An Interview with Someone Suffering from Ulcerative Colitis

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Inflammatory bowel disease is an umbrella term used to describe conditions that are characterized by bowel inflammation. Crohn’s disease and ulcerative colitis are the two major forms of IBD. They have distinctly different pathological characteristics but actually share many overlapping features. They are therefore presented together.

UC creates a diffuse continuous process of inflammation characterized by edema and shallow mucosal ulceration. It primarily affects the distal colorectal area, and about 30% of patients are seen with disease confined to this region. More extensive disease is termed left-sided and affects about 40% of patients. It involves the colon up to the slpenic flexure. In severe disease the inflammatory process extends all the way to the hepatic flexure or ileocecal junction. The mucosa is very fragile and bleeds spontaneously or in response to minimal trauma. Over time it becomes increasingly thickened and edematous. The ulceration and healing process gradually result in scar tissue formation that may cause the colon to lose its normal elasticity and absorptive capability. As normal mucosa is gradually replaced by scar tissue the colon becomes thickened, rigid, and pipelike. The mucosa also may undergo structural changes over time, forming pseudopolyps that can become malignant. Rectal bleeding is usually the earliest symptom of mild ulcerative colitis. The classic diarrhea, which begins as disease involvement becomes more extensive, ranges in severity from 3 to 4 times daily to hourly and is small in volume, mushy in consistency, and liberally mixed with blood, mucus, and pus. The inflammatory exudate and mucus secretion increase both the fecal solutes and water. The diarrhea is associated with significant urgency and left sided abdominal pain that is colicky to nature and is relieved by emptying the bowel. As the scarring within the bowel progresses, the sensation of the urge to defecate is lost, leading to involuntary leakage of stool. With severe diarrhea there may be significant losses of fluids, sodium, potassium, bicarbonate, and calcium.

The upcoming part is an actual interview with a person who has been suffering from ulcerative colitis for several years.

How can you describe ulcerative colitis to someone who has never heard of it before?

I would say that it is an area of chronic inflammation of the mucosa and submucosa in the colon and rectum. The peak incidence is between 15 and 35 years of age with a second peak in people ages 50 to 70 years.

How old were you when you started suffering from this condition?

I was in the second peak group, and I was 52 years old.

What are the causes, etiology and pathopysiology of this condition?

Many of the causes are unknown but in my case it may have had a relationship to stress, genetics, infection, dietary factors and antibody formation.

What do you mean by dietary factors?

I was never really fond of fiber, therefore I tried to avoid it as much as I could. So basically what I meant is that low fiber intake can have a relationship with ulcerative colitis.

What else can you tell us about this condition?

What I have learnt is that the inflammation develops into abscessed that penetrate the mucosa and spread laterally. It usually begins in rectum and can progress proximally, but is it my case it was limited to sigmoid colon and rectum. Then according to the individual the range in severity can be from mild to severe.

What were the first signs or symptoms?

In my case it was diarrhea; 10 to 20 liquid stools per day which often contained blood and sometimes mucus. I also did a period of having nocturnal diarrhea. I was also losing a lot of blood, so I was constantly complaining of fatigue. But that was not only because of the blood, but also because of lack of sleep and sometimes fluid imbalance.

Does this condition affect your everyday life?

In the beginning, when I was not sure what I was suffering from and I used to be afraid to leave the house because of severe diarrhea.

Does this condition present other complications?

Yes, sure it does. I had periods of hemorrhage, abscess formation and bowel perforation. Other patients may suffer from toxic megacolon, malabsorption, bowel obstruction, increased risk of colon cancer and extraintestinal symptoms like arthritis.

How do you know all this?

Luckily enough, there are support groups that one can attend to and they are highly informative. At first I was skeptical about them, but then when I learnt that I was not alone I started accepting the condition and adjusted my life to learn how to live with it.

What kind of tests did your doctor run to conclude that you have ulcerative colitis?

Mine was diagnosed by sigmoidoscopy.

What is sigmoidoscopy?

It is a direct visualization of anus, rectum and sigmoid colon with either a rigid or flexible sigmoidoscope (I have had both.)

Did you have to be hospitalized for sigmoidoscopy?

Yes and I have gone through the pre and post sigmoidoscopy care.

What have you been taught about sigmoidoscopy pre operatively?

Nurses told me to be cooperative otherwise they might be a risk of rectal hemorrhage and suspected colon perforation. As for possible complications, I was told that perforation of colon, bleeding from biopsy sites and oversedation can occur. The nurses also gave me a complete bowel prep, monitored my vital signs for signs of bleeding and colon perforation.

Is there any another kind of surgery for this condition?

Yes, an ileostomy may be necessary if the disease cannot be controlled by medical means.

What planning did you make to get accustomed with this condition?

First of all I needed plenty of rest, mainly because I was feeling fatigued and also because to decrease intestinal activity. I also adjusted my diet to a low residue diet. But in severe cases nothing is to be fed by mouth and Total Parenteral Nutrition will be ordered in severe cases. As I said before, I also joined a support group and I advice everybody to join if one is available nearby. It made me feel free to talk about my concerns related to the disease process and its effect on lifestyle.

Did/Do you take medications?

Yes, I used to take corticosteroids during exacerbations to decrease bowel inflammation. I still take Azulfidine and Asocol to decrease my prostraglandin formation in bowel thus reducing inflammation and whenever needed I take antidiarrheal drugs to provide symptoms management.

What kind of education can you offer to people with this condition or for those who have a family member suffering from the same condition?

The most important thing is to take medications as needed. The second most important is to avoid foods that exacerbate symptoms like raw vegetables, raw fruits, wholegrain breads and cereals, seeds, nuts, popcorn, and any highly spiced or flavorful food.

Patients should notify healthcare provider if symptoms increase or there is blood in the stool.

In my case I did not have a severe condition so I did not need a stoma, but most patients need it. So ask everything that comes into your head about stoma care as it is highly important.

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