Barbara Bowen - My IBD Story

I am 74 and I live in Rayleigh, Essex.  I was diagnosed with ulcerative colitis (UC) in June 2020. 

The initial symptoms were blood when passing motions and sometimes diarrhoea or constipation and a swollen stomach with stomach ache.  I haven’t had any surgery directly related to UC but I did have an emergency appendectomy in November 2022. 

As my IBD symptoms came on at the start of the Covid pandemic I could only get phone consultations with my GP and was told that I had constipation.  When I finally saw a doctor at the GP surgery, she said it could be bowel cancer.  Alarmed and shocked, I asked for a referral for a private colonoscopy as the GP told me that there was a possible long wait for an NHS appointment.  Following the colonoscopy (29 June 2020), I was diagnosed with proctitis; and the biopsies showed chronic inflammation.  

I was first prescribed mesalazine 500mg then Pentasa 1 gm suppositories but unfortunately my symptoms quickly worsened.  I also developed uveitis (an eye condition), Raynaud's phenomenon, anaemia and oedema.  Next I was prescribed Pentasa 4 gms but my symptoms continued to worsen. I was going about 10-12 times a day, with liquid stools, blood and mucus and occasional abdominal pain, nausea and fatigue.  Throughout this period I was experiencing significant weight loss (2 stone).  Sigmoidoscopies showed a worsening of the disease up to the descending colon.

In April 2021 I was prescribed a weaning dose of the steroid prednisolone, starting at 40mg but this had only a short term effect and I needed further doses almost on a back to back basis.  In January 2022 I started a course of the biologic adalimumab - I had wanted vedolizumab but funding was denied.  Unfortunately the adalimumab failed; I became worse and in April 2022 had to go to A&E where I stayed in hospital for a week.  On my last day in hospital I was put on ustekinumab, another biologic, with another course of steroids.  I had to self-inject the ustekinumab every eight weeks.  At first it didn’t appear to be working and so surgery was discussed, with an actual appointment made for 12 September 2022 to remove the large colon with a consequent stoma.  However, in August I fractured my arm (I had found earlier that I had osteoporosis – a side effect of the steroids) and was therefore unable to have surgery.  Luckily my symptoms began to improve and I eventually cancelled the surgery.  I have been responding well to ustekinumab to the present day.  

With UC, my main concerns were what to eat, my weight loss and how thin and scrawny I looked; I was more emotional and fatigued and at times depressed by the relentlessness of the condition.  It greatly affected my life:  I was nervous about going out in case I had an ‘accident’, I had to give up classes at the gym, meals out with friends, visits to the theatre and cinema, and holidays overseas.

Throughout this period, my husband was very supportive and it helped talking to family and friends, if not face-to-face then on WhatsApp or Facetime.  Walks in local parks and woods also helped and I used YouTube for yoga, Pilates, keep fit and meditation sessions and spent more time painting and cooking – trying out recipes using food suggested for UC. I found it important to rest when feeling tired and to be kind to myself.  When in a flare I found that a hot water bottle on my stomach helped as well as taking a bath with mineral salts. 

In summer 2021, I took part in the ‘Walk for Crohns and Colitis’ raising over £1200 as well as increasing awareness of the disease.  Crohn’s and Colitis UK has been very helpful as you can phone them and talk things over.  I also attend my local hospital’s patients’ support group which has been an enormous support and there is always a helpful senior IBD nurse present. The IBDrelief website has been excellent for information and reading other people’s IBD stories makes you realise you’re not alone.  I take vitamin tablets, primrose oil (for Raynauds), gentle iron tablets, a daily probiotic and calcium and alendronic acid tablets (for osteoporosis).  I frequently have kefir and continue to watch my diet, avoiding alcohol, caffeine and hot, spicy foods.

Having the medication work for me has made such a difference.  Now that I’m in remission I have been more confident about going out.  I have had an exhibition of my art in a small gallery in our local windmill.  I play table tennis; go to ‘Stroller’ dance classes and belong to several u3a groups (local learning groups).  My husband and I have recently returned from a fortnight’s holiday in Spain.  I am making the most of every day.