Mal's Gherkin Pram: 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 life 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) autoimmune 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!)

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

As an autoimmune 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.

I'd been living with it for about 10-15 years and wasn't properly diagnosed until 2003.

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

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

What IS Ulcerative Colitis ('UC')?

► Watch this video:

Watch this video on YouTube

► Crohn’s & Colitis Australia 🦘

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

Ulcerative Colitis (Colitis ulcerosa) ('UC') 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 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.

(NB. 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 dealing with. I may look like a healthy person on the outside, but what they don't know is my 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 UC 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.

Symptoms

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

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

Treatment

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.

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 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.

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

Four medications I am currently using for my UC:

Mercaptopureine / Puri-Nethol: 100mg twice daily (I nickname this one "Metaporcupine").

Pantoprazole / Somac: 20mg once daily (I nickname this one "Soma").

Salazopyrin (Pyralin): 500mg 2 x thrice daily.

Entocort: 3mg daily. This has been really helping me lately, thankfully.

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 to keep an eye on things in there.

Diet

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" that helps more than another.

► Article: "What To Drink and What Not To Drink With Ulcerative Colitis"

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.

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

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