical and surgical decisions.
Colonoscopies and sigmoidoscopies are commonplace, they are undignified, embarrassing and uncomfortable but as someone who has had so many of these procedures I can tell you that they’re not as bad as you may fear. Sedation is offered and in my opinion should always be taken! I also remind myself that the nurses and doctors do this everyday and there is nothing they haven’t seen before.
F is for Flare Up – people with IBD are not always sick constantly, they have periods of remission and illness. These periods of being unwell are referred to as a Flare Up. Flare ups can vary in strength and length of time and can’t be predicted.
G is for Gastroenterology – Gastroenterology is the specialty of diagnosing and treating diseases of the gastrointestinal tract and so these are the fellas who deal with us IBDers. If you have IBD you will get to know your doctors and nurses very quickly. If you do not feel that you are getting the right treatment, don’t be afraid to speak up. I was under one team for years before I decided to change to another local hospital and a new team. It was easy to do, all through my GP and I am so much happier with my treatment since then.
H is for Hospital – IBD is managed by a consultant and team of doctors meaning that sufferers spend a good chunk of their time attending hospital appointments. Severe flare ups can require hospitalisation for more aggressive treatments and medication. If the disease gets to the point of requiring surgery then hospital unfortunately can feel like your second home.
I is for IBS – IBD is not the same as IBS. Not at all. And it kinda pisses off IBD folk when people say “ohhh yeah my sister/brother/uncle/neighbour has IBS!!”
Irritable bowel syndrome (IBS) is classified as a functional gastrointestinal disorder, which means there is some type of disturbance in bowel function. It is not a disease, but rather a syndrome. IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn’t result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD. People with IBS are not at higher risk for colon cancer, nor are they more likely to develop IBD or other gastrointestinal diseases. IBS seldom requires hospitalization, and treatment does not usually involve surgery or powerful medications, such as steroids or immunosuppressives. This information is from the CCFA.
Im not belittling IBS, I know it causes great distress to those who suffer from it but it is very different to IBD and the two shouldn’t be confused.
I is also for Ileostomy – An ileostomy is a surgical opening constructed by bringing the end or loop of small intestine out onto the surface of the skin. Intestinal waste (shit) passes out of the ileostomy and is collected in an external bag that sticks to the skin.
J is for J Pouch – A J Pouch or Ileoanal Reservoir is a surgical treatment option for IBD patients who need to have their large intestine removed. It is an internal pouch formed of small intestine. This pouch provides a storage place for stool in the absence of the large intestine. Several times a day, stool is passed through the anus. This is the next step for me and will mean I no longer have a stoma or ileostomy.
K is for Keep Calm and Carry On – because in reality, it is the only thing we can do.
L is for Laughter – Now I know that this disease is serious business, it affects every part of your life and the pain and embarrassment can just feel too much so having L for Laughter may seem like an odd one. But I really believe that laughter is the key to getting through the bad times. The fact is that poo, bums and farting are a bit embarrassing for most of us, but they are also funny. Seriously, toilet humour is hilarious and the quicker you can laugh and make a joke of something, the quicker it feels like less of a big deal.
M is for Medication – there are a variety of medications used to treat IBD, my experience has only been of Ulcerative Colitis meds but most have side effects and some people find the treatment as unbearable as the disease itself. I believe that its really important to educate yourself on the medications and treatments available to you along with the benefits and side effects. Take control of your disease and make sure the treatment path is the right one for you.
If your symptoms are mild you may not require specific treatment as mild ulcerative colitis often clears up within a few days.
Moderate ulcerative colitis is often treated using a medication called aminosalicylates. If this is not effective, alternatives such as corticosteroids (steroid medication) and immunosuppressants (medications that suppress the workings of your immune system) can be used.
Once your symptoms are under control it may be recommended you continue to take aminosalicylates as these can help prevent further flare-ups; this is known as maintenance therapy.
If you experience a severe flare-up you may need to be admitted to hospital where you can be given injections of corticosteroids or immunosuppressants.
There is also a relatively new type of medication called infliximab that can be used to treat severe ulcerative colitis where corticosteroids cannot be used for medical reasons.
This information comes from the NHS website.
N is for the NHS – Only since my surgery have I realised just how lucky we are in the UK to have the NHS. Though I had some difficulties (I changed hospitals and consultant once and had a bad nurse experience) I am a big fan of the NHS and feel so lucky to have had the level of care, treatment and support that I have received. When I read about IBD patients in the US I am appalled at how their system works and realise the value of our countries medical care.
I can’t thank my doctors and nurses enough for the amazing care Ive had in the last year, they have truly saved my life and Im eternally grateful.
O is for Ostomy – The terms ostomy and stoma are general descriptive terms that are often used interchangeably though they have different meanings. An ostomy refers to the surgically created opening in the body for the discharge of body wastes. A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.
P is for Pain – Pain is a common side effect of IBD, abdominal cramps and pain as well as a literal pain in your ass. Living with pain is really difficult and has such a negative impact on the lives of those with IBD. It can become difficult to manage as sufferers should not take anti inflammatory drugs or Nonsteroidal anti-inflammatory drugs, usually abbreviated to NSAIDs. Other pain relief can also have an affect on the bowels and some are really addictive and should only be used short term.
P is also for Poo – in a post like this, how could it not be??
Q is for Quality of Life – This is a biggy for me, one of the main reasons that I wanted to go ahead with my colectomy surgery was because Ulcerative Colitis was really affecting my quality of life. That is an understatement to be honest, my life with IBD was literally shit, it made me miserable. I was exhausted both physically and mentally, I struggled to work, I dislike going places where I wasn’t near a toilet, my body was being wrecked by meds, I had little sex life, I was moody, angry with life and just felt hard done to.
I was pissed off that I had to live like that, it seemed so unfair. Since my operation my quality of life has gone through the roof, though it is in no way an easy option it was definitely the right option for me.
R is for Rectum – Let me tell you about Phantom Rectums… Phantom rectum is a complication that can affect people with ileostomies. The condition is similar to a “phantom limb”, where people who have had a limb amputated feel that it is still there. People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.
Weird, annoying but hilarious to tell people about!
S is for Support – Support is key to surviving IBD, from medical teams, friends, family and IBD groups. It really is a shit disease to have to live with, and due to its taboo nature sufferers not only have to deal with the physical problems but also with the huge emotional toll it takes on your life. Embarrassment, shame, humiliation, anger and a deep sadness are all emotions that Im at war with every day and it is only with the support of my husband, family and friends that I get though it. My blog is a coping mechanism for me, if I can write it down and feel that Im helping someone else then it feels that the crap I deal with has a purpose.
Im also a member of the IA Support (Ileostomy and Internal pouch support) and I visit the Colitis and Crohns site regularly. Whoever you choose to talk to, just talk to someone. I guarantee you that it helps, I get many emails and messages through this site and always try to reply to and support anyone that I can. xxx
T is for Toilets – IBD sufferers are well acquainted with not only their own toilet but those of all friends, family and all public toilets in their surrounding area. I can’t even imagine how much time I have spent on the pot in the last ten years, considering that during flare ups I could be going to the loo 20 + times a day.
As a side note, you can request from Radar a key to use disabled toilets around the UK as when you need to go, you need to GO… Having washing facilities by you is a life saver when you have IBD. So next time you see someone who doesn’t look ‘disabled enough’ using the facilities, wind your neck in..
U is for Ulcerative Colitis – I was diagnosed with Ulcerative Colitis in 2003, it was a life changing moment and I struggled to deal with the idea of having an illness for a while. UC is inflammation and ulceration of the large intestine or colon, it presents itself with bleeding, diarrhoea and pain.
V is for Vegan, or Vegetarian or the raw diet, or the beige diet – There are a million and one people across the internet who claim to have the ‘cure’ for IBD through diet and pills. The fact is that if you are suffering from IBD you should NEVER start any massive change to your diet without speaking to a doctor first. Doctors do recommend a low residue diet during flare ups but please talk to an expert before trying to heal yourself with foods, drinks or any herbal remedies.
W is for Weight – IBD can really negatively affect weight, for many the disease stops the body absorbing nourishment which means drastic weight loss and those people really struggle to keep themselves at a healthy weight. For others the meds and illness cause weight gain, puffiness and bloatedness. Neither is healthy and neither make the person feel good.
X is for X ray – Or Xylophone. But I can’t think of a way to connect IBD to a xylophone so we will talk X rays. X-rays form a series of tests that may be done on people with IBD. Sometimes using barium and at other times without, X-rays are used less these days as clearer tests are more commonplace. I have had a couple of X-rays before to check for toxic mega colon, which is not a Muse song but an acute form of colonic distension where the colon becomes extremely swollen and massively enlarged.
Y is for You – How IBD affects you comes down to how you choose to deal with it, it is bloody hard work to be ill and it can be depressing and make you angry, sad and broken. But your courage and bravery of just getting through each day is something to be proud of, remember that.
Z is for Zzzzzz – Or sleep (give me a break, Z is hard!!!) IBD can not only affect the amount of sleep you’re able to get but the quality of sleep as well. Whether it is through medication, pain or getting up through the night with diarrhoea and bleeding, lack of sleep can cause all sorts of problems such as
- Difficultly getting to sleep
- Difficulty staying asleep
- Problems with concentration
- Poor attention
- Changes in mood
- Fatigue throughout the day
Side effects from many medications that are given to an IBD patient can also cause sleep problems. Steroids such as Prednisone can keep a person up all night.
Love Sam xx