Do you ever feel like your life is
just constantly one step forward, and two steps back?
When I was first diagnosed, I had
surgery to form an ileostomy less than a week later. I thought that surgery
was going to mean that I could go back to my normal life.
One step forward!
I hadn't been sick for long enough
to really even realise what being diagnosed with an inflammatory bowel disease
meant. I had so many issues with that stoma, which resulted in me barely
leaving the house. I had leaks and burnt skin so frequently, that just felt
easier to stay home.
Two steps back.
When I had my J-pouch created, I
thought that was going to make all of the difference. Again, I was looking
forward to finally getting my life back, and I could now look at changing jobs!
I did get some of my life back; I returned to socialising with the few people I
had left to socialise with. I made it to festivals, and on holidays, and to
family gatherings! I moved in with my partner.
One step forward.
Then, the pouchitis raised its
ugly head. The pouchitis was antibiotic-resistant, but it took weeks before
that was confirmed. Steroids worked for a while, but only for short amounts of
time, so I was constantly having a little taste of life and then being sucked
back into a flare. It was a constant one step forward and two steps back cycle.
Ultimately, the pouchitis ended up steroid-dependent, so alternative treatments
had to be explored. At this point, I had given up on trying to socialise again.
After work, I went straight home to rest.
Two steps back.
Finally, Azathioprine helped me
achieve remission! I got a new job, and I could finally see a career path! I started
socialising with my new colleagues, and I made a huge step in my personal life by
ending a toxic relationship. I moved house, AND I managed to keep it clean!
One step
forward.
Then, the
pouchitis was back. I was gutted. I’d tasted life again and I so desperately
just wanted to be able to stay there. I had to wait for tests before I could be
funded for infliximab, so I played with my diet and alternative therapies in
the meantime. Nothing really helped ease any of my pain, and I ended up
surviving on mainly blended foods and liquids. I’d returned to my work and
sleep ritual, apart from on Friday’s, when I would go out for a few hours with
my mum to the pub. I was determined not to end up completely isolated again. My
flexi-sigmoidoscopy identified a stricture, and my IBD nurse wanted to discuss
removing my J-pouch, which I was so not ready for. This put a halt on my
infliximab option. So, I requested a referral for a second opinion, with the
aim of having the strictures dilated. As usual, this meant a lot of
waiting, and chasing.
Two steps back.
The new surgeon's appointment
arrived, and I was so relieved to finally be getting some answers. Some action
planned.
What actually happened was the request for more tests, at the new
hospital! I was expecting a follow-up appointment, but instead, I got an urgent
phone call. The barium enema X-ray confirmed strictures, and they needed to
be operated on ASAP. I was given a date just 5 days away to come in for
surgery. Finally, I could see the light at the end of the tunnel; the
strictures sorted and the start of Infliximab!
The surgery went ahead as planned,
but I woke up with a stoma, which I knew was a possibility. My J-pouch had been
damaged and refashioned, so it had been left to heal. Within a few weeks, I was
pain-free. A few weeks after that I was back at work, and back to socialising!
My defunctioned J-pouch was behaving itself.
One step forward.
And it continues… Five months
later I got the call for the reversal. All went smoothly and I went back to
living my life. When pouchitis came again, I expected to start Infliximab as
planned, but my IBD team wanted to treat it as though it was a new pouch, so I
had to start at the beginning again. I flared for so long, I was back to just
working and sleeping. I slipped into depression and stopped speaking to people.
I didn’t go on social media anymore because I wasn’t doing anything to talk
about. I felt too negative to be of any use in the #IBDSuperHeroes support group. I went through all of the medications that hadn’t previously worked
until I was finally back at the Iinfliximab stage again.
Two steps back.
Infliximab didn’t help either, and
so the decision was made to remove the J-pouch in favour of a permanent stoma.
As usual, I had to wait to see the surgeon, and then I had to wait for the actual
surgery, but it was light at the end of the tunnel! Even just knowing it was
coming perked me up a bit. I felt the depression starting to lift at last, and
I started going back online and talking to people. I was so certain that this
was it. This would be the last surgery, and I could finally just have a life
and stop pausing it!
One step forward.
The surgery was super tough to
recover from. I didn’t feel able to bounce back like I had after previous
surgeries. Pain in my knees, hips, ankles, wrists, and back made it more
difficult to return to “normal” activity. My muscles were struggling to recover
from any physical activity as well! I was so deflated and sad, but also angry.
This was supposed to be my fresh start!
Two steps back.
Two years after that surgery, I
was diagnosed with secondary fibromyalgia. It explained a lot. The diagnosis
did at least lead to some specialist help. I had already started trying
different routes to ease the pain, and it turned out that I was headed in the
right direction. It’s a work in progress, and it probably always will be. I’ve
had to sit with that and accept it, but there are still occasions where I feel
like it was just an additional kick in the teeth!
Originally posted on InflammatoryBowelDisease.net
