1. i posted a comment on the official crohn's Facebook page and theses are the comments.
1.1. Steve Jones said "I’ve only known I’ve had crohns for about 4 months. If I had to summarize it: we have swings of flare ups and remissions that are very difficult to control. At times we feel completely normal and other times we can be on the brink of wanting to give up hope because the pain and the other symptoms are so bad. We can go from feeling fine to hospitalized. I never would have thought I would have ever been envious of someone because of their lack of diet or diet control, but the thoughts of never being able to eat certain foods because they can lead to flare ups is heartbreaking."
1.2. Chrystal Luton said "I have had Crohns for 20 years and during that time...plenty of ups and downs. Just last year in June I was so sick and in need of another bowel resection...but was scheduled to go on a much needed cruise with my mom in less than a month. Knowing how she had always been there when I was sick I got really down and depressed and felt as though I would be letting her down once again. My doctor stepped in and decided that there was no way I was missing this time with her. He loaded me up on fluids for weeks, antibiotics, steroids and then sent me on my way to the Caribbean with an unlimited supply of phenergan and pain meds. It was the greatest vacation ever even if I was doped to high heaven. The day after we returned I went in for my resection and my doctor only wanted to know that I had a great time. Even we when feel like the doctors are just robots doing what they have been trained to do it is something beyond special who just want noth>ng more than to bring happiness into this awful disease"
2. benefits & emotional support
2.1. people who are diagnosed with Crohn's disease can find day to day life difficult for a variety of reasons. as a result of this they could be entitled to disability benefits such as:
2.1.1. personal independence payment (PIP): this is benefits for people over the age of 16 who could be struggling with little things from pain alone to typical day to day activity's like making a cup of tea. this is on a points based system where you score points on the activitys and detirmends if you can have pips and if so how much you can claim monthly.
2.1.2. Disability living allowance for children (DLA): this is for children under the age of 16 who struggle to do the same activity's as other kids their age who have not been diagnosed.
2.1.3. Employment and support allowance (ESA) and Universal credit (UC): this is for people who has an illness that has made it hard to work a steady job. this is being introduced more and more throughout the UK.
2.1.4. Attendance allowance (AA): This is for those of the state pension age and is more for people who cannot go to the bathroom by themselves and/or getting dressed in the morning.
2.2. Crohn's can lead to many mental health problems and as a result people can be embarrassed to talk about both crohn's and mental health. on the Crohn's and colitis UK website they have a help line with free 40 minute calls to try and help calm someone at need.
2.2.1. they also have young person video's and a variaty of family events all over the UK that can help parents understand what you are going through and the battles that are going on in your head.
3. About Crohns Disease
3.1. Crohn's disease and Colitis are the two main forms of IBD, affecting more than 300,00 people in the UK. yet they are a largely hidden disease that causes stigma, fear and isolation. it has been reported that people go undiagnosed and suffer in silence. it doesn't have to be like this!
3.2. symptoms
3.2.1. Crohn's is a cronic disease meaning it is a ongoing/life-long condition which symptoms vary from person to person and can be severe or mild. your symptoms can change over time and you go through stages of remission where you show no symptoms.
3.2.2. The main symptoms of IBD:
3.2.2.1. - Diarrhea: This is sometimes mixed with blood, mucus and puss
3.2.2.2. - Cramping pains in the abdomen: These can be very severe and often occur before passing a stool.
3.2.2.3. - Tiredness and fatigue: Tis can be due to the illness itself, from anaemia from the side effects of some of the drugs used for IBD or from lack of sleep if you have to keep getting up at night with the pain or diarrhea.
3.2.2.4. -Feeling generally unwell: Some people may feel feverish.
3.2.2.5. -Loss of appetite and loss of weight: Weight loss can be due to the body not absorbing nutrients from the food you eat because of the inflammation in the gut.
3.2.2.6. - Anemia (a reduced number of red blood cells): You are more likely to develop anemia if you are losing a lot of blood and are not eating much.
3.2.3. Some people can get:
3.2.3.1. - Strictures: This is when there is ongoing inflammation and then healing in the bowel which may cause scar tissue to form. This can create a narrow section of the bowel, called a stricture.
3.2.3.2. - Fistulas: A fistula is an abnormal channel or passageway connecting one internal organ to another, or to the outside surface of the body. These are more common in people with Crohn’s Disease.
3.2.4. IBD can affect other parts of the body like:
3.2.4.1. - Joints: Inflammation of the joints, often known as arthritis, means that fluid collects in the joint space causing painful swelling. It usually affects the large joints of the arms and legs, including the elbows, wrists, knees and ankles
3.2.4.2. Eye inflammation. The most common eye condition affecting people with IBD is episcleritis, which affects the layer of tissue covering the sclera, the white outer coating of the eye, making it red, sore and inflamed.