Posted by DeadAnarchistPhil on October 25, 2008
I’m writing this to document and introduce you all to illness you may not have heard of. It’s a disease I suffer from called Ulcerative Colitis (UC), it’s a form of Inflammatory Bowel Disease (IBD) of the large colon/intestine. I’m also writing this for anyone who suffers from UC and has just been diagnosed with it, because when I was first diagnosed I could find no personal accounts of UC anywhere, a Doctor telling you X Y and Z wasn’t good enough for me because they aren’t the ones suffering with it. They also hold back with a lot of info. So this is for suffers of UC to know you are not alone and UC CAN be controlled and DOES get better! This is part one explaining what UC is from a person who actually suffers with it. Part two will be my personal experience. After that I will be writing a Ulcerative Colitis Diary once a month or so in-between my other blog material, for my own benefit mostly, but also because I think it makes a good topic and gives me the incentive to record and document what happens with my UC.
What Is Ulcerative Colitis?
Ulcerative Colitis (UC) is a form of Inflammatory Bowel Disease (IBD) that affects the large intestine mostly but can spread to other areas of the body, I’ve never had it spread beyond my colon, luckily! The symptoms of UC are constant bloody diarrhea, abdominal cramping of varying degrees of pain, chronic inflammation and open sores (ulcers) in the colon, excess smelly gas, fever, vomiting and constant tiredness. There is varying severities to the illness and I’m familier with all four. The varying severities are (from Wikipedia):
(1) Mild disease correlates with fewer than four stools daily, with or without blood, no systemic signs of toxicity, and a normal erythrocyte sedimentation rate (ESR). There may be mild abdominal pain or cramping. Patients may believe they are constipated when in fact they are experiencing rectal tenesmus, which is a constant feeling of the need to empty the bowel accompanied by involuntary straining efforts, pain, and cramping with little or no fecal output. Rectal pain is uncommon.
With this you think you just have really bad wind or a touch of Irritable bowel. You back will ache. Can be uncomfortable and inconvenient.
(2) Moderate disease correlates with more than four stools daily, but with minimal signs of toxicity. Patients may display anemia (not requiring transfusions), moderate abdominal pain, and low-grade fever, 38 to 39 °C (99.5 to 102.2 °F).
This is tolerable but can get very painful at times, you’ll feel tired a lot because of all the blood you’re losing. You’ll possibly lose your appetite. You may get a fever, but only light… if any at all. Your back and abdomen will ache because of constant straining.
(3) Severe disease, correlates with more than six bloody stools a day, and evidence of toxicity as demonstrated by fever, tachycardia, anemia or an elevated ESR.
I’ve spent most of my UC time in this zone, over a year and half! The fever will become more stronger. You’ll feel really tired and lose more blood, lose your appetite (it’s not unusual to still have one), vomit and have bad pain in your abdomen that requires strong pain killers. You’ll spend a lot of time on the toilet and your social life will be none existent.
(4) Fulminant disease correlates with more than ten bowel movements daily, continuous bleeding, toxicity, abdominal tenderness and distension, blood transfusion requirement and colonic dilation (expansion). Patients in this category may have inflammation extending beyond just the mucosal layer, causing impaired colonic motility and leading to toxic megacolon. If the serous membrane is involved, colonic perforation may ensue. Unless treated, fulminant disease will soon lead to death.
This is bad! I’ve touched this zone and it isn’t nice. My average bowel movements some days were twelve, but I never stayed in the zone long enough to experience the full force of this zone! You’ll not sleep even though you’re really tired, you wont want to eat, you’ll vomit and the fever will be in full force. It’s quite painful too, almost constant.
Extent Of Involvement
Ulcerative colitis is normally continuous from the rectum up the colon. The disease is classified by the extent of involvement, depending on how far up the colon the disease extends:
Distal colitis: Potentially treatable with enemas.
Proctitis: Involvement limited to the rectum.
Proctosigmoiditis: Involvement of the rectosigmoid colon, the portion of the colon adjacent to the rectum.
Left-sided colitis: Involvement of the descending colon, which runs along the patient’s left side, up to the splenic flexure and the beginning of the transverse colon.
Extensive colitis: inflammation extending beyond the reach of enemas.
Pancolitis: Involvement of the entire colon, extending from the rectum to the cecum, beyond which the small intestine begins. I only ever had this type, if you got any of the others… you got a better deal than me! You can feel it mostly in the left side and under you navel near the pubic bone. You can however feel it on the right when you go to the toilet sometimes.
What Causes UC?
No one really knows what causes UC, there are many theories but so far none of them have been proved. Here are some theories that are thought to be causes; heredity, genetic factors, environmental factors and disturbances of the immune system. It is thought that an abnormal immune system is the chief cause of this. When I say “abnormal immune system” I mean this (from Wikipedia):
1. Disturbance of immune system: Some experts believe that there may be a defect in one’s immune system responsible for ongoing inflammation in the intestinal wall. The disturbance is thought to be either of two.
1B. Allergy: Some studies suggest that Ulcerative colitis is a form of exaggerated allergic response to certain food or to the presence of some microorganisms present in the intestine.
1a. Autoimmunity: Autoimmunity simply means allergy to oneself. Most recent research indicate that ulcerative colitis can be a form of autoimmune disease in which body’s defense system starts attacking the body’s own organs and tissues. One amongst them being large intestine.
There’s also the Hereditary and Genetic factors:
2. Genetics: Current research suggests that certain genetic factors may increase the likelihood of a person having Ulcerative colitis.
3. Hereditary factors: If any of your immediate family members has ulcerative colitis, then your chances of having the disease increases.
My personal view of the allergy idea is this, I have never been allergic to any types of food or medicine! I did however have an allergic reaction when I was 9 or 10. I still have no idea what caused that to this day, I was playing in sand and my hand swelled up. There was a bee flying away at the time, but I’ve been stung off bees and wasps before and never had such a reaction. So that ideas out. There’s the autoimmunity, er… it’s possible! But even after people have their colon removed they can still suffer with UC. As for genetics and hereditary, well my Grandmother’s niece is the only person I know of in the family to have had UC, and she only had it for a short time, she was confined to hospital for two weeks for bed and bowel rest. She never had it after that. I did however find something interesting about people who have UC’s ancestry. It’s thought that UC occurs in more cases of people who are Ashkenazi Jews or descendents of Ashkenazi Jews. Ashkenazi Jews had been settled in Northern Europe since the early 900′s and then came to England during the Norman Conquest before their expulsion in 1290. So it is possible I have some Jewish ancestry that causes this, then again I have a friend on-line that has UC and she’s east asian in decent! Maybe we’re just unfortunate to have random mutations then… who knows?
I came across something interesting not long after I was diagnosed with the UC. I read that antibiotics may cause and does make UC worse. Well, before I got the UC I was taking a course of antibiotics called ‘Erythromycin’ for acne I had. I had been on them for around a year and a half (maybe longer), before that I used a topical solution for my acne that didn’t have much effect. The particular acne treatment that is said to cause this, Roaccutane, is not what I was taking before the UC started. I did however take Roaccutane after the UC to get rid of the extremely bad acne the UC medication had caused, and the UC was still pretty well controlled.
Cure And Medication For Ulcerative Colitis
There is no known cure for you UC, though having the colon/large intestine itself removed is considered a cure by many. The procedure, a Colectomy (surgical removal of all or part of the colon), is only considered if the patient is not responding to medication, is suffering constant internal hemorrhaging, has Toxic megacolon (a extremely diolated and distended colon) or there is a cancer present caused by the UC. Even if the colectomy is carried out it is not a guarantee that the UC will be cured. Some people have reported UC present in the remaining colon (if any) and in the stoma or new pouch made from the lower intestine after the stoma has been reversed. I wouldn’t personally want this done unless my life, or quality of life depended on it.
There are three main types of medications, these are: (from Wikipedia):
Aminosalicylates: These drugs, which can be given either orally or rectally, interfere with the body’s ability to control inflammation. They are effective in treating mild-to-moderate episodes of ulcerative colitis and Crohn’s disease, as well as preventing relapses and maintaining remission.
I have and still do take these. Ever since I developed UC I’ve been taking Mesalazine. I take two tablets three times a day. It’s used in the cases of mild to moderate UC, which explains why it didn’t do nothing for me at the worse times.
Corticosteroids: The main use of corticosteroid medicines is to reduce inflammation. Corticosteroid medicines are widely used for a large number of different conditions, including osteoarthritis, asthma, cystic fibrosis, pancreatitis and multiple sclerosis and skin disorders.
I took Prednisolone Suppositories for a time, but they did nothing for me. I used to take 3 to 4 a day. I also did and still do take a Predfoam enema, I take it twice a day. The thing is it’s only used for people with left-sided colitis, my whole colon was affected by the UC (pan colitis). Which explains why it didn’t work in the early days of my UC..
Immunosuppressive drugs: Are drugs that inhibit or prevent activity of the immune system. They are used in immunosuppressive therapy to Prevent the rejection of transplanted organs and tissues and Treat autoimmune diseases or diseases that are most likely of autoimmune origin like, Crohn’s disease and Ulcerative Colitis!
I’ve never had any of these yet, they are only used when the UC is very bad, and as you’d expect they suppress the immune system, which can be dangerous because you can die by a simple cold.
Biolgical Treatment: This involves the use of medication that is tailored to specifically target an immune or genetic cause of a disease. Even for diseases of unknown cause, molecules that are involved in the disease process have been identified, and can be targeted for biological therapy; many of these molecules, which are mainly cytokines, are directly involved in the immune system.
This treatment is still experimental, there is only one that actually is for use! I don’t think I’ll be taking this any time soon as some of the side effects include blood loss and even cancers!
Alternative Treatments And Diets
There is also herbal and natural help in the form of fish oils, Aloe Vera, Chamomile or peppermint tea, Boswellia (Frankincense) in tablet form, there are a few others. They all do help to a degree, but I don’t think they’re are an option for me really, but that doesn’t mean they are not worth checking out. There is a diet called ‘The Specific Carbohydrate Diet’, that is said to help and pretty much stop UC in its tracks. The diet basically says you can’t have complex carbohydrates, refined sugars and lactose (milk) over a certain amount. It’s basically a diet that denies you all our modern foods, sort of athrow back to the days before we had refined foods and added bits and bobs. The lady who made this diet says the reason we have IBD’s is because of our modern diets filled with unnatural foods that are hard to digest and help bad bacteria to flourish which then cause the inflammation in IBD’s. But I think if that was the case why doesn’t the whole of the population suffer with it? I don’t think a bad diet alone is wholly to blame. Genetics may play a part. But the diet does work, my on-line friend with UC has been on the diet for three years or so and it has been a benefit for her, the only draw back on it is it can be very bland and boring at times. I don’t think the diet by itself would get rid of UC, my friend takes it in conjunction with her medication and she still never reaches 100%, but hey, 80 or 90% is better than nothing and it’s certainly better than nothing at all or being dead.
Side Effects Of Ulcerative Colitis
You may not want to hear this but suffering from Ulcerative Colitis brings other undesirable effects other than the illness and the symptoms it brings. There’s the side effects the medication brings (depending on which medication you’re taking), there’s hair loss, face swelling, acne, wind, dizziness and mouth ulcers. This doesn’t happen to everyone. To be honest the only side effect you need to look out for is hair loss and face swelling. There’s also an increased chance of cancer of the colon after ten years if you suffer from left-sided colitis, extensive colitis or pan colitis. So you will be checked for cancer via screening by colonoscopies (a camera put in to the colon) eight years after you first developed the disease. But not to worry if you have either of the above, most people with UC who discover cancer can have it removed or treated successfully!
UC also has effects on your social and private life. If you had an active life before you developed it, you’ll have to put it on hold till you get better. There’s not a lot of chance you can go out and what you did before, especially if you used to drink as that can make UC worse! Even if you didn’t drink you wont be leading a normal private life for at least six months! But even if you have it for six months you start to think if you’ll get better or whether you can actually have a normal relation ship with someone again. I don’t know about that as I’ve not had a relationship since I got my UC, it’s something I still wonder about, but I know of some people who are in relationships and their UC is/was and sometimes is worse than mine, so it’s possible!
There’s jobs too! You may have to change your job if it is a stressful one, stress sets of UC. If you can afford to change jobs you may want to consider having your colon taken out. The same goes for quality of life, if you find the UC isn’t clearing up and the medication isn’t working you may want to consider that too!