Saturday, 4 February 2023

Ulcerative Colitis (UC)

(NOTE: This post is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons why I may act so "up-and-down" from time to time.
All of this is quite frustrating for me, as I was always quite well health-wise overall, until my mid-40s! (I'm 58 now).
Blimey... I don't drink, don't smoke, don't do drugs, gamble, nor video games (Boring old fart, huh? lol)
I guess the 'joys' of a lifetime lived with stress, anxiety, and depression have caught up with my physical health!)

In 2003 (aged 39), I was diagnosed as having a chronic (ie. life-long) auto-immune disease called Ulcerative Colitis ("UC").

It means that I often can't get to the lavatory in time (and I don't mean peeing here!)
As an auto-immune disease of my colon, basically, it's as if my own bowel is attacking itself. Specific diets and/or medication help bring me relief, but aren't a cure - there isn't one, just maintenance and containment/control.

✨ When I have to go to the toilet, I mean I have to go NOW - it kicks in that quickly sometimes! It's that sense of URGENCY that is the main problem. 

I'd been 'living with it for about 10-15 years, and wasn't properly diagnosed until 2012.

"Living with a chronic illness like UC means embracing disruption and chaos as a part of every day."

GREAT Article:

What is Ulcerative Colitis?
► Watch this video:
Video source:

When I have to go to the toilet, I mean I have to go NOW - it kicks in that quickly sometimes! It's that sense of URGENCY that is the main problem.

► The National Public Toilet Map is an amazing resource to have and know - seriously!! 🦘

Ulcerative Colitis (Colitis ulcerosa) is a form of inflammatory bowel disease (IBD), a form of colitis, a disease of the intestine, specifically the lining of the large intestine or colon/bowel, that includes characteristic ulcers, inflamed or open sores in the colon, which may bleed. (It's like that the lining of my colon, instead of being smooth, looks like sandpaper).

The main symptom of active disease is usually diarrhea mixed with blood, which often leads to anemia. Ulcerative colitis is, however, a systemic disease that affects many parts of the body outside the intestine. (IBD is often confused with irritable bowel syndrome (IBS), a troublesome, but much less serious, condition).

I have what is called "Pancolitis", which involves my entire colon.

There are no direct known causes for ulcerative colitis, and it is not contagious. There is no current cure.

While it won't necessarily kill me, the disease primarily affects the quality of life and not lifespan.

It is hard for people to understand when I explain the condition I have been dealt with. I may look like a healthy person on the outside, but what they don't know is the serious medical condition on the inside, and need to take care of myself. There are times when I get frustrated wishing things were different, but I believe my condition has made me understand life from a different perspective. I do not take anything for granted and appreciate the little things in life. I laugh a lot, now.

Although ulcerative colitis has no known cause, there is a presumed genetic component to susceptibility. The disease may be triggered by environmental factors. Although dietary modification may reduce the discomfort of a person with the disease, UC is not thought to be caused by dietary factors. Although there is no clinical evidence to suggest that specialist diets benefit persons with UC, good nutrition is essential to the healing process. When the disease is active, many people lose their appetite or try to avoid eating to prevent further symptoms. Lack of adequate nutrition worsens tiredness and fatigue and eventually leads to weight loss. 

Ulcerative colitis is treated as an autoimmune disease. Treatment is with anti-inflammatory drugs, immunosuppression, and biological therapy targeting specific components of the immune response.

The inflamed lining also produces a larger than normal amount of intestinal lubricant or mucus which sometimes contains pus. Inflammation in the colon reduces its ability to reabsorb fluid from the feces which causes diarrhea. Inflammation in the rectum can lead to a sense of urgency to have a bowel movement.

The disease may be accompanied by different degrees of abdominal pain, from mild discomfort to painful bowel movements or painful abdominal cramping with bowel movements.

The chronic loss of blood from the GI tract leads to increased rates of anemia, which is causing me much fatigue, sometimes leads to brief dizzy spells, and affects my energy levels.

As ulcerative colitis is believed to have a systemic (i.e., autoimmune) origin, it sometimes also affects my mouth with ulcers, and sometimes foot cramps.

Standard treatment for UC depends on the extent and disease severity. The goal is to (i) induce remission initially with medications, followed by the administration of (ii) maintenance medications to prevent a relapse of the disease. The medications used to induce and maintain remission somewhat overlap, but the treatments are different. Physicians first direct treatment to induce a remission which involves relief of symptoms and mucosal healing of the lining of the colon, and then longer-term treatment to maintain the remission and prevent complications.

Patients with ulcerative colitis usually have an intermittent course, with periods of disease inactivity alternating with "flares" of disease.

There is a significantly increased risk of colon/bowel cancer in patients with ulcerative colitis.

Three medications I am currently using for my UC:
I was on Mesalamine / Pentasa: 500mg two tabs twice daily, but not now - it was having negative side effects on me!

I will have ongoing Colonoscopies every c. 12-18 months, just to keep an eye on things in there.

Most research points out that a particular diet has nothing to do with it at all - good overall nutrition is more important. I am currently trying to eat a gluten/dairy/sugar-free diet.... note the word 'trying'!

Note: a lot of trying to find "what works" for me is trial-and-error... and it is different for everyone who suffers from UC... there is no "one" overall "way" which helps more than another.

People generally experience a psychological adjustment when diagnosed with a chronic medical condition. Symptoms of anxiety and depression are common. People often feel a sense of loss and grief that everything is not functioning as well as it had previously. There are associated fears about the long-term prognosis. When diagnosed with UC, people report distress about disruption to lifestyle (regular bowel movements, often with a sense of urgency, anxiety about feeling the need to be close to a toilet etc.), having to take prescription medication indefinitely (some medication can illicit nausea, mood swings and irritability), and sometimes having to live with a level of chronic pain. These are some of the main changes experienced in people diagnosed with inflammatory bowel disease.

Societal attitudes preclude people from openly discussing bowel problems. This usually compounds people's sense of isolation and willingness to disclose their condition to friends, family and work colleagues. Current statistics suggest one in ten Australians have a bowel condition requiring medication and regular monitoring by their doctor.

💜 UC Twitter Tags 💜

💥 To search Twitter using any of these Tags:
Write or Copy/paste the tag into the "🔍 Search Twitter" box

#ulcerativecolitis #Colitis #UC #FlushTheStigma #chronicillness #GotGuts #ittakesguts #colitisawareness #ulcerativecolitisfighter #colitiswarrior #GetYourBellyOut #autoimmunedisease #CrohnsColitisAustralia #spoonie #CutTheCrap 

🆗➽►→ ←◄🆗

Article: UC - a few facts

► The National Public Toilet Map is an amazing resource to have and know - seriously!!

► Article: "Things you SHOULD and SHOULD NOT say to someone with a chronic illness"

Article: "What I Wished Other People Knew About Life with UC"

► Colonoscopy (1)

► Colonoscopy (2)

Bookmark this Page: Ulcerative Colitis

Peas be with ewe 

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