I had a series of loading doses injected into the abdomen and thighs, and continued to inject once a fortnight after that. I was so desperate for the treatment to work, even more so because I was getting married in June and I really couldn’t cope with crohns ruining my wedding day after it had pretty much ruined everything else throughout my life. I persisted with the treatment, but kept in regular contact with my IBD nurses to update them with any progress.
June was upon me and I was still the same, well to be truthful, I was actually worse than ever. My weight was disgustingly low, I couldn’t remember the last time I had eaten or finished a proper meal; I hadn’t left the house for weeks and all I wanted to do was sleep.
My wedding day soon arrived; the only way I could attempt to take charge of the crohns was by starving myself for the 24 hours before-hand. I had started back on the prednisolone a few days before to give me a bit of an energy boost, along with plenty of pain relief.
I was so stressed in the morning, but not over things that a normal bride should be stressed over. I wasn’t bothered about the perfection of my hair, make-up, the venue etc; I just had all these poo-based scenarios whizzing around inside my head. What if I can’t get out of my dress quick enough when that diarrhoea urge hits me? What if the urge hits me on the short journey to church in the vintage car? What if I can’t do the one thing that I’ve been dreaming about for so long – walking down the aisle to the alter – because I have to run through the church clenching my bum cheeks? I was certain that one of these scenarios would play out despite not eating. I had my Mum and sister on stand-by to help me when I got the sudden urge to go. My dress was like a humungous meringue that was tightly clenching me by the corset; it would take me a good five minutes to get out of it.
Thankfully the day went without any major glitches, and I managed to get to the toilet with help when I needed it. Things couldn’t have been any more perfect, but I did find it difficult to enjoy the reception because I was just so exhausted. Sadly, the morning after I was brought back down the earth with a bump. A few of us were packing up the reception room we had used, removing decorations etc when all of a sudden I had that horrible hot flush with the desperate urge to poo.
Within a split second, I lost all control and my knickers were filled. I was absolutely devastated. I immediately ran out the room to the toilets, I entered the ladies and it was pitch black. I turned on the switch and it was still pitch black. The hotel had only gone and turned the electricity off in the function suite. By this point the tears are flowing and I’m sobbing with self-pity for myself. I used my hands to feel my way around and sat on the toilet. I tried to clean myself up, not that I could see what or where I had to clean up. I sobbed and sobbed for a good ten minutes, shouting out several names in hope that someone would hear me. Nobody came; I pulled myself together and felt my way out of the ladies.
Of course, my face now resembles that of a swollen tomato; Richard asked me what was wrong to which I then start crying again. I got in to the car because of the smell I was radiating, and then I notice the brown watery patches on my jeans. This is something I was used to, it had happened 100’s of times before, but it never got any easier.
Summer came and went; I felt so sorry for my daughter because I had become so afraid and depressed from having no control of my bowels, that I wouldn’t leave the house. And, if I did it would only be for a trip to Tesco when I knew my bowels were empty. The summer holidays weren’t a pleasant time for Chloe, she was so bored she just wanted to be back at school.
I had a routine appointment in the September with Dr M, I was in such a sorry state. I was skeletally thin, hadn’t eaten properly for months and the abscess on my bottom was the size of a conker. He admitted me there and then and we concluded that Humira wasn’t helping my condition at all.
I was prescribed a strong course of IV antibiotics and steroids to give me a bit of a boost. I had an MRI scan, colonoscopy and endoscopy. The crohns was absolutely rife in the anus, rectum and lower part of the colon. For several months now I had been researching ileostomys, something that once filled me with sheer panic was looking more and more desirable as the toilet accidents totted up.
A dear friend of mine, Lauryn, had been battling severe crohns for a couple of years now and had fairly recently had an ileostomy formed. As she recovered I watched her flourish as she was finally able to start living life again, it was such a lovely thing to see. She was always very open and honest about her stoma, she would show me pictures of it and explain various things to me. I couldn’t believe how small and discreet they were, completely not what I had expected and that made me feel quite positive about the prospect of a stoma.
I had a meeting with the gastroenterology team about my remaining options. Having a stoma formed was one of the options and so my surgeon Mr H came to discuss it all with me. He was aware of my deteriorating lung condition as he had known me for years. Mentally I felt ready for a stoma because my life was just so unbearable; it wasn’t a life, I merely just existed. Mr H was more than happy to do the surgery for me; he believed it would finally put an end to all my pain and suffering.
It wasn’t to be though; a GI that was doing the ward rounds the following morning – who didn’t even know me – had already decided that he was going to start me on infliximab in a final bid to settle the crohns disease down. I was pretty heartbroken about it at the time; I’d geared myself up for the stoma knowing that it would give me the life I so desperately longed for. I had my first dose of Infliximab and then discharged myself in anger.
I plodded on to Christmas by which point I’d had 4 Infliximab infusions with no sign of any improvement. I was losing blood frequently, my weight had dropped further to 5st 8lb and I was sleeping several hours a day. I moped around the house, losing every ounce of any remaining energy in my body through my bowel movements. The Christmas holidays were a dark time for me, I didn’t feel enthusiastic about any of it. The hardest part of all was seeing the sadness on Chloe’s face every time she asked if we could go out or do something. She was such a good girl, she always understood and comforted me, she didn’t know a life where her Mummy wasn’t ill. Her life shouldn’t be this way though, no matter how much she understands or pretends not to feel let down. In my mind, I knew I was letting her down time and time again, and it absolutely broke me. I sat crying in bed while I reminisced on her life; she knew of love, lots of love, it was the only thing I could offer her and I made sure she had it in abundance. The memories I had all seemed to consist of upset and sadness. Defecating myself, searching for a toilet, laid up in bed with exhaustion; this wasn’t a life I wanted to live, I owed it Chloe, my husband and myself to end this unhappy existence. Only I could change things.
I called my IBD nurse and had a good cry down the phone about things and how the Infliximab had failed to help me. We had previously discussed that a stoma would be the final (and best) option for me, she knew how positive I was about it because of the years of misery I had been living with. She arranged an appointment for January 3rd 2014 to see both my surgeon and GI together, and it gave me something to focus on.
Friday the 3rd arrived; I was excited, but nervous, about the appointment. I so desperately wanted that stoma and the chance of a normal, happy life that came with it. I was only nervous out of fear that I would be denied this only chance. My surgeon was already aware of the positive feelings I had towards forming a stoma, and my GI was on my side with it, too. I went into the room and we talked, and I cried once I started talking about my problems. I said “I can’t carry on like this; I want to have a stoma”.
I let out a huge sigh of relief at their declaration, “We both think it’s the right time for you to have a stoma, it will improve your life massively”. This life-long battle was soon to be over and the tears of happiness were flowing. There and then Mr H booked my surgery in for Wednesday the 5th of February, the 33 day countdown was on!
In between then and the procedure, I met with the stoma nurses a couple of times, had a pre-op where I was marked for the stoma formation, and got clued up on everything stoma! Time seemed to drag so slowly, I was like a child on Christmas Eve, a very long Christmas Eve! I had no doubts or reservations whatsoever; I was 100% ready for it.
The 5th of February arrived; naturally I was starting to feel anxious about the operation because of the anaesthetic risk on my lungs, but I was very excited none-the-less. It was an early start Richard and I left the house at 5:45am and arrived at hospital just before 7am. No surprise to anyone, but that morning when we were so close to hospital, I lost control of my bowels. For the first time EVER, I didn’t care! If anything, it sealed the deal and assured me that I was making the right decision; all doubt had been emptied from my mind.
I cleaned myself up and we headed up to the admissions ward. The bed was prepared, I got in to my theatre gown and those not-so-gorgeous matching stockings. Mr H came and had a chat with us, a bed in ICU was ready should there be any complications with my lungs, and I was third on the surgery list. Time didn’t see to move, I spent the next hour and a half clock-watching and moaning about how I could murder for a builders tea with a packet of shortbread.
At 9:15am my time had come and I made the daunting walk to theatres it was only when I said good-bye to my husband that the emotions began to flow. I had opted not to have a spinal block (which I regretted later on), so I walked directly in and laid myself on the theatre table – which surprisingly looked like a dentist chair! I just wanted to be ‘put out’ rapidly before I started to panic and get myself in a state. A cannulae was inserted, along with something in a syringe, and I drifted away to the land of nod.
I woke up a couple of hours later in recovery, the operation had gone smoothly, but I had some respiratory distress when I woke because of the pressure that had been on the lungs during ventilation. I spent the next 48 hours in recovery and was eventually taken up to the colorectal ward late on Friday evening.
Unfortunately, the ileostomy wouldn’t pass anything, and a tough couple of weeks followed. I was taken back to theatre late Tuesday evening of the 18th to re-fashion the stoma, this time they defunctioned the colon and formed an end ileostomy. The only reason the colon hadn’t been removed was because of my ill health and low weight which made a serious operation all that more risky.
My new stoma worked immediately and it felt so good to enjoy the taste of food and drink after being on TPN.
Five days later I was home, my incredible new life began and I have never looked back.
And the rest, as they say, is history….