Ulcerative Colitis Tips


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Twas The Night Before My 1st Remicade Infusion

Kyle with his wife

Kyle with his wife!

Introduction:

My name is Kyle. I was diagnosed with UC in July 2012. I posted my story on here a couple weeks ago, title “Joined team UC in July… World Rocked in August.” I still have an amazing wife who has stuck by my side through thick and thin. I work in the school district and am searching for a full time teaching position. I also serve as a Youth Pastor in our local church, I am fully surrendered to Jesus Christ. I love all sports, right now my fantasy football team is undefeated and rightfully named, “Ulcerative Colitis.” I love playing basketball and running. Reading is also a new found favorite as I have had some down time in life lately! See my UC story for details there.

Colitis Symptoms:

Currently have constant tightness in the gut, BM’s have been solid and roughly 2-3 a day, energy level is up and down with the days, joint soreness especially in the knees, not sure if that’s a side effect of prednisone or inflammation caused by the Colitis Flare, anyone else dealt with that?

First Remicade Infusion:

I had the appointment scheduled at 8 am at the local hospital in the big city just 16 miles away from our apartment. I was still on my prednisone so of course I was already up before my alarm was set to get off at 6:14 am, but this was a different awakeness then mornings prior. It was the morning of my first remicade infusion, now it wasn’t quite the feeling of Christmas, but it was close. I got up as normal and had a normal BM, solid (SCORE!) and a shower. My loving and amazing wife was kind enough to get up with me and drive me to my infusion, I am definitely the morning person in our family, she made me breakfast: scrambled eggs with some hash browns, orange juice (pulp free) and a banana. While she finished getting ready, I prepared a little snack for the morning, took my medications, and waited eagerly to head out the door.

I wanted my wife to be as excited as I was so I told her to take a left at the Starbucks and get herself a coffee to jump start her day, it isn’t every day that you get to get an auto-immune suppressant put into your body! We arrived 15 minutes early and got all checked into the outpatient infusion center. At 8 am I was brought back and pointed to a nice leather reclining chair in a big open room with curtains separating each persons chair. There was a moveable TV and a tray for all my belongings. I got comfortable as the nurse began to get things prepared for me. She found the perfect vein and got the IV needle in as we awaited the arrival of the “REMI.” (That’s my street name for it) She then asked me a series of questions about my health, meds, and life in general. My wife was reading while I sat in anticipation.

The moment finally came when I heard my name and saw the bag of what was referred to as “gold” by the hospital staff. They slowly begin to put the remicade into my body, starting at 10 for 15 minutes, then 20 for 15 minutes, then 100 for 30 minutes, then 200 to finish things out. Each time checking my vitals to make sure things were going smoothly as the Remicade entered into my body.

My lunch arrived shortly before the finishing of the infusion. I had a hamburger, mashed potatoes and peaches, which was included in my visit, and if it’s included you better believe I am taking advantage of it! Especially since my last stay in the hospital I was on clear/full liquids the whole time, Jello and butternut squash were NOT on my list of options today! Praise the Lord!

I finished out my infusion and signed several documents and scheduled my next infusion for 2 weeks out, and then four weeks after that! All and All it was a very nice, relaxing morning, getting what my GI doctor called a “miracle” infused into my body.

Okay, as much as I enjoyed writing you my “Remicade Morning Story,” just wanted to update anyone who is curious on the process. I am feeling very good the night after, I was tired this afternoon but think that may have been from some of the pre-game medications they gave me before the infusion. I am feeling normal, I didn’t go in thinking it would magically fix me, but I am having no side effects and feeling at a normal level. During the infusions I did get a little cold but they had warm blankets that did the trick. Didn’t feel any different than when I have received any other IV treatments in my hospital experiences.

So I am looking at it now as so far, so good! Still experiencing tightness in the stomach but nothing like what I went through 2 months prior, BM’s are down to 2-3 a day with solidness, still on a lower res diet, but increasing the amounts of fresh fruits and veggies. Prednisone is being tapered down by 5 mg’s per day, which is very exciting because the moon face is getting old, and the emotions are ready to be back at a normal swing instead of extremes, and the lovely red bumps on my shoulder blades have outworn their welcome. Also, have been experiencing some joint pain in my knees, feeling like an 80 year old man at times, anyone else in a flare get the knee pain? Could also be something to do with the prednisone, but I am scheduled to be completely off that the week after Thanksgiving, Lord help that day to come sooner than later! But I am thankful for the steroids because I know they are doing their job, but man side effects are LAME! But we are dealing and thankfully my wonderful wife reminds me that I am still handsome : )

I am not sure on the long term outcome of the Remicade, as I said this is the night of my first infusion, but day one has been pretty good! Advice for all you new “Remites” out there : Make sure you stay hydrated the day before, day of , and day after. I have heard headaches can be a factor, but I drank over 100 oz. of water, the day before and day of and didn’t have a headache, other than than, eat something before you go, and hopefully your lucky like me and get treated to a meal during the process. I hope to keep you updated on my adventures with the Remicade, it was a tough decision for my wife and I to make the step, but in order to get my gut back to neutral it was a step we felt the Lord wanted us to take.

Love to hear other stories from you on your Remicade experiences. All you UC’ers out there, You Rock! and know you got a ton of people who are just like you, you are not alone, dealing with this disease requires support from others, you gotta get people around you who know what you are dealing with and going through. Take advantage of the amazing stories and people that use this site! Get on the mailing list, Adam’s emails are always great and encouraging not to mention helpful! I don’t know you all but I love you and am willing to pray for you!

Where I’d like to be in 1 year:

I’d love to be back to neutral in the gut in what I call the “new normal.” I was reminded the other day by a buddy as we spoke about feeling normal that once UC hits in your life getting back to the way things were shouldn’t be our desire. Make it your goal to create a “New Normal” which is a way better than the old normal : )

Colitis Medications:

Currently taking 2 lialda pills in the morning, 35 mg of predisone (20 morning and 15 at night) tapering off at 5 mg per week, multivitamin, and a probiotic.

Just started Remicade infusion today. Next one is set 2 weeks out, then 4 weeks, and then the goal is every 8 weeks from there. Also planning to bring in SCD when gut gives a green light!

written by Kyle

submitted in the colitis venting area




moon face, Remicade

12 Responses to Twas The Night Before My 1st Remicade Infusion

  1. OrdinaryWorldWhereRU October 16, 2012 at 4:44 pm #

    Love your writeup! I am a remi person too. I have never had any affects from it. No headaches. Nothing. I already pretty much only drink water and I didn’t load up before any of mine. Now, onto the really important stuff. WOW have you got an awesome infusion center or what?!?!? In my town it’s 2 small rooms with 5 recliners and a single TV in each. Nothing separates us from each other which I can’t stand because it does tend to make me sleepy and some folks want to chat or crank up the tv. When I used to travel a lot for my job I developed this response to sitting in the airplane seat which was basically to fall asleep nearly immediately so that might be why I tend to go to sleep. There is no lunch but I can purchase a snack from a box of individually wrapped danish or some bags of chips. On occasion they will offer a snack for free. I also bring my own bottled water to drink since they don’t sell bottled water and I don’t drink sodas anymore. I am kind of envious of your infusion center to be honest. It’s like the difference between flying coach vs first class.

    • Kyle
      Kyle October 18, 2012 at 9:51 am #

      Haha! Remicade Ballin’ I guess is the life they got me living! I feel very blessed to be where I am at getting my infusions. So how long have you been on Remicade for? How has it been going for you? Are you noticing any significant changes in your UC?

      Thanks for taking the time to comment, and if you ever make it up to the WA, I’d be happy to get you into my infusion center : ) I will ask next time about bring a guest!

      Blessings,

      Kyle

    • Cathy April 30, 2017 at 2:55 pm #

      Hi,
      I was diagnosed with Chrones in November of 2016. I had a resection done where they removed 7 inches of small intestine. I have a job that travels the world as well, I’m not able to do that now which is hard as I’ve done this for over 15 years. I was put on 2000mg pentasa for the last few months. I’m now up to 4000 with not much relief. My blood work is all out if whack still and I’ve list over 40 lbs over the course if the last year and a half. I’ve had issues for almost 2 years but with the job I have, I didn’t have the time to get all the tests needed. I’m on company disability now . My Dr and I have talked and he’s starting me on remicade in 4 days. I’m scared, I admit. I’ve read so many stories. I already have psoriasis and hear it can get worse with this , not to mention all the others scares. I want to thank everyone for posting their stories as I don’t now feel so ashamed and embarrassed. I have had some struggles as everyone else in this forum has had too. I’m blessed to have a great support group and God most if all.

  2. Adam
    Adam October 16, 2012 at 11:06 pm #

    Hey Kyle,

    OK man, eggs, banana, OJ AND hash browns, then a meal served up at the infusion center????

    Who the heck said UC can’t be unfriggin believable????? Are you sure you didn’t dream that whole story up amigo?

    Way way happy that all went well for you at your first treatment. And, way cool that yo set your alarm to 6:14. No reason to set it to boring numbers like 6:15 or 6:30 right!!!

    Hey, wanted to share a link from a 99 person survey we did here a while back all about joint pains. Unfortunately, lots of the UC’ers of the UC’ers of the world feel like they’re 80 or maybe even 90 at times. It’s hard to figure out exactly where it comes from, or when its gonna act up, but the survey results if nothing else will make you feel normal (at least when compared to other UC’ers) so give it a peek. http://www.ihaveuc.com/99-person-colitis-joint-pains-survey/

    MOre than anything else Kyle, way cool of you to keep the positive thinking going on thru all this. That’s gonna help you out more than anything, and I wish you the best in the coming days.

    -Adam

    • Larry Mazzuca February 16, 2016 at 1:54 pm #

      Adam I was diagnosed in 2008 after self treatment for 2 years and then 2 1/2 years of treatment at the VA ! That in and of itself should give you an idea of what I went thru . I was taking 8 mesalamine capsules 3 times daily . My life changed when the attending GI Dr left the VA for private practice in Texas , For the sake of his new patients I hope that he learned something practicing on us at the St Louis VA.. My new Dr Jill Elwing took the time to work with me and give me some of my life back . I had my first Remicade infusion in Dec 2012 . I am able to leave the safety of my house without fear . Miracle , for me , yes !! Good luck . Oh miss your e-mails !!

  3. shelly in maine October 17, 2012 at 3:01 am #

    Good luck Kyle..I too had the super deluxe spoiler treatment…my own room!! Complete with TV,DVD, outdated magazines! Choice of food, but I could never eat! Those people will become family so a little advice…treat them well, too. You’ll spend a lot of time there! People LOVE CHOCOLATE! :-) ( or you’ll find out what they like). I started off with pre meds solumedrol(IV steroid), to reduce allergic reactions, tylenol and benadryl-later gave up the benadryl since it made me too tired and I carried my own if i needed….which I did later.
    FYI….There is also a discount program for those meds. as well.
    Best of luck and health, Shelly

    • Kyle
      Kyle October 17, 2012 at 6:59 am #

      Hey Shelly-

      Gotta love the VIP treatment right? : ) Yes I am aware of the discount program! It’s actually really cool how they look out for you a little with this drug, as you probably know already the price of it is just insane. I actually got clariton rather than benadryl when I was in. They said that the clariton doesn’t make you as drowsy and you can function afterwards, and it honestly didn’t really effect me too much, I was a little tired in the afternoon but nothing like what a benadryl does to me.

      I love the staff there they are awesome! And I am so gonna take your advice and bring them treats! Especially in the Halloween season sure I can score loads of treats for them! Anyways thanks for writing, I will keep you updated on how the treatments are going. Be Well

      Kyle

  4. Teresa October 17, 2012 at 11:08 am #

    Hi Kyle,
    Well I am totally jealous of your infusion center as well. I have a small not very well ventalated room with 4 chairs and no TV but it is close to home and I am thankful to have it.
    I am coming up to my 7th infusion and very greatful for Remicade.
    I was really sick in hospital for the entire month of Feburary 2012 (was diagnosed May 2011) this was my 2nd flare and it was bad and was give 2 options 1 was complete removal of my colon and 2 was Remicade.
    Things are so much better and I find like so many UCers stress is my trigger and enemy so I am working really hard to not only stop UC from running my life but stress as well. One thing for sure this disease does is teach of lots about ourselves.
    You said you were taking probiotics, you might want to check with your GI doctor about that, if you call the Remicade company they will tell you it can be dangerous and also fatal to take probiotics with Remicade because of it suppressing your immunity. You can call the company and ask about your probiotic for peace of mind http://www.remicade.com/
    It is so wonderful to have sites like this, it has been a great comfort to me…strenght in numbers, thanks Adam!
    Best of luck and look forward to hearing more from you

    Teresa

    • Kyle
      Kyle October 18, 2012 at 9:47 am #

      Teresa – I am so excited to hear that the Remicade is working for you. We have very similar experiences with our UC stories as I was put in that same boat of almost losing my colon, but praise the Lord that it was the last option and I still got it : )

      I have a meeting with my GI next week and I will definitely ask him about the probiotics, I informed the hospital about it and they didn’t say anything but it sounds like it is worth checking up on to make sure! Thanks for your wisdom.

      From everything that I have read, stress is HUGE, not only just on our gut but our entire body! Going through everything this past summer, I have taken a whole new approach to my life and that is to keep things as stress-free as possible, honestly, I feel like a new man, I am trying to keep myself as calm and relaxed as possible. Big thing for me is just giving all controls to the Lord, trusting Him first, and knowing His plans and ways are far greater than mine, and it has been working, I am so much more “chill” these days! I don’t get worked up over the little things anymore because in the end those things don’t matter, we stress too much over little things. I hope life is relaxed for you and it will continue for a LONG TIME : )

      Thanks for taking the time to write, just like you I am so blessed by this site, it has been a huge encouragement to me during this challenging season of my life. I appreciate you taking the time to write me and hope for continued success with the “Remi” : )

      Blessings,
      Kyle

  5. Michelle October 5, 2013 at 8:11 am #

    Thanks for this site and for the info on your first Remicade infusion! I am scheduled for my first treatment this Monday and have no idea what to expect. Currently on 35mg prednisone and can’t wait to get off of it. I haven’t slept soundly in weeks – first from the UC symptoms, now from the prednisone. Prayers appreciated!

  6. Naomi Jones April 2, 2015 at 7:46 pm #

    Thanks for this post. I was diagnosed with Crohn’s Disease at the beginning of March. It went undetected for 15 years and the toll it has taken on my intestine puts me into the moderate to severe category. I have my first Remicade infusion tomorrow and I appreciate your lighthearted insight.

  7. Maria Westrick September 8, 2015 at 4:31 pm #

    I have my first remicade infusion tomorrow. Thank you for sharing your story. I am very anxious. I was diagnosed with Crohns in 2008. I’ve manage very well until June 2015. I’m in the moderate/severe category in my small and large intestine. It’s been a long summer. Hopefully this course of treatment let’s me have my life back. Thank you for your story.

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