Vitamin D and IBD

Vitamin D helps to regulate the amount of calcium and phosphate in the body and it is essential for healthy bones. Vitamin D also helps to reduce inflammation and is important for good general health and growth. There has been studies which have shown a correspondence between people with inflammatory bowel disease and low levels of vitamin D. It is one of the most common vitamin deficiencies seen in people with Crohn’s disease. The studies have found people who have low levels of vitamin D had a higher severity of the disease. It has highlighted the importance of monitoring and treating people with IBD.

Vitamin D is essential for absorbing calcium into the body. This means people who lack vitamin D most often lack calcium as well. A small lack in vitamin D may not cause symptoms but can cause:

·         Tiredness

·         Generalised aches and pains

A severe lack in vitamin D can result in:

·         Bone deformities in children i.e. rickets

·         Bone pain and tenderness in adults (osteomalacia)

People who suffer with an IBD are more prone to osteoporosis and other bone diseases which is attributed to the lack of vitamin D.

Vitamin D deficiency can be diagnosed by a simple blood test by the doctor. 

There are a few different theories as to why us IBDers may have less vitamin D. They include:

·         Due to their symptoms they may be more likely to stay inside, near a toilet or resting and then we do not get much access to sunlight to get natural vitamin D. 

·         More IBDers live in the northern areas which has less sunlight.

·         Vitamin D is a fat soluble vitamin and people with active inflammation in their small intestine poorly absorbs fat meaning less fat for vitamin D to be absorbed in. 

Vitamin D is made under our skin due to the reaction to sunlight so increasing your exposure to sunlight can help increase your vitamin D levels. However, you need to make sure you do this safely. In the northern areas which includes the most of Europe there is not thought to be enough sunlight during the winter months to get the sun exposure which is needed. 

It is therefore important to get vitamin D from other sources, such as through your diet or through supplements. It is also found naturally in a small number of foods including:

·         Oily fish such as salmon, sardines and mackerel

·         Eggs

·         Fortified foods with vitamin D such as cereals

If you choose to take an over the counter vitamin D supplement make sure you do not exceed the recommended dose.

Iron and IBD

Low iron or a lack of it commonly causes iron deficiency anaemia. This type of anaemia leads to a reduction in the production of red blood cells and this can mean a reduced amount of oxygen being carried around the body in your blood. Iron deficiency is a common complication for people who suffer from inflammatory bowel disease but it is very easily treated.

The most common symptoms of iron deficiency are:

·         Tiredness

·         Lack of energy

·         Heart palpitations

·         Pale complexion

Less common symptoms include:

·         Headaches

·         Tinnitus

·         Altered taste

·         Itchiness

·         Sore or abnormally smooth tongue

·         Hair loss

·         Desire to eat non-food items like coal

·         Difficulty swallowing

·         Ulcers in the corner of your mouth

·         Spoon shaped nails

If the iron deficiency is left untreated it can lead to:

·         Increased risk of infections

·         Heart and lung problems

·         Restless leg syndrome

Iron deficiency can be diagnosed through a blood test by your doctor.

People who suffer from IBD who lose blood and also iron through bleeding in their stools from their intestines are usually at a higher risk of developing iron deficiency. This can happen in both people who suffer from both Crohn’s disease and Ulcerative Colitis. People with Crohn’s disease in their small intestine in the duodenum are at further risk as this is where the iron is absorbed. If this is where you have your Crohn’s disease you might have an issue absorbing the iron. Some people with IBD and on a restricted diet due to the foods they can eat will not be getting enough iron through their diet. 

Most people with iron deficiency will be able to take and iron supplement orally from the doctor on a daily basis. Others will need to be given iron intravenously. This will help to boost the iron levels in your body. 

Most people find they have side effects from taking iron supplements such as cramping and constipation. 

You can also help boost your iron intake through your diet by eating foods like:

·         Dark green leafy vegetables like kale or spinach

·         Brown rice

·         Pulses and beans

·         Nuts and seeds

·         Meat, fish and tofu

·         Eggs

·         Dried fruit

·         Also some cereals and bread are also fortified with iron.

If you cannot eat all these just eat what you can tolerate to help boost your iron. I know I have dips every so often that I need to get an infusion every so often and it means 2 trips to the hospitals day case unit for a few hours. I do try to eat what I can to prevent me from having to get an infusion by eating the foods I can tolerate like beef, fish, eggs and cereals.

Hiding behind a smile - how I manage to hide my worst days with myCrohn's Disease

When I usually go out of the house you will usually see me all put together nicely.  Makeup done, hair done, etc.  I have learnt how to hide behind little tricks to look very presentable with very little effort.  These little tricks are to act like a normal person despite being ill.  You will see me smile even when I am in excruciating agony and possibly dosed up on pain killers.  My body is yelling at me even though I am hiding what I am feeling and thinking.  I do this to act like I am normal.  I do it to feel normal too.  This is all to hide from others so they do not know I am suffering in agony and so they do not focus on me being sick as most people do not know how to respond without hurting me.

Very few people see me at my lowest (which is my worst days) as I usually hide them very well now.  However, this is not always the case as some of my very close friends know when I am lying so if they ask me a question and I usually reply the exact same answer time and time again they now know that I am hiding something whether it be my Crohn’s hurting me or my anxiety or depression getting to me.  My little girl Alisha also knows when I am hiding something from her so she has started bringing me a teddy and giving me a huge slobbery kiss and hug but that is usually when she sees me slipping with my guard as it does get really tough keeping my guard up all day.  During a flare up of any of my illnesses whether it be the Crohn’s disease, anxiety or Fibromyalgia, the last place my body wants me to do is go outside of the house, plaster a fake smile on my face an look presentable.  On my worst days I actually struggle to get out of my bed and Alisha actually comes into my bedroom now and says “up mummy up”.  She may only be 2years old but she knows that the day must go on even if mummy is poorly and wants to stay in bed all day, so instead we have a pyjama day instead hiding away from everyone.

On my bad days I only go out of the house if I desperately need to go out so anything like appointments, work or a food shop is when I only leave the house.  On a terrible day I do not even leave my garden or house depending what the weather is like outside.  When I do go outside I need to make sure I feel safe or there is toilets which are close by just encase I need to run to them quickly.  These places I need to feel safe because I do not need to explain myself if I have an accident or they are understanding.  I do not do this because I feel ashamed of my day to day reality, I do this because I sometimes need protection from the vulnerability I am experiencing.  At the end of the day it usually leads to people’s misconceptions about how bad my illnesses are.  There are days I could have a shower and I am out of breath but I do not let anyone know, but it does not mean I do not experience this.  There can also be days when my hands shake or I cannot get my feet to move or my face turns a grey colour as I cannot swallow something or I am trying to catch my breath.  You might not see these things happen as you are busy or just because I hide them from everyone or I do not speak about it to anyone.  YES these days do exist and I can promise you they do exist.  There are also days I am curled over in agony because I have ate or drank something that does not agree with my stomach and only a selected amount of people are aware of this happening.  Or I am frozen with anxiety and I cannot actually move from where I am standing.  This happened the other day as I was promised a lift home after I had finished work to collect Alisha from the childminders.  But that person text really late and my anxiety had kicked into overdrive and that made me freeze to a spot near work because I knew I would have been collected safely after arriving to work and the whole shopping centre was evacuated due to a bomb alert.  I did have the choice of going home and saying I am not working but after the police had gave everyone the all clear to return to work I said to myself that anxiety you are not getting the better of me as I am in control not you.

Bad days and terrible days do happen to people with chronic illnesses but those who suffer with more than one chronic illness can suffer with more bad or terrible days depending on if the illnesses are in remission and under control.  However, there can be a day when that illness decides to say oh no you are going to be tortured today and I am going to make your day hell. I say all of this because it’s easy to judge a person’s condition by what you see when you’re with them, but you can’t rely on that. When you see me you may wonder why I can’t apply for a regular job. You may wonder why I write about chronic illness so passionately. You may think I exaggerate because I enjoy pity. But when you see me, you aren’t seeing all of me. What you see one day does not accurately depict every day.

IBD and women

I was diagnosed with Crohn’s disease after months of suffering.  I had ended up in a&e after collapsing in work one day in March 2013 and I was sent home to be seen by a doctor and not to come in unless I was signed off as fit for work.  That day I walked into a&e I was not allowed out again until a month later.

One full month in hospital and I was bored out of my mind.  The first 2weeks I was bed bound and was only allowed out of bed to go to the toilet or get a shower.  The rest of the time if I moved I was taken back to bed again as I was extremely poorly as I had no energy or strength to stand up on my own.  I had needed support off nurses to take me to the bathroom as I was extremely weak.  I was unable to keep any food or drink down and it scared me out of my wits not being able to eat or drink properly.  When I was in the hospital I was put on saline drips and was given special drinks to make sure I stayed hydrated.  After about a week after my admission I was starting to be able to manage food but only a few mouthfuls as I had no appetite.   I had fallen out of love with food as it made me suffer with so much pain I cried until it had passed through me.  This pain was caused by all the ulceration in my mouth as I had massive mouth ulcers and my bowel was also inflamed and ulcerated too.  This inflammation and ulceration was caused by a Crohn’s disease flare up.

Anyone with an IBD would understand how debilitating and draining a flare up can be mentally, emotionally and physically.  It can be extremely painful, you might have to be hospitalised or unable to leave your bed or heavily medicated.

While both men and women can suffer from inflammatory bowel disease, but as a woman, there are a few things I have noticed that are gender specific from help from the professionals and red faced conversations.  There are a few things that women have to deal with when suffering with IBD have to put up with:

1.    You have more favourite clothes than an average woman

I have a few favourite pjs that I love to spend my bad days in.  During my period and my bad days I spend more time lounging around the house in my comfy pjs due to the bloating, pain and the need to feel comfy.  It sometimes helps me to feel better in myself even with the pain and bloating.

 

2.    It can be a bit embarrassing when needing to go and use the public toilets

Most guys seem to be able to go for a poo in public toilets much easier than females.  When you walk into female public toilets there is always one person complaining just when someone makes a noise that is not normally made when going for a wee.  Or someone complains about the smell in the toilets due to someone doing a poo.  So for a woman with an IBD in a full blown flare it is not really ideal as it is embarrassing when someone starts complaining.

3.    It can also be embarrassing having to talk about the toilet to people

Guys get away laughing and joking when they fart but when women do the same or talk about bowel habits it is extremely unladylike.

4.    You get plagued with Juice Plus offers more than anyone in your friendship group

Women Juice Plus sellers seem to target female IBD sufferers and they explain how “amazing” the natural ingredients are in the capsules which are supposedly really good for ulcerative colitis or Crohn’s disease.

 

5.    You own more high waisted clothes than a shop

Some people with IBD might have to have surgery to remove part of their intestine and part of the intestine has to be brought out to the abdomen to release the waste.  The surgery can be done to give the bowel a rest or because part or all of the bowel has had to be removed.  Most women with an ostomy live in high-waisted clothing due to it being secure, supportive and trendy.  Those people without an ostomy use high-waisted clothing to hide the bloating caused by IBD.

6.    You have lost weight is no longer taken as a compliment

Just before my diagnosis of Crohn’s disease in 2013 I had lost so much weight due to a massive flare and my colleagues were concerned with my well-being.  Customers and other people congratulated me on the weight I was losing.  But in my head it was most defintiely not a compliment as it was not intentional as I knew I was sick but no one believed me

7.    Insulting comments like “you have put on so much weight” can be even more of an insult

During a massive IBD flare doctors always give patients steroids to help get their health back on track again.  With steroids everyone starts commenting on how much weight you have gained instead of how much you have lost.  Other comments include gerbil or hamster cheeks due to the steroids.

8.    “I get that pain too” is a regular occurrence

When it comes from someone who also suffers on a daily basis with IBD or another chronic illness such as arthritis or fibromyalgia that is fine.  But when it comes from someone who is describing period pain against IBD pain it actually takes the piss I cannot take it no more.  Yes I have a lot of people in work coming about period pains but I know they known I suffer much worse with my IBD when I am suffering with a flare up.  I am sorry but your womb is not the same as a very ulcerated colon.

9.    Doctors do not take women seriously

Due to stomach cramps being one of the main symptoms of IBD most doctors try to fob you off with it is just women’s problems even though we know ourselves it is nothing to do with our period and it is actually to do with our bowels.  Bleeding is another symptom and some doctors surprisingly does not understand the difference between blood coming from your rear end and bleeding from your vagina.  This is another reason why doctors pass it off as women’s problems.

10. You become extremely understanding to others

Yes it annoys me when other women compare their symptoms of their period pain to Crohn’s or Fibromyalgia pain.  But over the years of suffering I have noticed I am a bit more compassionate towards other women especially when they have to take time off for stomach cramps.  My daughter suffers a lot with stomach cramps and since we have figured out that it was mostly down to allergies (she is only two but with four food allergies that we are aware of to date and under investigation for IBD and Coeliac disease due to her symptoms being exactly similar to both illnesses after taking out everything with any of the allergens she cannot have).  She does know when I am in pain and she is very compassionate and usually gives in to giving me hugs and kisses to make me feel better just like I do when she has stomach cramps.

11. You are an extremely strong person (even when you do not think you are)

On a daily basis we deal with bloating, cramps, bleeding, fatigue and many other bowel related things.  We gain a lot of weight, we lose some too, we trial different combinations of medication to stay at a balance.  We have to face surgery, infusions, injections and we have taken way to many different tablets under the sun.  We also have to deal with rude, judgmental or inconsiderate people and people who just simple do not understand.  We already have to deal with so much as it is but we are still here and still fighting our way through things.

Crohn's disease and Fibromyalgia

Fibromyalgia is a result of a number of sensitivities throughout the body from head to toe.  Digestive issues are extremely common with those who suffer with fibromyalgia.  These include GERD or acid reflux issues, gluten intolerance, irritable bowel syndrome (IBS).  Other digestive issues that are common with fibromyalgia are Crohn’s disease and Ulcerative Colitis which are the two most common inflammatory bowel diseases (IBDs).  Over a period of time it can cause a lot of discomfort.  Why are they intertwined?

IBDs attack the bowels and make them so sensitive to different types of stimuli and to what we ingest.  With IBDs your whole gastrointestinal tract is inflamed to the point it is not functioning properly.  This inflammation can be extremely painful as well so it is good to keep track of what goes into your body so you know what causes the pain and can end up doing a lot of damage too.  Crohn’s disease however, does not just affect the gastrointestinal tract and symptoms can vary depending on your case.  In many cases the symptoms can be debilitating and make it very difficult for the person to eat and digest their food properly.

Some major symptoms of Crohn’s disease can clash with the symptoms of fibromyalgia symptoms.  These symptoms can include lower back pain, muscle pain, problems with the joints.  Other symptoms include swelling of certain areas of body, blood in stools, cramps, weight loss, dry skin, severe itching and poor general nutrition.

In the worst cases surgery is needed to be performed on patients and they have to create a stoma which is when a part of the intestinal tract is missing because it is unable to work properly so part of the intestine is put through the abdominal wall to create a stoma to attach a bag to collect the waste produced.  With the research done so far no one has found the cause or the cure for Crohn’s disease.  There are a wide range of theories out there like the presence of viruses and bacteria, from irritable bowel syndrome and genetics.  The only solid evidence found at present is that there is a particular gene that all people who suffer with Crohn’s disease seem to share but no one has been able to make the full link between it all at this point in the research.  At some point in the future they will hopefully be able to come up with the solid reason behind why it happens to certain people but not all of us.

There is no solid link between Crohn’s disease and fibromyalgia.  This is mainly because researchers have still not been able to determine exactly what the causes are for each of the illnesses.  It is not common to find someone with both fibromyalgia and Crohn’s disease but it is not unknown of someone to have both illnesses (like myself as I was diagnosed with Fibromyalgia on May 2^nd 2017 after years of suffering with pain, fatigue and headaches alongside my symptoms of Crohn’s disease).  Researchers are still trying to determine exactly why they seem to be connected to one another, but like with both of their causes there is only one huge link that many doctors ascribe to.

Irritable bowel syndrome (IBS) is the disorder of the bowels that makes it hard to eat certain types of foods due to sensitivities to them.  Those who have diagnosed with fibromyalgia frequently have IBS as a symptom they are dealing with on a daily basis.  Due to many people who have fibromyalgia end up getting treated for IBS and looking at some of the theories behind why Crohn’s disease happens in certain people.  Both fibromyalgia and Crohn’s disease have something to do with IBS, there are some theories out there that people with IBS and fibromyalgia are more likely to end up with Crohn’s disease in the future.

What does that mean for treatment for those with Crohn’s disease and fibromyalgia?

Those with Crohn’s may notice that you do not have to deal with the symptoms on a daily basis if the illness is in remission.  Other periods you may have to deal with the symptoms for an extended amount of time due to a flare up.  During flare ups you want to make sure that you are getting treatment to help reduce the amount of pain that you ate coping with.  These can include a variety of different things, from medications to control your symptoms, surgery to take out part of the intestine that is suffering from Crohn’s disease or a variety of other treatment plans agreed with your gastroenterologist.  Always keep your doctor in the loop about any symptoms you are suffering from as you may end up seeing that the Crohn’s disease or another illness has started to come up alongside your fibromyalgia symptoms.

It is very important to look after yourself because the other illnesses that can often occur with fibromyalgia can be mistaken as a worsening of the fibromyalgia or Crohn’s disease.  Be sure to keep an eye on all your symptoms and keep a journal and if there are any changes or something new has started then you can show the journal to your doctor when the changes started or how the severity has changed.

What is Crohn's Disease?

Crohn’s disease is a chronic illness which causes severe inflammation of the digestive tract.  It is known for abdominal pain, diarrhoea and affecting the persons quality of life.  It is characterised by alternating between flare ups and remissions.  It was named after the person who first described the disease back in 1932, Dr Burrill B Crohn.

Crohn’s disease is included within a larger group of illnesses known as inflammatory bowel diseases (IBD).  It can appear anywhere along the gastrointestinal tract from the lips to the anus.  However, it is mainly found in the distal small bowel and colon.  Due to it developing anywhere within the intestinal tract it can make diagnose and treatment slightly difficult.

Over time, ulcerations can develop and extend through the layers of the intestinal tract. This can cause severe complications such as:

·         Strictures (intestinal narrowing)

·         Fistulas (abnormal tunnelling)

·         Anal fissures (painful tears in the skin around the anal area)

·         Ulcers of the gastrointestinal tract

·         Malabsorption

What Causes Crohn’s Disease?

The cause of Crohn’s disease is unknown. It’s an autoimmune disorder. That means that a combination of genetics and environment cause your immune system to attack your own intestinal cells.  At the moment there is research into the different fungus and bacteria which live within our bodies in our digestive track to see if there are any differences in how they work within our body to a person who has not got Crohn’s disease.

• What about age?
Crohn’s disease most affects people between the ages of 15 and 35.  But with all the new technologies within the hospitals there are children as young as 6months old being diagnosed with Crohn’s disease and Ulcerative Colitis.

• Family History?
Those with a family history of Crohn’s disease unfortunately are at a higher risk of having the illness.  Unlike myself I happened to be the first of many generations who had been diagnosed with Crohn’s Disease.  With me having it, there is a chance of 10-15% of my children having but if they are not diagnosed with it they can be a carrier just like all the other genetic illnesses out there.

• History of Autoimmune Disorders?
If other autoimmune disorders are present within the family or within yourself (such as rheumatoid arthritis and fibromyalgia) you have a higher risk for developing Crohn’s disease.

• Race/Ethnicity?
Although people of all races have the disease, Crohn’s is found more often among people from Eastern Europe and American Jews of European descent.

Symptoms

What Are the Symptoms of Crohn’s Disease?

Symptoms of Crohn’s vary depending on the severity of the disease and the location of the inflammation. The most common symptoms, however, are severe abdominal pain, bloating and cramping during a severe episode. Other symptoms can include weight loss, diarrhoea that may or may not contain blood or mucus, fever, and fatigue.

Because it involves the immune system, symptoms of Crohn’s disease can also be found outside of the gastrointestinal tract. The disease can also include arthritis, skin rashes such as; erythema nodosum, sores inside of the mouth such as; mouth ulcers or canker sores, osteoporosis, and kidney or gallstones.

How Is Crohn’s Disease Diagnosed?

Crohn’s disease is difficult to diagnose because the symptoms can mimic many other diseases, such as a parasitic infection, diverticulitis, a common disease found in the large intestine, Coeliac disease and colon cancer. Another reason that Crohn’s is difficult to diagnose is that there is no specific blood test to identify the disease.

A doctor will consider a variety of factors in diagnosing Crohn’s disease. These include:

· History and Physical Exam

Your doctor will begin with a detailed history of your symptoms and any ask about a family history of autoimmune disorders.

· Abdominal X-ray

This is done to check for any intestinal narrowing or obstruction, which can be a medical emergency.

· Ultrasound

An ultrasound will rule out diseases of other abdominal organs such as the liver, gall bladder, or pancreas.

· CT Scan or MRI

These imaging methods are used to determine any complications of the disease such as fistulas or abscesses.

· Colonoscopy

This is the gold standard for diagnosis of Crohn’s disease. A colonoscopy enables a doctor to see the inside of the intestinal wall and remove a tissue sample for further examination.

How Is Crohn’s Disease Treated?

Due to no known cure as yet for Crohn’s disease doctors can only try to prevent complications and control inflammation. Since the disease alternates between periods of remission and flare-ups, treatment focuses on helping you avoid any flare ups. Treatment varies based on the site and severity of disease as well.

Some treatment options include:

Medications

Many different medications are used to manage Crohn’s disease. They may be used alone, or in combinations.

· Corticosteroids can be used to control inflammation and quiet the immune system. Because of the side effects of chronic use, steroids are often prescribed for a short-term during a flare-up.

· Aminosalicylates are anti-inflammatory drugs that treat mild to moderate symptoms and help keep you in remission.

· Immunosuppressive agents are prescribed to help you maintain remission by calming an over-active immune system.

· Antibiotics are prescribed to prevent and treat infection or decrease the overgrowth of bacteria in the gastrointestinal tract.

· Biologic agents are similar to drugs used in chemotherapy and are given for more severe cases. These medications may be given orally, intravenously, or by self-injection.

Surgery

Depending on the location and severity of the condition, it may be necessary to remove a diseased portion of the intestine. Unfortunately, this doesn’t cure the disease. Crohn’s is a chronic illness that often will reoccur later in life. There are also times when it is necessary to remove an ulceration or blockage in the digestive tract.

Surgery is done cautiously and every attempt is made to preserve as much intestine length as possible to avoid further complications.

Nutrition

People with Crohn’s disease are often underweight because intestinal inflammation interferes with the absorption of food. Nutritional counselling and dietary supplements may be used to try and prevent malabsorption.

Stress Management

Stress can increase the frequency and severity of flare-ups. Stress management and emotional support are important to a successful treatment plan.

Can a Crohn’s Flare-up Be Prevented?

Crohn’s flare-ups cannot be prevented. Certain lifestyle changes, however, can decrease the severity of a flare-up:

· Dietary Changes

A low fibre diet can decrease bowel frequency and help reduce diarrhoea. Many Crohn’s patients find that diarrhoea and flatulence improves by limiting gas-producing foods such as beans, cabbage, broccoli, raw fruits, and juices. Limiting dairy has also been helpful in managing the condition. A dietitian may also recommend six small, frequent meals per day instead of three large ones.

· Stress

Limiting stress and learning to manage it with exercise and relaxation techniques can help decrease symptoms.

· Smoking

Recent studies have shown that even light or occasional smoking can increase the intensity of flare-ups.

· Compliance

Patients who have Crohn’s must take their medications exactly as prescribed and follow their treatment plan in order to prevent complications and hospitalisations.

Crohn’s disease can be a lifelong challenge. Following your doctor’s advice and sticking with your diet and treatment plan can greatly improve your quality of life.