My Crohn’s Story

 

I am a 47 year old mum and wife and neither my husband or daughter have known me “well” mind you I’m not convinced I have seen myself well either.  When I was 14 or so, I was aware that I spent a bit more time going to the loo than my friends but didn’t think anything of it. Then as I got older I noticed that I was getting pains in my stomach that were at best annoying at worse downright painful but just got on with stuff, I put it down to stress of exams, worry about school and what to do next or just being in a part time job I just didn’t like (I liked the wages so stuck it out).

 

If we move on to the autumn of 1997, my trips to the loo were increasing, the pain in my stomach was more or less there all the time and the black dog had visited and the depression i found myself in was bad enough for my husband to insist I gave up work and just rest. I did, and in that time made a conscious effort not to spend all day at home eating. Oh that’s something else about me, I love my food! Anyway, so during 1998 I was at home, trying to watch what I ate and noticed some weight loss. I’ve always been a plumper lady (curvy the husband says) but when we went shopping to get some new clothes that fit. I was shocked, horrified and also pleased to discover I no longer needed a size 18 but a size 10. I’d never been a size 10, even when I was 10.

 

There were a number of trips to the GP during ‘98 as I didn’t feel “right”. I was told it was IBS, it’s in my head, it’s my body getting used to loosing weight...but when we both realised that I was not actually eating proper meals anymore and that a family pack of salt and vinegar chip sticks and a pot of garlic dip was all I ate every couple of days and the smell of food made me vomit or I wasn’t keeping water in or down that there was a problem. Oh and the small matter of the newly sized clothes and the 6.5 stone weight loss in 3 months that things weren’t right and needed addressing immediately.  My husband came with me to an appointment and got cross (he never gets cross).

 

A few weeks later I find myself having a Barium meal and listening to the technician humming and muttering to themselves I wondered if there was a problem.  The phone call I received when I got home from the GP and then the hospital telling me to go back to the hospital the following day set alarm bells ringing.

 

I remember the female registrar (I’m sorry I forget your name) telling me I had Crohn’s disease, I laughed. A big belly laugh and said, well thank goodness for that. Oh hindsight is a marvellous thing isn’t it.

 

I was put on Pentesa and Budesonide and 6 weeks later (Dec 28 ‘98) I was admitted into Ipswich Hospital for an emergency right lower hemicolectomy. I’d been over doing it over Christmas with all the goodies. So that was my first of five bowel surgeries. 

 

2003 was elective surgery with another bowel resection as the Crohn’s had taken a liking to the ilium and was doing alarming things there, another load of small bowel, gone.  A wide range of other medication was offered, taken, stopped due to intolerances, infusions of biologics made their first show in 2009, didn’t last long before they stopped working or I had reactions to them. 

 

2013 it was decided that another resection was needed, but this time I woke up with a temporary ileostomy (unexpected and very much unwanted), Barry (my name for it) didn’t stay too long and was reversed in the December of that year.  It was then back to meds for day to day care...

 

Steroids! So many steroids but they kept me functioning as an adult but I hated the moon face! 

 

Then the rather lovely discovery of fistulae and Crohn’s colitis in my rectum came about in 2015 which led me to The Royal London as Ipswich had reached the end of what they could offer me. That’s frightening to hear that. Then into my life walked Prof Lindsay. 

 

In our first appointment he asked what did I want from the appointment. I told him after 18 years I’d had enough. We discussed options and at that point he mentioned his stem cell transplantation trial he was working on. That’s all I wanted to hear from that point, it excited me and I was not going to be swayed.  I signed up when the trial officially started but sepsis was found during the screening process so that had to dealt with before I could proceed. I was randomized and came out as “standard care” I was devastated. Would I ever be rid of this disease?  I spent a year going up to London from my Suffolk home every 6-12 weeks.  It was then impossible to carry on with the trial for various reasons and I was informed that the fistulae were too extensive and it would be better to consider a panprotocolectomy. Crying all the way home I felt bereft but I couldn’t continue with the pain I was in so I agreed. I was added to Mr C Chan’s list and waiting time and a global pandemic meant I’d have a wait. 

 

I’m pleased to say that on 18 March 2021 I had that surgery and so far, so good. This time, Sergio has come to stay and he and I will be lifelong friends.  

 

During my 22.5years with diagnosed Crohn’s I have undergone more MRI scans and colonoscopies than I care to remember, have raised money for Crohn’s and Colitis UK by completing several of their summer walks round London and worked full time for 21 years of that time, had fantastic holidays and adventures with my family, got out  of life as much as I could but the  last 18 months have been some of the hardest.  I’ve been supported by a great team at RLH and my family and yes Crohn’s knocked me down several times but I’ve got on with it, not complained too much and it’s not yet beaten me.  

 

I’ve become more patient, more resilient and more angry that this debilitating disease does not have the recognition it needs. By sharing my story I want people to see that it’s a life time commitment but it’s able to live side by side it.  

 

 

Here’s to the panprotocolectomy being my last surgery and for RHL always being there when I and other IBD patients need them.

 

Why I joined the IBD Patient Panel

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I joined the IBD panel at Royal London as a way to give something back to the hospital that has been so focused in my care, I am also interested in providing newly diagnosed patients with as much information and guidance as possible as this was missing when I was diagnosed

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