I love muscadine grapes, I’ve worked on Wall Street and been on welfare, I once vaulted a 4-foot stream to get away from a bear (despite having it drilled into me that you DON’T run). I close my eyes when I dance to Orgone, and given the right circumstances I could do that for 4 hours straight. I’m 41 but people who call ask to speak to my mother, because I sound like I’m 7. I couldn’t whistle to save my life. The best things in my life are my husband and 4 children.
Urgency, blood, pain (not severe, just like I’ve been sitting on concrete all day), and total self-centeredness as I gnash my teeth about where this is going.
Hi! Adam, thanks so much for this site. It’s giving me a lot of comfort these days. Reading everyone’s stories here, I realize my case is pretty mild, but it seems to be getting worse. History…Undiagnosed IBS about 1998, just gas/pain with stress, but controllable. 2002, second pregnancy, mucus on stool – OB said to wait until after pregnancy. Late 2003, mucus returns, with nightly pain/bloating/gas – saw a GI, colonoscopy, diagnosed ‘pancolitis’. Doctor: ‘I want you to take this med.’ Me: ‘Ok, for how long?’ Dr: ‘Why, all your life.’ Me: —> (Just like with the bear.) No way am I going to be on any prescription drug for the rest of my life, I thought. So, for 9 years, I manage it with diet, trying SCD (which worked, till I went off), anti-inflammatory diet, aloe vera, all the health-food store stuff. Occasionally I’d have flares, but they mostly involved bloating/pain/gas at night. The gas was the worst, because it was humiliating if I was in public or with friends. Thankfully, my husband and 3 of my 4 children don’t have much of a sense of smell. The other reminds me that even when I think it’s just a small one, it’s really not. It’s really big. ;|
But in May this year, I took some pills with iron and I think that’s what set it off. More bleeding, pain, urgency. 6-8 weeks before I could get it under control. Then, in August, I had a beer AND a glass of wine one night – I knew wine was a trigger but I’d been playing at the edge before. And since then, all the symptoms are getting steadily worse, to where I know if I eat something, I’ll be running to the toilet 3 or 4 times in the next half hour. Sharting (sorry, but that’s a lovely descriptive word) whenever I bent over or coughed.
I’m a massage therapist, too, so I could only work on a client if I didn’t eat that day…I finally gave in, after 6 weeks, and went to my primary. He was actually a really nice guy, understanding that I was wary of prescriptions, but knowing I needed something to help. Gave me Balsalazide, which I always thought was one of the 3 kings. And set me up with a GI the following week.
The Balsalazide took 5 days to show effects,
but then I was normal for the first time in months.
So I went to the GI with great hope. And it turns out, she’s one of these doctors that I spent 9 years dreading: the bedside manner of the Sphinx, the listening/caring abilities of the Predator, and she’s only interested in treatments that are clinically proven (despite the fact that nothing out there works in the long term). She needs to do a colonoscopy – understandably – and we’ll talk more then, I guess. She said she has to see if it’s Crohn’s among other things.
So of course I considered asking my primary for a different recommendation, but we’re with Kaiser – which I otherwise love – and there are very limited options. It’s either the other doctor in her practice, or drive an hour and a half in a direction that’s much less convenient for us. Plus, even though I’ve been religiously faithful about taking the Balsalazide and staying on the SCD, my symptoms have come back – I just can’t stop the bleeding, and it makes me so agitated. So I think I should get the colonoscopy soon, to get this thing taken care of. But it seems like all the dr./drug routes just continue down this path of using a med until it stops working, then going to something stronger…I don’t want to do that. I don’t know what else to do.
But do I really want to be probed by someone I’m not entirely sure is of this planet? My husband, who is supportive above and beyond where he should have to be, reminds me that I am in control, I can listen to her without being forced to take her recommendations. And she’s probably very competent, in a by-the-books sort of way. I’m leaning toward going ahead with her (it’s scheduled Thurs) then, if I don’t like her in the post-proc appointment, I’ll ask to switch to someone else and bring my snapshots with me. I’d love some advice on this!
Where I’d like to be in 1 year:
To be honest, out of debt. I think that’s proof my colitis isn’t that bad, that that’s the first thing I think of. I want my kids to go to college, and I’d like to play jazz piano, and grow every kind of berry there is on our little farmette, along with muscadines on every fence. I want to try those wing-suit things and fly through the Spires. I want to manage my colitis completely with diet, and have the discipline to stick with it.
Just Balsalazide, for now. Which worked beautifully for about a week.
written by Beth
submitted in the colitis venting area