You know that special “gut feeling”? Actually…no.
I won’t keep you waiting. The magic word is: Levsin. Now for the blah blah blah: After six months of this crap I went in today for a third opinion. The second opinion had been uneventful and unremarkable, like trading ground hamburger for ground turkey–no thanks, I’ll stick with what I’ve got. This visit, however, illuminated just how mediocre my care has been. For one, a doctor sat with me for more than half an hour getting my history. Then I received a brief physical. THEN the actual doctor I’d set up the appointment with came in, and together they answered all of my questions, and then that doctor conducted his own physical. Last, the first doctor sat with me for another twenty minutes answering additional questions while he set up appointments for another flex sigmoid and a sooner dose of Remicade. I thought I’d won some kind of contest. Or that they had my medical record mixed up with someone worthier. This kind of time and attention is unheard of, a completely alien experience. I was there a total of two hours, and walked away with several revelations, the most mind-blowing being: THERE ARE MEDICATIONS TO REDUCE CRAMPING!!!
Maybe you knew this. But holy cow, I did not! Not once, not ever, did my GI or the nurses mention a little thing called Levsin which – and I only just have the prescription so the personal review is forthcoming – reduces cramping associated with irritable bowel disorders, diverticulitis, peptic ulcers, etc. What was even more surprising was that they brought this up on their own, I hadn’t even thought to ask the new docs about pain management! I mean, I thought discomfort was a fact of life. Every time before I’d been told to “Just take Tylenol.” (Which is such a joke, Tylenol doesn’t touch it.) Fingers crossed that Levsin does.
In closing, this “discovery” further reinforces my belief that even if you’re madly in love with your doctor, a second (or third) opinion never hurts. It should, in fact, be mandatory if your situation is not cut-and-dry. I trusted that my doc was giving me ALL my options, and come to find out, she was not. Whether she didn’t think my situation rated it (and that’s pretty strange because I’m on the phone with her office once or twice a week) or whether she (or her staff) weren’t aware that things like Levsin exist I can’t say. It’s not like I didn’t ask if there was anything we could be doing for the abdominal pains. A doctor-patient relationship shouldn’t be like communicating with a genie, and since you’re paying them for their expertise, they should be informing and educating you. Caveat emptor, friends.
Hell comes in these flavors.
So of course I couldn’t be on medication without some kind of reaction/complication. Add to the lovely hand rash and re-occurrence of blood the stabbing abdominal pains, and the doctor covering for my PCP wanted to do a CT scan to rule out the myriad complications that immunosuppressants can give you – abscesses on your internal organs, pancreatitis, cirrhosis of the liver, etc. And naturally, that meant drinking two barium sulfate shakes. (More details here: READI-CAT) What they didn’t tell me was a) the “vanilla” smoothie tastes like you’re drinking two Venti cups of straight Kaopectate and b) that even in normal people, this crap will give you diarrhea and mess you up for the rest of the day. What do you think it does to people with active/almost-in-remission flares? I’m not going to explain what it’s like to visit every single restroom at a medical facility like you’re on some warped scavenger hunt, leaving rather than retrieving prizes.
Who’s got two thumbs, UC and a pair of snowshoes? This girl!
It’s winter again. The Northeast just got clobbered by, what else, a Nor’easter. My energy levels are returning to near-normal, so my husband and I decided to take a nice stroll across the street to the running trails and bring along our snowshoes. It was a balmy 20 degrees, I might add. You probably think I’m crazy. I’ve got a UC flare that’s still not quite in remission and I’m going to go snowshoeing?? Um…yup. Gotta get back on the horse sometime! To quote my mother, who is dealing with her own challenges of knee replacement surgery, “I’m sick of being told no!” And to quote the article “Fitness Benefits of Snowshoeing” (which is quoting Dr. Ray Browning), “Snowshoeing is the best bang-for-your-buck, fat-burning workout in winter. . .It’s an exceptional way to achieve cardiovascular fitness, expend energy and reduce your chance of heart disease; plus it’s low cost, easily mastered and fun.” Need more stats? “According to two independent studies conducted by Ball State University and the University of Vermont, snowshoers can burn between 420-1000 calories per hour.” How’s that for something that is, essentially, walking?
I missed all of the hiking, foliage-peeping and apple-picking activities I’d planned for Fall. I’m not missing out on winter, too, and more importantly, I’m not going to allow myself to get any more out of shape. And while the treadmill is fun and all, sometimes you just want to feel outdoorsy (and normal) again. IBDers know that running during a flare is a no-no, however with snowshoeing you can adjust your speed, your resistance (flat groomed surfaces versus uphill through powder) and of course, your distance, thereby engaging in a safe form of exercise. Combine that with the added bonus of fresh air and what errant rays of sunshine you might catch, and it’s a mighty healthy activity. The only drawback is, of course, lack of facilities. Fortunately I’m at the point where 9 times out of 10, I can predict my good days and bad days (or good hours and bad hours). A month ago there was no way I’d head out into the woods. So perhaps this winter sport is best shelved until the bowels behave themselves–or at least can wait when you ask them to.
Wine, it’s called “the nectar of the gods” for a reason!
Happy New Year! I’ve never been big into New Year’s resolutions, which is to say, I make and break and re-make resolutions throughout the whole year. But one resolution I won’t be making any time soon, even whilst struggling to get a handle on this pesky ulcerative colitis, is giving up my red wine. And here’s why: “RADIATION PROTECTION: BROCCOLI AND RED WINE MAY INCREASE SURVIVAL FROM EXPOSURE.”
We IBDers are at increased risk of colon cancer, as we are all probably highly aware by now. And of course, we’re all exposed to many other potential carcinogens on a daily basis. Or, if you’re like me, you already glow in the dark because you’ve had so many x-rays. So sure, steam your broccoli. However, if you can stomach it, pour yourself a nice robust glass of red too. Continue reading