April 11th, I headed to an appointment to see a rheumatologist for the first time. It went really pleasantly which was nice, but it was apparent that there didn’t seem to be any rheumatological needs so I was told to come back any time if anything became of concern.

I had been able to drop down finally from 4 Smarties packs to 3 per day but it was still causing a lot of issues for me hours after eating.

Since there was this “delay” in symptoms, I had trouble with eating too much and causing problems later.

As school was getting close to wrapping up, I had done a lot of my finals work in advance in order to not feel overwhelmed or stressed towards the end of the semester. It was definitely immensely helpful.

It gave me a lot of time to continue working on the apartment little by little.

On April 13th I had received an important phone call that I had been waiting for- a response from someone on my medical team regarding the large letter I had sent on my birthday. My dietician had called me and said that they were proud of me for advocating for myself and approved of my decision to remain on TPN.

They mentioned that my blood labs had looked really amazing, and my weight was at such an excellent place. They could see that my quality of life was highly improved and TPN was helping me maintain that.

I also requested on the phone that my dietician ask my GI doctor for a pill prep form of a colonoscopy since 1) I knew I would not be able to drink a regular prep and 2) I wasn’t eating so it didn’t make much sense to do a regular prep.

I was so happy after that phone call because I had prepped a whole list of statements since I was fully expecting to have to argue for my reasons of why I should remain on TPN.

The call had gotten me so excited for the future that I decided to google something I hadn’t done before: “long term TPN patients” which actually came up with results I wasn’t expecting.

I was expecting to see a lot of “complication” articles and things about infections and death but surprisingly I found many articles about people who lived on TPN for 20, 30, even 40 years!

This is when I found the non-profit organization called the Oley Foundation. It was founded by a nurse and her patient who was on TPN for 50 years! FIFTY!!

I found so much support watching their YouTube videos and conferences and ended up finding so much information of so many patient cases who were on long term TPN specifically at home.

I saw that they had monthly support home parenteral nutrition groups, so I decided to join to find out more information on long term TPN use from the patient’s perspective.

April 14th, I went to my first Oley meeting which was really fantastic, and I ended up taking notes for things that I could do that were good tips and advice to know for my own central line care.

Among the group I was generally the youngest in age by decades, but it was helpful because most of everyone else had been on these forms of feeding for a double-digit number of years.

I also received a phone call from my GI doctor saying they canceled the colonoscopy because they wanted me to do a regular prep and since they knew I couldn’t they said it wasn’t important since and that they didn’t think my condition was related to anything there anyways.

I was okay with this decision because I didn’t want to do the prep, so I guess a win-win.

April 15th, I had a minor-ish flare…. I had been working on some assignments for classes and didn’t realize that I hadn’t peed in a while which I normally need to go more frequently since I have so many liters of fluid being consistently pumped into my bloodstream.

I had gotten up to pee after many hours had passed and after I was done, I collapsed to the floor with pain and nausea. I couldn’t stand up and I attributed it to the fact that when my bladder was full it likely kept my organs in a certain position and now that it had emptied, all the organs moved back to their original positions which is what was causing the pain.

Not sure but it ended up hurting for 2 days so I kept it as a reminder to myself to pee more frequently and since then I haven’t had any issues.

On April 16th I ate 1 Smarties pack that day towards the evening (since the stomach hurting thing from my bladder the previous day) and it didn’t seem to be sitting super well.

April 17th this pain continued, and I was feeling really sick. I ate another pack of Smarties at about midday (as you can tell I’m not great at the whole “not eating idea”) which made me muchhhhh sicker. I had to spend the day in bed and not do anything.

My abdomen began swelling out very noticeably and my left rib cage began protruding out more (some of my stomach is underneath it because of how my torso is) and I specifically noted that I needed to chill out on the Smarties because it was looking like my body was preparing to flare.

On April 18th I woke up and felt awful and had been kept awake all night from pain. I for once held up to my own deal of not eating anything that day and remained lying in bed for the day since I was too sick to get up. I was really bummed that I seemed to be flaring because I had plans to go see the Boston Marathon in person that day but wasn’t able to.

I continued not eating anything up until April 20th (so far, the flare had lasted 6 days).

April 21st my brain was craving food so badly so I couldn’t hold out any longer- I had to have a pack of Smarties. I even specifically wrote out in my notes “I’m sorry future Emma for any ramifications from this”. And well-did I hit the nail on the head with that one…

The following day at about midday I began getting severe abdominal pain and nausea. I took my nausea medication and tried to lie down. I still somehow ignored the fact that I was actively flaring and still had another Smarties pack that evening.

On April 23rd I woke up after sleeping for 10 ½ hours straight (my body did this usually a few days after missing a lot of sleep) and of course my bladder wasn’t loving me for that.

That day I was able to do some more though and went to the park to draw since I had been doing more of that in my free time.

The flare seemed to have calmed down after that day and went back to my usual pain levels.

I just continued to try and be more aware of my Smarties intake and even changed how I was eating them to try and lessen the amount of packs I was eating per day. By eating them more slowly, my brain felt more “full” and craved it less if it felt like I was eating it over a longer period of time.

April 27th, I had my last final exam for my last class!!! HOORAY!!!! I came home and cried out of joy for all that I had accomplished that semester and I was so proud of myself.

I did have summer classes that I was going to take in order to make up for the semester I had missed but I had a full week off before they began. I spent that time resting as much as I could in order to be ready for the summer courses.

Read how Emma’s week off goes in, “Revisiting the Hunger Cravings”.