I first started getting sick in Jan of 2013, and no one could tell me what was wrong. I had all the signs and initially thought that it was colon Cancer. My father had colon cancer and I had all the same signs. Until a trip to the emergency when I was in so much pain and all the test showed nothing, that the doc on duty felt something wasn’t right and he snuck me in the next day to the Gastro Specialists schedule. Caused lots of “hiccups” when I showed up, but got in for my first scope. They started treating me for infectious colitis, 3 rounds of different antibiotics. Then another scope and everything was getting worse, so they tried prednisone for a while. I was still getting worse so they tried Immuran, and that didn’t work. All along also taking Pentasa
Finally tried Remicade and after the loading doses I was still getting sicker and it was still growing. They decided to double it up so that I am currently taking 1200mg every 4 weeks.
Since that change (in December 2013) I have been feeling good!
Some more about me:
I am a single father (divorced) of 2 little girls. I live in Alberta, Canada and I work in the IT industry but my passions are my girls and the outdoors. I am an avid outdoors-man and a DIY’er. I spent my time away from work doing all the things that my girls want to do and whenever possible we are outside, working on projects, hunting, camping, fishing, hiking, mountain biking etc.
Current Colitis Symptoms:
No Symptoms currently – taking 1200mg of Remicade every 4 weeks
Remicade and Weight Control
My story… Well everything was fine then all of a sudden it wasn’t.
My stress levels were through the roof pretty low self esteem and a really bad marriage.
I was getting sicker every day and I had no one to talk to or lean on ( bad marriage – no support). Nothing really started changing for the good until I found out (understood) what my stressor was and did something to change it. I finally realized that my marriage was killing me and was the cause of all my stress. I was at the height of my sickness and told my wife I wanted a divorce. She moved out and 3 days later I started feeling better! Then the meds started to work as well!
My question is around weight gain and control.
Before I was diagnosed I was very seriously working to get in shape again. Then spent a full year in a flare and completely uncontrolled with lots of meds etc.
So now I am feeling great again, however I am taking Remicade at a double dose and every 4 weeks.
For the life of me I cannot lose any weight, or it flucuates within a 10lb range.
Generally I run at least 30 mintutes a day for 3-4 days a week, when I cannot get to the gym and on my gym days (3-4 times a week) I workout with 30-45 minutes of cardio as well I lift weights. I lift fairly heavy as well and do full sets (5-6 sets) of 8-12 reps and at least 3 exercises per body part.
I am eating pretty clean as well. I am eating 4-5 meals a day all weighed out and proportioned.
I am following the same program that I followed before I was sick and it worked tremendously. However now I see no change other than I feel healthier than ever, and stronger than ever.
So has anyone found issues with weight loss with Remicade?
I’ve never had a problem with food, as my UC was brought on my stress (almost 99% positive on that). I do eat fairly clean and my daughters are celiac, so I live gluten free. Wondering what the chances are that I can eat as I do now while on Remicade once I come off of it?
Or is there a chance that I will come off of Remicade and be symptom free!
submitted by Steve J
Thanks so much for sharing your story! Seriously, it’s super great to hear from someone like you who has been able to figure out the stressor that’s hurting your UC and even more importantly to hear that you took a very big step to get things on the mend for you. That’s pretty amazing, and thanks for being so brave to share those details as you might be able to open the eyes to many others.
You’re question is another super tuffie for me. There’s for sure a chance that you will be able to eat what you are currently eating once off the Remicade. I wouldn’t say a 100% chance of it, but its possible. Since we are all different to some degree, you very well will be able to test if the stress was the sole reason for your symptoms if you like. If it was me, I’d stick to at least some restrictions on the diet side when making the transition. Maybe going with your celiac program your daughters follow to start.
Please let us know how things go moving forward, and once again GREAT job on reducing/eliminating the big stresses for you. Way Way Cool!
Also, maybe a cool article from the World Journal of Gastroenterology which might be neat considering your family’s IBD mix:
I first started getting sick in Jan of 2013, and no one could tell me what was wrong.