Crohn’s is a disease that is just now getting some public recognition. People have been suffering from it for a while and nobody believed that they were suffering. It’s frustrating for the patients with that disease because nobody can really understand their pain. Another reason it’s hard to understand is because the disease affects each person differently. Completely different in some cases with how it affects patients.
I have two people in my life that suffer through this. Frankie, one of Chris’s triplets and Erica, who is a very close friend and will be marrying Chris’s brother in December. I say suffer because I have seen both of them doubled over in severe cramps. I have seen then both in the bathroom for hours dealing either with diarrhea, constipation, or vomiting. Both have had surgery because of their internal organs have failed them. Erica is in remission with few flare ups and Frankie never knows if he will be able to keep going on through life.
|Realistic pain scale chart for Crohn's Disease!|
I finally got frustrated enough with seeing how people treated them both. I have done research on this. It’s heartbreaking what they have to go through. I never knew some of the information until today while reading this information for this blog. For starters I love how these patients call themselves Crohnies. I want people to be aware of this disease like they are aware of cancer.
People devote time to cancer patients because so many are dying. I have to wonder if living a half-life is any better than dying. Crohn's disease affects between 400,000 and 600,000 people in North America. Affecting both males and females Crohn’s doesn’t pick just a gender. Smokers are two times more likely to develop Crohn's disease than nonsmokers. So the cancer sticks cause more disease than just cancer. This would be another good reason not to smoke.
Crohn's disease tends to present initially in the teens and twenties, with another peak incidence in the fifties to seventies, although the disease can occur at any age. Both people I know are in the twenties. Frankie has the more serious symptoms has known that he had since he was 17, but suffering from it since he was 15. This disease has no exact causes. Genetics and environmental factors are closely monitored.
There is no medically accepted pharmaceutical or surgical cure for Crohn's disease. Treatment options are restricted to controlling symptoms, maintaining remission, and preventing relapse. Some people have relapsed from it just like they do cancer. Years later the symptoms come back.
If people are having remissions after 10 or 15 years doesn’t that make this an old disease? Yes, as a matter of fact it. The disease was named after gastroenterologist Burrill Bernard Crohn, who, in 1932, together colleagues Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer at Mount Sinai Hospital in New York, described a series of patients with inflammation of the terminal ileum, the area most commonly affected by the illness.
When reading about inflammatory bowel diseases, it is important to know that Crohn’s disease is not the same thing as ulcerative colitis, another type of IBD. The symptoms of these two illnesses are quite similar, but the areas affected in the gastrointestinal tract are different.
Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon, but it may affect any part of the gastrointestinal tract, from the mouth to the anus. Ulcerative colitis is limited to the colon, also called the large intestine. In some cases, however, it may not be possible to tell the difference, in which case the disease is classified as indeterminate colitis. Frankie has been classified as indeterminate colitis.
Crohn’s is characterized by periods of improvement followed by episodes when symptoms flare up. With treatment, most people achieve a healthy weight, and the mortality rate for the disease is relatively low. However, Crohn's disease is associated with an increased risk of small bowel and colorectal carcinoma, including bowel cancer.
There is no cure for Crohn's disease and remission may not be possible or prolonged if achieved. Sometimes when remission happens relapse can be prevented and symptoms controlled with medication, changes in life, and in some cases, surgery. In some cases where Crohn’s treatments have worked the disease may not significantly restrict daily living. Erica can live a semi-normal life. She still has a ton of medication to take and treatments she has to do every week. And at times she has to have notes from her doctor to take to her classes because she is still in college. For her sometimes mandatory classes are not an option.However, Frankie is not that lucky. He lives with assisted living village and is younger than my 23 years.
It is proof that doctors and nurses don’t always have the answers. They both have had lifestyle changes. They both have had success and let downs when it comes to changes things in their lives to see if it helps with their symptoms that are called flare ups. Erica quit smoking and it helped hers to a certain degree. They both have found that eating in small portions has helped. They both have food diaries where they keep track of how every little morsel put into their mouth affects them. They both have foods that affect them. What is weird none of their foods match up at all. As for medicine they both have a pharmacy that they have to take.
A lot of people find this disease taboo because it deals with bowels and find it gross. For them, it makes dealing with their situation worse when people are grossed out by their problem. There are things you shouldn’t say to people who have lost a child, has AIDS, has cancer, or lost a limb. And there are things for people suffering from Crohn’s that they don’t want to hear. “That’s gross.” “You look great.” “You can’t always be this tired.” “You don’t look sick.” “You have to go bathroom again?” “You have to eat more than that.” “Just try this.” “You can’t eat that but you can’t eat this?”
After reading forums and articles all day I realized how much a hassle this is for these people. They both have handicap tags which some people don’t deem that it’s fair. Well they can’t control their bowels as the rest of us and they need to be able to access a bathroom as fast as they can. Erica told me when I was planning our Disney trip for Frankie that he would need a medical pass from Disney in the case he has a flare in the middle of the line and has to run to the restroom and we don’t have to back at the end of the line. I had forgotten that she too has to have a pass like that. If either one of them had jobs they would have to have a doctor’s note. Well Erica has a job but she is the owner of the company so she does her own thing.
|A Graphic Erica Gave me which makes her smile.|
Looking great because they have lost up 50lbs is not great for them. It means everything they have eaten has revolted against them in some form. They suffer from fatigue differently. Frankie has to deal with this symptom more than my female friend because he cannot get up as easily and move around like she can. Erica runs and does core building strengthening exercises. He has recently found that yoga helps him more than anything else.
They both find that enemas are beneficial to them. It helps them both. It is embarrassing for them however because once again it is not a very common practice or attractive procedure. They both tear up sometimes while talking about them. It can be painful for them at times.
The gradual loss of blood from the gastrointestinal tract, as well as chronic inflammation, often leads to anemia, and professional guidelines suggest routinely monitoring for this. Adequate disease control usually improves anemia of chronic disease, but iron deficiency may require treatment with oral iron supplements. Both of them have to take those supplements.
Crohn's cannot be cured by surgery, though it is used when partial or a full blockage of the intestine occurs. Surgery may also be required for complications such as obstructions, fistulas and/or abscesses, or if the disease does not respond to drugs. After the first surgery, Crohn's usually shows up at the site of the resection, however it can appear in other locations. After a resection, scar tissue builds up; this can cause strictures, which form when the intestines become too small to allow excrement to pass through easily, which can lead to a blockage. After the first resection, another resection may be necessary within five years.
Both of them have had to deal with fistulas and abscesses. An anal abscess is an infected cavity filled with pus found near the anus or rectum. An anal fistula is almost always the result of a previous abscess. Just inside the anus are small glands. When these glands get clogged, they may become infected and an abscess can develop. A fistula is a small tunnel that forms under the skin and connects a previously infected anal gland to the skin on the buttocks outside the anus. Both of these are common with Crohn’s patients.
Frankie is one of the more severe cases so he is always a contender for surgery. He recently had part of his colon removed. It breaks my heart because they had to staple his stomach back together because stitches wouldn’t have worked. He and Erica both have also suffered through rectal prolapse, which is when the tissue that lines the rectum falls down into or sticks through the anal opening.
In some cases, intestinal transplant surgery may be considered; though the number of transplant centers offering this procedure is quite small and it comes with a high risk due to the chance of infection and rejection of the transplanted intestine.
They both are prone to getting sores on their legs called pyoderma gangrenosum, or erythema nodosum. Neither of those do I recommend looking up if you have a weak stomach. Crohn's disease also increases the risk of blood clots; painful swelling of the lower legs can be a sign of deep venous thrombosis, while difficulty breathing may be a result of pulmonary embolism.
Crohn's disease may cause osteoporosis, or thinning of the bones. Individuals with osteoporosis are at increased risk of bone fractures.Crohn's disease can also cause neurological complications most common of these are seizures, stroke, myopathy, peripheral neuropathy, headache and depression.In the oral cavity crohn's patients may suffer from cheilitis granulomatosa and other forms of orofacial granulomatosis, pyostomatitis vegetans, recurrent aphthous stomatitis. None of these would make me feel good about eating especially knowing that my body is going to be going through everything even worse when digesting the food you are eating.
Along with high fevers and night sweats and for Erica losses of a menstrual cycle are all other symptoms that they have to deal with when the flare ups hit. They both love hot baths, hot water bottles, enemas (when they don’t have medicine in them), and green tea. So Crohn’s may not kill you but it can throw your entire lower have into chaos.
More than half of people with Crohn's disease (including Erica and Frankie) have tried complementary or alternative therapy. These include diets, probiotics, fish oil and other herbal and nutritional supplements.
I think a lot of these patients need help from their families.
After spending hours reading into this I cannot imagine living the lives these two extraordinary people do, and living with that disease. Below are the websites that helped me to better grasp what these people deal with on a daily basis. I will be a lot grateful to God that I have normal a digestive track from now on every day.
I HIGHLY recommend looking at these if you have a friend or loved one that is struggling this because there is no cure and it won't get better over night. Even if you are going to be around someone that has this disease you need know what to do or what to say when they aren't feeling well.
- Crohn's & Colotis Foundation of America
- The Great Bowel Movement
- Life of a Crohnie Girl
- Crohns and Me
- Living With Crohn's Disease
- 11 Things Not to Say to Someone With Crohn's Disease
- Bright Side of Crohn's