So, I made a spreadsheet a few days ago to compare the main ailments that are being considered by myself, by my new doctor, by my family...here are the forerunners:
1. Recurrent Parasitic Infection by Blastocystis Hominis
2. Overgrowth of Yeast
3. Celiac Disease
4. Crohn's Disease
Here's where I'm at on our theories.
1. Three samples of poo have shown no itty bitty parasites. So I'm going to leave that one alone right now and assume there are no parasites in my gut. Thank the Lord.
2. Overgrowth of yeast--technically still a possibility. The yeast they did find in a stool sample was not overgrown, it was sparse. Still don't know what type it was though. We all have yeast in our gut, but it's supposed to remain balanced with the good stuff in your gut. Everything is all about balance. The universe must have an equal amount of good to counteract the forces of evil!
3. If I really just had Celiac Disease, I'm thinking that not eating wheat would have helped by now.
I have read that wheat/gluten intolerance is associated with thyroid disease and I haven't (intentionally) had wheat in a long, long time. Remember how my thyroid antibodies were down to 'normal' levels and no longer too high? I'm wondering if it was cutting out wheat.
In any case, it might have helped my overall situation because of an intolerance, but the stories I've read about people with true Celiac Disease indicates that cutting out wheat makes a drastic improvement right away. ? Thoughts?
4. Crohn's Disease is also still a possibility and can only be 100% ruled out by a colonoscopy. I have had the blood test done and it was negative. I have some reservations jumping on this one for myself because while I do have some hallmark sypmtoms (diarrhea, weight loss), I do not have others (loss of appetite, internal bleeding, pain inside your gut, ulcers, the D isn't uncontrollably urgent, possible fever...). So from what I know about Crohn's versus IBS, it sounds more like I have IBS.
So what am I doing now? Well, from my recent poo tests I have two new pieces of information. 1. I do not have a parasite (though I have heard it takes up to ten to spot those buggers! I'm not doing that right now...) and 2. I have no normal flora in my gut. This is the information I am using going forward...see next blog post.
Now, as my dad has explained to me, a colonoscopy is a 100% for sure way to rule out some of these things. Friends and family have had them done and survived! But I'm going to use my amazing powers of prediction to guess that a colonoscopy would show that there's inflammation (No, shit, Sherlock) but no bleeding, no damage to my small villi, no ulcers....and guys, I am not ready to do that yet.
I am not ready to drink that gallon of crap and then crap my pants out SOME MORE just to hear some more doctors say they have no idea what's going on. I know, I know, "How will I ever know what's going on if they don't look!?"
Doctors can't tell everything just by looking. It's like exploratory surgery 'just to see' what they can see. Not a fan. I used to have a mindset that gave doctors free reign to do whatever they said was necessary to fix the problem. So sue me if after a year and a half of no diagnosis I'm not as trusting. Last time I let people poke around by my guts (um, a c-section), my guts didn't respond very well. And also I have a neighbor who has had a bowel perforation and I am not even going to go into that...read more about horrible risks here.
A colonoscopy is obviously something I will do...at a certain point. I will talk to my doctor, see what she thinks, and go from there.
Have a colonoscopy. They're not fun, but they are not that bad either. It sounds like you know you're going to need to do it eventually, so why put it off? It's not going to be any more or less fun a week or a month or a year from now. It is what it is, and you need one, if not to determine what is wrong, to rule out more possibilities, which is a legitimate method of diagnosis. I have had 3 or 4. My first was in my mid-thirties. My last was at Mayo. My paternal grandfather died of colon cancer and I didn't want to take the risk. Still don't. Sure, there's a small risk with any procedure, but problems are rare, and the risk of not following through with every option available to you so you can be well again is a greater risk. Find a doctor you trust to do the procedure and just do it. Isn't drinking crap and having to run to the bathroom for a few hours worth it if it could mean you didn't have to deal with that again for a long, long time? Just sayin' - because I care about you and want you well!!!
ReplyDeleteI guess I respectfully disagree. From what is laid out, I feel like right now I can rule out (albeit not 100%) some of those baddies (like Crohn's or Ulcerative Colitis) without getting that done. I want to be well too, but I do not see a colonoscopy giving me any more answers.
ReplyDeletePS I love you too!
ReplyDeleteAlso, PPS, what did your colonoscopies show? I had no idea you'd ever had them done.
ReplyDeleteYou are allowed to disagree. :-) One of my colonoscopies showed some little polyps, which they snipped off. Others showed little pockets in my colon in which foods can periodically get sidetracked and caught and then get infected or some such thing, if they sit there in the pocket too long. IBS was mentioned - nothing too serious thankfully. I am due to have another one next year - I'm on a once every five years plan because of my family history. For me, the answer to keeping inflammation at bay (I have fibromyalgia, too) is to keep my stress levels under control, which lately, has been impossible. Now my Dad - he has been fighting cryptosporidium and has had a terrible time for the last few months. He has diabetes, so it is harder for him to fight parasites. His last stool sample looked good, so hopefully he is finally past the worst of it. So - just know you are not alone. Except in the Hansen family, you don't lose weight when you have bowel problems, you get bloated and swollen up and gain weight. :-( Anyway, find a doctor you trust - a specialist if the regular ones can't give you answers, and do what they say. Part of it is trial and error, but I think we're stuck with it until Star Trek style medicine becomes reality and someone invents the scanner. Hang in there! Love and hugs, Sherrie
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