Ulcerative colitis - Tony's story 

'I lost a lot of weight and had to stay in bed' 

Tony, 43, has had ulcerative colitis for 15 years. Having tried most medications, he is now on infliximab, a fairly new drug that can only be given to certain patients. He is currently in remission, enjoys mountain biking and works full-time for the NHS.

“I was about 28 when I started having bloody diarrhoea and passing mucus from my bowel. I’d lost weight and was bloated and getting stomach cramps. It was very worrying, so I visited my GP.

“I was referred to hospital and had a colonoscopy, where the lining of your bowel is examined with an endoscope (flexible camera) and a small sample of the lining is taken. The test showed that I had ulcerative colitis.

“I was put on a medication called mesalazine, which helps reduce the inflammation in your bowel. After a few years I went into remission (I didn’t have any symptoms).

“But then the symptoms came back as the mesalazine became less effective in controlling them. The doctors tried me on a short course of steroid tablets and a steroid enema to suppress the inflammation.

“Ulcerative colitis is very unpredictable. Sometimes the symptoms can be mild and disappear quite quickly. It affects each person differently.

“My condition was at its worst about seven years later when I had another colonoscopy to see if there were any changes in the bowel lining. Then I went into remission again. I continued taking mesalazine, and I also tried azathioprine, which suppresses your immune system. My symptoms came and went for the next few years.

“In April 2006, the colitis flared up massively, after building up over several months. I lost a lot of weight, had to stay in bed for a few days, and I was constantly vomiting. I phoned NHS Direct, and was advised to go to hospital.

“I ended up staying in hospital for three and a half weeks, recovering from the attack. I was given high-dose steroids through an intravenous drip, but after one week I had to stop because they weren’t working. The surgeon came and talked me through the next step – having a colectomy. I was devastated at the thought of having part of my bowel removed.

“Then they told me there was alternative treatment available. Infliximab is a fairly new and expensive drug that affects the immune response and reduces inflammation. It’s only used to treat people whose symptoms have not improved enough with other treatments, or who can’t be given other treatments for medical reasons. Fortunately, I was a suitable candidate.

“I am currently taking a course of infliximab and don't need surgery for now. It’s taken my disease into remission and everything’s OK at the moment, although I still get very tired.

“Although I’ve spent a lot of time off work, my lifestyle isn’t really affected. I work full-time and enjoy mountain biking and going to the gym regularly.”

Last reviewed: 06/04/2010

Next review due: 06/04/2012

Ratings

How helpful is this page?

Average rating

Based on 21 ratings

All ratings

Add your rating

Comments are personal views. Any information they give has not been checked and may not be accurate.

julieu said on 10 January 2012

my son was diagnosed just over a year ago aged 18. he started on steroids which had no effect then predfoam and mezavants but unfortunately they weren't working and he was in severe pain and exhausted with being up most of the night on the loo and then having to carry on doing university. it was and still is heartbreaking listening to your son in such pain and discomfort. now he takes azathioprine and mezavants and codeine to try and get him through the day. i have to add that compared to 1 year ago he is definitely improved but still not in remission and for one so young it interferes with his everyday life. he doesn't want to go down the road of the bag yet if it can be prevented.people who don't know about this horrible disease really can't understand what that person is going through and its time that the disease was highlighted more. i truly sympathise with all you sufferers.

Report this content as offensive or unsuitable

friedman3 said on 23 November 2011

yes but it will get better..You are in control, it just takes time.you learn to live with it. ou will find you get stronger in every way, you live your life for you.

Report this content as offensive or unsuitable

Yeovalley said on 20 November 2011

I was diagnosed initially in1981 whilst a uni student with procto colitis. Initially it was predsol suppositories and sulphalazine which was changed to Asacol around 1990.
I have had long periods in remission but of late have had to go on oral steroids which really work well but have the dreaded side effects of mood change. One minute happy next sad and unable to cope rationally, which van be difficult as being a dentist I have just lost it with patients jumped in the car and gone home. It has taken it's toll on my wife who dreads me going on these little red pills.
So with a degree of reluctance I have just agreed to go on azathioprine with all of it's potential side effects. So far I have been on them a week and feel tired and weak. I am hoping that they will work but evident ally need to be patient. Don't much fancy surgery but my worries like all UC sufferers re possible colon cancer are never far from my thoughts as I have had this illness now for some 30 years. Is there anyone out there who has changed their diet to help control things?
Let's hope someone will find a cure......

Report this content as offensive or unsuitable

jordan2009 said on 08 August 2011

I was recently diagnosed with UC, my stomach simply bloats up so much everyday and none of my clothes fit me anymore, people say you usually lose weight with this disease, seems I am just the opposite, I would really like to know if there is anything I could take to get rid of the bloated stomache it is so uncomfortable. I currently take Salofalk tablets and B12.

Report this content as offensive or unsuitable

Aunt Shreddie said on 27 June 2009

My niece had a terrible time with UC - she now has a j-pouch, which means she goes to the loo from the usual orifice, but she has no bowel. It took some getting used to, but (touch wood) she's doing really well now. (This was after having the ileostomy bag).

Report this content as offensive or unsuitable

jacks123 said on 20 May 2009

Hiya John,

I enjoyed reading your story. I was diagnosed in December after having symptoms a while before hand refusing to admit something was wrong. In the mean time a contracted Cdiff so had to deal with the two, subsequently being admitted to hospital for 2 weeks. I am currently used steroid foams as i have not been able to get it under control.
I am finding it difficult to come to terms with and feel very depressed. I am aware everyday that i have it but if i can put it to the back of my mind i will.
Have you felt this way?

Report this content as offensive or unsuitable