I’m 31, though the festivities have been deferred until the current flare is over, and was diagnosed with UC when I was 27. I’m 3 months into my second flare, the first one lasted 2 years but I had complete remission in the meantime.
Some more about me:
I’m a lawyer by trade, and a karate instructor by passion. I love to garden, growing vegetables and herbs, and am somewhat impatiently waiting for 15 trees to mature enough to produce fruit, and also cooking and eating my home grown and local food.
It’s 4am and once again I’m awake after the usual 3am butt pee, with steroid-induced insomnia. Not that the hospital noise helps, but at least I have the room to my self tonight, after the previous roommate with sleep apnea, and the one before that with the constant cough…
I’ve been here a week today, having come into emergency after hyperventilating and nearly passing out in pain. I’d been flaring for a couple of months, but after the first week or so on pred, things had seemed to be settling down. I’d even had my first formed BM that day then bam, this excruciating pain.
The scope showed inflammation through the whole colon, and bad enough to be close to perforating.
Over the week, meds have ramped up from 50mg pred and 4g mesalazine granules to IV methylpred, pred enemas, 100mg imuran, 2 courses of antibiotics and a remicade infusion. The infusion was a day and a half ago, but I haven’t noticed much improvement from it yet.
Going back a bit in my story, I got into remission from my one previous 2 year long flare on something like the above regime and scd. A year later I’d come off the meds and things were going well.
Then life got busy and I got a bit slack with scd, work was stressful and I was drinking way too much coffee, and taking pain killers and anti-inflammatories for a herniated disc in my neck. Yeah, I know it’s obvious something has to give! But when you are in that spiral, is hard to stop going down.
This time, I started the GAPS diet, not because I was unhappy with scd, but because I found a local naturopath who is also a GAPS practitioner and I felt like I needed more guidance this time through, and I guess someone to keep me on track. I’d kept meaning to do the intro diet again and not getting around to it.
The thing I find most scary, and that was totally different to my last flare, was how everything seemed stable, and then all of a sudden, my colon was nearly perforated. Last time, I never got to that much pain, and while I did get really bad, it happened over a much longer period.
I’m wondering if other people have gone from mild and stable flare to out of control in the space of hours, and also thoughts on a possible connection with diet. I hadn’t got much past the beginning of GAPS intro, eating only puréed soup, boiled chicken, eggs, ghee, chicken livers and honey. I’m curious to know if that was putting so little pressure on my gut that the inflammation could just get worse but with little change in symptoms.
Anyway, thanks for listening. I mostly prefer just to retreat into myself when I’m sick, and apart from my husband, don’t like getting visitors in hospital. So it is nice to have this forum to vent.
Maybe now I can get back to sleep…
written by Catherine