@trish1968: Wow. Again, I’m amazed at what you’ve been through and come out the other side of. It just goes to show you that this isn’t an easy path; there is another thread where someone is just so frustrated with his course that he was thinking he should give up, and I really felt for him, but I feel like enough of us have seen bad days and come through them that it’s worth carrying on.
With my staged revision, I had a jejunal resection for massive scarring from chronic peritonitis that went undiagnosed for well over a year, and took 18 months to get to surgery. When he had to do the high ileal ostomy at the same time, leaving room below to make a second pouch, I malabsorbed food so badly for 10 mos (whatever I ate would pass right into the bag within 90 mins) that I was worried I was going to cannibalize all my muscle and not be able to heal my surgical wounds. (I lost a lot of muscle then, but I started protein shakes and weight training on my own, just trying to stave that off somewhat. It was scary how weak I was.) But as soon as the ostomy came down and I got 2 feet of ileal length back, I started gaining weight uncontrollably. It has been horrible. I just gained weight every day without fail, even on limited calories, and couldn’t stop until I was far heavier than I wanted to be. And this time, it’s not muscle!!! But my A1c is still normal, shockingly—we have DM on both sides of the family, pervasively. To the extent where we all assume we’ll get it. So now I’m wondering if my extensive jejunal resection is delaying that somehow… and I’m trying to reset my metabolism to a better level, but it’s an ongoing struggle.
@CTBarrister: I thought DVT from air travel was commonly known about now, especially for longer flights. But airlines certainly cram us in like sardines, and restrict the ability to move around the cabin far too much (which I hate most for restricting restroom access), so it’s inevitable. And when they stopped serving beverages, well…
Interestingly, as a poucher, I don’t hydrate when flying anymore. I used to be aggressive about it d/t dehydration risk, but then my ankles and feet would swell so much I couldn’t wear my shoes. (Edema, not blood clots.) Even with the hated compression stockings. No one seems to understand why; it started after my big revision pouch surgery, and I think they had to have damaged the pelvic lymphatics, but that’s understandable given the mess that was in there. Now I drink caffeine when traveling, as a means of regulating that edema—long car rides are risky, too, not just flights, for anyone with propensity to DVT or swelling for other reasons. It was the only way to keep the swelling from happening, as I found over time; otherwise I avoid caffeine like we’re all supposed to. I don’t think dehydration is a significant contributor to clots unless it’s profound, and by then we’d be symptomatic in other, more obvious ways anyway…
The three big things that predispose to blood clots, Virchow’s classic triad, are stasis, hypercoagulable state, and endothelial injury. The third is unlikely from travel, is more likely with surgery. The first one is the travel bit—sitting and not moving, whether car/bus/train/plane—but calf pumps and ankle rolls and all that can help, as can getting up and walking around. The middle one is the one that is the least predictable, though, and the one that conveys the most risk of all of them. I agree that BK is at more risk w long air travel—but not significantly so if well-managed on blood thinners, and car rides can be just as bad—and they take longer, too. So it’s probably a lot to say don’t fly. It’s more practical, perhaps, to say take shorter flights/not nonstops for long distances, get up and walk, do calf pumps, basically—pay attention. But the blood thinner manages the hypercoagulable state, which is the biggest risk.
My new gyn was concerned about the OCPs I use to manage ugly inflammatory period pain, since I can’t have ibuprofen anymore d/t history of pouchitis on it. I’ve never had that with the new pouch, but my GI thinks it’s not worth the risk of trying ibuprofen again. The OCP I use has low dose estrogen and drospirenone, which mimics aldosterone and helps the kidneys retain potassium—I feel as though it has helped a lot with electrolyte balance, so I don’t want to give it up. New gyn wants me to, precisely for clot risk! That’s what prompted me to do some digging. But I’ve been on this one for 11 years, was put on after I developed UC, over the age of 35, just to help with my electrolytes while controlling the other stuff. I even seasonally cycle—don’t take a break except 4x a year, to have fewer periods, since they’re miserable—and have been through all the crazy surgeries and infections and periods of profound debilitation during that time. So far, no clot. I kind of think that’s a good enough litmus test of my risk, esp with my mild platelet abnormality that promotes bleeding; my GI thankfully agrees, says I can keep my OCPs! (Phew.) I figure it won’t be an issue in a few years anyway, but for now, it really is one. (Prior chronic pelvic infection from leaking pouch for 18 mos means brutally painful periods now. I could barely see straight, much less take care of patients, when it hurt like that. Seasonal cycling is a lifesaver.) Now I have to worry about being obese adding risk, though. I didn’t have that risk during all the surgery/chronic illness.
As an aside, for me, the worst thing about flying is the lack of bathroom access! I’ve been on a flight where the bathrooms didn’t work and they didn’t tell us til we were taxiing. It’s ridiculous and against the law, from what I understand. And I hate how, in the main cabin, they get all shirty with you for lining up for restroom access. But if you don’t get in line, you never get to go—and I don’t have enough control now to wait, after the revision. I’ve flown Southwest when I could, and paid for early boarding to get an aisle seat near the front restroom, but even then, I was disappointed to be treated very rudely by the flight attendants on one flight, and not allowed to use the front restroom—which is ridiculous, since they don’t have a designated area for business class or anything like that. I guess this is why I need a Twitter account—to shame businesses into doing better. (;
Anyway, all interesting points, and I appreciate your sharing! So much to think about, and there’s always something I could be doing better, I know. I think the fact that this is a ‘hidden disability’ is a big pain; I don’t like explaining my business to everyone on the plane to make them understand why I need to do what I need to do. But then people can be rude and unhelpful, and deny restroom access. Another challenge…
