(Me, AKA "Scoots" on my motorized vehicle at Disneyland. It was a god-send!)
Well I've been quite quiet here on what's been going on with my ever so lovely body lately. I wish I could say that's because everything is status quo, but alas that's not so (haha I rhymed!)
Warning some gross TMI to follow. So here it is.
Way back in August I started having a lot of discharge from my lady parts (sorry I know, I can talk about poop all day, but this topic makes me uncomfortable.) It was NOT normal, but I just hoped and prayed it would go away. And well you know how that goes for me. Yeah so, by the end of October I knew I needed to call the gyno and make an appt. I went on November 9, they wanted me to come the day before, but that was my bday and I have to draw the line somewhere;)
So off I went. And after the acknowledgment that yes that was a lot, my dr and I started talking things out. She asked if any stool was coming out and I sarcastically said, "If there is poop coming out we have a whole other problem since I have my pouch and it's not connected to anything down there."
And then it clicked for both of us. A dark and somewhat scary thought, what if I have some sort of fistula! She did an exam but couldn't see anything. She wanted me to talk to my GI about it since she really didn't know where to start with trying to figure this out with my weird anatomy. Thankfully I already had an appt with my GI for two weeks later (my routine appt). My gyn tested me for some different bacteria and sent me on my way.
Rewind just a bit, starting in October, my lovely little intestines started to act up again. I took the antibiotics for the bacterial overgrowth, but that didn't help much. I was still really gassy and having pains and losing my appetite. I was thankful I'd be seeing the GI soon.
The week before my appt (which was the week after my GYN appt) I went and did my routine bloodwork. Two days later the nurse called to say my Ferritin (blood storage levels) had dropped again since my summer iron infusions. I went from a 34 back down to a 4 in 3 months (12 is the low end of normal for a woman). I would need iron infusions again, but since my appt was just a few days away I waited to talk to the GI. The appt was shaping up to have a lot more to discuss then just a routine follow up.
Last Tuesday morning, after picking up my family from the airport and before I was supposed to head to Dland, I went to my appt. I was nervous and annoyed and very tired by this point. I explained what had been going on with the discharge and before I could say what the GYN suspected, she said the word -- possible fistula. UGH.
Then we talked about my ferritin, she said I needed to get in for iron infusion as soon as possible and do one each week for three weeks, then in two months I'd have to do them again. We'll keep that going indefinitely I guess. The thing is for now my hemoglobin is fine, it's just I can't keep the storage so where is it going. I don't have that heavy of periods so is because of chronic inflammation? But my numbers look fine, of course.
And that's when the plan came out. Tests, tests and more tests. Tests to see if I have a fistula, tests to scope my pouch and upper GI tract.
- A pelvic MRI to look for possible fistula (hopefully it's nothing)
- A pouchoscopy and endoscopy (my GI called my surgeon to get the scoop on scoping a K-pouch, she now feels comfortable doing so)
- Iron infusions for the next three weeks (which I started on Friday, the day after Thanksgiving)
- A new acupuncturist to try (the same one my friend M goes too and who works with a lot of IBD patients.)
- Antibiotics (for the two infections that were in the discharge -- group B strep and bacterial vaginosis -- lovely. I started them last Tuesday)
And here we are. I've decided that every 6 months my body likes to jump out of the status quo and be even more difficult. Which annoys the stinking crap out of me, because I work so hard to live my normal!
And of course with some of the above treatments come other issues. Antibiotics make my stool so thick, I can barely get it out of my tube. Which means lots of irrigating and juice and tummy pain. The iron infusion pummeled my already worn down body on Friday afternoon (the same way the first one did this past summer, but good news is they got easier as they went along) I've been down ever since, and today has been an especially hard day -- stubborn migraine, dry heaves, anxiety up the wazoo, crying out of pain and frustration.
Then I start to thinking and not a lot of good things. I think about the list of ailments.
Chronic (meaning forever in some form)
- Inflammatory Bowel Disease
- IBD related arthritis
- Sjogrens Syndrome
- Orthostatic Hypotenstion (low BP)
The Bonus Items Right Now:
- Low ferritin (where is the blood going? At least the infusions should help with my energy.)
- Two bacterial infections
- Possible Fistula
And when I look at that list I think why can't I just mix and match, you know pick 2 or 4 at a time and deal, I can do that. But when everything starts piling up at the same time, it becomes very hard to handle in the moment. I mean, I accept the list for what it is, but emotionally when I'm down and feeling fragile both physically and emotionally, my mind plays mean tricks on me and I get sad and ask unhelpful questions.
- How can I do this forever?
- Is this why the fates haven't brought us a baby?
- What did I do in a past life?
I honestly hate feeling this way, obviously physically but emotionally because I feel like it's winning, whatever "it" is. And it's only when I'm feeling the way I am today or let myself really think about going into more tests, that the thoughts really creep in and make themselves at home. I'm usually so good and pushing them away, accepting my reality and still living a dang good life -- full of wonderful, happy people and things.
I won't let it get me down for long. I'm already feeling better mentally after a good cry, a long hot shower, some good meds, the comfort of my bed, tender care from my hubby who always knows just how to handle me and typing it all out here on this blog.
I realize that working, functioning bodies are a privilege not a right -- like driving or spandex. Some of us just don't have that privilege no matter how hard we work, but I think that makes us appreciate them even more. Because even at my worst, I'm still in awe of how much this naughty little body of mine has endured and can persevere through. I'm still pissed about it. I still wish I didn't have to work so hard sometimes, but I will keep on doing it because I don't see another alternative and I don't want to miss my life.
I read this post on one of my favorite IBD blogs the other day. I'm definitely a dandelion and proud of it, even in the darkest of little places.
Hold on to your hats folks, this little dandelion is buckling in for another ride.