A New Direction…

Hey everyone!

It’s been over two months since I have written anything and I apologize. Things have been hectic and every time I think I want to write, I end up deciding on something else to do.

Currently, I am sitting outside Starbucks with my iced tea hoping to maybe get a little bit of a tan as I am writing.

A few things have happened since I’ve last written. Mentally, I am in a better place. Much better. I still have my issues but since being home from school, I seem to be dealing with them better. However, I have a couple new things added to my plate right now.

First, let me start by saying that I finally met up with the dean of my college and he withdrew me for the last semester and dropped my courses. But there is a condition and that is that I am not to return to the university this Fall. Another large factor in this agreement is that my doctors are to clear me and deem me well enough to attend school when I am ready to return.

Since my last post, I’ve had a few doctor appointments and my health seems to be taking a new direction; not necessarily a better direction, but hopefully I will have more answers soon.

After my emergency surgery, I had an appointment with a physician’s assistant at my gastroenterologist’s office. My last appointment at his office did NOT go well. I was in a lot of pain and my GI doctor didn’t listen to me. He was very standoffish and told me that because my labs and scans were normal that I shouldn’t be in any pain. He didn’t write a script for any pain medication and told me that if that is what I wanted, I should go to a pain clinic. I later learned that the reason I was in pain at all was because the volvulus (internal hernia) was starting to form. Needless to say, I was not looking forward to going back to the office.

(I genuinely believe that my primary care doctor saved my life. When the blood supply gets cut off, like any other organ, your intestine will start to shut down and turn necrotic. This can kill a person. I owe my doctor everything. I would probably have another ileostomy and my J-pouch would have literally died had it not been for him.)

Meeting with the PA completely changed my perspective. He took the time to listen to me and get to know me like I was a new patient because I was new to him even though he isn’t my gastroenterologist. After spending 15 minutes with me, he went ahead and told most of the staff that they could go home because we were going to be there for a while and it was after hours.

When he walked in and he started assessing me, he told me he has three goals for every one of his patients: The first is to keep me out of the grave. The second, to keep my pain under control. And the third, to make my life better. When he said the last one, I immediately started crying which in turn made my mom cry too. He immediately looked concerned and started to apologize but the tears weren’t of sadness. No one has given me hope like that before and I know he genuinely means what he is saying. Somehow, he is going to get things figured out and make my life better.

For months, I’ve had random and sporadic GI bleeding that comes and goes without warning. No tests have been able to determine why. All of my autoimmune markers tested in my blood are normal; this is fantastic because it means my body isn’t attacking itself like it was when I first got sick. Biopsies are always negative for anything pathological. Blood tests are negative for Crohn’s disease. No EGD, sigmoidoscopy, camera pill study, tagged red blood cell test, CT scan, X-ray, or anything else for that matter, has been able to tell where the bleeding is coming from. The only thing they are able to find is that my bowel is irritated.

This wouldn’t bother me so much if my body could keep up with the blood loss and if it wasn’t so painful. The last episode of bleeding lasted 3 days, left me with severe pain, and caused my hemoglobin to drop to 10.6. I understand that it could be much worse but I’m getting iron infusions every two weeks because the loss of iron takes away all of my energy.

((***Side bar… If you read my blog regularly, I’d think that maybe you’d be accustomed to unpleasant and sometimes taboo health circumstances. But, if there is any chance that me mentioning my period makes you uncomfortable, you had better skip to the end.***))

After about an hour, the PA asked me a bit of a strange question… “I need you to sit here and really think about this for me: Have you ever been on your period when you are in the hospital with GI bleeding and is the pain worse around that time?” I immediately got a little defensive because I thought he was trying to determine if it was even GI bleeding. But he insisted that I think about all of the times I’ve been hospitalized since the sporadic bleeding had started.

I had never given it much thought until then but as I started to think more about it, I was surprised by how many times I had been on my period when I was in the hospital. His theory: Endometriosis.

Lord have mercy. As if having kids one day wasn’t going to be difficult enough, this is going to make it worse.

Endometriosis is a condition where the tissue that lines the inside of the uterus grows on the outside too. This extra tissue can build up and form what are called implants. It sheds every month like normal except that the implants have no where to go.

The more I’ve looked into endometriosis, the more sense it makes. The pain is always worse around my period but it isn’t just typical period pain. I’ve dealt with that for the last 8 years so I know what that is supposed to feel like. And GI bleeding almost always accompanies it. The reason (I believe) the bleeding and pain has gotten worse in the last several months is because my doctors took me off of my birth control pill, the reason being that blood clots and birth control pills are contraindicated. A treatment for endometriosis is hormone therapy like birth control pills. Since going off of it, it’s probably gotten worse.

All of this is starting to make sense. No wonder it doesn’t matter what I eat. It hurts. It causes bleeding. It could be popcorn or mashed potatoes. None of it matters. The only thing that keeps the pain in control is either not eating or pain medication. I have an appointment with a specialist a little less than a month from now so hopefully I will have more answers then.

Aside from the obvious problems associated with endometriosis, the only way to actually determine if someone has it is with a laparoscope. I’m not sure if they will do that but honestly, I don’t even care anymore. I just want to be better. I want to feel better. I want to participate in life without worrying about how far away my hospital is.

The first step so far is a sigmoidoscopy to see if they can find any signs of implants affecting my intestines. This is coming up on the 25th so wish me luck! I’m not convinced they’ll see anything from that but hopefully they’ll learn something from this scope.

Thanks for all of the continued support. It means a lot.

– Liesl