There’s Something About Crohn’s
Geraldine John 1
Hi, I’m Geraldine. I was diagnosed with Crohn’s Disease in September 2010 at the age of 17. I had had symptoms for over a year before that so to finally put a name to a face offered some small comfort. Knowing I would have it for life, however, was less than reassuring. It is stressful dealing with a chronic illness, visiting the doctor’s office often and remembering to take all your medications, all while just trying to live a “normal” life. People with an Irritable Bowel Disease may be embarrassed by their symptoms or the frequent need to use the bathroom. They may feel uncomfortable talking to their friends or family about their disease and can often feel like an outsider. Throughout this guide I will try to shed light on this disease for people who do not know what it is and for people who are curious about it because they know someone who has it. The aim of this guide is not to scare you. If you want the thrill of knowing something horrible might happen, the internet is at your disposal. Also, to make it easier, know that people who have Crohn’s are referred to as ‘Crohnies’. This is my guide to Crohn’s. I won’t write in medical terms unless necessary because some of them are scary and most of them are unnecessary. Ever heard of an Esophagogastroduodenoscopy? You will soon…
Table of Contents
1. What is Crohn’s Disease? 2. What causes Crohn’s? 3. Diets Explained 4. Medication and Treatments 5. Surgery and Other Procedures 6. Always Look on the Bright Side… 7. Useful Websites and Books
1. What is Crohnâ€™s Disease?
Basically, we know nothing for sure about Crohn’s. We don’t know where it comes from, what causes it or why it won’t go away and leave us alone! What we do know is very vague and you simply have to venture online – if you dare - to see that everyone contradicts everyone. There is an incredible lack of knowledge and research about it as it was only discovered in 1932 and not many people have it compared to something like Cancer. This is the most basic definition that I could come up with. Crohn’s is part of a bigger family of diseases, inflammatory bowel diseases (IBD). They are a chronic inflammation of the intestines that is not due to infection. That means that your intestines are becoming raw and bloody and it’s nobody’s fault. There are two main types of IBD: Crohn’s Disease and Ulcerative Colitis. Crohn’s Disease can involve any part of the digestive system from mouth to bottom. It is commonly diagnosed between the ages of 20 and 30; although people of all ages can suffer - I told you it was vague. It affects men and women equally. The disorder causes gastrointestinal (GI for short) inflammation mostly the small intestine, where vitamins and nutrients must get absorbed. Crohn’s limits absorption of a nutrient, which may lead to anaemia lack of oxygen in the blood cells - which means that Crohnies are often tired and pale. Symptoms include pain, diarrhoea, rectal bleeding, weight loss, arthritis, massive skin and eye problems and fever. Crohn’s also leads to holes and ulcers in the small and large intestines and can severely impact on sufferers' quality of life. What all that means is that we have an ulcer somewhere in our GI tract. It is a very inconvenient place to have one because it can never heal. We always have food or liquid passing through and getting caught on them. That is what causes pain. And we
canâ€™t just stop eating and drinking. That is why we have to avoid eating certain foods which would get caught up in the ulcers. Inflammation is also the main reason why people with IBD use the bathroom more often than other people. The inflammation in the bowel makes it harder for the bowels to absorb liquid resulting in diarrhoea and urgent bowel movements.
N.B.: Do not confuse IBD with irritable bowel syndrome (IBS). Although the symptoms of IBS are sometimes similar to those of IBD, the disorders have very different causes and treatments.
2. What causes Crohnâ€™s?
Theories differ greatly on what causes this illness. Some scientists believe that a protein produced by the immune system may cause it. Our body is loaded with proteins defending us from infection. In this scenario, the immune system would react abnormally and mistake alien bacteria for invaders and attack them. White blood cells and pus would accumulate in the lining of the intestines, producing chronic inflammation, ulcerations and bowel injury. When describing Crohn’s most people say it is an auto-immune disease because our own immune system seems to be causing it. The most common theory is that the immune system overreacts - or underreacts depending on the theory – in the GI tract which means that our body is in short destroying itself. Another theory concocted by scientists (who put them in charge anyway? They aren’t doctors) is that Crohn’s is a genetic predisposition. It’s like saying you were ‘meant’ to have Crohn’s. This is not, however, proven. According to the Crohnology social networking website most people are the first in their family to be diagnosed. This makes certain people believe that Crohn’s is a ‘new’ disease appearing especially in Western civilisation. It would make sense seeing as young people are affected rather than older people and our eating habits have changed immensely in the last 60 years. I blame the parents… The last one I read said that a bacteria found in cow’s meat could give you Crohn’s Disease. New theories surface every day so don’t believe all of them.
3. Diets Explained
You’ve probably read about different types of diets on the internet or heard your Crohnie talk about them. The fact is there is no scientifically proven diet for IBD. We can identify foods that trigger our GI symptoms but that’s about it. For example, I can’t tolerate lactose or fizzy drinks. By avoiding our trigger foods we may find that some of our symptoms such as gas, cramping and diarrhoea are more manageable. And it gives our intestines time to rest and heal a bit. The foods that trigger symptoms differ for each of us. To know which foods hurt us we have to grit our teeth and try them. It is a game of trial and error for every single one of us. Some of us can tolerate cereals, some of us can’t. So having you breathing down our necks and asking us ‘can you eat that?’ or my favourite one: ‘are you allowed that?’ is really unhelpful. Even if we do eat something ‘we’re not meant to’, what do you think is going to happen? Do you think we will start foaming at the mouth and suddenly hit the deck? I can assure you that will not happen. Sorry to disappoint. Digestion can take up to 30 hours and by then we are likely to have forgotten what it was we ate in the first place! We do not want nor need your phony advice so stay out of it! Rant over. If you must know what we ‘can’ and ‘can’t’ eat, many of us find that the foods on the following list aggravate symptoms during flares - when Crohn’s symptoms are worse:
alcohol (mixed drinks, beer, wine) butter, mayonnaise, margarine, oils carbonated (fizzy) drinks coffee, tea, chocolate dairy products (if lactose intolerant) fatty foods (fried foods)
foods high in fiber (vegetables, fruit) gas-producing foods (lentils, beans, cabbage, broccoli, onions) nuts and seeds (peanut butter) red meat (it takes ages to digest) spicy foods whole grains and bran
The most common diet is the Low Residue. It is usually the first diet our GI doctor puts us on. Basically, we cannot eat anything mentioned on the list above. It works quite well but it doesn’t and will never cure us. You might hear people say that a diet can cure Crohn’s. This is rubbish and not proven. Stay clear of these people because they are aggravating. Next, they’ll tell you they know of a witch doctor who can cure Crohn’s altogether… Another popular diet is the SCD (Specific Carbohydrate Diet). The carbohydrates are specific because only the ones with a single molecule structure that allow them to be easily absorbed by the intestine wall are allowed. There are books written about the SCD if you are interested. As I understand it, food is sorted into two groups: ‘legal’ and ‘illegal’. This is decided by the person who created it. For example, it is ‘legal’ to eat certain fruits, like apples, and certain vegetables, like Brussels sprouts. Many people are pleased with this diet as it is less restrictive than the Low Residue but many remained confused about what the diet says they can or can’t eat. The full list of legal/illegal foods are on the SCD website (I have it written down for you at the end).
A Liquid Diet can also be used for Crohn’s Disease as it will give the intestines a well needed rest and give them time to heal. Some are also high-calorie liquid diets, which helps when our bodies aren’t absorbing enough nutrients we usually get from real food. When we don’t get these nutrients we become undernourished or malnourished and that leads to all sorts of complications such as anaemia and/or vitamin deficiency. Each part of our GI tract absorbs certain nutrients. For example, vitamin C is absorbed in the ileum (the last part of the small intestines). So if the ulcers are in that part of the GI tract, we may suffer from vitamin C deficiency. In that case, we either take supplements or eat whatever fruit we can tolerate that contains some. To be honest, the SCD sounds like a sect to me so I’m just sticking to the foods I know I can tolerate and I occasionally try other stuff. And sometimes, I even eat food I know will hurt me later. What of it? I’m only hurting myself after all. And if that fizzy drink or meal was that good then everything is fine and dandy as far as I’m concerned. It was well worth the pain. I want to make it clear that eating the ‘right’ food will not help us getting into remission. A diet will never cure or fix us. It is a myth.
4. Medication and Treatments
There are lots of different treatments offered to us. What we need to determine is whether we want to reduce the inflammation or suppress our immune system entirely. When newly diagnosed, we are usually given corticosteroids called Prednisone which reduce inflammation and also give us a welcome boost. The thing to remember with this medication is that you must decrease the dosage slowly. You cannot under any circumstance stop taking it suddenly. This will result in an immediate crash of your body. Side effects of Prednisone can include weight gain, hunger, and changes in mood and sleep patterns. These usually improve as the dose is lowered. Other side effects can include weakening of the bones, increased risk of infections, high blood pressure and stomach irritation (how convenient, we already have that). The next step (because we can’t stay on steroids forever) is more complicated. It all depends on the severity of the Crohn’s and the GI doctor. These are the most common treatments. If our Crohn’s is mild to moderate we are given Mesalazine, known as Pentasa or Asacol mostly. It can be taken by mouth, given by suppository or even by enema (up the bum). Side effects of this treatment include allergic reactions, pancreatitis, and kidney injury. If your Crohnie is taking this medication, they should wear sunscreen when they go in the sun to avoid getting sunburnt. So do not blame them for wanting to stay out of the sun. Saying ‘but you should get some colour on you, you’re so pale’ is likely to make us go red with anger.
The next treatment is Azathioprine or 6-MP (6mercaptopurine). It is commonly known as Imuran in the UK, Imurel in France and Azasan in the US. It is an immunosuppressant drug. That means it literally deletes our immune system and with that the inflammation. This follows the most popular theory that Crohn’s is caused by our immune system overreacting in our GI tract. This treatment does not work right away; it can take up to 6 months until we feel the benefits of it. By then, the sideeffects can become so bad and our Crohn’s might have worsened so we have to stop the treatment and move on to something stronger. Blood tests play a big part in this to check for possible side effects, including low white blood count and irritation of the liver or pancreas. People taking this should also stay out of the sun or wear SPF30. We now come to the serious treatments. These are used for full-blown out of control Crohn’s. If these fail the last resort is usually surgery. Methotrexate suppresses the immune system. It can be given by shot or by mouth. For chemotherapy patients it is given by infusion. That is how powerful this treatment can be at a higher dosage. Blood tests are done regularly to check everything is normal blood cell wise. The last one is called Anti-TNF. There is a protein in our body called TNF-alpha (Tumour Necrosis Factor). It is made by the immune system. We may produce too much of it which could be the cause of inflammation. The point of this treatment is to block the action of that protein. The three main medicines are:
- Infliximab or Remicade, which is administered by IV (intravenous) infusion. It takes about three hours to infuse. It is given roughly every eight weeks depending on the severity of our symptoms. It is also used in the treatment of arthritis, psoriasis and lupus so the sideeffects often mimic these auto-immune disorders. Other side effects include allergic reactions, skin problems, etc. This treatment is the strongest one I have had yet. It is very aggressive and basically kills everything. It’s like weed-killer except you are the weed. Some of your hair falls out, your nails become brittle, you can gain weight, you are prone to infection (anything going around, you get it). The side-effects seriously outweighed the benefits for me. It is a very personal thing and some people don’t get on with certain drugs. - Adalimumab or Humira, which is given by injection every two weeks. We usually do it ourselves using either massive pens or syringes. These utensils have to be kept refrigerated so always ask before you decide to clean the fridge out! The difference with Infliximab is that we have more freedom. We don’t have to plan our lives around our next infusion. The side effects are the same as for Infliximab. - Cimzia, which is given for moderate to severe Crohn’s, is also administered using a pre-filled syringe every month. It also has to be kept in the fridge. It is very much like Humira so it just depends which one the GI doctor thinks is more appropriate. The side-effects are the same as for Infliximab. Before any of these are given, GI doctors check us for tuberculosis.
In addition to a treatment for actual Crohn’s, we usually have vitamin supplements and/or iron supplements. Most of us are anaemic which means that we are either losing blood somewhere or not absorbing enough iron. If it is the latter, we are given supplements which may or may not agree with us – they are sometimes too strong. If that happens or if the iron deficiency is too important, our GI doctor may give us IV infusions or vitamin B12 shots. The two are linked but it is up to the doctor to decide which one is more appropriate. For all you hippies and others who don’t believe in medical treatments, there are alternatives available. Some believe that acupuncture is the way to do it. Acupressure is another popular solution. Some have felt the benefits of having this but a medical treatment is strongly advised especially when newly diagnosed – you don’t know what this disease can do to you – and during flares. When in remission, it is up to us to find out what we feel we need.
5. Surgery and Other Procedures
Medical treatments are usually at the top of the list for our GI doctor and many of us respond well to them. However, a staggering amount of us will eventually need a surgical intervention due to complications that cannot be solved by treatments alone. A common intervention is for an intestinal obstruction. It means there is a blockage and food cannot pass through which results in incredible pain, possible weight loss (not the good kind) and vomiting (the food has got to get out somehow). Another complication that requires surgery is if there is a hole or a tear in the intestines. This is dangerous because it could become infected and also affect other parts of the body as everything passing through will go out. A scary one this time is when a fistula appears. It is when the intestine connects to another part of the body it doesn’t usually connect to. It doesn’t connect to the brain or anything; obviously. It connects to somewhere close-by like the surface of the skin. A Strictureplasty is done when a part of the intestine becomes too narrow or tight. This procedure avoids taking out that section by widening it. It is used most in the last parts of the small intestine called the jejunum and the ileum. An intestinal resection is done when a part of the intestine is so infected and so unhealthy that it must be taken out. The two ends are then joined together. This does not cure Crohn’s. Crohn’s is very vicious and will simply move somewhere else, either nearby or somewhere completely different like the oesophagus.
I’ve saved the worst until last: a Protocolectomy with ileostomy. Doesn’t ring a bell? What if I said a ‘pouch’ or a ‘bag’? This is reserved for extremely severe Crohn’s. The colon and the rectum - the last part of the intestines and the anus – are removed. A hole is surgically created in the abdomen (ileostomy) for the removal of stool (poo). Afterwards, a bag is worn externally. It can be temporary or permanent. Newer surgical techniques mean that the bag is most often temporary. Now, for the other procedures. These are not really considered to be surgery. They are used to diagnose Crohn’s and to keep a check on it. The esophagogastroduodenoscopy (EGD) is a test done to check the lining of the oesophagus, stomach and duodenum – the first part of the small intestine. It is done using a flexible tube that goes down your throat with a camera and a light fixed on the end of it. This is done to look for redness, swelling, bleeding, ulcers or infections. A biopsy – the doctor collects samples of the tissue to examine it - is also done. The colonoscopy is the same thing as the EGD except that it goes up the other end and examines the colon instead. Before a colonoscopy a preparation is in order. You have to drink 2 or 3 litres of salty water and nothing else the day before. This is to purge your GI tract and clean everything out. You start wondering why you seem to have eaten all the food in the world…
6. Always Look On The Bright Side…
It can be very depressing to be told at a young age – or at any age - that you have an incurable disease. Life suddenly seems insurmountable. You feel run down, exhausted. All you want to do is sleep and forget about everything. And you can’t even do that because you constantly need to go to the toilet. A mixture of fear, shame and anger along with anxiety often takes hold of you. Relationships become complicated with everyone. I remember feeling so angry at the world. How come these people are allowed to be healthy and I’m not!? I would just burst into tears for no reason. Thinking back, it must have been terrible for my parents. They saw me like this every day and they couldn’t do anything about it. I told a few of my friends what it was really like and I only gave a medical definition to everyone else. I thought ‘why bother? They don’t really care’. I became very irritable and sensitive. I would interpret everything people said and apply it to me. Someone just had to say ‘how are you?’ and I would break down! I fell into a mild depression. I say mild because I never got suicidal. I did my fair share of crying though. Think about it: if your body was hurting you every day for no apparent reason and there was nothing you could do about it, how would you react? For me it was plain and simple, I lost all faith in the world and started hating everyone. Depression occurs often in this situation and it is very serious. You must take this person seriously and help in any way possible, even if it’s just giving a hug. Psychologically, it can be very damaging. We suddenly
become embarrassed about ourselves and start feeling like we are worthless piles of… dung. A few months ago, I found a forum on the internet which felt like a godsend. The people are so friendly and so willing to help. There, you will find friendship, support, laughter, information, knowledge and unconditional acceptance. Thanks to the lovely people on this forum, I have been able to cope with myself and others better and come to terms with my illness. I’ve written down the website at the end. It took me a year to accept the fact that, yes, I have an incurable disease and, no, I won’t be ‘normal’. But what is normal anyway? So I have to make a few adjustments in my life. So I have to know where the toilets are at all times. So what? It’s a part of me. Nothing I can do about it except smile through the pain and get on with it! I still get frustrated with people and, as my dad says, I don’t suffer fools. But now instead of shutting myself in my room, I talk to people either in real life or online. It doesn’t have to be terrible. Once you’ve swallowed the load, it can be alright. I don’t mind it so much anymore because I’m much more aware of everything now. I used to be so ignorant about the world. I had never heard of such a disease before the doctor told me I had it. And she didn’t even pull me to one side and say it in hushed tones! She told me outright that I had this and that was that! I did rely on the internet to tell me what Crohn’s was but I also found a lot of unpleasant things on there. It’s a matter of knowing where to look and knowing what to look for.
I am much more in tune with my body now. I used to be able to eat whatever I could find and not think twice about the effects it had. Now, I have to think about what I’m feeding myself. I have to know what I’m putting in there. And in some small microscopic way I have Crohn’s to thank for that. I see people filling themselves up with all the wrong foods and supposedly on diets and I just think they are nuts! They don’t know the true meaning of a diet and sticking to one! They can just give up whenever they like! I have a lot more determination and drive now because I have to stay well. It would be so much easier to just stay in bed and moan. But you can’t think like that. Otherwise it has beaten you. You’ve let it win.
7. Useful Websites and Books
http://www.crohnsforum.com/ I have found this extremely helpful and there is a section for friends and family. There is a real sense of community throughout this forum and I feel like it’s my second home. http://crohnology.com/ is a social networking site very much like Facebook. I get all of my answers from here and everyone is helpful. On Facebook, there is a private group called Life After Crohn’s Support Group. The administrator often posts funny pictures as a pick-me-up. http://www.webmd.com/ibd-crohns-disease/crohnsdisease/default.htm it keeps you up to date with everything in the medical world and it’s very accessible. I wouldn’t have survived without it! http://www.breakingtheviciouscycle.info/ this is the one I was telling you about earlier. It tells you about the SCD. http://www.crohnsdiet.com/ I discovered this one recently and it’s very good. I won’t be buying the book, though.
The ‘For Dummies’ collection. There isn’t a book for Crohn’s but there are some that relate to it such as ‘Medical Terminology’, ‘Anti-Inflammation Diet’, ‘Living Dairy-free’, etc. If you type ‘Crohn’s’ in the search bar on Amazon, there is a very wide array of books ranging from cookbooks to ways of getting you into remission.
‘The Body Garden’ photos by Geraldine John