Ulcerative Colitis Symptoms

Symptoms

Some of the symptoms of Ulcerative Colitis are notoriously difficult to explain! I've read explanations such as 'a weird floaty feeling' to 'a strange bubble of air'. I've also had symptoms that I couldn't put into words, however, they were never the main symptoms. This page will concentrate on the main symptoms - unless I can come up with a new language that explains the weird ones as well!!

Symptoms can vary a lot

If you've suffered from colitis for any length of time, you'll be aware that it's a very individual disease. For anyone that's still learning, be prepared to experience different symptoms at different times during a flare-up; sometimes extreme and sometimes mild. It's unlikely that you'll experience all the symptoms although, depending on the number of flare-ups and the period of time, you may experience more as time goes by.

It's worth noting that because Colitis is an autoimmune disease, symptoms may not be confined to the large colon. Because the immune system has been compromised, symptoms can occur around the body - aching joints and fever are good examples.

Unfortunately, up to 25% of UCers eventually require surgery to have part of or all of there large colon removed. In reference to Colitis in the colon, this will elliminate the symptoms however, because the immune system has been compromised, symptoms outside of the colon may occur again e.g. aching joints.

Blood Loss

I'd pretty much put money on this symptom being the main reason people go to the Doctors the first time they experience colitis! Strangely, it's not always present during an Ulcerative Colitis flare-up.

The amount of blood can be anything from a few specs on the stool to what appears to be a toilet-bowl full. However, it's well known by experienced UCers that a small amount of blood can look like a lot more once it starts to dissipate in the water.

Sometimes I see questions by UCers about dark or light blood: the theory (Constipation can affect this theory) is that dark blood is from further along the colon (ascending colon, transverse colon, descending colon), where it has had time to congeal, clot etc. and is probably an indication of Extensive Ulcerative Colitis. The bright blood is 'fresher' and from nearer the colon's exit (sigmoid colon, rectum) and an indication of Distal Ulcerative Colitis.

Loss of larger amounts of blood can lead to Aneamia and/or an iron deficiency so supplements are often prescribed. Apart from keeping an eye on the amount of blood, a clue that you may be Aneamic is extreme tiredness - keep an eye on your symptoms and tell your Doctor immediately you experience anything you're not comfortable with.

Coldness

I've seen a few questions on the forums about feeling cold. I've experienced this feeling over the whole body and also just in my feet. Not to be confused with the symptoms of fever (which can inlude feeling cold), this cold feeling happens on its own, without other symptoms.

This is also one of those symptoms that's difficult to explain because it's not a 'normal' feeling of coldness, I almost experience a very light pins and needles type background sensation - it's very slight but adds a weird aspect to the coldness!!

I think I've just realised that UCers need a new dictionary to help explain things

Constipation

Can occur with Colitis because of the difficulty of passing stools. UCer or not: the longer stool stays in the colon the drier it becomes, the more likely the chance of constipation. It can be caused by diet or not going to toilet when your body is telling you to. Always stay well hydrated and go the toilet when your body tells you to.

Constipation can also occur as a result of narrowing along the colon passage (sometimes referred to as a stricture) due to the inflammation caused by ulcerative colitis. It takes longer for the stool to travel through the narrowed area of the colon.

More info on constipation.

Cramps

Cramps are a common symptom of Ulcerative Colitis: they're caused when muscles along the colon create waves to move the waste (how the colon works). The pain can occur when the colon is flexing or when waste touches an ulcerated area as it moves along the colon.

Personally, I think cramps are a good example of how diet can bring on Colitis symptoms during a flare-up. A quick example is fizzy or carbonated drinks. There are plenty of UCers who get terrible cramps (and other symptoms) after drinking any type of carbonated liquid (soft or alcoholic drinks - even fizzy water!). It's due to the gas in the drink working the colon and causing it to flex.

Also, the very act of eating can start electrical impulses that cause the colon to create waves. This can happen as fast as 15 minutes after eating and is the body's way of making room for the food.

A quick disclaimer though: Colitis is such an individual disease it means not everyone is effected by diet or cramps e.g. some lucky UCers are able to continue their usual diet without any problems.

Diarrhea

This symptom can be caused by excess mucus; it can also be caused by the colon being unable to absorb water from undigested food matter due to ulceration. The undigested waste food moves through the colon quickly because it's contains more liquid than normal.

During a flare-up certain foods can trigger diarrhea for some UCers. As ever, which food causes it seems to be as individual as colitis. For me it's anything containing citrus and anything containing runny egg - strangely, hard boiled egg (boiled for at least 15 mins) causes me no problems.

Diarrhea can cause dehydration, so ironically: plenty of liquids should be taken. Diet experimentation has helped many UCers e.g. finding foods that digest at a different rate and can bulk up the stool.

Dizzy Spells

Light headedness and dizzy feelings could be due to larger amounts of blood loss leading to anaemia. A blood test should reveal if this is a problem and iron supplements may be given to help.

Dizzy spells may also be a result of a lack of nutrients and food being adsorbed into the body - a problem for some UCers who complain of feeling generally light headed, others have spells when they feel dizzy.

The dizziness I experienced was due to lack of food and would occur when I stood up, often I would have to hang onto something until the feeling passed.

Eye soreness

Colitis can cause some UCers inflammation around the eyes which can cause soreness and itchyness as well as redness.

Fever

Some colitis symptoms are unexpected and can often be mistaken for other ailments - fever is a case in point, especially if it occurs just before a flare-up. Colitis fever can come and go, sometimes hourly! Some UCers find fever comes on each night but has gone in the morning, others after eating certain foods. The symptoms of colitis fever have all the hallmarks of flu e.g. aches, feeling rundown, feeling of a throat/nose cold, hot and cold sweats etc.

Gas

Many UCers complain about wind/gas that has a foul smell - one train of thought is that it's caused by the existence of mucus and/or blood in the colon. A change in bacteria could also be the cause.

Gurgling/Bubbling

Some UCers find that they have increased gurgles/bubbles along the colon, which can be noisy and embarrassing for some.

It often occurs along the transverse and descending colon after eating or when laying in bed, although it can happen at anytime. It's something that anyone can experience but is often exaggerated in those with Ulcerative Colitis.

Called borborygmus, there are various reasons given as to why it occurs; excess liquid, gas, bacteria or mucus are all mentioned and would probably make sense in relation to colitis. One cause given was that for those with UC, the absorption of nutrients is disturbed, which can result in a larger quantity of liquid being present in the bowel.

Joint Pain

Caused by inflammation, as ever with colitis, this symptom can differ for those UCers that have it. From general aches to crippling pains where the UCer needs a stick to walk. It can also come and go so may be there one day, gone the next and back the day after.

Misc

I've added this heading to cover symptoms and feelings that are difficult to place.

Feeling like you haven't finshed going: generally more noticeable in the rectum. Probably partly due to continued working of that area plus the focusing of thoughts on it - inflammation can also cause it. I've found out that there's actually a medical term for this feeling - 'tenesmus'

I experienced this after an enema before my first colonoscopy. I was in the toilet at the hospital for over 2 hours - eventually when I was supposed to go for the procedure, the nurse knocked on the door and said "it just feels like you have to go but you'll be okay because there's nothing left"! She was right!

I've also experienced a similar feeling just before a flare-up, which would suggest that inflammation is the culprit in this instance.

Mouth Ulcers

Mouth ulcers affect some UCers, some have mentioned that they get ulcers just before they're about to go into a flare-up, like an early warning system as it were.

Mucus

Caused by overactive mucosa of the mucus membrane along the colon wall where the immune system is fighting itself.

Extra mucus can also be caused by eating certain food types. A great many UCers experience a lot more mucus if they eat dairy products (I am one of them!), hence why many cut dairy out during a flare-up.

There's an argument that mucus protects the colon wall, which is true, but too much can lead to liquid stools.

Nausea

Some UCers suffer from nausea, whether it's a general feeling or due to the amount of pain during cramps. This can exacerbate colitis symptoms where the UCer can't bring themselves to eat anything.

I have experienced nausea due to inflammation along the sigmoid colon. It happens for a short period of time when peristalsis (waves that move waste along the colon) is taking place and is caused by inflammed nerve endings in the sigmoid. UCers probably experience a lot of symptoms because of inflammation along the colon without realising what's causing it.

Skin Dryness/Itchyness

Colitis can cause some UCer's skin to become dry and/or itchy. Generally this will be in random areas of the body; I had itchy areas on my foot, my calf, my left thigh, my chest and the middle of my lower back.

Tiredness

Unfortunately colitis can cause extreme tiredness for UCers, I say unfortunately because on the outside it can look like the sufferer is being lazy. However, I can vouch for how disabling the tiredness can be - just walking down the stairs or performing simple tasks can be hard work. The tiredness often leads to UCers sleeping at times when they would normally be up and about.

My theory is that like any illness (flu for example); the body needs to rest and recover; colitis is no different. Unfortunately many UCers are forced to fight against the tiredness because life goes on - personally I believe this slows down the healing process.

Twisted Sense of Humour

I'm joking of course! But I thought I'd put this in because you do tend to find yourself laughing at stories from other UCers that people without colitis wouldn't find funny at all! I think it's a great release and also helps us realise it's not just 'you' going through it. In fact I marvel at the positivity of some UCers who fight on without complaining and continue to see the lighter side of life.

Toxic Megacolon (expanding/tearing of the colon wall)

This symptom is not common but can happen in extreme cases of colitis. Symptoms are a very tender, painful abdomen and high temperature - immediate medical assistance is advised.

Urgency

This is a common symptom and one which can affect sufferers psychologically. It generally manifests itself by a sudden, overwhleming urge to have a bowel movement. Sometimes it's not possible to stop the movement, other times there's just enough time to get to the toilet.

I've experienced this and I believe it's down to where the inflammation occurs e.g. if it's near the colon exit, I tend to have more urgency symptoms than when it's further along the colon. You also have more time to make a decision of whether to dash to the toilet when the inflammation and urgency is further along.

The psychological aspect of urgency affects many UCers because of the worry that it could occur when there's no access to a toilet. This can make everyday tasks something that UCers dread e.g. the simple act of standing in a supermarket checkout queue can suddenly become a Herculean task where the vicious circle of worry and fear effects the colon and vice-versa. Hence why many UCers complain that their life has changed due to colitis; they can't leave the house or are afraid to leave the house because they won't have quick access to a toilet.

Weight Loss

It makes sense that loss of weight goes hand in hand with a disease that's based around the digestive system. Weight loss often occurs at the beginning of a flare up although the change of diet forced on many UCers can see it continue further into the flare. Sometimes the speed it happens can be dramatic, although often it's only when someone mentions it to the UCer that they realise it's happening.

I lost around 1 and a half stones (21 pounds/9.5 kg) in 2 weeks and didn't realise until someone said 'you've lost weight!'. I've heard of many similar amounts from other UCers. I've read some UCers saying how pleased they are at the weightloss; calling it the 'colitis diet'!! I say fair play to them if they can find an upside! It's good to laugh and find positivity!

Complications

Cancer: although not really a symptom, it's worth mentioning because so many UCers are concerned about it. There is an increased risk (pay attention to that word - it says RISK), of cancer to anyone that suffers from colitis. To put it in context, there's an increased RISK of cancer if you sunbathe too much or if you don't exercise. However, in respect to colitis, the greater risk is to those who have severe colitis over a long period of time (we're talking years).

Check-ups, colonoscopies and biopsies should catch this early. The medical profession recommends that those with severe colitis should have a colonoscopy once a year, that way they can act on any changes quickly.

FYI: Colonoscopies for Ulcerative Colitis sufferers are recommended every 3 years for medium cases and every 5 years for mild cases.