Crohns is like a marriage or a relationship, it has it’s great moments when all is ok but equally it has it’s shitty moments when things go to pot.
I know this blog is predominantly for my Hidradenitis Suppurativa but for this piece I shall open up, so to speak, about Crohns Disease (also known as regional enteritis).
Crohns Disease, I shall refer to this as CD throughout this piece, is an Inflammatory Bowel Disease. It is not to be confused with Irritable Bowel Syndrome, or IBS. CD is, as yet, incurable but is is ‘managed’ using medications as well as surgery. It is an incredibly painful disease.
Crohnies, an affectionate term I feel, go through active periods and then (if lucky) will go into what is known as remission. I know remission is more commonly known for cancer patients but with CD it is when the sufferer will have few or no symptoms.
CD is diagnosed by knowing a patient’s history; doing thorough blood tests and endoscopic procedures (camera tests in certain orifices). A person may experience a number of gastrointestinal symptoms as well as external symptoms. If you are of a squeamish nature look away now as I will list the symptoms here.
- Abdominal pain and/or;
- Diarrohea (which may be bloody due to inflammation in bowels at it’s worse and/or;
- Vomiting (can be continious) and/or
- Weight loss
- Skin rashes
- Inflammation of the eyes
- Poor concentration
Obviously every CD sufferer will experience different symptoms with varying severity. It is thought to be an autoimmune disorder, this means the body’s immune system causes problems which results in the inflammation of the gastrointestinal (GI) tract. There is also scientific proof that genetics play a part in it, my mother actually has CD too.
In Europe it can affect, dependent on country, between 27% and 48% per 100,000 people. I am unsure of the statistics in somewhere like North America. CD will usually make itself known in teenage years or early 20s. It is known for some elderly people to develop it in later life too due to their declining immune systems. Sadly some people are misdiagnosed and do not get referred to Gastroenterologists, this is something you must push if you feel you are having problems anywhere within your GI system.
There are many complications with Crohns. However, unless you have a perforated bowel that is left untreated you are not going to die from this disease. As mentioned before it is all about managing the condition with the right medications for you as well as making lifestyle changes that ease symptoms.
Crohns varies in location and severity, my Crohns is in the ILEOCOLIC regions. This means I have several areas where my bowel is diseased, I had a section of bowel removed when I was diagnosed as well as my appendix!
I have only ever been in full remission twice in the decade since I was diagnosed. At the time of diagnosis the gastro doctor stated he, going by gastric symptoms, felt I may have had Crohns since my mid teens. As there is a link between HS and CD I would agree, this would mean I have probably had Crohns for around 15 years fully. That is half my life!
I have tried many different medications including anti-TNF treatments (Humira); chemotherapy; steroids and opiate pain relief. I have active Crohns at the moment, and bearing in mind it is stronger than morphine, and the pain is breaking through Fentanyl. I am having Humira tomorrow (it is for both CD and HS) which will ease symptoms along with codeine.
It amuses me that people are a bit scared of talking about bowel habits both with each other and their actual GPs. You never know, one discussion could lead to getting help with symptoms and/or specific GI conditions. Open up for goodness sake, you could save a life.
The tests you will need to have throughout the disease are intrusive and do make you feel vulnerable, well they do for me anyway. The two that are the most common are a gastroscopy and a colonoscopy. I would recommend you choose sedation for both of these procedures, they will not do it under a general anaesthetic. You will also need to take purgatives, these clean the bowel out, the day before said tests.
Gastroscopy is where they will put a camera down your throat to look at your upper GI tract, they will more than likely take biopsies. Colonoscopy is where the camera goes up your back passage to look at your lower GI tract, again biopsies will probably be taken. Both of these procedures are uncomfortable but they are necessary. You can, if awake enough and are not squeamish, watch what is happening on a screen.
There are many other tests they do but I don’t know all of them, well not yet anyway!
If you, or someone you know, have Crohns Disease I can thorough recommend an excellent book. It is called ‘Foul Bowel’ and is written by the lovely John Bradley. John has Crohns himself and has written a guide that is easy to understand. It will help you even if you have had Crohns since the Dark Ages or if you have just been diagnosed. He is on Twitter as @Johnbradley1 and his website (he blogs too) is http://www.foulbowel.com – there are details of how to and where to buy his book. I do believe you can buy his book in several formats including Kindle, do not quote me on that though! In his site there are actually some amazing reviews of his book. I actually strongly believe his book should be available on prescription it is that good.
If you are diagnosed with Crohns, make sure you get a good support network around you. Your family may not understand the disease but if you have access to social media you will find so many people on those sites in the same position as you. Do not be afraid to, when being referred to specialists, ask for a specific consultant. Do your research about particular hospitals as well as the consultants too. Do not be afraid to ask for pain relief, this condition is incredibly sore sometimes even when not grumbling. Do not google too much into your condition, whether you have Crohns or any other condition as you will scare yourself.