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

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Just got moved to a private room! Woot!!

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

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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

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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

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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.

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❤️

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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

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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

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Waiting for Liesl….

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

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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

 

I haven’t forgotten about you! I promise!

Good Evening!

I’m sorry I didn’t post by the tie I said I would but it’s been pretty hectic around here at the hospital. I’ll be sure to update when I’m in better spirits and am not so doped up with pain killers. Lots has happened though. It might end up being on two posts. I also apologize for any spelling or syntax errors. The fentanyl is making this more difficult than usual.

Thanks for sticking around!

Liesl ♥

The Carousel Never Stops Turning (Part 1)

Hey strangers!

I start every post about the same. “It’s been a long time since I’ve written.” “A lot has happened since then.” Blah blah blah. As cliché as it has become, it’s always true. My life is like riding a roller coaster in the dark. I know for sure that there are going to be sharp turns and steep hills to climb, but I will never know when they’re coming.

As I’m writing, I’m watching Grey’s Anatomy (again) and this certain quote comes to mind… The main character’s mother always said, “The carousel never stops turning.”

This little section below was after my first week in school. For some reason, I totally forgot that I had written at all and I never elaborated or posted it.

Yours Truly started school! I’m at Illinois Central College which, let’s be honest, isn’t my dream school. University of Illinois was my dream for so long, but now that I’ve actually spent a couple days at ICC, I’m LOVING IT.

My classes are so small! I have actually met my professors and they know me by name! Today, I had my developmental/child psychology class and there was only about 40 people in the class. I started a class similar to this at UIUC and my lecture was at least 200 people. I never met the professor. Come to think of it, I never met half of my professors.

Don’t get me wrong, the University of Illinois is an amazing school and the atmosphere is unbelievable. I had a great time there and I have no regrets. I only wish that I would have learned sooner that it wasn’t a good fit for me.

This school seems to focus more on education. Not that UIUC didn’t focus on education – education is HUGE. However, a large part of UIUC is the party scene and Greek life and sports and getting involved in the 1200+ campus organizations. At ICC, it is almost solely about education. I feel as though there is more accountability there. I’m not expected to get involved in a million activities. They just want me to be educated and prepared for the future.

Going to ICC feels like a new beginning. I walked by the disability office and when I went to talk to a counselor, the lady recognized me because I had walked by a few times before. I’ve never had that before! It’s so awesome to know that you are actually noticed! I don’t feel like a number, I feel like a person – and that’s how it should be.

This upcoming week will be week 9 of 16 of the semester. I’m halfway through and it has flown by faster than any other semester of school I’ve had. It still feels like I’m just starting school and I keep waiting for things to get more difficult. It’s not that ICC is easy, because it’s not. But I always start out strong. I am extremely organized and I make sure I stay on top of my assignments and I study until I feel 100% prepared.

However, as the semester goes on, I might forget an online assignment and one day I feel sick or just depressed and it seems like everything will be fine if I miss a day of lectures when I can get the notes online. It’s at this point that my grades might start to fall a little. I email my professors to see how we can work together, but they don’t see me as Liesl the pre-nursing student. They see me as student 655589650. They don’t see me as a whole. I’m like any other student that tries to use an illness as an excuse for not being in class – even though I have a documented disability.

It still feels like the semester has just started because things are still going so well. I have As in all of my classes. I still have a good share of health issues but it helps so much that I’m so close to my doctors. I don’t have to take off days of school to see a doctor. In fact, I have my class schedule worked out so that I have Fridays free.

And my professors…. They are BEYOND amazing. They all know my name and they go above and beyond what I ever thought they would do to help me. For example, in my anatomy class, we had a take home quiz that was due at the beginning of the next lecture. I was sick and unable to go to class so I emailed my professor and sent her pictures of my finished quiz so she would know that I had finished it on time. When I got to the next lecture, she was handing back the quiz scores. To my surprise, I got one back. She had printed off the pictures I sent her of the quiz I took and graded it. I got full credit for it. Not one of my professors at UIUC has every done that. My professor at ICC did it without me having to ask or convince her to. I am excelling in school and for the first time since starting college at all, I actually feel like I am moving forward.

I got my ICC Student ID!
I got my ICC Student ID!

 

Health-wise, things could be better, but they could definitely be worse…

I had an appointment with my GI Physician’s Assistant (PA), Clark, on Friday to figure out how to proceed with my disease. For a while now, I’ve been having a lot of noticeable bleeding when I went to the bathroom. A couple of months ago, I had a scope of my pouch and about 10cm of small bowel above my pouch. There weren’t any obvious ulcers but biopsies showed pathological ulcerations in my small intestine. I was flaring. To put me in remission, my doctor prescribed the steroid Entocort. I was worried about the side effects, but it isn’t really systemic. To my surprise, the steroid helped a lot.

Entocort
Entocort EC (3mg)

In the meantime, Clark ordered a specific blood test for inflammatory bowel disease patients. It tests for inflammatory markers, serologic factors, and looks at specific genes on your DNA. The results took a couple weeks to come back, and when they did, I was shocked.

FullSizeRender (2)

 

According to the extremely expensive blood test, I don’t have IBD at all! I was laughing so hard, I was crying. It didn’t give us any information to tell my doctors and I what is going on with me. What we have learned though is that I don’t have ulcerative colitis. If I did, I wouldn’t be having any symptoms after having my entire large intestine removed. However, every test for Crohn’s disease comes back negative. They can’t prove I have Crohn’s, but they DO know that I have some sort of inflammatory bowel disease. Crohn’s and UC are the two most common inflammatory bowel diseases, but they aren’t the only ones. In a few cases, the patient has IBD, but neither Crohn’s or UC.

A capsule endoscopy was done about a month ago and unfortunately, it didn’t show any ulcers. This should be good news, but it means we don’t know what is wrong. What is causing the pain? As I’ve tapered off of the steroids, the blood is coming back and the pain is worse. After talking with Clark on Friday, he decided to put me on an antibiotic called Xifaxin (rifaximin). He thinks I might have a condition called small bowel bacterial overgrowth. It’s an overgrowth of the good bacteria in your gut which can cause a lot of pain and other symptoms. I am on the highest dose (550mg) and I take this horse-sized pill 3 times a day. Fortunately, this medicine isn’t systemic either so I haven’t had any unpleasant side effects. It can also be used long-term which is definitely a benefit.

xifaxin
Rifaximin (550mg)

Unfortunately, this doesn’t encompass my other health issue – and I think this one trumps the rest.

I have been having the WORST migraines and they have been going on for the last couple of months. It started out as headaches. I was in the emergency department several months ago and a resident diagnosed me with tension headaches and sent me on my way. I tried to explain that these were different, but I wasn’t able to convince her.

Since then, the frequency, severity of pain, and number of symptoms have increased. I’ve worked with my primary care physician (PCP) for the last couple of months and I have a referral to neurology. Until neurology can get me in their schedule, my PCP is taking care of me. I visited him on Friday as well and he confirmed my symptoms to be typical of complex migraines. I have auras where my face and scalp get tingly and my vision gets a little blurry. When the pain sets in, it’s almost always on the left side of my head and it hurts to move my eyes. A lot of medicines don’t help so I’ve been to the ER a couple times with extreme pain. Thankfully, Jackie is usually up for a trip to the hospital with me.

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I don’t know what is causing these intense migraines, but it is starting to interfere with my daily life. I can’t take any NSAIDs because of the IBD and sumatriptan didn’t help either. The newest trial of drugs for me right now is amitriptyline daily as a preventative and hydroxyzine as my “rescue drug” when a migraine starts to occur. The next step is to figure out what is causing these to happen, but that will initially be up to neurology to run tests.

Hopefully I haven’t totally bored you yet!

Right now, I’m over 1600 words so I’m going to take a break. Currently, there is a lot going on in my personal life too so I will most likely write again sometime tonight or later this week. The carousel never stops turning…

 

Hope you are all having a relaxing Sunday,

– Liesl