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