One more day?

So this is my first post since my surgery. Wednesday night was rough for me. I don't remember much, except for waking up in the worst pain I've ever felt in my life. It had felt like I had been stabbed numerous times in the stomach and at the time felt like I had no medicine in my body. I remember them waking me up while on the way to recovery and I was crying and hyperventilating so badly, except everytime I would cry it would hurt worse and worse. I remember my mom and dad coming into the recovery room and just looking at them seeing how worried they were because I think I looked very bad and in pain at the time. My parents said we were waiting there for a few hours but I honestly felt like it was only about 30 mins until I was transported back to my room. They had to have multiple people lift me from one bed to another because i physically couldn't move. I remember having my own pain pump, but couldn't tell you how often I pressed it. I don't remember much that night either, it's all quite a blur.

When I woke up the next morning I was still in a lot of pain. I also realized I was connected to a cathedar still so I kept getting the feeling that I had to pee but it would go away. I actually don't remember much the next day after surgery now that I think about it either. I know I slept a lot and they eventually took the cathedar out which scared me because that meant I would have to get up myself to use the bathroom. After some time, a physical therapist came in to help me get up for the first time. I actually couldn't move without someone's help. My stomach was so sore and my legs were so weak. Once I sat up, it took me some time to waddle from my bed to the bathroom to finally go pee on the toliet. Going pee the few times I did that day might've been the only times I got up that day. I was also still on a clear liquid diet, but I wasn't hungry at this point anyways so it didn't matter much.

Friday rolled around and I was already feeling quite better. I was still on my morphine pump (which helped a lot) and I think this morning I was allowed to drink my clear liquids to make sure everything went through my system as planned. And it did. I think they also switched me to a low residue solid diet for dinner where I ate a grilled cheese and some mashed potatoes. However for some reason my heart rate when crazy while I was eating so we told the nurse and they came in to do an EKG test on me, just in case. Everything was normal, my body was probably just freaking out cause I was actually eating normal food for the first time in about 5 days. 

For the past few days I've felt about the same. My pain is tolerable. I've only been taking Tylenol for pain and that's it. I've also been eating regularly and trying to walk around as much as I can. Tomorrow  after the stoma nurse comes once more, I will be going home (hopefully!) I think just being at home will make me feel better instead of sitting in this same room day after day. I haven't showered since Tuesday... Ew I know I think I have dreads. Also because I am coming off the prednisone again my acne has been acting up... Oh joy! Just one more thing to bring my confidence down. 

My stomach has just been kinda sore and it's gonna take some time to build my energy back up. I'm hoping this week will be relaxing and pain free for me. I have a lot of adjustments to get use to but I'm ready for it. 

Once I have more time at home I can update again, right now I am just typing from my phone and my fingers are going numb!

-- JKL

The night before

So tomorrow is the day. The day my disease will be gone and I will be on the road to recovery! I will be getting surgery at 2pm tomorrow. Today I've had many different nurses and doctors come in to talk to me about the procedure and asking me questions to finalize everything. An ostomy nurse came in today as well and marked my on my stomach where my stoma will be placed and also gave me instructions and examples of the ostomy bags I will be using. However, the word pouch or bag freaks me out so I will now be referring to it as Maggie... Maggie the Baggie! It just kinda sounds a little better in my own head! So whenever I talk about Maggie, you'll know, yup, that's the ostomy bag that's gonna be my BFF for the next few months. 

It makes me sad when I think about it but I just need to remind myself, this is temporary. And not to mention, a great learning experience to help me be an even better nurse in the future. Who knows maybe I'll even be a GI nurse or an ostomy nurse!

Well tomorrow I won't be eat anything which I think I'm the most upset about. I've already been on a "clear liquid diet" for 24 hours and my stomach is going crazy. I won't be able to eat real food for a few days, so I will definitely be "hangry" (hungry + angry).

Mmmmm chicken broth and jello....

I was told I will most likely be in a lot of pain tomorrow. I will have my own personal button giving me pain meds every 8 mins or so? After the first day, they said they will want me moving around as much as possible, so moving to the chair and maybe walking around a bit. I'm hoping for a fast recovery. I've been here 2 weeks already and I'm so over this. I just wanna go home and be pain free! Tomorrow will be the beginning of a whole new chapter of my life. 

-- JKL

Surgery?!

I just got approved to get my surgery on Wednesday. I started an all liquid diet tonight... (Chicken broth, orange jello, lemon ice, and flavored water).

I've been very up and down emotionally. I am prepared for it, but it hits a little harder once you find out it's actually gonna happen. 

Tomorrow I will meet with the head sergeon, Dr. Hurst, to get final details about everything. I will have a big update tomorrow I'm sure, until then, I just need to get some sleep and rest my thoughts. 

-- JKL

There is still hope!

SO…
I made my decision yesterday that I am going to give the Cyclosporine one last shot. I have been waiting for months and months for this new infusion drug to come out and I feel like I've barely given it a chance. I don't want to give up yet; there is still hope! I know I might be dragging out making myself feel like crap and maybe just postponing surgery for a later time, but I feel like this was the best choice that would leave me in a good state of mind.

They started giving me the Cyclosporine last night around 8pm and its on a constant IV drip right now. They want to see major improvement on this within about 3 days. If there isn't improvement, surgery would be the next step. However, if I am doing a lot better within the next few days, I will be going home and just taking the Cyclosporine orally.

Even though I HATE this medicine, I just am gonna suck it up and deal with the side effects again. It makes me look extremely swollen in the face, turns my hair/eyebrows a very dark brown color, and even makes my arm hair grow?! Not to mention, I still get tremors and sometimes tingly toes and fingers.

Hopefully within a few days, I will be updating my blog in the comfort of my own home. Sitting in one room for this long is quite depressing. I just wanna go home! :(


-- JKL

Decisions, Decisions…

So today I met with Dr. Rubin and I was left with a decision to make. A very HARD decision might I add… He told me that as of now, I have two options to choose from.

#1.
I have the choice to get my colon removed through surgery. This would be a three step surgery and would take many months to complete. If I chose this, my first surgery would be given probably by the end of the week or early next week. I would then be in the hospital for maybe 5-7 days after the surgery in recovery. He said that people who have gotten this surgery notice a difference right away and start to feel relief instantly. I would also be living with an ileostomy bag for 6 months until surgery #2 and then for a few months after the second surgery. By surgery #3, thats when they would be able to connect my intestines all back up and I would be "back to normal." Heres a diagram to kinda show where the ileostomy would be and what would be taken out...

#2.

He also is giving me the option to take the medicine I've mentioned previously called Cyclosproine. This is the "miracle" medicine that helped me get out of the hospital last year and away from surgery. This would be used as a bridge to see if the new infusion (Vedolizumab/Entyvio) would kick in. The studies have shown that this infusion can take from 6-10 weeks in some patients before they start responding. The Cyclosproine would help be bridge for the next few weeks since I am only just past week 2 and I would be slowly taken off of it to see if the infusion will work. However, since the Vedolizumab is such a new medicine, this has NEVER BEEN DONE BEFORE. There hasn't been anyone who has used cyclo as a bridge for the vedo. He says that he doesn't think that taking the Cyclosprine along with the infusion should be any more dangerous than what I did last year. 

So now I am stuck here with this decision to make…

Do I get the surgery so I can start to get the relief I have been desperately seeking for almost two years now… or do I just try this LAST option with no guarantee that it will even work, but if it does, I will still be living with a colon?! Part of me just wants to get it over with and get the surgery because I sounds so nice to just not have to worry about this, for once. But again, I have been trying and trying different things for almost 2 years, so might as well try all of my options before just giving up and getting surgery which is permanent. 

The doctors will be in tomorrow wanting to know my decision, so I have A LOT to think about tonight. I know whichever route I choose, it isn't an easy choice, but I'm still hopeful that maybe, just maybe something will go right for me for once.

Until then, I just need some positive vibes sent my way ~~~ 

-- JKL

Hospital Update #2

First of all, I just wanted to thank everyone who has been so supportive throughout all of my struggles. I have amazing family and friends. Even many people have reached out to me that I barely know and have told me stories about someone they know with this disease or even to just say "I hope you feel better." 

So today's been kinda an emotional roller coaster for me. Dr. Rubin was in here early this morning and after I told him about how I was feeling, he was very concerned. I shouldn't be feeling this bad still with all of the steroids and medications I've been on and it's very unhealthy for my body. After explaining things to me as best he could, he told me that at this point my best option is to get surgery to get my colon removed. This is something I knew I would have to get done eventually, I was just hoping I would be able to drag it out as much as I could instead of getting it at 20 years old. It was hard to hear, but I've been preparing for it for quite some time and I knew it would be an option coming back to the hospital. 

Tomorrow morning around 7:30am I will be getting another scope to make sure once more that there isn't any infections that are causing me to feel worse than I normally would. They will also take biopsys and just look at the colon to see how inflamed and damaged it really is. 

After this procedure, they will determine what steps should be taken next... Surgery being very high on the list. The team of surgeons will be coming in tomorrow to discuss the procedure with me and talk to me about how this will change my life. From what I know now, this is a three step surgery and I will be getting an ileostomy bag for a few months. I'm planning on posting diagrams and pictures about what they will be doing once I find out all of the correct information tomorrow or Wesnesday. 

Even though this is the last thing I had planned, I hope that this can finally give me the relief I've been desperately seeking for almost 2 years. 

-- JKL

Hospital Update

Today is my third full day in the hospital and I'm actually feeling quite antsy. I am feeling better than I was on Wednesday night, definitely, but still not 100%. Will I ever feel 100% at this point? I got my second Entyvio infusion yesterday morning and for the past few days I have been getting IV steroids. Dr. Kinnucan talked to me yesterday and explained how even though I might not feel as sick as I have before when I've been in the hospital, I still am pretty sick. She doesn't want to send me home right away and have things backfire which could include getting my colon removed. I trust what she's doing, I'm just going crazy being in the hospital. Third times a charm though… right?

Im assuming I will probably be here until Monday because Dr. Rubin will be in then and he might want to come by and see how everything is going.

My third infusion will be given in four weeks from yesterday so besides giving me steroids, there isn't much more they can do. Dr. Kinnucan is trying to make me feel okay for another four weeks in hope that by then, the medicine will start to kick in and I will be able to feel the difference. But like she said, if things go backwards from here until then, it could result in a terrible, terrible surgery!

My parents have been out of town camping in Door County all weekend, so I am staying at the hospital by myself :(. Fortunately, my sister stayed with me the first two nights and one of my best friends, Gabby, stayed last night. Also, Sondra, my roomie in the fall came by today and surprised me with my favorite Starbucks drink (a nonfat iced green tea latte of course!) and a delish breakfast sandwich.

Its been a tough ride, you guys, but I'm still hanging in there. Once again, I am so blessed with everything in my life, but never would I ever wish this disease upon anyone. Its very draining emotionally, physically and mentally. I know everyone has their struggles in life and I've accepted that this is mine. It's only going to better my outlook on life, and hopefully one day make me a better nurse.



One of my friends sent me this ecard the other day and I thought it was best to share it!… 

I've also wanted to post this lovely video that made me DIE LAUGHING from Tosh.0 of course. He never fails to push things to the extreme!…. I couldn't find the short version, so start at 7:11 and watch the whole thing until about 16:10!!!

-- JKL

Nooooooo

Soo this is going to be a very short post, BUT surrpriiisseeeeee.... I'm heading back to the University of Chicago Hospital again in the morning to be admitted for a couple days. I've been very emotional the past few days from this constant struggle but I'm trying! Just thinking about how I'm going to be missing work tomorrow and this weekend and my class including my test I have tomorrow! Ahhh!!!

I was told I am going to be put on IV steroids and given my next dose of Entyvio infusion early to see if it helps with anything. Fingers double crossed. This whole UC thing is getting really old... I need some relief, I need to be me again! Comeonnnnnnn!

I will be posting I'm sure a lot this weekend since I'll be stuck in my hospital room by myself with my computer. Until then, chao

-- JKL

Update since 1st infusion

So tomorrow will be a week since the first infusion. I haven't noticed anything different yet, unfortunely, but they said it could take up to the three infusions so I'm staying hopeful. Actually, things are going slightly downhill for me. I think since I have stopped taking the Tacrolimus and this new drug hasn't kicked in yet, my body isn't too happy. I've still only been taking 15mg of prednisone but I now am getting boosted up to 40mg again... Ugh when will it end?!? Hopefully this boost in the roids can give me a little relief, I don't have time to feel like shit!

I've been very busy this summer with working full time and going to a night summer class four days a week. Adding my complications from my disease on top of all this is such a pain. I am so close though! I need to look forward and stay hopeful!!!!!

I am scheduled to get my next infusion on July 15th. Crossing my fingers that I will notice some changes after that one... Please please please. 

-- JKL