When Hope Is Scarier Than No Hope

After you graduate high school, where are you going to school? Are you going for two years or four? Do you know when you will graduate?

For most people, these questions have answers by the time we’re reaching the end of our junior year of high school. We’ve been prepped to apply for colleges and universities and will be ready to attend the college we get into only 3 months after we graduate high school. It’s a normal process and just about everyone goes through it. What could go wrong? If we just focus and work hard, why would we need a backup plan or two?

What no one considers is having a wrench thrown in that process. I’m not talking about not getting into your number one university. I’m talking about a problem you can’t even remotely control. My wrench? Illness.

I’ve talked quite a bit about my illness and how it has affected my education, but what I’m only realizing now is how it has affected my ability to plan.

When I was a junior in high school, I had to drop out in the spring because I was gone for so long, I couldn’t make up the lost time; my immune system was so suppressed that I couldn’t be around that many people. But, I was still the same Type A person I had been my entire high school career. I immediately figured out how I could graduate on time with my class. What I didn’t even think about is that my plan to graduate high school on time hinged on my disease staying in a manageable state. My graduation plan was already my Plan B. It didn’t even occur to me that I might need a Plan C or D. 

Luckily, Plan B was a success: I graduated high school with the rest of my classmates. I had my acceptance letter from the University of Illinois and I was already planning on possibly deferring my admission a semester due to surgery. Deferring wasn’t ideal, but it was already a part of my plan and it didn’t bother me. I had enough college credits already earned through high school that I could start college a semester late and still graduate in 2016 with the rest of my class.

I made it through my first semester of university with only a few health hiccups and overall, it went fairly well! I got an apartment with a roommate I met online and we signed a lease for the upcoming school year. The exact chain of events are unclear, but I know I had to drop the next spring semester because I needed another surgery for Jpouch prolapse. This is where Plan B started to slip through my fingers.

Plan B didn’t account for another major health problem. Plan B already got me through a major surgery that was supposed to permanently fix my Jpouch and keep it from prolapsing. It didn’t even occur to me that I would need another surgery for Jpouch prolapse because yet another prolapse wasn’t even on my radar.

I remember still trying to plan my university graduation date, but it would have to be in the spring of 2017 giving me some wiggle room and making it possible to graduate with my sorority pledge class. I guess you could call that Plan C. However, more health problems popped up and I needed another surgery. After Plan C, I didn’t plan a graduation date. I couldn’t do it anymore. Plan A not working out was unexpected, but Plan B wasn’t hard to make. I still hadn’t lost hope when Plan B didn’t pan out. But when Plan C, my third plan, fell apart, I couldn’t make another plan. With the failure of each plan, I was just as devastated as before – if not more so.

I have had to drop so many semesters of school that the last few years are a blur. I know what classes I have credit for and what classes I still need to take in order to get into nursing school, but I couldn’t tell you the amount of times I’ve had to drop classes because of illness. I stopped making an exact plan for a graduation date because my illness has been so unpredictable.

Fast forward to now:

I had surgery on May 23rd to revise my ileostomy because my stoma had retracted again. This time, they used permanent stitches so they are confident my stoma will stay on the outside like it should. I’m at home now recovering and the plan is to still keep my surgery date in July to remove my Jpouch and anus along with some of the anal sphincter muscles.

After this surgery in July, Jpouch prolapses won’t be a problem. Unless I have a disease flare up (which hasn’t happened in a long time), I will be okay. I shouldn’t need more surgery. At the risk of jinxing this upcoming surgery, I’m conceivably predicting that it will be my last for quite a while. This means that I can make plans for school. I know the classes I need to take and I have an application deadline for nursing school. Now, I have to do something I haven’t been able to do for a long time: plan.

For the last few years, my planning hasn’t gone past a semester of school because even the next few months of a school semester weren’t guaranteed. Now that this surgery could be my last, I can make plans. Real plans – like planning semesters (yes, plural) and graduation dates and when I can apply for jobs, etc.

I am taking my life in my own hands and doing what I need to do in order to move on and make a life of my own. I can apply to nursing school after passing the chemistry CLEP exam and could conceivably be in my dream nursing school by fall next year. I will have completed my prerequisite courses and will spend two years there and graduate with my bachelor’s degree in nursing. This is the first plan I’ve been able to make that gets me further than only one semester of school.

I should be ecstatic. But the amount of fear I feel is overwhelming. 

I have been sick for the last six and a half years of my life. It took me a little while to get used to it, but it became my new normal. As much as it devastated me and scared me, I made peace with the fact that I was sick and could only plan a semester at a time. After I heal up from my surgery in July, this won’t be the case. (Fingers crossed!)

I’m so proud of my decision to make my ileostomy permanent because it will give me my life back. But I have gotten so used to being sick that I honestly don’t know how to live the life I’ll be given back. If you’re a little confused, I understand. This sounds really strange. But think about it this way: I’ve never been a healthy adult. I’ve been sick since I was 17 years old. All of a sudden, I’m going to be a healthy 23 year old. I haven’t been able to be independent because I was a minor and then I was sick. After July, I won’t be either of those things.

Don’t get me wrong, I don’t just need to be independent – I want to be independent. I haven’t wanted anything other than independence for a long time. But I honestly don’t know how to be self-sufficient and on my own. The way I know how to live is on a day-to-day basis. If I’m lucky, I’ll get through a semester of school without having to withdraw. It sucks living this way. You can’t plan ahead for anything because you never know what your health will throw at you. But I have gotten used to it. It isn’t scary anymore; it’s my normal.

What scares me is hope. As a society, we are only really prepared for two kinds of illnesses – the ones that get better and the ones that end in death. No one prepares you for dealing with an illness that you or your loved one will have for the rest of their life. A LOT of people around me fell away after the first year of me being sick because no one understood and they all held onto the hope that I was going to get better only to be disappointed when I didn’t. I held onto hope for a while too, but I’ve learned that the only thing you can truly predict about a chronic illness is that it’s unpredictable. Everyone around me holding onto an unrealistic hope only makes me feel more alone. There is no instruction guide for how to live your life as someone that won’t truly get better. You have to make it up as you go along. This is exactly why it’s scary to plan for the future.

Does this mean that I believe there is no hope? Absolutely not. I just don’t have unrealistic expectations. For example: having my Jpouch removed should help a lot of my problems, but I’m not counting on it solving all of my problems. I’m not a pessimist. I’m more of an optimistic realist. Bringing hope back into the picture is scary, especially when I let go of it at least 4 years ago. Not to be dramatic, but I’ve had my dreams crushed so many times that I am extremely reluctant to hinge any aspirations on the sheer hope that I will get better. I want to be able to think that this will get better – that I will feel better. I just don’t know how.

Even in the face of overwhelming evidence to the contrary, I’m going to do my best to plan on getting better. I’m going to try my damnedest to plan for my future as much as I can. It’s terrifying to hope, but maybe it’s time to try it again.

The End Is The Beginning Is The End.

(Yes, I took that title from Grey’s Anatomy. I feel as though it fits the situation.)

I came to Starbucks with the intention of writing another blog post, but this one is different. It’s been a long time since I’ve written and a lot has happened – as per usual.

(You might have noticed from the date on my last photo in my last post that I wasn’t able to go to Germany. My parents kept putting off the conversation about whether or not I could go until I brought it up one day. We decided April would be best. We could visit for two weeks and just relax and hopefully have some nice weather. (We had an amazing time! If you want photos from Germany, I have some on my Instagram: @lieslmariepeters))

I ended up in the hospital not long after I healed from my ileostomy surgery because my belly was so distended and I was in so much pain. They would help me get rehydrated and keep me comfortable, but that was all they “could” do. Their explanation was that I have permanently dilated loops of bowel. What if they seem permanently dilated because I am always having a problem when you take films? I KNEW something more was going on. There had to be. It isn’t normal to have to put catheters in your stoma in order for fluid to drain. This happened at least 3 times that January.

One morning, I woke up at home in my own bed and I went downstairs to empty my bag and I decided to change it. When I looked down, I didn’t see my stoma. It was gone – and I mean GONE, gone. There was a hole going into my belly and that was all I could see. It wasn’t long before I was having problems with distention and pain so we went to the hospital AGAIN. The surgical residents came into my ER room and looked at my stoma – or lack thereof – and said, “Yeah, it looks a little retracted.” Are you kidding me? It’s GONE. 

The doctors admitted me for the night to keep me comfortable and told me that my ostomy nurse, Bev, would come up to my room in the morning with the residents so they could get a good look at my belly. I was nervous to see what it looked like and to the residents’ surprise (I wasn’t surprised in the slightest), this is what they saw:

FullSizeRender (6)

There was literally just a hole. After peering down at my stomach, the resident says, “We’ll talk to Dr. Tsoraides to see if we can do anything.” “If.” IF? Lord have mercy. The other interesting part is that Bev tried to stick her pinky finger in it and she couldn’t. She pushed a little and it was incredibly painful. Bev said that in her 25+ years as an ostomy nurse, she’s never seen one so stenosed – meaning really narrow.

It all started to make sense. The stenosis is what was causing me so much pain and swelling and discomfort. It was too narrow for food to pass through. My stoma retracting to the degree that it did is still a mystery, but it made the doctors have to fix it.

The next morning, Dr. Tsoraides came in my room and he wanted to see my belly. There was maybe 10ml of fluid in my ostomy bag with the catheter and he says, “Oh, it’s working a little bit,” to which I said, “Seriously?” He replied, “Yeah, I know it’s not working. We’re getting you on the OR schedule this afternoon.”

Surgery went very well and they double-stitched around my stoma to keep it from retracting again. I had a bit more pain with all of the stitches, but it was worth it. To be clear, I still have my Jpouch; it is merely stapled off so it isn’t in use.

Fast forward to two weeks later: I’m at the University of Chicago Hospital for consults. I saw a GI doctor and a colorectal surgeon and both of them urged me to make my ileostomy permanent. “[My] Jpouch is a lost cause.”

This was on Valentine’s Day and now that it is May 2nd, I’ve had time to sit with the decision…

I am making my ileostomy permanent.

I have to. I don’t want to. But it needs to be done. I’ve had 12 major operations and at least 9 of them are related to my Jpouch. If I ever want to move on from being sick and having to drop classes because I need surgery every semester, I need to get rid of my Jpouch.

I was on the fence about all of this until I was in Germany. My favorite spot in the world (that I’ve found thus far) is in the Alps in a village called Oberammergau. This village lies in the valley of the mountains. I hike up this certain trail every day and listen to the stream of mountain water running by the path in the woods. I often wander into the grass and climb a little higher until I’m happy with my view. All I can hear are the stream and my thoughts.

I never would have been able to climb up here with my Jpouch. I don’t feel any urgency to go to the bathroom. I’m not in pain. I have had the time of my life here and not once have I taken any pain medication. Why would I want to go back to pain and urgency when I initially had surgery to get rid of those feelings anyway?

As soon as we got home, I called to make an appointment for a surgery consult.

Sitting here in Starbucks, I first read over my last post to see where I had left off in “my story” as I usually do. But this feels different. I can feel my heart pounding. I have another surgery scheduled and thinking about it is making me bite the inside of my cheek so I don’t cry in the middle of Starbucks.

Yesterday was my surgery consult and he went into details about the surgery. For the first time since I was 17, I was terrified.

“This surgery will be rough.”
“The recovery period is going to be longer than normal and more painful.”
“We will remove the anal sphincter muscles and the lining……”

I tried to listen to all of the details, but I started to freeze. This surgery is a big deal and it is 100% permanent. I never knew all of the details until yesterday. I bit the inside of my cheek like I always do and thankfully, I kept it together. But as I’m sitting here in Starbucks, I’m trying not to panic.

This reminds me of the day I was first sick and I met my pediatric surgeon. She talked to my mom about removing my large intestine and I froze. I was terrified and I just cried and cried and thought “There is no way that this is my life.” But it was. I didn’t want to have to remove it. But for my own sake, I had to. It was inevitable.

The situation I’m in now is exactly the same. This will be my 13th major operation and for the first time in a long time, I don’t know what to expect at all. I’m doing my best not to overthink everything too much because, either way, I need this surgery. I want to move on with my life.

Since having my new stoma, life has been pretty good. I haven’t been on pain medication in a while and I haven’t been to the ER. I have to do this. In a way, it’s the beginning of my life and the end of my old one. I can finally move on. I’m just praying to whatever god I believe in that this surgery will help most solve most of my problems.

I have to get on with my life. I want to get on with my life. If this is what I need to do, I’m going to do it. Period.

 

-Liesl

My Ileostomy Journey – Part 1

Hey Guys!

For this post, I decided to do something a little different. This post is about my ileostomy surgery and there are so many details and consequently this would be a monster of a post. Instead of that, I decided I’d share social media updates. Hopefully this will paint a more complete picture.

Here we go! (Feel free to ignore the #hashtags.)

 

Day 1 🗓 Today is the first day of Crohn's and Colitis Awareness Week! I am 2 days post-op and things have been good! My bowels have NOT been sluggish at all – and this is rare for me! I'm already in love with my ileostomy and the doctors and nurses have taken really good care of me. Yesterday, I got in touch with my old ostomy nurse and she brought me supplies and helped me to change my one piece bag to a two piece…..but all of this has been too easy. Because the hospital provides clear ostomy bags, I can see how things are going. My reddish pink stoma is now a reddish purple color and the only thing coming out of it is blood. The surgeons have been by to see me and they made me NPO. If it doesn't improve by morning, I'll most likely be having surgery to revise it. Every time things are going well, we have to plummet downhill at least once. I'll keep you all updated 🙂 . . . . #spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #depression #anxiety #jpouch #ileostomy #surgery #jpouch #ostomy

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#ibd #crohns #colitis #ccfa #invisibleillnessawareness #iauibd365 #ostomy

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Days 2 & 3 🗓 Since my previous post, my stoma hasn't improved much. It's a bit more red than purple – which is good! But what the problem seems to be is likely a seroma (a collection of fluid and blood) that is making my ileostomy bag red. The residents checked in on me yesterday a few times and at one point, Dr. Canady said to have my nurse page them when I needed an NG tube put in. Not "if," but "when." It wasn't 20 minutes later that I started vomiting like crazy. My nurse got the order to place the NG tube and I had made a deal with the residents that I'd get one if it got to be pediatric so that way it was smaller. We got that placed, and it wasn't long that I was throwing up again. With this NG tube being so little, it actually worked its way out of my esophagus. I had to have another one placed – a bigger one. I have vomited a few times with it, but I make sure to keep swallowing so that it stays in my esophagus. The larger tube is also able to suction more. I'll keep you guys posted! . . . . #spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #jpouch #ileostomy #surgery #ileostomy #ileus #ngtube

A post shared by Liesl Marie Peters (@lieslmariepeters) on

Just got moved to a private room! Woot!!

A post shared by Elke Peters (@elkepeters) on

#ostomy #iauibd365 #invisibleillnessawareness #ccfa #colitis #ulcerativecolitis #ibdweek #ibd

A post shared by Elke Peters (@elkepeters) on

At least I have a cot to sleep on. Much better than the chair.

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Just brought in her white bag of "food". Hoping it gives her some more energy.

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Just got her next bag of TPN, port access change, and pain medicine.

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(Update post 1 of 2) Hey everyone! I've been doing a terrible job at updating everyone. I had surgery last week to get a temporary ileostomy. If it makes me feel better, I'll have my Jpouch removed. If it doesn't help, I'll go back to figuring things out with my Jpouch again. If I'm being totally honest, things have been pretty miserable since the surgery. I don't mind having the ostomy at all; I'm actually happy about it! Unfortunately, I have ileus which is where your bowels stop moving (typically after bowel surgeries). I had to get an NG tube because I couldn't stop vomiting. I am thankful they used a pediatric tube so I'd be more comfortable, but the next time I got sick with the NG tube, it came up as well. I actually had to pull the rest of the tube out. So I have a slightly larger tube in, but for the last week, I still vomit on top of what is already being suctioned out of my stomach. After a week without any nutrition, I started to get really weak. Walking more than two laps on the surgical floor got to be nearly impossible, so my doctors decided to put me on TPN. The problem with receiving TPN is that it's meant for central line use. On top of having my port accessed, I needed an IV…. #spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #depression #anxiety #bipolardisorder #jpouch #ileostomy #surgery #ostomy #TPN #NGtube

A post shared by Liesl Marie Peters (@lieslmariepeters) on

Look who came to visit! ❤️

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She didn't want to sit on the bed. ❤️

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(Update post 2 of 2) My veins are absolutely shot and getting a functional IV was going to be difficult, so the crisis nurse came in to do it. I was pleasantly surprised by how little it took to get this IV working. It was in the bend of my left arm and now that I had one, I could start TPN through my port and get the rest of my meds through the IV. I had forgotten how much certain medications hurt when going in until I had this IV – like Benadryl and Norflex. The IV was annoying, but started out great. About two days after getting it, I rubbed my fingertips over the site. It was so sore and swollen. I requested to have the IV removed and to go off of TPN so I didn't have to worry about it, but that wasn't an option. The only.really other viable option was to have another kind of line. As soon as my nurse called about getting a picc line for me, the team came up and got set up to put one in my arm. Unfortabtely, since I've had two picc lines in that same arm, it took them 3 tries in a little over an hour to get it. Luckily, it's been working perfectly. 🎉😁 I think we might have even reached a turning point yesterday! Still a lot of information though so I'll probably post about it later on today when I know more. Thank you all so much for all of the support and love you've shown me and my family over the last 12 days. It means a lot! I still have the picc line and the NG tube right now, but we're thinking it won't be much longer until I get to go home! #fingerscrossed 🍀😅. . . . . #spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #depression #anxiety #bipolardisorder #jpouch #ileostomy #surgery #ostomy #NGtube #piccline

A post shared by Liesl Marie Peters (@lieslmariepeters) on

Some of the gifts Liesl's received. Definitely cheers you up and makes the room less dreary.

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Some of the gifts Liesl's received. Definitely cheers you up and makes the room less dreary.

A post shared by Elke Peters (@elkepeters) on

❤️

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Finally got the NG tube out and is on a clear liquid diet. Here's hoping she keeps making progress!!

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I was upgraded to a full liquid diet today 😅🎉 and I just ordered dinner – which mainly consists of juice and pudding. But I'll take it! I'm doing pretty well overall, but still trying to get rid of the rest of this ileus. Everything will be fine and then all of a sudden, I'll get this terrible cramping underneath my ribs until my ostomy starts working like crazy. Yesterdday my ostomy put out 3+ liters so our biggest concern right now is keeping my hydrated. Fingers crossed! . . . . #spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #depression #anxiety #bipolardisorder #jpouch #ileostomy #surgery #jpouch #ostomy #awestomy

A post shared by Liesl Marie Peters (@lieslmariepeters) on

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🏥 Going home today! 😁🎉🎊 It's been a long 19 days 🗓 but I'm finally well enough to go home! I'm so thankful to have my family around me to help me as I adjust (again) to having an ileostomy, but I'm still a little nervous leaving the hospital and all of the help they've been able to offer me too. I can't wait to sleep in my own bed tonight! Now it's just a matter of building my strength back up so I can hike my favorite mountain in my great grandfather's hometown in Germany this upcoming January. Wish me luck! 🍀 . . . . #spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #depression #anxiety #bipolardisorder #jpouch #ileostomy #surgery #ostomy #awestomy

A post shared by Liesl Marie Peters (@lieslmariepeters) on

Waiting for Liesl….

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Look who is home resting! 19 days in hospital…FINALLY HOME

A post shared by Elke Peters (@elkepeters) on

 

There ya have it!

I’m still healing and trying to work back up to the strength I had before surgery and trying to add some variety to my diet. Things haven’t been too bad though. I’ll post a current photo of me below – it was just last night!

Thanks for putting up with the massive gaps of time between my blog posts. I hope to be writing more soon!

– Liesl

 

4 seems to be the magic number.

Hey everyone!

It’s been a very long time since I’ve written – about 4 months. As always, a lot has happened. Probably the largest event was the creation of Pokémon Go!

I kid. I will admit I’m a little addicted…but that’s beside the point.

The largest “speed bump” (as my mom calls them) I’ve had in a while happened in September: my Jpouch prolapsed. Again. For the fourth time. So naturally, that meant having another surgery.

So why does this keep happening? One prolapse is rare… but FOUR? A large part of the problem is that my body doesn’t form adhesions like most people do. Usually adhesions are a bad thing, but in my case, I need them to keep my intestines in place. 

 

When Dr. Tsoraides walked into the exam/consultation room, he just sat down and sighed. We went over a few options. We could do the accordion procedure, but we were both worried that eventually I wouldn’t have much Jpouch left. An ileostomy was brought up but we both decided that I wasn’t quite there yet. The other option was mesh. This way, my pouch would be suspended and it would (hopefully) stay where it’s supposed to; we decided to go this route.

* * * * * * *

Walking into the hospital for surgery has become almost routine. I check in at admitting and then go to the lab for my millionth pregnancy test. From there, they send me up to a waiting room for pre-op. When my name gets called, they initially won’t let my mom come back with me. I know I’m going to be 23 years old, but pre-op lasts more than 2 hours and it’s comforting to have my mom there. They finally agreed to let me have her back with me.

In pre-op, you see a lot of people. There is the nurse checking you in while you get comfortable on the gurney and rounds of doctors and nurses stop in. Typically, the nurses start an IV, but I have a port. I told them I wanted to use my port and she said she’d have to talk to anesthesiology. Of course, they said no. I was given the opportunity to speak with anesthesiology and he kept insisting I needed an IV. I started to panic. Involuntary panic started to sink in. The last time I had an IV, it took 7 sticks. Against my will, there were tears streaming down my face. However, I think it may have worked to my advantage the anesthesiologist was willing to bargain with me: the nurses could access my port in pre-op and they would use it to put me under anesthesia. Once I was under, the anesthesiologist could start a large-bore IV.

After nearly 3 hours in pre-op, the nurse anesthetist came to tell me who she was – although we have met a few times before and we both remember each other- and to take me to surgery. I had to give up my glasses, but I got a blurry glimpse of the operating room before they put me under. I was having robotic surgery and the Da Vinci robot was one of the coolest bits of technology I’ve seen.

Surgery only took a couple hours and when I was fully aware and awake in my room, I was immediately started on a low-fiber diet. I thought this was odd; usually I’m on clear liquids first. The doctors were waiting for me to go to the bathroom. I wasn’t exactly hungry, but I tried to eat so I could just go to the bathroom. Sadly, it only made my abdomen swell up.

(My timing on these events is a little fuzzy, but I remember most of it.)

It wasn’t long before I was vomiting. It was constant and the volume was nearly liters at a time. My dad and Jackie were running back and forth with eme-bags because it was happening so quickly. I could barely catch my breath. A resident came to my room to talk to me, and he suggested I get an NG tube. I did NOT want one, but I knew it was the best option and I did it.

Now, this is where I get a little fuzzy on the details… I started to get a temperature. It was 99°, but it wasn’t two hours later that it climbed up to 103°. At this point, I had been moved to an intermediate floor to make sure I was getting more attentive care and I was covered in ice packs and wet cloths to bring my temp down.

The doctors weren’t sure where exactly this was all coming from, so they did another X-ray. It showed I had an obstruction which explained the vomiting, but they saw something on my right lung. I was taken to CT and as soon as I got back on my gurney, they were moving me to the ICU. I had aspirated vomit when I was sick the day before and it caused pneumonia.

Because my temperature was so high, I was delirious (so I’ve been told). I don’t remember much about the ICU, but I was immediately started on a ton of strong IV antibiotics. After about 24 hours, my temperature started to lower a bit and I was able to go back to the intermediate floor. I spent another couple of days there and when the NG output was minimal, I was able to have the tube removed and I could finally have water.

After the “scary” part was over, they moved me to a single room on the surgical floor. The nurses there are better equipped to handle surgical complications and this is where I stayed for the remainder of my hospital stay. Overall, I was in the hospital ten days.

It was definitely the craziest hospital stay I’ve ever had, but I’m doing much better now. I have more thoughts on everything, but we’re nearing 1000 words and I don’t want to make you read a novel.

As always, thank you so much for your continued support. It means a lot to my family and I. ♥

– Liesl

 

I am not damaged – and neither are you.

* * * TRIGGER WARNING * * *

This post is extremely personal and contains details of a part of my life that may trigger victims of abusive relationships.

I also want to make it clear that I don’t want my family bothered because of this post. I am happy that there are this many people that read my blog and I am overjoyed that I am able to offer some hope to others in situations like mine, but I kindly ask that any questions and comments are directed to me and not my family. Thank you.

*   *   *   *   *   *   *   *   *   *   *

I had a draft all typed out and ready to post… It was about my last relationship, but it was full of anger. There’s a saying I heard a while ago and it is extremely true:

“Holding onto anger is like drinking poison and expecting the other person to die.”
– Buddha

Posting what I had typed out would be more harmful than helpful, but telling my story is going to help me let go of that anger. Maybe this can even help the next person in a similar situation…

My last relationship was a roller coaster, but when things ended, it was amicable. When we were together, I thought I was with the man I was going to marry. When we broke up, I did a lot of crying that night. I was sad for the next few days, but I knew I’d be okay.

Fast forward to a month after we broke up… I saw this post on Facebook and at first, it was moving and I sympathized for these women. They had been terribly mistreated and no one should ever have to go through the emotional, physical and sexual battery that comes with abusive relationships. While I sympathized with these women, there were things I never understood: Why don’t these women help themselves (or others) by sharing their experiences? Why do they seem to try to protect their abusive partner? Why would they feel ashamed when it obviously isn’t their fault? Why on earth would they stay in such a harmful situation? I never understood any of these things. But by the end of this article, tears were streaming down my face.

I was one of these women.

I’ve never felt as though I had the right to say that I was in an abusive relationship – that I had been abused. Abusive relationships involve battery – sometimes physical… sometimes emotional… sometimes even sexual…

I wasn’t covered in bruises.
I hadn’t been raped.
I was consistently reassured that I was loved.

None of this sounds even remotely close to abusive…..but a lack of bruises doesn’t mean he didn’t lay a hand on you and the words he said will never leave scars that others can see.

My relationship was addicting. When things were good, they were phenomenal. No one made me feel more loved or supported. But when things were bad, they were awful.

My current boyfriend, Logan, and I were goofing around and talking the other day and he asked me, “What’s the worst date you’ve ever been on?”

My ex and I had been together a good part of the day. He had planned to take me to dinner and a movie that night and while I could tell that something was wrong, I ignored it. He was extremely quiet and looked angry as he got ready to go out, but asking him what was wrong was going to start a fight and I didn’t want to be the nagging girlfriend.

We went out to a nice local restaurant and ate pizza by candlelight. It would have been wonderful if the conversation wasn’t about the details of his college hookups. He would tell me something that made me uncomfortable and then laugh because he “liked watching me squirm.” On our way out to the car, he asked me what was wrong. At that time, I had been recently diagnosed with a mood disorder. I was put on medicine for it and I was a lot more even-keel. I told him that I had been doing really well all day and I asked him why he was pushing me. He told me that I was taking pills for being a bitch and then started chanting, “Give her more! Give her more!”

The rest of the evening wasn’t much better and neither was the rest of our relationship. I gave away pieces of myself to make our relationship work. He ridiculed everything that made me, ME – and I let him.

“I’m your biggest supporter…” was immediately followed by “…but I honestly don’t know if you can be the mother to my kids right now. I need to know that, and right now I don’t. I need to know you can be up all hours of the night and show ambition,” when he knew that being a mom is one of my biggest dreams.

Sleeping in a cot next to my hospital bed for an entire weekend turned into total absence: “I’m here if you need me for anything,” became “Liesl, you’re a very sick person, I get it. I’m going to have to get used to seeing you in the hospital, so I am… I get that you’re in a lot of pain right now, but other than trying to make me feel bad and telling me that I don’t care, what are you trying to accomplish?”

Our once endless conversations turned into chores for him because, like he explained, when something is said or done so often, it starts to lose its meaning. Because I was talkative, it lowered the value of what I had to say.

But he was a good boyfriend because he “took me out on dates, played games that he knew I liked, let me watch Netflix shows I like, and he didn’t get anything in return.” He “didn’t care about the money or the dates.” He was upset because he “couldn’t even remotely touch me anymore without me feeling violated” or making him feel as if he was doing something wrong.

What he never took into account were the amount of times he did violate me.

I have insomnia – a lot of people with chronic illness do – and I take Ambien. It helps me get a good night’s sleep, but this medication is notorious for causing anterograde amnesia; if the Ambien kicks in and you haven’t gone to sleep, chances are you won’t remember what you did that night.

When I would wake up the next day, I’d have vague memories of the night before.

Too many times, he took things too far. He tried to bargain with me so that I’d let him do certain things to me. I remember one night he stopped what he was doing only when he noticed I was crying. He wasn’t forcing me, but saying “No” wasn’t much of a deterrent for him. There were things he wanted to do that he knew could seriously hurt me and that I didn’t want to do, but he persisted.

When I brought it up to him that I noticed it always happened when I had taken my sleeping medicine, I was very calm. I wasn’t accusative; I mentioned that it might be unintentional. But when I brought it up, he got angry and blew me off.

Yet, I stayed. Because maybe it was my fault. Maybe I wasn’t clear enough when I told him I didn’t want to do that… Maybe I really do talk too much. I mean, how important could my day possibly be? Why would he want to know about my day if I didn’t accomplish anything? I don’t have much going for me at the moment. I am so lucky to have someone who puts up with all of this.

But here’s the thing:

When someone loves you – and I mean truly loves you – they respect you and they show it. It isn’t something they have to think about; it just comes naturally.

They won’t ridicule your taste in music or the clothes you wear.
They won’t tell you that your family is too much – they’ll be happy to spend time with everyone.
They won’t slap you on Valentine’s Day even if they “are just joking around.”
They won’t tell you that your mental illness invalidates your arguments.
They won’t tell you that their parents think you aren’t going anywhere in life.
– that you have no ambition.
– that you are on too many medications.
– that you’ll make a bad mother.
– that what you say doesn’t matter because you talk too f**king much.

I have a tendency to ignore red flags. I’ve known that for a while. (When something happens that should make me question the situation, I tend to put it on the back burner or ignore it.) But it wasn’t until my last boyfriend that I realized how much I “let go.” I let the chewing tobacco go because he was sweet. I let the drinking go because maybe it was my fault that he was always upset with me when he drank. When he picked on me, I let it go because maybe I was too sensitive. I let it go when he violated me and my body because he was patient with me and my illness.

For a long time, I looked at myself as damaged. I still do. Not quite as much, but I still struggle with it. It takes patience to deal with someone that has a chronic illness and I’m fully aware of that.

In my opinion, voluntarily taking on my illness says a lot about your character. But what it doesn’t do is lower my value as a person. It doesn’t make anyone I date better than me. It doesn’t make it acceptable to treat me as if I am damaged goods.

I am not damaged.
I am strong.
I continue to move forward despite my setbacks.
I am worthy of love.
I am worthy of respect.
I deserve to be cherished and loved, not abused and discounted.
I am a walking cliché – and I hate that about me, but I know that it isn’t my fault.

I might still be piecing myself back together after my last relationship – and I will be for a while – but I am still me.
I am not ruined.
I am not damaged.

I am done accepting less than I deserve. 

If you are reading this and you can empathize even a little bit, take a step back and look at the situation you’re in. Would you accept the same treatment if you were healthy? Because you are worthy too.

You deserve respect.
You deserve love.
You deserve someone who sees YOU and not the baggage you carry.
You are not ruined.
You are not damaged.

Starting over….well, sort of.

Hey everyone!

I guess this is my first post since changing up the look of my blog – how exciting! I am going to add a page or two as well. Currently, there is a page for general information about inflammatory bowel disease, but there isn’t a whole lot on it so I’m going to spruce that up a bit along with a page about myself for those of you who don’t know me.

In the meantime, some big things have been happening and it’s about time I wrote about them.

 

First, let’s talk medicine.

I think right now I’m just treading water when it comes to my health. I’ll give you the bullet points otherwise this is going to be a really long post…

•  (For those of you that remember my horror story with my last OBGYN…) I got in to see a new OB/GYN! She came recommended by my surgeon and I completely trust him with my life – and I was right to. She’s pretty awesome. The IUD I have has been causing really painful ovarian cysts, but from what we’ve discussed, it’s still my best options and the cysts won’t cause any long-term damage to my reproductive health – which is what I was really worried about. The follow-up ultrasound of my ovaries didn’t show any new cysts, but the last one they found hasn’t shrunk either. Hmm.

•  My iron infusions are down from every 2 weeks to once a month for three months followed by labs to see where my iron levels are at. Hopefully they stay up, but I’m not going to get my hopes up. My labs from my last stint in the hospital show that my hemoglobin is gradually going down. I’m not surprised; I still see blood about every other day.

•  I had an EGD and a scope of my J-pouch and the part of my intestine that was operated on in December to try to locate the source of my pain and bleeding. The good news is that the surgical site is healing well! The bad news is that there is an ulcer right next to it that is causing problems. My stomach is also pretty red and inflamed as usual.

•  I’ve been on Flagyl for nearly a month and unfortunately, it hasn’t really helped. The next step will most likely be a biologic maintenance medicine and Entocort to get things under control until the biologic kicks in. Honestly, I can’t wait. I need my belly problems to be over. I’m tired of hurting when I eat anything with more substance than clear liquids. My GI appointment is in a week or so – I will update from there.

•  I’ve been trying to get off of my main antidepressant. I went from 100mg of Zoloft daily to 75mg daily, but it isn’t going so well. I feel anxious and I get clammy. I’m pretty sure the clamminess is from withdrawing from the medicine, but I can’t tell if the anxiety is a withdrawal symptom or anxiety that isn’t being controlled with enough antidepressant.

•  I’ve also started seeing my counselor on a more frequent and regular basis. I’m set up for appointments every 3 weeks and I think it’s helping quite a bit. It’s nice to have someone that can offer a different perspective. Whether or not you think you need a counselor, you should try it some time. There isn’t any laying on a couch with a doctor asking you “how you feel about that” and writing everything down on their clipboard. It’s just an hour where we talk. (He actually talks more than I do!)

As for medical stuff, that’s about all I have. When I have more news, I’ll update!

* * *

Second, I want to get this out of the way:  I am newly single. I won’t go into detail, but things are amicable and I think we are both happier now. He was good to me in some of my darkest days. I will always remember the dedication he showed me when he stayed all night with me in the hospital and the kindness and compassion he showed me when I needed it the most. (Austin, if you are reading this, please know that I will always be grateful for everything you’ve done for me.)

* * *

Last, but certainly not least…

A good friend of mine told me about an opening in the floral department at our local HyVee. I like to be crafty so I thought it’d be a perfect fit. I filled out the application online and within the next few days, I had my first interview with the human resources manager. I really wanted this job and I was so nervous (which I’m sure it showed), but I think it went well!

However, she explained that the floral position had already been filled. She told me about other job options in the store like grocery shopping for deliveries, pushing carts, bagging groceries, etc. and my heart started to sink a little….until she mentioned an opening in the pharmacy. My face lit up right then and there, and I think she could tell. At the end of the interview, she told me that I would have a job at HyVee – she just didn’t know where I would be placed yet.

A couple of days later, I got a call back asking if I would be willing to come in for a second interview with the store director about the pharmacy job. I tried to be firm when I shook his hand and made a valiant effort to sound as confident as possible without being arrogant and while also trying to hide my anxiety. As it turns out, he was extremely laid back and the interview went very smoothly because…

 …I GOT THE JOB!

That’s right! Yours Truly has a job! 

HyVee’s company policy is for HR to train a new employee for two weeks before sending them to the department their going to be in. For the first week, I trained online to learn how to use the cash register and took classes pertaining to federal laws and regulations for the pharmacy, but it flew by!

This is officially my third week with HyVee which means that my general training is over and I’m in the pharmacy. Yesterday was my first day with them and I can genuinely say that I love my job. I’m only part-time and I don’t have too many hours, but I think I might ask for more. The time flies by when I’m in there and the atmosphere is fun. The girls I worked with yesterday were all really supportive and did their best to teach me as much as they could. It was A LOT to take in and it’s going to take me a while to get the hang of it, but I couldn’t be more thrilled.

 

IMG_2469
My first day in the Pharmacy!

Things seem to be moving in the right direction and I’m actually very happy! School is going well and work definitely keeps me busy. I finally feel like I am starting to get somewhere!

 

The Spoonie Diaries!

Hey everyone!

So here it is! I gave my blog a much needed update and I’m pretty happy with the way it turned out! The layout isn’t too different, but I’ll go ahead and fill you in on the obvious changes.

The name:  We’ve gone from “assume the position” to “The Spoonie Diaries.” Hopefully there will be no more links to my blog associated with completely inappropriate content.

Instagram:  My latest instagram updates are along the right side of the screen. Every time I upload a new photo, it will show up on this blog. Instagram is one social media site I update frequently. If you’d like more updates, follow me on Instagram. If you don’t have an Instagram account, that’s fine. If you wave the cursor over the photo on the right, the caption should appear.

Follow Button:  Okay, so this isn’t really new. But it is along the right hand side and if you’d like to be notified when I write a new blog post, go ahead and follow me. I try to write once a month so I promise not to spam your inbox with updates.

The Logo:  This logo is something I came up with on my own. It took me a few hours to get it looking how I wanted, but I think the end result isn’t too shabby. I love roses and the spoon represents chronic illness. If you’re lost, here is the original Spoon Theory post.

I worked hard on this emblem. I don’t mind if you’d like to share it, but please do not take credit for the work that I put into this.

* * *

Thank you so much for sticking around for the last 4 years! It’s been quite the journey. I’m looking forward to continuing it all – hopefully with more consistency.

– Liesl

 

 

 

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:

untitled-3.jpgThe 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

5 Years.

Sugar-coating my life is a disservice to anyone reading this, myself, and anyone out there with a chronic illness.

w

This isn’t just about me. This is about all of us.

 

5 years… 6o months… 260 weeks… 1820 days…

1 Powerport placed,
+ 7 consecutive failed IV attempts before my port was placed,
+ 2 iron infusions per month,
+ 3 months of migraines,
+ 1 more major operation,
+ 3 weeks of school missed for that major operation,
+ 6 weeks spent weaning off of fentanyl,
+ 2 ovarian cysts,
+ 1 diagnosed mood disorder,
+ ? mental breakdowns,
= 1 more year of illness.

January 24th, 2011 is the day I had my first colonoscopy and was diagnosed with ulcerative colitis. Today marks 5 years since the day that changed my life forever.

I looked over my posts from previous years and to be honest, I barely recognize the person that wrote them.

I think the “chronic” part of my illness has finally started to sink in. I always knew the meaning, but I figured there would be periods of time where I would feel good – or at least a little better. The doctors have always talked about getting me in remission, but I haven’t seen remission. When one problem seems to be solved, another arises.

For example, as soon as I typed the last sentence, I felt a stab. There is a spot in my pelvis where I’ve been having pain. Turns out, when I had my follow-up ultrasound to check on my right ovary, it’s back to normal. It’s the left one that has a cyst now.

I have written about how this has brought me closer to my faith and about how I am thankful for all of this because I’ve been changed for the better. I’ve written that I wouldn’t change anything that happened to me.

When it comes down to it, I know that I believe most of that. But to convey that to everyone else seems like a lie. Sugar-coating my life is a disservice to anyone reading this, myself, and anyone out there with a chronic illness. This disease (and chronic illness in general) is hell. Unadulterated hell.

The best way for me to describe my life is like this:

A life with chronic illness is like riding a roller coaster in the dark. My life up to January of 2011 was the slow, uphill climb to the top of the roller coaster. It was steady for 17 years. When I ended up in the hospital, I could feel the drop coming. Before I knew it, my life was flying by me and I’ve been diagnosed with an illness that will affect the rest of my life. There is always going to be another turn somewhere down the line and I will never see it coming.

But the way I see it, there are two different ways of dealing with this:

I can scream and be terrified every time I’m thrown around a turn… or accept that I’m stuck on the roller coaster until it ends and try to find the fun in being on a roller coaster at all.

I can sit here and list everything my illness has taken from me, or I can list the things it has given me. I can think about the “BFF’s” who weren’t there for me, or I can think of the overwhelming amount of people that showed their kindness and still continue to do so when I need it the most. I can get upset about the foods I can’t eat anymore, or I can be grateful that I am privileged enough for this to even be a problem. I can be pissed at whatever god I believe in for giving me the burden of living with this, or I can praise that same god for making me stronger. I can think of the days I’ve lost being in the hospital when I should have been in class, or I can appreciate what I’ve been able to learn so far from being there.

I choose to see the positive side where it’s possible. But, let’s face it, there are going to be things you can’t turn into a positive. Some things just suck.

I have a new ovarian cyst which has only added more pain.
I’m still behind in school and it’s going to be a couple more years until I’m finished.
My emotions are all over the place and I’m on antidepressants among other things.

…and it all sucks. Is this negativity? No.

It isn’t negative to accept the meaning of “chronic.” A lot of people struggle with the reality that an illness like mine isn’t something that can be cured and perceive my realism for negativity. “Negative” would be to tell you it’s changed everything in my life for the worse. “Realistic,” and dare I say “positive,” is finding comfort in the little things and accepting my life for what it is.

I’m in school and I’m still working toward being a nurse. I’m taking control of my health. I am moving forward. I’m doing the best I can.

I have my ups and downs, but I am still moving forward. It’s all a person can do.

And that’s okay.

The Carousel Never Stops Turning (Part 2)

***I had to post this because it’s too ridiculous to just keep it to myself. When I wrote my last post saying I hadn’t forgotten about you, I really hadn’t. This is a draft I started when I was in the hospital. I had just had a major operation and the pain medicine had knocked me out pretty good. Anyway….. This is what I had written:

 

hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhbIn my last blog post, I mentioned writing an update about my dating libfe, so here we go.

I’m an open book when it comes to my disease and how it has affected my relationships. Dating is already messy as a e

 

but I think I’m going to save that for another post. I’m typing in the middle of the night so this is probably going to be poorly written. Sorry. If I am going to write a post about my favorite person, I want to do be sure that I do it right. He deserves his own post, not one that’s cluttered with medical problems. But if you’re curious as to how good of a man he is, here is a picture of him spending a 3rd consecutive night on a cot next to my hospital bed:

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Yeah. It’s bad. The goal was to update everyone with what has been going on. In my last post, the major problem was the insane amount of intense migraines I was having along with mood swings. So I got an appointment with a neurologist. The resident was very thorough and I was happy I was making progress…until the attending came in. She didn’t ask me anything. She told me I was taking too many medications and that I should be evaluated for polycystic ovary syndrome (PCOS) because it can cause mood swings.

I didn’t get very far with any of that but I kept ending up in the emergency department at the hospital for abdominal pain. I told the ER doctor about the neurologist saying that there was a chance I had PCOS, so he ordered an intravaginal ultrasound to look at my ovaries. Everything checked out normally and I was sent home.

A week later, I was back. The abdominal pain was awful and one of the residents ordered another ultrasound. The tech was extremely unpleasant and unprofessional but this turned out alright because she didn’t mind telling me what she saw on the ultrasound, which they aren’t allowed to do. She said, “Yeah, last week the cyst on your right ovary wasn’t very big, but now it’s pretty bad.”

BACK UP. No one even mentioned I had a cyst in the first place. It would have been nice to know because I’m pretty sure they thought I was a crazy person for panicking when they couldn’t find anything wrong with me.

My right ovary with the cyst was 11x the size of my left ovary and I was in a lot of pain so I was admitted to the hospital under my OBGYN. While I was there, the pelvic pain was getting better, but my abdomen was swelling every time I ate anything. My OB wanted to have me discharged, but I wanted a GI consult before I left. Everything just felt wrong.

I called my GI doctor’s office to see if I could get them to help me. They couldn’t because I was under the care of someone else, but said to push for a consult. The residents fought me all day about it. The nurse was trying all day to get a hold of one of the doctors and when she did, she handed me the phone; it was my OB. She kept trying to convince me I didn’t need a consult but I stuck to my guns. Eventually she said, “Fine, I’ll call them,” and she hung up.

FINALLY. After doing this all day, I was going to get a consult. Ten minutes later, the nurse came into my room and asked me if it was alright to talk to me since I was with my family. I told her it was alright and she told me that my OB was on the phone and wanted to know who I saw for psych.

I told her and then continued slump into my hospital bed in a puddle of tears. I have never felt so disrespected and humiliated in my life. Instead of calling GI, my OB called psych so that my mental status could be evaluated.

I was desperate. My surgeon has always taken great care of me and he gave me his cell phone number awhile ago. I told him what had happened and asked for advice. He immediately responded with this:  “We can take over and talk to GI in AM. OB can sign off.”

My mom and I were crying we were so happy. Within a matter of minutes, the nurse was back in my room and told me that surgery called saying they were taking over and that I was going to be moved to the surgical floor.

The next morning, a GI doctor from the same group as mine came up to see me. He performed a sigmoidoscopy and found nothing. The only thing they could do was send me home with more painkillers…. Until two days later.

I was getting ready for bed at Austin’s (my boyfriend) house when I went to the bathroom. I didn’t notice until I went to flush the toilet that the only thing in the toilet was blood. I immediately went into panic mode and his mom heard me. She asked how much blood I was talking about so I showed her. She did her best to stay calm but I could tell she wasn’t prepared to see that amount of blood. So Austin and I were on the way to the hospital again. I texted my surgeon to let him know what happened and after I was admitted, he told me another GI doctor was coming up to see me.

In the morning, another GI doctor in the same group came in. He talked with me about what’s been going on and he said that the problem is most likely higher in my bowel. Because it was the week of Thanksgiving, it was going to be a couple days until they could do a scope, but the bleeding had slowed down a bit so it wasn’t a problem. When they did the scope on that Friday, they found something.

The staple line/anastomosis from my last ileostomy reversal was extremely ulcerated. They didn’t see it before because it was 20cm past my pouch.

I wasn’t crazy. I was right all along. I was bawling when they told me. It was confirmation that I wasn’t insane. My pain was real. It always has been. I’ve been told a million times “we couldn’t find anything to explain what’s going on.” But now there was proof of my pain.

My surgeon was able to fix it by performing a small bowel resection and while I was already in surgery, he drained the ovarian cyst as much as he could. It helped a ton! I still needed a few painkillers, but I was actually able to go to Las Vegas with Austin and his family for New Years!

Unforunately, because of all the time in the hospital, I had to take incomplete grades for my classes. I need to make them up and I’m another semester behind, but I’m still taking classes.

 

This post was a bit longer than I intended, but I wanted to be sure to update everyone on how I was doing medically.

Today is an important day and in the next couple hours, I’ll have another post – more important.

 

Thank you for being patient!

-Liesl