My Colitis Treatment Journey: One Step Forward, Two Steps Back…
Do you ever feel like your life is just constantly one step forward, and two steps back?
Colitis treatment frustrations
I have felt this way so often since being diagnosed with colitis. When I was first diagnosed, I had surgery to form an ileostomy less than a week later. I thought that the 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.
J-pouch to treat my colitis
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.
Pouchitis and exploring treatments
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 colitis 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.
Temorary remission, more pouchitis
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.
And 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.
Chronic pain and more treatment frustrations
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 Fridays, 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 to 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.
Another colitis surgery
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 an appointment 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!
A neverending cycle
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.
Flares and depression
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 infliximab 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.
Light at the end of the tunnel
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.
Ongoing treatment challenges with colitis
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 with my ulcerative colitis. 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!
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