DAY 6 IN THE HOSPITAL in General Mental Anesthesia

So here’s what I know. In speaking with one of the Gastroenterologists yesterday, she went over some of my test results. I’ll begin with the good news.

They can’t find a kidney stone! I must have passed it.

I know, you’re probably thinking: “How could you not know?” Well, a couple of things:

1. I was taking an herb called ‘Chanca Piedra’ translated it means “stone breaker”. It’s one of the things that helped save Inspector Noodles life in dealing with his stones and bladder sand. Whether that had an effect or not, I can’t say, but I was taking 3/day.

2. Yes! I had some extremely painful urinations where I screamed out in pain, but understand, that most times I was peeing sitting down because I was so severely sick with colitis 20 - 25x/day and being sick, so with all the blood / diarrhea, moaning and additional pain / cramping etc… I could never ‘see’ if I passed a stone or not.

Other tests I’ve had do reveal the gallstones however, but they say I’m not yet a candidate for surgery. That said, the inflammation I have at the moment would prevent them from doing surgery even if I needed it right now.

So speaking of inflammation:

I’ve heard this from Dr’s treating me dozens of times over the past 25+ years and heard it again from this GI Dr. Yesterday. She did say that I’m by far the worst case of ulcerative colitis that she’s ever seen.

She was by my bedside and said: “Typically, when we have to hospitalize a patient for Uc, their inflammation is like this (and she held her hands apart by about a foot) and you’re like this (she then walked all the way over to the back wall).

She said: ” Honestly, I don’t know how you survived at home. This kind of inflammation, this severe would kill most people especially if they are not being treated and even if it didn’t, your heart would stop from how much pain you were surely in. I know you said you have a very high tolerance for pain, but you couldn’t have lasted much longer, It’s a very good thing you were seen.

Now, when I was home, I knew I was dying (you can just feel it). I don’t know if I had a few days or a week, but I did know that if I wasn’t hospitalized soon that I was in trouble, so despite how I currently feel, I’m glad I’m here.

They made no mention about untwisting or unkinking whatever is going on in my large intestine, and it can be fatal, in fact one of the Bee Gee’s recently died because of the acne thing, but she did reveal why they wanted to do the full scope all the way to my small intestine. They are theorizing that not only do I have Ulcerative Colitis, but I may also have Crohn’s disease as well. :(

This is not confirmed because they couldn’t get the scope near where they needed to without perferating the colon. There is one other way to test for it, but this place is not equipped to do it. So I have to wait for the inflammation to go down in order to have yet another full scope colonoscopy outpatient (which costs an average of $3081 if you’re not insured).

They are really shoving surgery down my throat, but they would have to take out my entire large intestine. The surgery has a 50% chance of success and an 80% of life threatening complications. Not to mention, ‘if’ I have Crohn’s… The whole thing is moot anyway.

I actually just got done speaking with a surgeon, a very nice guy. He actually at this point isn’t recommending surgery (partly because of the severity of the inflammation) and because nothing has ruptured, there’s still a chance that steroids and possible biologics can treat me. He even said that the surgery is very dangerous with life threatening complications and if it’s needed it’s needed, but if it can be avoided, that is best. He was a nice guy though, attentive and listened to me. I really appreciated him coming by and educating me.

Besides, I know (am friends with) dozens of IBD, UC & CROHN’S sufferers and most of them have had surgeries, some have had multiple surgeries. 99% of them continue to suffer as I am. They still need biologics like humira or chemo like remicade (at $14k/mo for those without insurance) and most of them are currently suffering just as much as I am if not worse. One instagram friend who has Uc has been in the hospital now over 7 WEEKS!!! She’s hooked up to feeding tubes, they have to drain her stomach and pull out abscess fluid etc… And she hasn’t had a colon in years. Surgery is a ridiculous failure in most cases.

No one knows what causes colitis, but at any point in time new areas can become diseased, the same with Crohn’s.

What does all of this mean for me?

It means that seeing Dr. Mackey (my homeoppathist in Florida who saved my life) from Uc in 1998 is all that much more important. If I am to survive this… It will be because of her.

I don’t like posting this, I’ve said that 1000x, but prayer certainly isn’t going to heal me, it’s nice and all, thoughtful, and I honestly do appreciate it, but I’ve only been getting worse and my body needs physical treatment by a health professional, but that can only happen now through donations and shares of my gofundme page set up by my amazing friend Terri several months ago. So if you really, truly wish to help please substitute a prayer for a share!

PLEASE HELP MY GO FUND ME PAGE

Gastroenterology visits are $319, meds are expensive and outpatient procedures are even more expensive. The reality is that I need way more that what is being asked for which is just the amount I need to see Dr. Mackey.

I can barely move and sometimes I can’t even get to the bathroom in time. I haven’t been able to work since June 2016 (though I desperately wish I could) and I’ve lost my home, my car and almost all of my belongings because of my health lately. So anything you guys can do by asking others to share and helping me share the page to other charity FB groups or crowdfunding groups etc… Could really go a long way.

Really anything. I’ve been exhausting other options and friends have been trying to find new resources to help me, but most I’ve talked with over the years to no actual help.

I’ll probably be in the hospital a few more days as far as I know barring any complications. They upped the Prednisone to try and combat the inflammation. At the moment, it’s the only course of action.

As always, thank you to everyone whose helped and tried helping in various ways and for the support I’ve received. I don’t feel worthy of it, but you guys inspire me to continue to fight (as difficult and trying as it is). And for that, I’m eternally greatful.

Thank you.