Chris, age 37. Diagnosed in September 2013 after a colonoscopy and a very long summer of deeply unpleasant symptoms. Not thrilled to be making my acquaintance with so many new doctors, blood tests, medications and procedures.
Some more about me:
Originally from Washington, DC. I haven’t lived there in 20 years but also haven’t totally gotten politics out of my system – I’m fascinated by the “journalist-lobbyist complex” and the political process. I do non-profit work now and in my scarce free time like “rare trackage” train rides, kayaking, visiting New York City and Philadelphia, and learning to cook chicken in as many ways as possible. I’ve never met a dog I don’t like, and have trouble putting down books of the detective fiction genre.
At a Crossroads
I suppose on a website about UC, there’s really no “nice” way to tell a diagnosis story, so here goes, hopefully without being too gross:
Last summer, I joined a gym, got a trainer, and changed my diet. Everything was great for about six weeks: I was losing a little weight, enjoying the extra energy, and liking feeling more fit again (after about an eight-year break seeing the inside of a gym). But then things changed.
Some background: maybe five years ago, I’d had some irregularity, some mucus and some blood in my stools. I saw the doctor who referred me to a GI who said I had hemorrhoids, suggested I start Metamucil, and overall drink more water. I did, and sure enough, within a couple weeks, the symptoms were gone, and everything was back to normal.
Back to this past summer. Those same symptoms started again, but worse, and were accompanied by the heart-stopping, terror-inducing urge that many readers of this will know all too well. But the product of those visits to the toilet was all gas and mucus. I’ve never had any diarrhea at all; when I was at my worst, I was actually pretty constipated, and the bloating was really awful. I’ve never had any pain. Even though there was no diarrhea, because of the explosive gas and mucus, causing 15-20 visits to the toilet each day, I had to greatly curtail any physical activity, and plan to stay near the bathroom in particular after breakfast and after dinner. And yes, there were a couple of mucus-related accidents.
After a couple months of this (and increased Metamucil, water, and fiber bars, all to no avail), I went to my internist who referred me to a GI. I described what I was experiencing and he ordered a colonoscopy. I had it done that same week, and when he visited me in post-op, he had seen the pictures and they confirmed his suspicion: UC.
I’ve been an insulin-dependant diabetic for over 20 years, so I’m used to serious diagnoses. I didn’t really know much about UC at that point, but figured nothing could be worse than diabetes. My doctor is young and easy to talk to and encourages contact between appointments via email (a first for me with a doctor!), so I felt confident with him. I was determined just to do what I needed to do to get past the shock and start getting better.
In post-op, the doctor gave me prescriptions for a course of Prednisone (6 then 4 then 2) plus Lialda (just $10 a month with the discount card). Within a few days, I was totally back to normal, and suffering no side effects from either medicine…other than VERY high blood sugars from the Prednisone (which I expected). I was eager to taper off so my blood glucose readings would come back down to earth.
I was down to two Prednisone a day when the symptoms returned: a little mucus, a little blood, but bad irregularity. I went back up to four, and the symptoms stopped. I told the doctor about it and he said the Lialda wasn’t working, and he suggested switching to Humira, knowing that as a diabetic it was important to get me off the Prednisone as quickly as possible.
And then I found this website (and bought the ebooks!), and started doing more research into Humira. Basically, I’m terrified to try it. The reviews here and elsewhere are pretty much universally awful, and can’t get my head around injecting something so potentially dangerous into my body. And I’m slightly confused because – although unpleasant – my symptoms are not nearly as awful as most of the other stories I’ve read, so Humira for me seems like overkill.
My question is: what other options that folks here have tried might I suggest to my doctor? I’ve read about Uceris, which seems promising (I know it’s like a steroid but my understanding is that it’s much easier on the body than Prednisone), and also sulfasalazine – in a different drug group than Lialda. I know there are many other options; I appreciate I might be left with no other option but Humira at some point (my insurance will not cover Simponi), but I want to make sure I’ve exhausted everything else before taking that step.
Right now, on four Prednisone and four Lialda a day, I basically feel fine. I’m regular, there’s no mucus, no blood, and minimal bloating. I’ve noticed my temper’s a little shorter than usual and I have some slight double vision early in the morning and late at night; my research suggests it’s the Prednisone. I’d like to get off it entirely, but would like to know the best way forward.
I sense there are a lot of wise and experienced eyes reading this, and I’d love to know your thoughts.
Lantus: 22 units/day
Novolog: sliding scale
Levothyroxine: 75 mcg/day
Simvastatin: 10 mg/day
Melatonin: 6 mg/day
written by Chris V
submitted in the colitis venting area