The lungs have settled, they know how to behave and bob playfully between the range of 25-28% without anymore than the usual supervision. But my stomach is not so settled. Rather, it's restless and unsatisfied, grumbling miserably about it's current state.
Just over a year ago I started suffering from my first DIOS episode, which is both unpleasant and--well, actually that's about the only term I can use to describe it. I've had my fair share of digestive system troubles in the past, mild episodes of DIOS, pretty severe acid reflux issues, and of course the removal of my appendix, but I've been scot free the past 10 or so years and was quite content to allow that trend to continue. Alas, our bodies plot separate plans from our minds, and since last year's episode I have had two more. I realize this does not compare to some of the GI issues others have had, but I find myself suddenly submerged into a new part of CF that I hadn't had much experience with previously (or conveniently forgot about). It was slightly bizaare to go through two clinic visits and barely discuss my lungs--let's hope, as a result, they do not act out and fight for the spotlight back.
So I did my research and confirmed what I already assumed, that adult-onset of DIOS is quite common. And, since I spare no details (you lucky group), I may as well share the treatment plan... let's just say it's 'project cleanout', and for those of you who have had a colonoscopy before, you will be familiar with the jugs (4 L jugs) of liquid (called Peglyte) that you must ingest (and ingest quickly) in order to flush out your system. It's just as pleasant as it sounds.
When I went to clinic a week ago, I knew full well I had chronic DIOS. I actually had to call in and tell them I was dropping by because I simply could not stand it anymore. A hungry Lindsay is an unhappy Lindsay. The week before, I had tried 4 L of peglyte, but it clearly wasn't enough, and the pain had returned with a wicked vengence and twisted sense of humour (On Thanksgiving? Come on now.). It's a 'cramping' pain, in clinical terms, but it feels a lot more like someone is twisting and wringing out your intestines. I also hadn't eaten more than one meal a day for three weeks (DIOS makes you feel full faster) which has now resulted in a massive weight loss. Which, for the record, I'm not too happy about.
Anyway, now that I've rambled, I'll wrap this up. The docs looked at my x-ray and decided that I probably needed more Peglyte--scratch that--way more. 16 L more, in fact (that's 4 jugs). Initially, they were going to admit me to make sure all went well (Peglyte can make you really dehydrated, which I had found out the previous week), but I opted to go home and sort it out myself. Seemed silly to go in the germy hospital for DIOS issues...plus, I have a g-tube, and I can abuse that baby until it's no longer necessary.
One week later and I'm fine, pain-free for the first time in three weeks. BONUS: I'm able to eat again instead of drooling over food commercials, and I'm on a mission to gain weight... I have ten pounds to gain. I'm feeling a bit grossed out about that--about shriveling to such a tiny thing (and I already was a tiny thing), but I'll get it back. Eat. Eat. Eat.
4 years ago