I've lived with Colitis for 40 years

Throughout many years with Colitis, Lyn has had plenty of ups and downs.

She's also experienced how much healthcare, support, and public attitudes have changed in that time.


40 years ago, being diagnosed was even harder than it is now.

I made several trips to the GP until, after several months, I was referred to a local hospital. I know I had pain and rectal bleeding but don't remember a huge amount else.

I was booked in for a colonoscopy but, back then, I had to have an enema first, which is not pleasant. Colonoscopies were not so easy then as they are now.

I then had to go to a larger hospital and go through it all again before I was diagnosed with Ulcerative Colitis and put on sulfasalazine.

There wasn’t much real support back then, but I went about my life fairly well.


Lyn

Living with Colitis

I had the occasional flare but nothing serious for the next 25 years.

Then my symptoms became worse and flares more frequent. I felt really poorly and sometimes spent weeks in bed because of the pain and I would be sick a fair bit. I’d get up about 50 times a day to trot to the toilet, when it was at its worst. I was losing a lot of blood and it made me feel pretty weak. The symptoms were helped by steroids, I am not a fan of due to the side effects, but they were needed at the time. It took me about 4 months to get back on track, so I had to take a considerable amount of time off work.

My condition still hasn’t gone back to how it was for so long when I was younger.

Through all of this recent illness, my local hospital has been essential in helping me manage my condition.

Right now, I’m hopefully getting towards the end of the worst flare I’ve ever had. It has gone on for over a year and has been very trying. I have been on steroids as well as mesalazine and need to use suppositories and rectal foam. I am very slowly trying to reduce these, but my condition keeps getting worse again and I have to up everything all over again.

I can call my IBD team any weekday and they are friendly, understanding, and so knowledgeable. They can also arrange prescriptions, tests and pretty much anything else that is needed. This sort of service is so different to 40 years ago and has made a huge difference to me and my life.

Living with Colitis for so much of my life has affected my mental health. It can be isolating and depressing having to deal with all the complications.

What helps me most is that I try my best to say positive and find others with Crohn’s or Colitis. We need to support each other to the best of our ability.

I find that today I am able to speak much more freely about my condition than I could back then too. I’ve only felt confident to open up about it in the last few years and it still surprises me how many people there are that have never heard of Crohn’s or Colitis.

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Helpline service

Helpline
Service

We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

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