I think the biggest highlight for me was Spencer getting in the water. Wow - I've never seen him in there before. It's been well over 4 years for him. Because he's on oxygen we haven't ever been swimming together. But since it was in an apartment complex swimming pool, He hooked up his super long tubing and got in the water for an hour or so. and it was AMAZING. :) It just light up my heart seeing him finally screwing off his CF and just doing what he wanted to do. SUCH a good feeling. He had so much energy today and was so active. I couldn't be prouder and more happy about how today went!!!
The one down thing about today - I realized that I seriously need to get in to see a GI. =/ I've really been neglecting my health more than I should be. It all started with me getting minor stomach cramps after I ate.. That continued to get a little better over time. But depending on what I ate - I'd feel sick. My bleeding came back, bright red, so I know that it is from my lower colon/anal/rectum area and it's also gotten worse. At first it was just here and there, but It's becoming a slow, steady bleed which is concerning me. My stomach has been feeling okay - but I've been more tired lately with less energy. So I'm wondering if my iron/hemoglobin count is falling a bit. It's been so long since I've been worried about the turn my health is taking and I'm starting to get really frustrated with myself because I haven't listened to my body.
I am 2 years over-due with scopes.. Which scares me too. When I was scoped a little over 2 years ago I got news that I was very inflamed in my colon and I had developed pseudo-polyps. The plan was to get scoped once a year to remove polyps should they develop, and if not - just keep an eye on what's going on. Also since I've had Crohn's for over 8 years - I am at a very increased chance to get colon cancer so I should be screened at least once a year. They also found a stricture somewhere down there and so I need to have that watched to.. Just build up of scar tissue... =/ I have neglected this big time and I'm just scared to get another one. But it's time... It's just that time.
I've also been off all my meds because nothing has worked. I either react to them all or they just simply have no effect. I was last on asacol and Humira. The Asacol didn't seem to do a thing and I reacted to the Humira (site reaction/hives) So I stopped that. Also my insurance ran out (kids, on my moms) and so we couldn't really afford anything.. so i've been taking the bare minimum. Nothing for my Crohn's. I need to figure out a med combination because it's really bad to be off all meds. With Crohn's, it's auto-immune so the inflammation just keeps comming (most of the time) and so you have to have somethingg to suppress it. ya.... Nothing has been suppressing mine - I'm scared to see if anything is even getting through down there... (which ya, i've been really constipated.. yikes.. with the stricture being there, that might not be good.)
So I guess tomorrow I'm going to be calling the GI clinic here in Salt Lake to see a brand new GI.. Wish me luck.. I HATE HATE HATE switching doctors.. it's stressful and a bit scary.. ugh. Not looking forward to it.. but this has just been a blunt reminder that I do have a chronic disease and it gets worse before it gets better...
-Nikki
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