Remicade Week 24

Remicade Week 24

Round 6 August 7th

This is a super late post so if I forget anything I am sorry. This round was extra fun!
I had a visitor this time well kind of. I have a cousin who was serving a church mission in Sweden and one day he realized he could not even dress himself due to some muscle loss. So he had to come home and start infusions of his own. I am not sure what kind of medication he is getting but the poor kid age 19 has to get infusions two days a week lasting 5 hours per day every two weeks. I thought I had it bad with 3 hours, I can't even imagine. 
Well by some weird miracle we happened to get an appointment the same day, I was not sure if he would be gone by the time I got to my late 1:45pm appointment. But I texted his mom when I got there and they were still there will time to go. I asked to be placed in his pod but they had no room, I was placed in pod D or E, it is the last pod. It does not connect in the back to the other pods so it is super quiet and I was the only one back there, the chair was old and super uncomfortable though and the seating was strange, I did not get my own little room I was awkwardly jetting out in the middle of the room. The seating worked out great though because my cousin and his mom came over with chairs and then his friend came so we all sat in a big circle and talked to whole time it was so fun! The nurses were super nice about the whole thing and though it was fun we were having a party. Again by some miracle my cousin and my machines went off at the same exact time! He finally got to leave but I had to stay for another 1 to get observed. During that time I did fall asleep. There was a boy there again who sat across from me that I have sat next to at the last 3 appointments. He actually talked to me this time, he said it was nice to see young people in there than the old people. I had the same nurse I did last time, she was just newly pregnant last time this time she had a nice little bump. I guess she can not administer chemo drugs because they can cause birth defects, so that is why she was in the last pod and could only take the patients  not on chemo. I did gain like 3 more pounds since the last time. 
Also this time after that appointment I have had this consent cold. I can not seem to kick it. But this is the longest and sickest I have been since starting so its not terrible. I just feel bad at work talking to parents about how their kids are sick and they cant bring them but I sound so gross. 

Also a couple days before this appointment I found out I was pregnant...but I am almost positive I had a chemical pregnancy the day I found out. At least I know I can get pregnant on Remicade. I am meeting with my doctor this week about starting fertility drugs, but I just wish my OB and GI doctor can sit in the same room and talk to me about stuff. My GI doctor told me that I needed to get myself better before trying for a baby, and I feel better and I have been trying for 2 years so I am ready to get more outside help. 

My next appointment is on Friday October 7th 2 days after my bother gets home from his two year church mission, I am super excited, what are the odds I can bribe him to coming to my appointment with me this time? 

Here are pictures of me and my cousin 

Climbing Mountians

7-22-2016

In the month of June my family traveled to Utah from California (10hr drive) for my Great Grandma Junes 100th birthday celebration. My husband really wanted to go to Arches National Park in Moab Utah. So I agreed it would be a nice little vacation away just the two of us. We left after work one night and my husband drove the whole way. I was very proud of myself I didn't have to use the bathroom that often. I did have a terrible headache the whole time though so I slept most of the way. I am not gonna lie I had some anxiety before going on this trip. I had Remicade the week before and I didn't want to be overly tired for the trip. This was also  the first road trip since starting Remicade, and the last time I went on a road trip before Remicade was pretty terrible. Well this trip was a breeze compared to the first one. I give props to my husband for putting up with me and stopping at rest stops when I needed him to. 
So the trip to Moab was so much fun. I am glad we went even if the drive was long and boring. The Arches National Park was awesome, and a great idea for someone who has IBD. They have a very nice visitors center close to hotels. There were bathrooms at the visitors center and water to stay hydrated in the 110 degree weather. Then you drive in your car up through the mountains and basically pick and choose what sights you want to stop at and get out of your car and take pictures of, or you could just stay in the car and drive around the park. At each Arch formation there was a port-a -potty bathroom which was awesome, so there were bathrooms every 3-5 miles or so which was a blessing. I did wear a dress too which some thought was weird but it was nice and flows in the heat and when wearing an adult diaper you want to be comfortable. 
I was just so proud of myself like I said before I could not have done this trip a year ago. I got out and hiked a little bit and had no problems. 
After Moab we went to Sandy Utah for the birthday party which was very nice and then it was time to travel home. 
Traveling home was great also, it went a bit better than the drive to Utah. I drove about 5 hours all together. I personally like driving I feel like I don't focus on using the restroom as much. I also did not have a headache either which was nice. 
Overall it went well I am grateful for my Remicade treatments. I am not completely healed but I feel 100% better.

Remicade Week 16

Round 5


Yes I finally made it to round 5! Some interesting things to note, after my last appointment weeks later I had started getting weird heat rashes, where it gets pretty itchy and red but then goes away and 2 days before my appointment my lip swelled up which was random and out of the blue. But I didn't really tell the nurse about it. It was not making me that worried but things to think about if it happens again. My appointment only lasted 2 hours instead of 3. I took premeds at home so I could start right away this time. I was in Pod D again which I was nervous about because last time in pod D my nurse was mean! This time my nurse was pretty friendly and young. I did see the other nurse in pod C so I missed it by one space. I got a really nice seat too it was near the back in a nice quite area. The needle was the worst this time it hurt so bad and days later it still is pretty red and visible. The remicade ran for 1 hour and it went super fast. It was fun to see it go so fast because the other ones were so slow. I did fall asleep I took 3 Tylenol before my appointment so I was pretty drained. I feel like because the medication went so fast it made me so tired. After the remicade was done the nurse unhooked remicade but I still had to have the IV in and I waited for 1 hour for observation. It was quite boring. and lame that the needle was still in I don't even think she gave me the saline drip because usually I have to pee right after but I never did this time so I feel like she didn't flush this time. My husband thinks she did though. So they observe just to make sure I don't stop breathing or get rashy. Everything went great. I was pretty nauseous after though which reminded me of the first time. I did have a headache too which I usually always have. So the nurse said the next 5 appointments would be the one hour drip then one hour observation that means it will be a year until I get to just go for one hour and then be done. This is a long process. My next appointment is August 14th

Remicade Week 8

Round 4

It was another LONG day. I did not realize my treatment would be another 21/2 hour appointment, but it was..... I was in a new pod this time I think it was pod A or D. Anyways it was all male nurses running it! I got a crappy outside seat on the end with no room wall separator or curtain. Poor David was in the middle of the walk way most of the time. Its the worst seat arrangement if you want to take a nap, I was in the middle of two different pods. I found out my weight from the two months before I gained about 10 pounds which isn't horrible that means the treatments are working. Time seemed to go by SOOOO slow this time and I was tired, the whole week before my appointment at my daycare the flu was going around. I crossed my fingers and toes that I would not get sick! I did not want to reschedule my appointment. I like staying on track. I did notice my body regress a bit a couple days before my appointment and my stomach really hurt also, I had not felt that pain in a long time. My hair is still thinning and my mom noticed the color is losing its pigment she wondered if it was from the medication. During my appointment a younger guy came in and I was ease dropping he is in for the same thing I am and our treatments match up in weeks so I will see him in a couple of weeks. My next appointment is on June 17th another 8 weeks of waiting. I pretty much slept my whole treatment this time. I felt bad for David just sitting there but I love when he comes, I don't feel as nervous.

 I feel back to normal again after my last treatment. Healing after the 4 round was rough again. I was just so tired I slept a lot over the weekend. I did not go to church because I was tired and I had loose bowel movements still. I did go on a drive to the beach with my husband which ended up being terrible! I though because I was in the car resting the whole 2 hours I would be fine but my stomach hurt so bad we had to find a bathroom halfway through fast! Other than that I still have not gotten sick which is amazing because I have such a low immune system now.

So I decided to finally do it! I have wanted something with UC awareness on it since I got diagnosed. So I ordered a shirt off of ETSY. I did not think it would make it in time for my appointment but It came right before I had to leave! I even got 2 comments on it at the hospital!!!! I am so excited to wear it.  I LOVE it! I keep it a secret for the most part that I have UC but I am excited to spread some type of awareness.

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Remicade Week 6

February 26th

This week my appointment was at 2:45pm. I got off work about 2:15, this week my mom picked me up and took me we left on time but there ended up being road construction and once at the hospital no place to park. I ended up checking in 15 minutes late plus the waiting room took a minute. I was in pod D this time usually it is pod C. So I get to my chair and the nurse was SOO rude, she kept saying if you are late sometime they can not do your Remicade because it takes 3 hours and the infusion center closes at 4:30. Anyways I took my premeds of 1000mg Tylenol before so I could start my treatment right way. Then the nurse kept telling her supervisor I was late and such. (side note they can not even get mad at me they made a patient wait an hour in the waiting room because they had no  chair for her to get a dressing change! ) Anyways near the end of my appointment they increased my dose to make it go faster so I was out a little after 5 which was still right on time and there were still people in the building after me. So it all worked out, I just wish the nurse would have been a bit nicer like the ones in pod C. It was nice having my mom there I did not expect her to stay but it was nice she did I get nervous when I am there. This time my IV machine had a blood pressure attached so when I went to the bathroom it was hard to maneuver because it was large. I did take a nap this time between 140 and 220 I get so tired.
After I was just so tired but I went to Chevy's with my mom which was fun! I am kind of glad David didn't go this time cause I get crabby on the way home so with my mom there I didn't have to get crabby at her.
My recovery over the weekend was rough I would say worse than the past times. When I got home I fell asleep then woke up when David came home. My legs hurt so bad and they were SO shaky I couldn't stand without being in so much pain. I just wanted some Tylenol and I had to crawl to get it. I was just so emotional and cranky I cried a lot! My stomach just hurt so bad. Saturday I had a bit more energy and Sunday was about the same I went on a long 2 hour drive and did just fine which was awesome. I am writing this on a Tuesday my IV arm hurts so bad still and its bruised up good. I have gone back to mushy poop but its not pure water liquid which is great and I am keeping my weight steady I still go to the bathroom about 4 times in the mornings but I can make it all day until late at night without going again which is awesome. I am able to go shopping after work which I haven't been able to do in a long time. My next appointment is April 22nd the nurse said it would be another 3 hours and then my 5th would be 1hr and an observation period after. Yeah moving to every 8 weeks.
I was able to give all my old Lialda pills to a cousin I just found out has UC also so that was awesome because I had so much left.

(The picture of the butterfly is what I finally finished at my week 6 appointment, it took me 3 remicades to finish it.) My mom was also a sport and took my picture, David hates doing it but I love seeing my thumbs up and happy before I get tired! My husband also snuck a cute love note in my bag for me to see!

I Am Normal!

Thursday February 4th

I Pooped like a normal person!!!!
This may be TMI for some but this is blog all about bowels so there is no way around it. It is formed bit still pretty soft but it is not pure liquid!
I was so happy I literally cried I was so happy. It was about 6:30am and I ran in and even woke up my husband I was so happy I said I am normal again. I have not gone to the bathroom like that since being on prednisone and even before that in about 2 years! This is a huge accomplishment for me. I was also still on antibiotics when this happened, which the antibiotics had been giving me terrible diarrhea so this was strange that it was normal while still taking them. I just really pray this is not a fluke because I am so excited, I am so praying it is the remicade working. I have been having horrible gas and bloating which could be from my period starting soon, but I have not been able to even pass gas in a very long time without having an accident accrue so this is total progress even if it sounds so gross it is telling me something is working. I also have a lot of stomach pressure but I just feel its because my body is working in a new way that it has not been able to do in a long time. I am still going to the bathroom still pretty frequent and its hard for me to tell the difference from a gas bubble and actually needing to use the bathroom.
 I called my mom and the way I sounded telling her this was like I was pregnant or something but all I did was go to the bathroom like a normal person. After that conversation my mom sent me this picture and said I am so happy you pooped!

Remicade Week 2

January 29th
I had my second round of remicade on January 29th. Building up to the appointment was a little difficult this time around. The Sunday before I started to get sick with a sinus cold. On Wednesday night I had a fever of 99.5. So on Thursday I called oncology and asked them what the deal would be if I had a cold and fever. They said I had to get confirmation from my GI doctor so I called him and said its been a week since I got the cold and I don't have a fever anymore. He gave the Okay to go to my scheduled appointment. I was really glad because I did not want to hold off and get my treatment days all screwed up.
When I went to my appointment I had to wear a lovely face mask because I was still sick and they do not want to risk others getting sick. The nurse did ask if I had any infections I said no because I did not have any present. They also took my temperature and it was 98.5 so I was in the clear. The infusion was easy this time. The nurse did start the IV in my right arm again but this time the machine did not make a noise once. I also did not notice myself getting tired every time the nurse increased the dose. I was way tired this time in general though, I took my premeds of 2 Tylenol at home, so when I got to the hospital I was hooked up right away to start my treatment. I did take a nap this time for a while, there were so many more people there this time on a Friday at 2pm so my nap did not last to long I also got a weird end chair this time in a busy isle way. My husband also came and did work the whole time. I did have a new adventure of trying to go to the bathroom with my machine. It was quite the trick to unplug from the wall and lug this big thing with me to the bathroom. But at least I was not like the old man sitting next to me who had an argument with his wife about unplugging his machine to go to the bathroom the poor man thought he had to take the whole wall with him to go to the bathroom he did not know you just unplug it from the wall.
Anyway it seemed to go faster this time, we were home by 5:15pm so not to bad. I was not as tired when I got home this time but I did take a nap and I was still sore this time. Over all it was fine

Update: So Sunday after my appointment I got a terrible Ear Infection. I was put on amoxicillin. The one thing they said with this antibiotic is diarrhea so great going in the opposite direction of where I want to be. But I think going in on Friday when they asked if I had any infections I said no, but I am almost positive I had one present I just did not know about it yet. And the remicade made it 10x worse. I do remember a week before my appointment a child at my job had a double ear infection so that is most likely where I got it from. I also have to tell any doctor when treating me that I am on remicade so they can make sure I respond to other medications. Now a week later from my remicade I still have one ear blocked and a terrible cough with mucus.
So the moral of this whole thing is I officially have a terrible immune system and its only been 2 weeks of remicade and I am supposed to be on this my whole life great it better really fix my bowel problem if I have to be sick all time because that would be a double whammy with both problems. My sister did make me this awesome cake for me!

Remicade Week 0

What is remicade?
Remicade is a drug to help reduce inflammation, it is an immune suppressant drug
Given through IV infusions
Patients who do not respond to pill form medication and who do not what to be on prednisone long term find that remicade helps.
Remicade is used to help patients living with autoimmune diseases plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult and pediatric crohn's disease, ulcerative colitis and ankylosing spondylitis.

The typical schedule for remicade treatments is
Week 0
Week 2
Week 6
And then every 6-8 weeks after for as long as you respond to the medication.

I had my first round of remicade January 15 2016
I watched a lot of YouTube videos which made me feel better about the whole thing.
I went in at 9:15am and was out around 12:30pm.
The first 3 rounds usually will take 3 hours. They start the IV drip very slow then work up to the full amount your doctor prescribes.
The nurses first gave me 2 Tylenol as a pre-drug to make sure I did not have any reactions to the medication. Then they started a simple saline drip after 30 minutes they could start my remicade. The nurse did suggest I take Tylenol at home before coming so I do not have to wait 30 minutes the next time. The nurse started my IV in the arm because it was biggest vein. I think next time I would prefer it in my hand only because every time I moved my arm an alarm would sound the machines are just sensitive.
I did notice every time they increased the dose I would feel really tired and it burned going in my vein a little. But I was completely fine. The first time was fine the nurse did say a lot of people respond to remicade but I may not start noticing changed in my symptoms for a while.
After I had my treatment I was so tired, I would describe it as running a marathon but all I did was sit in a chair for 3 hours. The next two days after I was just extremely tired and a little cranky and so hungry.

What to Pack

Remicade Day
1. Face masks, hand sanitizer, tissues, hair ties.
2. Phone charger
3. Contact solution
4. Head phones
5. Coloring book and colored pencils
6. Slippers
7. Shawl
8. Neck pillow
9. Crackers
10. Water bottle
11. Phone/ Tablet

For my treatments I have to go to my hospital to recive IV infusions of remicade.
My hospital has very nice reclining chairs and a lot of pillows and warm blankets. They also provide food, soups and crackers and drinks. They also had a basic chair for a guest to sit.
I put together a hospital bag for when I go so it is easy for me to grab and go every eight weeks everything stays in my bag until the next treatment.
I would also suggest wearing comfortable clothing, the first couple treatments last about 3 hours long. I also do not really need the neck pillow or shawl but the hospital suggested it because sometimes they do not have enough pillow and blankets.

What is Ulcerative Colitis

Ulcerative Colitis (UC) for dummies would be described like this...
 Every time you eat something your intestines can not digest you feel like crap with stomach pains and bloody, diarrhea for days.

The more accurate description of Ulcerative Colitis is
Inflammation of the walls of the bowel accompanied by the formation of ulcers in the intestines.
This is a inflammatory disease, something that will not ever fully be cured unless you have you colon removed.
Basically every time you eat something your body can not digest properly your body is attacking itself trying to warn off that "foreign object"

Some say that UC is genetic and it is something that is always in your body but just appears to get worse and worse over time.
This disease is very individualized for every person. There is no specific diet to follow to help you get better. Foods that I may not be able to digest other UC people are okay with eating.
Just for example my "trigger" foods are
Lettuce
Steak
Watermelon
Carbonated beverages
Popcorn
Dairy Products mostly just milk
For myself and most UC people all vegetables have to be cooked
It is suggest for most UC people to not have high fibrous foods
Sometimes after diagnosed with UC your GI will refer you to a dietitian to help you out also.
For myself these are foods that if I eat them I will go into a "flare up" meaning I will have bloody diarrhea and stomach pains for a couple of days until the formed ulcers heal. The goal is to stay in "remission" so avoiding these foods is critical to making me feel better.

I, along with a lot of others effected by UC need the help of medication. I have gone through in a previous post about my history with medication. But to help stay in the "remission "period medication can help. This is also very patient personalized, I did not respond to basic pill form medication to help keep my UC at bay, so now I have to be on a heavier medication to help me.

I would suggest being in communication with your GI doctor. UC is very individualized and only you and your doctor can figure out what is right to help you.
When I got diagnosed my doctor gave my Lialda and said here you go this will help and did not even explain what UC was, so I had to do a lot of research for myself.

My First Year with UC

My GI doctor put me on Lialda right after my colonoscopy which was fine for a couple weeks. I then started to regress from that medicine. I had my first bowel incontinence accident on July 4th in public it was so embarrassing. After that I had so many more accidents and I lost a lot of weight I would lose a pound a day. I also had no appetite.  It was so bad I wanted to quit my job because I would have accidents while at work. My GI doctor then put me on Prednisone at the end of July. Prednisone is the miracle drug but it makes you crazy. I felt so good. I was only on prednisone for a short time after I weaned off I was taking a generic probiotic by my choice I felt great for about 3 months. I had a flare up and my GI put me on Balsalazide. I took one dose of it and stopped thinking I was pregnant. I ended up being okay for a couple more months then the day before Thanksgiving I had another bad flare up. I started the Balsalazide again and after weeks of it I started to regress really bad again and I had so many accidents again. I was also taking Iron supplements which made me really constipated which was a good thing but it hurt my stomach. In December I went on a 12 hour car ride with my parents and my mom noticed I was having a terrible time, we had to stop all the time for bathroom breaks. I was at my wits ends I felt terrible. In January 2016 I made an appointment with my GI doctor after looking up other options. At this point I just really wanted my colon removed which makes UC go away. But my doctor suggest a Biological Therapy called Remicade that they offer to patients who do not respond to pill form medications and who do not want to be on prednisone forever. It is a form of IV infusion medication. I had my first treatment January 15th 2016. I hope it starts to work for me. December 2014 I weighted 199 pounds as of January 2016 I currently weigh 160 pounds.

 November 2014                                                             December 2015

Background

My name is Aubrey, I am 25 years old and I live with ULCERATIVE COLITIS.

I noticed symptoms around December 2014 which included
-Extreme weight loss without trying
-Bloody stools
-Lose stools
-Loss of appetite
-severe anemia
-Going to the bathroom more than 20 times a day
-Severe stomach pain which landed me in the ER twice

I decided to finally make an appointment with my primary care doctor who refereed me to a Gastroenterologist. I met with my GI doctor for the first time in June of 2015 and he immediately wanted to do an emergent colonoscopy. 3 days later my GI doctor told me I had mild ulcerative colitis.
Please follow my journey living with UC I am so new to this and when I was diagnosed I looked all over the internet for support. I hope to at least help one person who is living with UC and give comfort to let them know they are not alone. Because I felt very alone when diagnosed and searched for help.