First Remicade Infusion (Indeterminate Colitis)

Introduction:

Hello all I am a married male in my 40s living in the US in the state of Virginia. I have always been very successful in business until my little visitor UC came along. Like most I am including a story of years of experiences of dealing with this treatable but not curable (in my case) disease.

Colitis Symptoms:
Cramps,bloating,gas,bleeding during defication, pain in the abdomen,joint pains, shoulder pain, aching knuckles, headaches,digestive issues,food in-tolerances.

First Remicade Infusion:

Today was the start of a new treatment plan.
In 2007 I was really sick for weeks on end with bad abdominal pain bleeding during defecation and extreme fatigue. After just hoping it was the flu, my symptoms finally got so bad I had to resort to my wife calling 911 because I was in intense pain. Rescue arrived and transported me to the hospital. They administered morphine on the way, but it brought little relief. The pain was so intense, I was unable to breathe. I would almost blackout from the lack of airflow, only to hear the rescue workers voices fading in and out. They continually yelled at me telling me to breathe. I only wish I could have.
After arriving, I was in the ER in a trauma room. They ran multiple tests on me; with all of them coming back “inconclusive”.

This prompted a surgeon to insist

that he needed to do

an exploratory abdominal surgery on me.

The pain was still so high they worried I could not handle much more at that level. My wife consented because I could not sign anything at all. The surgery found only that my colon was inflamed, but not before my abdomen was cut open top to bottom. Even after a 12-inch incision and the Dr. rooting through all my internal organs, there was still no diagnosis. Thank the Lord I had my wife and friends by my side in the ER.
I woke up hooked to a variety of IV’s, including the morphine drip with the push button in my hand. I spent 8 days in the hospital. On the 7th day, they performed a colonoscopy and discovered I had a severe case of ulcerative colitis. Recovery was about 7 weeks before I could work at all and the treatment for the UC was not really working. The bleeding in my colon was stopped but I was still in intense pain. First treatment was Asacol and a high dosage of daily steroids. Only out of the hospital for a couple months, I realized how volatile my condition was. I once again got very, very sick in a matter of 2 days presenting symptoms of bleeding, cramping, fatigue, light-headedness and more before ending up in my doctor’s office for him to admit me in the hospital again. I was happy to be treated with an IV therapy of steroids for a few days and felt better and was released. My GI doctor finally took me off the Asacol and put me on 6MP or Mecaptopurine and Lialda along with the steroids. I battled the flare for a year before the UC finally went into remission. Feeling vindicated from the disease, I lived that year feeling great. I was so happy.

After one year the disease was back with a vengeance and back on the steroids I went. Of course the diagnostic process for all of this is a colonoscopy (what fun). This time, the process was further complicated by an abdominal hernia I developed related to the surgery I had. The doctors at this point treated me for my conditions and I never really experienced a full remission, in my opinion.

Being on such a high dose of steroids

made me gain about 60 pounds

and had some nasty side effects.

Never really being sick and now realizing that I have come to grips with the effects of this incurable disease made me feel so hopeless. The hernia restricts my healthy lifestyle and the UC affects more than I want to admit. People have always seen me as strong, successful and healthy and now I am feeling like some of those things have been stripped from me.
So here I am, only 5 years later facing the disease head on again. I am only in my 40’s and had to stop work last year due to my health. My GI doctor did his standard colonoscopy on me and adjusted my meds. He did not really seem to want to do more and just left me feeling sick and not knowing what to do. I went to my family Dr. and he sent me for a second opinion. That Dr. referred me to a university (about 2.5 hours away) for an expert opinion. The university was a great experience. This meant more tests and yet another colonoscopy, but if it helps me obtain better life, it’s all worth it.

My disease has now been reclassified

as “Indeterminate colitis”

and my new Dr. says I am presenting

the symptoms of Crohns disease and UC.

It was also discovered that the therapy I am on is no longer working and I am living with active disease. The doses of meds cannot go higher without risk of organ damage, so I was presented with the option of biologics for the next step. After much research I decided with my Dr. that Remicade would be the best option for me. I have read all about the drug, side effects and benefits from its treatment.
So I wanted to write about my experience with “Indeterminate colitis” and my first day of treatment to help others understand better, as I was afforded that option from the many bloggers out there. Please do not minimize what you are going through. If you write about it, you may be helping someone else.

I had my first Remicade treatment today.

 

I showed up to the oncology center with my loving wife. Yes, it was a little unnerving, but they made me feel comfortable. There were reclining chairs and two large screen TVs mounted on the wall in a fairly large room. The nurse asked me to sit where I felt the best and then proceeded to get me set up. The IV was set up with ease after she found one of my hiding veins and they started pre-meds on me. The pre-meds were pretty standard (Benadryl and Tylenol) administered in the IV to prevent a reaction to the Remicade. The nurse asked me if I wanted to watch a movie. My wife helped me pick one out and they put it in for us. The pre-meds made me cold after about a half hour, so my wife got me one of the facility’s blankets and a pillow. They had them plentifully displayed on shelves with the movies for patients. Maybe 45 minutes went by before the nurse started the actual Remicade. The longer the IV ran, the colder I got; but that may ju st be from sitting still as well. The hand my IV was in was a bit stiff and colder than the rest of my body. A couple hours into the infusion I got really cold and had to ask my wife to drape my coat over me along with the blanket. I did warm up, so all was well. I did not sleep during the infusion, but that is likely because I suffer from insomnia as well. It would be very easy to sleep during the treatment and I would recommend it if you can. I did feel groggy, but was unable to sleep myself.
When the infusion was over it had taken about 4 hours and from what I understand this is something is better when not rushed. They unhooked me, asked a few questions about how I felt, and I was on my way. Upon leaving I noted that my shoulder muscles and bones ached a little, but nothing major. My wife picked up some lunch for us and drove me home where she spent the day with me to monitor how this goes the first time. After lunch, I wanted to document how I felt, but was in pain. I took some meds and that helped me to fall asleep for a little over an hour. The sleep I had was deep; it felt like I had slept for several hours really. For the rest of the day I have just felt a little tired, weak, and overall kind of sick. For my first day I have just taken it really easy and not felt like doing much. I feel optimistic about the treatment (like my body accepted it ok) but I suppose only time will tell. My next treatment will be in two weeks and I am looking forward to it.
I’ve been blessed by all of the information I obtained from blogs and from doctors explaining the process to me. The care I have received recently from my doctors and nurses has been the best I’ve ever had. It helps beyond measure that my wife is by my side, step by step. Family support is so valuable, I have discovered. It is my hope and prayer that this post will help someone else who is searching for answers or information about Remicade or Indeterminate Colitis.
I would like to personally thank all the people that have written and shared their story online, as it has helped me so much. Thank you all. I hope you will have better and blessed days ahead of you.

Sincerely

Eagles lover

(the bird). Call me “eagles” for short if you must…….LOL! 




Remicade

9 Responses to First Remicade Infusion (Indeterminate Colitis)

  1. Bev February 21, 2012 at 4:38 pm #

    Good luck.

    I am looking forward to hearing if tis works for you, my friend! Please do keep us posted on your progress.

    Cheers,
    Bev:)

    • Eagles February 22, 2012 at 1:14 am #

      Bev

      I will keep you posted.
      Thanks for reading and the well wishes. Have a good day.
      Eagles :)

  2. OrdinaryWorldWhereRU February 21, 2012 at 4:51 pm #

    Thanks for posting all of your details. I am in the same club so you have company. Your infusion facility sounds nicer than mine but I live in a small metro area. I always get cold during mine but it goes away shortly after. I was really sleepy after the first two visits but that ended. I do usually fall asleep while it is going on since I am cold and the place is quiet. So nice to have some company in this. It has helped me a lot. Not fully in remission but a lot better. No noticeable side effects so far. I hope you keep posting updates.

    • Eagles February 22, 2012 at 1:11 am #

      Hi
      Thanks for reading and writing, i appreciate it!
      It has been 5 days since my first infusion now. For the first two days i was wiped out and felt really fatigued and weak,I did not even leave the house. My hand joints were hurting before the treatment anyhow but that was due to the disease really. Now my hand joints get cold on the inside and it is migratory and moves from one hand to the other and sometimes in my toes and shoulders. So now my hand and other joints ache and are really cold at times. In my experience the first Remicade infusion made me really sick and weak/fatigued for 4 days but i am in a really bad flare right now as well. I see my doctor at the university next week so i will report all the side affects to her. Still to early for me to tell if it is doing anyhting for me but i remain optimistic about it. Oh yes i forgot to mention the crampy abdominal feelings that i experienced for a few days after infusion.

      perserverence to the end :)
      Eagles

  3. Megan February 21, 2012 at 10:48 pm #

    Good luck – I pray it all gets easier and easier for you! I am a year into being on Remicade now – and I can even drive myself too and from each infusion (every 8 weeks). I do lay low for the rest of the day – making no plans but to catch up on TV….but all in all its good! Hope you are on the path to getting your life back!

  4. Eagles February 22, 2012 at 1:22 am #

    Megan
    I receive those prayers and i thank you for them. I just am hopefull that this will me my next step in recovering some of my life again.
    Thanks for the nice words and have a good day.

    Eagles

  5. David February 23, 2012 at 6:05 pm #

    Hi, good to hear your story. your defiantly not alone threw all this. this disease really sucks!! some meds work for some people and not for others. I finally decided to go with the remicade treatment as well. I had moderate to sever uc and I have to say remicade is kicking its ass! the first treatment affected me the same way it did you. the second one will be allot easier, I know it was for me. I get my treatments every 8 weeks now. my seconded 8 week treatment is in march. I have nothing but good things to say about remicade. It took a few treatments to really notice a difference for me, but now I’m down to going to the bathroom only two to three times a day. No blood or mucus, no abdominal cramping. I do have joint pain but that’s just this disease at its finest. I hope this helps you, I know this site helped me when I first found it. I hope you feel better and you whip this crappy sickness soon.

  6. Matt February 25, 2012 at 10:47 am #

    Eagles – Im 35 and am on my 26th remicade infusion (every 8 wks) It was the only thing that worked for me and apart from feeling really tiredfor24hrs afterwards I have no side effects. My one tip would be that if it works for you, stay on it. I got to almost a year of no symptoms and no evidence of th disease during colonoscopy. My GI decided to take me off remicade and after 4 months, I flared again. Problem is, once you come off it, your body develops a defence. I’m back on it no but it’s about 30% effective as it was and I can’t seem to get myself into full remission.

    Good luck

  7. Judith September 17, 2012 at 9:19 am #

    I read your account with great interest as I have also been defined as having indeterminate colitis. So far the meds I am on are working somewhat. I have had three flare-ups in the past two years but none as severe as the first time when I felt that I was dying. My first doctor only said ” you are a very sick woman” and left it at that. My last coonoscopy looked good and the new dr. said it looked as if I was in deep remission. However this was three months ago and now I feel that something is happening again with frequent cramping and trips to the loo but so far no terrible pain or bleeding. I wish there was a way to knock out a flare-up before it gets a start.
    You are very brave for a young man. I am sure that it’s depressing to be so ill when so young. My colitis didnt start until I had retired from teaching and then came on as my youngest son was dying. I felt it was just stress at first so ignored it. I am 68 now but not nearly ready to give up and be sick.
    How are you doing after the remicade infusions. I see nothing after Feb. 25th. I am sending you all my best juju and love.

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