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.

Azathioprine

Azathioprine also known as Imuran.  Azathioprine is an immunosuppressive medicine used in the treatment of auto-immune diseases, Azathioprine helps to suppress over activity in the immune system. This helps to reduce pain and swelling by limiting inflammation. Azathioprine needs to be taken for a few weeks or months before any improvements are noticed. It is mainly used by people who have organ transplants as it prevents the body's immune system from rejecting the donor organs.

Azathioprine comes in tablet and liquid form.  The liquid form is very rarely given out to patients using the drug as it is harder to measure the amount you would need to make the full dosage on a spoon or in a syringe.




Azathioprine tablets

Due to azathioprine effecting the immune system people who take it are more prone to picking up every bug going.  Signs of infection include fevers and chills and feeling generally unwell.  Whilst taking azathioprine it is important to use a sunscreen with a protection factor of SPF 15 or higher due to the skin becoming more sensitive to sunlight.

Before starting it the doctor must know your full medical history as some drugs can interact with it and not make it work properly or if you have an allergic reaction to it too or the sister drug 6-mercaptopruine.

Azathioprine Packet

Side effect of azathioprine can include:

• blood and bone marrow problems
• increased risk of getting infections such as chickenpox
• gallbladder problems
• hypersensitivity reactions including kidney problems or lowered blood pressure
• dizziness
• nausea or vomiting
• diarrhoea
• fever
• skin rashes
• joint pain or muscle pain
• a general feeling of unwell
• pancreatitis
• hair loss
• liver problems
• photosensitivity
• lung problems
• Stevens-Johnson syndrome
• toxic epidermal necrosis
• miscarriages

For myself I had picked up the majority of the bugs going around from colds and chest infections and tummy bugs :( At the start I had felt really sick taking it but my body had got used to it after a few weeks. Also the first 4months my hair had thinned out really bad that it looked like I was going bald but I had started to use different products to thicken it out again but not to the full thickness it was originally (like a lions mane).  Closer to the end of my time on it before being changed to the 6-mercaptopruine I kept getting severe migraines that it had stopped me from completing any of my work as I spent most of the day in bed sleeping it off.

The dreaded Prednisolone....

Prednisolone is one of many steroids in the medical world. Steroids can be bad depending on the side effects and how it reacts with each person.

Prednisolone works by preventing or reducing inflammation. It is used to treat a number of conditions that has excessive inflammation as a symptom. It can suppress the immune system and so can be used to treat autoimmune diseases such as, Crohn's Disease or Ulcerative Colitis or Arthristis. People who take corticosteroids for a long period of time are prone to infections as their immune system can become weak. These infections may be much more severe than they usually would be and the symptoms that would usually be used to identify such infections can be hidden such as Shingles. For this reason people who take Prednisolone must be careful to avoid exposure to infections such as chickenpox and measles whenever possible. If you have been given a steroid warning card (blue within the UK), make sure you carry it with you at all times while you are taking corticosteroids. These cards are normally given to you by your prescriber or by your pharmacist. If you are currently taking corticosteroids, or have taken them in the last year, you must tell everyone involved in prescribing you medicines and giving you medical treatment. This includes your doctor, dentist, nurse and pharmacist. You must make sure that they all know about your corticosteroid treatment, such as start date, finish date and dosage.

I was on 40mg for a week the reduced by 5mg each week until 20mg for 4weeks then reduced again by 5mg until 0mg. I had numerous side effect which included:

• acne
• appetite gain
• clotting problems
• bruising
• difficulty sleeping
• distension of the stomach due to bloating
• eye or eyesight problems
• feeling dizzy (mainly after I reduced from 25mg)
• general feeling of being unwell
• headaches and migraines especially when reducing each week
• healing problems as cuts and bruises took weeks to heal properly
• increased sweating
• indigestion
• irregular menstrual periods
• itching
• metabolic problems
• mood swings
• muscle problems
• musclepain or tenderness
• nausea
• slightly raised blood pressure
• skin rash or rashes
• stomach pain
• thinning of the skin
• tiredness
• vertigo
• water retention
• weight gain
• withdrawal symptoms
• worsening of eye or eyesight problems

When taking any steriods for long periods of time it is advised to be on a stomach lining tablet as it can affect the stomach. It was 2weeks into the course that the doctors realised why I was getting severe stomach pains worse than normal from the Crohn's Disease and it was due to no tablets to protect my stomach lining. As soon as they realised I was put on Omeprazole 40mg daily to prevent the pains. When I finally finished the course I had put on the five stone which I initally lost.

The Recovery....

My recovery all began after the endoscopy and colonoscopy on April 12th. I was told what would happen once I got back up to the ward. However, I was to groggy with the sedation and I had fallen asleep when the consultant was speaking to me so I could not remember much. When I had came round fully on the ward, which I had no recollection of coming back to after the procedures, a nurse had told me what exactly was happening with my treatment. I was to be put on azathioprine tablets at 100mg a day as well as hydrocortisone injection and an antibiotic drip for five days and then change over onto prednisolone and antibiotic tablets. The azathioprine was the consultants choice of immunosuppressant to manage my Crohn's disease and hopefully lead me into remission. I then spent another two weeks waiting for a MRI scan to see how bad the Crohn's Disease was to see if I really needed to start using the Humira as well. When I eventually got the scan it came back saying that the Crohn's was severe in the large bowel but had not touched the small bowel which was good as I did not need to start using the Humira unless the azathioprine was not working on its own in the future after I came off the steriods.