Changing things up a bit…

If you’re reading this, you’ve probably already noticed that the name of my blog is “assume the position.”

If you have inflammatory bowel disease, you can probably accurately guess what I mean. If you’re still scratching your head, it’s totally understandable. How else would you know?

When you’re chronically ill, your life takes unexpected turns and suddenly the embarrassing becomes the norm. For example: rectal exams. Every time I end up in the emergency room and I tell the doctors I’m having GI bleeding of any kind, they want to do a rectal exam.

If you’ve never had a rectal exam, let me illustrate the situation you’re put in as a patient.

If the doctor performing the exam is an ER resident/attending, you can be fairly certain that they will be gentle – well, as gentle as it can be when a grown man’s finger is in your rectum. When a surgery resident/attending is performing the exam, you can expect to be in more pain than usual. Non-surgery residents are mainly double-checking that the red that is in the toilet is in fact blood. They put on a glove, completely cover their pointer finger with rectal jelly and they gently put their finger inside your rectum. They might twist their finger once and then pull it out. The exam is done. They take the finger they used and wipe it on a special piece of paper that will change color when it comes in contact with blood. Surgical residents are brutal. In my case, they aren’t just checking for blood; they are feeling around my J-pouch for any deformities that could be causing the bleeding.

Either way, the protocol is the same. You are given a sheet to cover up with and are instructed to remove any bottoms you are wearing. You are told to lay on your side with your knees tucked up toward your chest. While I understand why they do it this way, it doesn’t make it any less mortifying.

When I created my blog a few years ago, I distinctly remember being fed up with rectal exams. “assume the position” was in reference to how your positioned during the oh-so-common rectal exam.

As my story started to drift from disease to surgery, it took on a slightly different meaning. I had read the dictations from my surgeries and the amount of positions I was put in on the table were comical. One of them was exactly what I put on my first banner for my blog:

The name makes a bit more sense now that you can see the old banner.

Unfortunately, there are vague and unintentional dirty meanings that a lot of people seem to think my blog stands for. (I can see the exact search terms that have lead viewers to my blog and some of them are just plain disturbing.)

At first, my blog was mostly about inflammatory bowel disease, but I think it’s more important that it’s just about my life as a young person with a chronic illness. It connects me to other people and having this online family that can relate makes a world of difference.

For this reason, I am changing my blog up a bit — including the name. It shouldn’t be too different in terms of navigation, but I think it’s necessary so that I can convey the right message.

Thank you so much for hanging around these past few years. Having my blog has given me my sanity back and your comments have turned terrible days into great ones.

The next time I post, my blog will be different. I couldn’t be more excited!

-Liesl

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

I’m not quite sure what to call this.

Hi everyone,

Things have been…… interesting. I’ll go in chronological order.

Remember my last post about the blood clot and going to the emergency room? Well I was told to go again on the next day because the Xarelto was causing GI bleeding and I was admitted for the week. Yep. I spent Christmas on the surgical floor of the hospital. To be honest, it was actually pretty nice. My family came up to my hospital room with baskets full of presents and I just hung out in bed all day and had a few visitors later in the day.

This was probably one of my most frustrating hospital stays and I haven’t been poked by so many needles since my first stay in the hospital nearly 4 years ago. They were checking two different blood levels, one every 6 hours and the other every 4 hours. By this point, I also had two IVs and no one would draw blood from either of them. I understand that the phlebotomists couldn’t touch my IV but the nurses wouldn’t either. I’m not even sure why I had a second IV to begin with. I had a working one in my left arm and when they came in to start a second one, I began to protest. The first two tries for my 2nd IV failed ( – one of which was in a vein by my bicep. I fought so hard to not have them stick me there and they pretty much told me I didn’t have a choice and that they had to try. It was miserable.) When they finally got my 2nd IV started, the nurse basically had to yell at me to get my attention to tell me that the IV was good because I was so upset about the others.

Not a great time.

From the 20th to the 21st (the day I was admitted), my hemoglobin had gone down a few points which was pretty substantial. It was also extremely frustrating because my doctors have worked so hard to get my blood levels to where they should be. They had me stop taking the Xarelto and put me on Lovenox which is an injection I have to do every 12 hours.

Right now, I am pretty skeptical of this whole blood clot thing. I know I have one in my left common ileac vein (which I think would classify this as deep vein thrombosis?) but no one has checked to see if I have any others. All we know is that it hasn’t reached my chest. I don’t know how all of this works either. They keep talking about it breaking loose and that the goal is to make it disappear with blood thinners and not to break it loose. I am afraid to move around too much for fear that I will cause it to move and when I start to feel funny in any way, I smile to make sure there isn’t a blood clot in my brain and that I’m not having a stroke. My poor boyfriend is scared something is going to happen to me and just in case, he knows how to administer my injections.

I’m not big on needles. I have been getting over it since I have to inject myself twice a day but now my concern is the bruises. My legs are covered in bruises from these injections. Everyone keeps telling me to do them in my stomach but because of my laparotomy, the nerves are wonky. It hurts more than it should just to pinch an area to inject – therefore, I just do my legs. I had to perfect this before I could leave the hospital and I ended up leaving that Friday – which worked out perfectly because my trip to Las Vegas was on Monday.

On December 29th, my 21st birthday, my boyfriend and I drove to the airport for the night flight to Las Vegas! I have been once before but Dave had never been and we had an absolute blast! I can now order drinks and gamble a little so of course, I drank root beer and played penny slots. I had a couple alcoholic drinks with Bacardi mango fusion and learned that I actually like rum! On the last day, Dave and I had time to kill between checking out of the resort and the shuttle picking us up for the airport so I sat down at a slot machine. The day before, I lost $15 in less than 5 minutes and although I was laughing so hard, I learned that slots aren’t for me. But I was bored and this was a penny slot so I figured ‘what the hell’ and put in a few dollars. After $3 I had a chance to win a jackpot! It was a complicated process on the Dungeons  & Dragons slot but in the end, I won just over $105! It was definitely a nice way to end our trip.

We were able to do quite a bit while we were in Vegas! We rode on the High Roller ferris wheel (which was 550ft high – 150ft taller than the London Eye) at The Linq and we took some beautiful pictures. We were fortunate enough to know someone that works for Criss Angel so we were able to see his show at Luxor which was nothing short of amazing. We spent New Year’s Eve at Club XS at Encore with Zedd as the DJ for the night. All around, it was a really awesome trip and I can’t wait to go back.

* * * * *

On a more somber note, my grandfather passed away on my birthday. When I was in the hospital, we found out he was in a hospital across town. He had prostate cancer for nearly 3 years and was originally given 3-6 months to live. After I was able to leave the hospital, we made a couple trips up to his hospital to visit him. He was doing alright the first week but a few days after Christmas, his state deteriorated tremendously. When I first walked in to see him on the 27th, nothing prepared me for how he looked. He was struggling to breathe and was in and out of consciousness although when he was fully awake, he knew what was going on and knew who we were.

After the initial shock, we could all sort of calm down and enjoy the company of each other. What made the visit difficult was when his kids each came in to see him. My dad was one of 4 children and we got there, one of my uncles had been crying. We were the second group to get there to visit him and it was unbelievably difficult to watch my other uncle and my aunt react to seeing their father. Both of them sobbed as they held his hand which in turn made us all start to cry again. On the bright side, my grandfather was not in any pain. He was able to communicate that to us as our goal at this point was not to fight the disease and its complications but to keep him comfortable.

On the 28th, we went to visit him again and although he was still in and out of consciousness, his breathing wasn’t quite as strained. I sat by his bedside and held his hand and I’m so glad I was able to do that. As more family started to come in, I moved to the foot of the bed. In a bout of consciousness, my grandfather picked up his head and looked around the room. He saw me at the foot of his bed and when I smiled at him, he managed to grin back at me before falling asleep again. I will always remember that.

Later that night (about 1:30am on the 29th), I was still awake downstairs at home. My dad woke up to a phone call from my aunt. He got out of bed and gave me a hug and told me that my grandpa had died. I’m thankful that my grandmother was able to be by his side and that his passing was peaceful and free of pain.

The funeral service was a celebration service and it was beautiful. Of course, I cried through the whole thing and what started it was my grandmother saying her goodbye at the end of the visitation before the service started. However, when I was walking into the sanctuary with my family, they were talking about some of the things in his casket. There was a toy tractor and a pair of coveralls in it as he was a dedicated farmer but among the funniest things were two flashlights and a cell phone. His biggest fear was being buried and not really being dead. There was a flashlight with a red blinking light in the casket so he could find it and another flashlight as a backup when the other one stopped working. The cell phone was put in so he could call my grandmother if he woke up. I could not help but laugh while I cried as I walked into the sanctuary.

At the actual burial site, he was given a 21 gun salute and my grandmother was presented with an American flag. It was beautiful tribute to my grandfather’s time serving our country.

Now, it’s just a matter of life getting back to normal. My brother was the closest to my grandfather of all of the grandchildren so this is going to be a hard adjustment for him along with the rest of my family. All you can do is keep pushing forward.

If you have a few seconds, please send good thoughts or say a prayer for my family. Things have been rough lately and we could all use a break. ♥

* * * * *

On a more goofy note, the snow here is crazy and my dog has never seen it before. He absolutely loves it!

Good night guys!

Liesl

There’s a first time for everything.

Hey everyone! I know I promised an update on my health and the goal was to send out one sooner than, well, right now. But, as always, there were a couple speed bumps.

On the 24th, I had a chat with my surgeon. Coincidentally, my cousin works in his office so after a few text messages, I had an appointment set up for later that day. I’ve been bleeding. Every time I went to the bathroom, there was blood. I had a vein cauterized and a few more stitches put in on the 18th and the bleeding had stopped. However, it picked right back up. We talked for a few minutes before he decided to schedule me for another exam under anesthesia.

This exam was scheduled on the next day (the 25th) and he cauterized just about everything.

After this procedure, I felt so much better. I wasn’t on any pain medication and there wasn’t any bleeding – that is, until Monday.

Monday was already an off day just because I had traffic court for a speeding ticket I got a while back. I stood there waiting for over an hour to be called and during that time, I had to go to the bathroom. This time, there was blood – not a ton, but enough to be a little concerned. I felt alright so I tried not to think about it too much.

After spending over an hour at the courthouse, I decided I would go to Kohl’s and use a gift card that’s been burning a hole in my pocket. I wandered the store for about an hour and by the end of my shopping trip, I was starting to get insanely painful cramps in my j-pouch. I paid for my clothes and then headed straight back to the bathroom. When I sat down, I saw blood. My period was supposed to be happening in the next couple days so I figured it was that until I actually went to the bathroom. No stool, all blood and clots of blood.

This scared the shit out of me (figuratively and literally). I immediately called my cousin and asked her about it. She told me not to panic and that the water can make the blood look worse than it is. I talked to my mom too and she just told me to come home and we’ll keep an eye on it. I was only five minutes out of the parking lot before the cramps came back even worse than before.

I hurriedly parked my car in front of the garage and ran inside to the bathroom. Even more blood. I called my mom into the bathroom with me and it was all I could do to suppress the vomiting that came with seeing so much blood. I had never seen this much blood before. My mom could see me start to panic and as soon as she told me to stay calm, I started to cry. What the hell is going on???

In the next ten minutes, we were on our way to the hospital. I sent a text to my boyfriend, Dave, to let him know I was headed to the hospital and soon he was headed there too.

My vital signs weren’t too alarming in triage but they got me a room fairly quickly. My nurse started an IV and the first time I went to the bathroom, they had me use a toilet hat. There was 10oz of blood. I walked back to my room and my mom and Dave were sitting there. I started to panic because I was losing so much blood and I didn’t know what would be done to fix it. My tears only panicked Dave even further. (We have been dating for a month and obviously, this isn’t something that most people are used to. Bless his heart – he’s been taking it in stride. This is the third time he’s been at the hospital with me.) A couple hours in, there wasn’t too much excitement and I knew I would most likely be admitted so I let him go home.

After having a bolus and already having bothered my nurse a few times for miscellaneous things, I decided I would just get up and go to the bathroom. I was locked off from my IV and I unhooked myself from the leads that were stuck to my chest. I went to the bathroom and there were a ton of blood clots followed my another round of blood that seemed to pour from my body. I stood up, washed my hands, and as I opened the door, the nurses at the desk saw me. “How are you doing?” they asked. As soon as I opened my mouth, I could feel it. My vision was going black and my hearing was starting to fade. “Actually, I feel like I might pass out,” was all I said before they jumped up from where they were sitting. By this point, my vision was mostly gone but I could feel them carrying/dragging me to my room.

I’m so glad my boyfriend had left by this point so he didn’t have to see them carry me to my bed, nurses all around me, hooking me up to various machines, and oxygen on my face. My mom said she felt like a bad mother because she was almost laughing. By the time I was lying in my bed with my feet higher than my head, I was laughing too. It was fairly comical although it would probably look fairly traumatic to someone else. I also earned a bright yellow “FALL RISK” bracelet. I wasn’t allowed to get up without a nurse anymore.

In the meantime, I was texting my surgeon. He gave me his cell phone number earlier that day once he learned I was bleeding. He told me he was okay with me going home and just keeping him updated on how I was doing but I felt better staying at the hospital. I was admitted that night.

Blood draws were ordered every six hours to keep tabs on my hemoglobin and hematocrit levels. Overnight, my hemoglobin went from 11.9 to 7.8. On Tuesday morning, I was signing consent forms for a transfusion. Four actually. But it takes a while to infuse a unit of blood so they only had two out for me at the moment. After those two, they would check my levels again to determine if I needed more blood.

This was a first for me. I had never had a transfusion even when I was originally sick in the hospital with my large intestine. I was a bit nervous, but everything went totally fine.

During the second transfusion, Dave came up to see me. I’m really glad he isn’t squeamish because there was a bag of blood hanging on my IV pole. He’s always very nervous about hurting me since my surgeries and coming into the room with me in a hospital bed and an IV line full of blood in my arm didn’t really ease his worries. After a bit of convincing Dave that he wasn’t going to hurt me, I got him to sit on my hospital bed with me. He read a chapter of his book while I watched an episode of Breaking Bad on Netflix. He was super sweet and stayed with me for about four hours.

I’m one lucky girl. 

(My hemoglobin level was 10 shortly after my second transfusion and several hours later it was at 9.5.)

I spent that night in the hospital also. I was woken up at 4am for a blood draw and the nurse told me around 7am that my level was 9.6. It was pretty stable so when the resident came in that morning, he talked about discharging me from the hospital.

More than anything, I was trying to understand what happened. None of the doctors outside of the emergency room seemed to be taking me seriously.

“Well what probably happened is that the first blood test was falsely high,” he started. “Your hemoglobin was most likely around 9 instead of being 11.9.”

This confused me. Why would my levels have been falsely high? It’s not crazy to believe my levels were healthy to begin with considering I hadn’t really been bleeding until the day they drew my blood in the first place. I said something about this to him and he blamed dehydration – which I wasn’t really dehydrated if he had looked at any of my vital signs or test results from when I came into the ER.

I really wasn’t trying to be an asshole by questioning him, but I wanted to understand what was going on and the resident wasn’t making a lot of sense. Not to mention, my hemoglobin had been checked a few times last week already and it was always around 11. He just insisted that it’s unlikely that my levels would have dropped four points overnight.

“I’m sorry, I just don’t understand why it would be wrong. I lost a lot of blood. It’s not unreasonable that my levels dropped the way they did.”

His response? “There is really no point in arguing about this. Do you have any other questions?”

From that point, I was done. I didn’t have any other questions; I just wanted his arrogant ass out of my room.

He hadn’t been there the entire time I had been in the hospital. He never showed up until that morning. He didn’t see how much blood I lost. He didn’t care to look at any of my vital signs. He didn’t care about what I had to say even though he knows my history and even though he knows that I know my own body. He is one of those that has a God complex: i.e. He is the doctor and there is no point in arguing with him because he knows all.

After he left, I immediately burst into tears out of frustration. I have actually seen this guy before and he tried discharging me too soon after a surgery I had in 2012. He wanted me on oral pain medication and kept talking about sending me home even though he wouldn’t let me eat. Taking those medications on an empty stomach is a surefire way to make me sick – it always has been. But he didn’t care then and he obviously doesn’t seem to care much now.

I am not a doctor by any stretch of the means but I am not an idiot. I know my body and I am well aware of how most of this stuff works by now. When I go to the bathroom and, in one trip, there is 16oz of pure blood, that is a big deal. DO NOT downplay my situation. DO NOT come in and tell me that I “probably didn’t lose that much blood” when you don’t care to ask me about what happened or care to take any of my test results or vital signs into consideration. You do NOT know everything so get your head out of your ass and try listening to what your patients have to say about their own bodies.

Now that the hair on the back of my neck is standing up, I should probably call it a day.

Silver Linings Playbook started recording on the DVR a little bit ago so I am going to get my mind off of things by focusing less on Dr. God and more on Bradley Cooper.

Good night!

– Liesl

ps. I forgot to mention that a volunteer came in with a therapy dog yesterday! He was a standard poodle named Eli and he completely turned my day around.

My best friend also brought me Starbucks and stayed with me for a couple hours. I absolutely love her!

No breaks allowed.

Hey guys!

Sorry I haven’t written much like I thought I was going to. I had every intention, but things just get kind of busy. Lately, I have been out and about and working on homework.

I probably mentioned this last time, but I always take the wrong bus. Only the last time, I dragged my girlfriend Annie on the wrong bus with me. Well, we met this amazing guy on the bus that night. On this entire bus that was totally empty, he sat right next to us and just started talking. And he’s gorgeous. Then the bus driver told us to get off of the bus because we weren’t on the right one. Poof. This kid had just disappeared out of my life. All I could think was, I’m going to find this kid. He had mentioned that he hung out with this one girl a few weeks ago that actually went to my high school and sure enough, I found him on Facebook.

Now we hang out all the time, we are actually from the same town, and I just love this kid. He’s amazing. We’re alike in so many ways and it’s absolutely crazy. And I met him on a bus. ALL BECAUSE I TOOK THE WRONG BUS. I can’t get over that. What’s better is that when school ends, he’ll be back in the same area as me.

__________

So I had a thought the other day. When I talked to the director of housing, she had said that there are a lot of other students with similar medical situations as me that also requested private bathrooms and I was wondering just how many. Maybe I could start a support group on campus. I was also wondering about how many people on campus have autoimmune diseases and how they deal with it.

Later that day, I met with my new friend I met on the bus and we started talking about different things and he mentioned he was in the hospital. When I asked what it was for, he started talking about his kidneys and how they put him on steroids and how he’s been in remission for a long time and etc. Then it hit me: He has an autoimmune disorder too! I would never wish that on my worst enemy but I can’t believe I met the perfect guy that understands how much it sucks to take steroids and be on medications or be in the hospital. He understands and I love it.

It’s crazy how God can put certain people in your life.

__________

No breaks allowed. Nope. Not for me. I’ve been feeling pretty great lately and then in the last few weeks, I noticed my hair falling out. A lot has fallen out. I waited a little while and it didn’t slow down. Then, one day I fell asleep in my abnormal psychology class which isn’t normal for me. After my class ended at 12:50, I came back to my dorm to take a nap. I didn’t wake up until after 5pm. I never sleep like that – ever. I made myself go to dinner even though I wasn’t crazy hungry and then came back to my dorm and flopped in my bed. I didn’t mean to fall asleep and I still did! I slept for almost 16 hours throughout that day and through the night.

Clearly, something is wrong here.

Luckily, the University of Illinois has a health center that is included in your tuition. I made an appointment with the nurse practitioner and she ordered lots of blood work. Luckily, my sed-rate is in the normal range so my inflammation isn’t up. This means the Pentasa is working well.

However, my iron and hemoglobin are pretty low. The levels of hemoglobin that are normal in women is about 12-15. Mine is 9.3. So that’s fairly low. My iron levels? The saturation should be between roughly 20%-50%. Mine is at 1.5%. It’s extremely low. No wonder I’m so tired all of the time!

Somewhere, I’m losing blood. I haven’t noticed any blood loss at all and usually if my hemoglobin is that low, I can tell if there is blood in my stools. Maybe I am just not getting enough iron…. Well, today my mom took me to the hospital in Urbana and while I was there, they did an fecal occult blood test and it was definitely positive. No question about it. (The nurse practitioner at McKinley Health Center was actually in charge of me at the hospital too! That was a nice coincidence.) She said that half of the paper was blue – blue indicating that there is blood.

Great. Now what?

I have to get in touch with my GI doctor back home and hopefully he’ll have a plan. I see Dr. Khaled in Peoria, IL. He’s a pediatric GI doctor but is by far the best GI doctor I’ve seen. He’s extremely thorough and thinks of every possibility.

The only thing I’m afraid of is 6MP. It’s also called mercaptopurine and is classified as chemotherapy. I had the surgery to remove my intestine because I knew these medicines were harsh. Hopefully, I won’t have to be on it, but somehow, we have to get the bleeding under control. Maybe I’ll get lucky and he’ll do a camera pill instead of having me scheduled for a scope. I’d hate to miss school!

Right now I’m on iron supplement pills and hopefully that gets some of my energy back up. When I know more, I’ll be sure to write about it!

Until next time,

Liesl ♥