“Worst case scenario”

In my last post I mentioned about getting an operation being the worst case scenario. This is always what my IBD team has said to me when I have a scope done or they change my medication. I have many friends who suffer from Crohn’s and Colitis who have had to have a stoma either an ileostomy or a colostomy. The majority of my friends have never said it is the worst case scenario as they have got their life back. The only thing they have to worry about is the bag popping off and soiling their clothes which is rare if you have a bag that suits you and you use all the special seals and bonds to keep the bag stuck to your skin. Or the bag fills up too quick that they need to run and find a toilet to empty their bag. 

I am in the middle of the biggest flare up since I was diagnosed in April 2013. I have been late once to work because I needed to go toilet yet again before I left the house then got stuck in heavy traffic behind a road traffic accident on the way I go to work. I have also soiled myself on the way to work too which I am not happy about but I was prepared that day as I was carrying a spare change of work clothes. Now this is what the IBD teams should be saying is the worst case scenario not getting a life changing operation.

I have come up with five of the worst case scenarios for anyone with IBD.

1.  NO toilet paper …this is definitely number one as it is the worst scenario you can have happen. If you are at home you might have a massive stash of toilet paper in the house but what if you run out completely or you are using a public toilet and there is no toilet paper at all in the cubicle. A massive issue is at hand how are you going to wipe your bum

2.  NO toilets … either the establishment has no toilet or there is a queue of other customers waiting to use the toilet. Either way if you are needing the toilet urgently it is going to end in an accident.

3.  Dirty toilets … from making a mess yourself and having to clean it up before the next user or the previous person did not clean it before they left and there has been no toilet checks for a while by the cleaning staff it can be a horrible task to clean the toilet really quickly if you are in a rush out and about or even just at a friend’s house.

4.  Clogged toilet … this is a really common thing to happen to anyone. The best way to prevent this from happening is to flush the toilet after you have finished doing your business then after you have finished wiping. If the toilet water do not go down do not flush again as it is a sign that the toilet will overflow as it is clogged up already.

5.  Bathroom accident … this can happen to anyone of us as it can just come on all of a sudden that we need to run to the toilet and we cannot always get there on time to use the bathroom. If you do not have an emergency kit already it is worth the 10minutes or so to put one together with spare underwear, wipes, gloves and other bits and pieces you might need to use if you have an accident. If you look further down my blog I have a post regarding emergency kits. Mine is usually with me and I have one also for my little girl as she is no longer in nappies and so far it has only been mummy who has had to use the emergency kit when out and about if we go shopping or out on a little trip to town.

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.

How to cope with dehydration and IBD?

Our body is made up of 66% water.  By this level dropping by just a couple of percent our body can become dehydrated.  The lack of water with the dehydration can eventually lead to different problems such as kidney stones, muscle or joint damage.

By having Crohn's disease or Ulcerative Colitis it can sometimes increase our risk of dehydration.

Dehydration and what is it?

·         It is when our bodies do not get enough water or fluids.  This can happen by not drinking enough or when our bodies lose too much fluid e.g. through sickness or diarrhoea.

·         Dehydration can be described as mild, moderate or severe depending on how much body weight has been lost due to the loss of fluid.

·         Mild dehydration is the loss of no more than 5% of your body weight.  It carries a few risks and can be dealt with replacing lost salts and fluids.

·         Moderate dehydration is the loss of 5-9% of body weight and is more serious.  If the dehydration is ongoing (chronic) it can affect the kidney function and can lead to the development of kidney stones.  It can also be dealt with replacing salts and fluids.

·         Severe dehydration is the loss of 10%+ of body weight.  It is very serious and needs immediate treatment as it can be fatal.  You may need to go to the hospital to be put on a drip to restore the lost fluids.

·         Dehydration is very serious in children and babies as the have a low body weight and can make them more susceptible to loss of fluids.

What are the causes?

Dehydration can happen when we lose too much fluid than what we take.  We lose body fluid and salt throughout the day in sweat, tears, urine and our stools.  Usually, the water and salt content of what we eat and drink make up the loss, however we become dehydrated if the loss exceeds the intake.

The kidneys and intestine work together to try and control the level of fluid in the body.  The intestines absorb the salt and water while our kidneys try to regulate how much fluid needs to be lost through urine.  If you have a lot of diarrhoea then the kidneys cannot regulate the water/sale proportions correctly within our body.  This means when restoring the water content you may need to restore your salt at the same time.

Will I become dehydrated?

Dehydration may not be a problem for everyone with IBD. However, you may be more likely to become dehydrated if:

·         You suffer from frequent or watery diarrhoea

·         You are not drinking enough water, because, for example, you are feeling nauseous or have lost your appetite through illness

·         You are losing more than usual amounts of water and salt through your skin because you are sweating excessively e.g. hot weather, exercise, fever

·         Your urine output is too high from uncontrolled diabetes, taking diuretics e.g. caffeine

·         You have drunk too much alcohol. Alcohol is a diuretic, which increases the amount of urine you pass

·         You are suffering from gastroenteritis (a stomach or bowel infection), which can be caused by a virus or bacterial infection, or by food poisoning

·         You have had your colon removed

·         You have an ileostomy (or stoma), because output from an ileostomy contains more water than normal stool

·         You have a very short bowel as a result of extensive surgery

·         You have bile salt malabsorption. This can happen if you have Crohn’s in the ileum (the lower part of the small intestine), or you have had a resection in that area.

How will I know if I am dehydrated? 

·         Thirst is the first sign

·         Dry mouth

·         Headaches

·         Tiredness

·         Lack of energy

·         Feeling faint

·         Pass urine less than 3 or 4 times in a day

·         Dark urine

·         Constipation

Seek medical advice with any of the following symptoms:

·         Dizziness

·         Muscle cramps

·         Pale/dry skin

·         Sunken eyes

·         Confused/disorientated

·         Difficult to rouse

·         Lips turn blue

·         Breathing/pulse becomes rapid

What should I do if I become dehydrated?

To treat dehydration you will need to rehydrate your body.  Drinking plain water may not be enough as you will need to replace any essential sugars and salts as well as the water lost.

For mild and moderate dehydration you will need to increase your fluid intake and the level of the salt in your body.  You can buy over the counter rehydration salts such as, Dioralyte.  However, you can also drink water or flat coke and eat a salty snack e.g. crisps.  If this does not help and you still feel dehydrated speak to your doctor.  They might suggest making a homemade Oral Rehydration Solution (ORS).  The usual recommendation is to drink the full litre in one day, sipping it slowly to maximise the rehydrating effect.  It was developed for people with a short bowel, and may not be as useful for people with diarrhoea caused by other forms of IBD.

A similar rehydration solution can be made by dissolving eight sachets of Dioralyte in one litre of water (instead of one per 200ml). This solution then also contains potassium (an essential mineral), unlike the ORS above.

It is particularly important to check with your doctor before taking an ORS if you are diabetic. This is because both of these solutions have a high sugar content and can increase blood sugar levels if drunk very rapidly or in large amounts (more than one litre a day). Your doctor may suggest you see a dietician. You should also talk to your doctor before taking an ORS if:

·         Your ankles are swollen

·         You are taking diuretic tablets (encouraging urine production)

·         You are known to have kidney problems

·         You are taking tablets for heart or blood pressure problems.

Please seek medical help immediately if you think you have become severely dehydrated.

Oral Rehydration Solution (ORS)

3.5g (approx. one level 5ml teaspoon) table salt

2.5g (one heaped 2.5ml teaspoon) sodium bicarbonate (baking soda)

20g (6 level 5ml teaspoons) glucose or sugar

Make up to 1 litre with water. If preferred, use carbonated water and/or flavour with low sugar fruit squash. Refrigerate and drink chilled.

How can I avoid becoming dehydrated?

·      The easiest way to avoid dehydration is to make sure that you drink enough water. In the UK, to keep well hydrated, most people need to drink about two litres (about eight to ten average size glasses) of water a day. You will need more in hot weather or hotter climates, or when exercising or playing sports, when you lose more salt and water through your skin.

·         Drinks such as tea, coffee and cola will also help, but because these contain caffeine they are mild diuretics and will make you urinate more. So, such drinks are slightly less effective at rehydration.
·         Be aware of situations when you may be more likely to be susceptible to dehydration - for example when it is very hot, or you are active. Don’t wait until you feel thirsty before you start drinking extra water.
·         Sip your drinks rather than gulping them down. This will help you to avoid getting too much air into your system, which can cause discomfort.
·         A balanced diet that includes foods rich in essential body salts (potassium and sodium), such as avocado, bananas and marmite, can also help to maintain the electrolyte balance in your body.
·         Avoid drinking alcohol.

Will increasing my fluid intake make my diarrhoea worse?

If you have IBD but a normal or near normal bowel length, increasing the amount of water you drink should not worsen your diarrhoea. This is because the diarrhoea is more likely to be caused by your IBD rather than as a direct result of a failure to absorb fluid from the bowel. For the same reason, restricting how much you drink will probably not help to lessen the diarrhoea. However, it could still increase the likelihood of you becoming dehydrated.

If your diarrhoea does seem to be getting worse, and is very troublesome, anti-diarrhoeals such as loperamide (Imodium) or codeine phosphate may help. However, it is a good idea to check with your doctor or IBD team before taking these.

If you have a stoma, it is particularly important to drink enough water to keep yourself well hydrated. You may also need to add extra salt to your diet, and perhaps take an ORS. Check with your doctor first.

ORS drinks can be useful if you have a short bowel, or a high output ileostomy, but with these conditions you may also need to restrict your fluid intake to avoid dehydration. Your IBD team will tell you if this is the case, and can also help you manage your general diet and fluid intake.