Hi ya’ll! My name is April and I am 26 years old from Southeast Missouri. I currently work part-time at a local gym as a front desk/member services/receptionist. I LOVE my job and everything about it. I love working in customer service and have always enjoyed helping others. My greatest satisfaction from my job comes from completely winning over a “grumpy” customer and helping them to be able to leave with a smile. While this is the job that I do to help pay the bills. I have another “job” that I love even more. I am a volunteer who regularly spends my days teaching people the bible. For the past 3 years, my husband and I have been learning Spanish in order to expand our ministry, and help even more people in our community to learn what the bible really teaches. This gives us great satisfaction and purpose. We even have a goal of being able to serve together in another land some day, that is if my health allows .
My UC symptoms currently include fairly regular and “normal” bowels. However, for the past week or so, I have noticed mucous and slight blood in my stools, which is what brought me here to this site…. Which I’m so thankful that I found.
April’s Remicade Story:
Wow, where to begin? Well, I was diagnosed with UC at the age of 20. After about 2-3 months of major gas/bloating/mucous/pain and lots of blood loss, I finally went to see a GI and was scheduled for a colonoscopy. After I woke up from my anesthesia, my doctor walked into my recovery room, opened a chart and very matter-of-factly said, “well, looks like you have Ulcerative Colitis, we’ll get ya started on some meds and go from there.” And that was literally it. I had no idea what Ulcerative Colitis was, that this was a disease that I would have deal with for the rest of my life, and that the worst wasn’t over.
I began over the counter meds and suppositories immediately, however, after the torturous colon prep for my colonoscopy, I went downhill fast. I couldn’t keep any food down, I lost a lot of weight very quickly and was losing even more blood. I could barely move from my bed to the bathroom without tiring out. And I was probably still going to the bathroom at least 20 times a day with meds. After repeated calls to my GI, and after repeatedly being told to just wait it out to see if the meds improve anything, I felt hopeless. It wasn’t until I had a visit from two very good friends who almost immediately upon seeing me said, “Get to a hospital, today!” So my dad packed up my things and we drove 2 hours to a hospital in St. Louis trying to beat an ice-storm that was coming in that night…. We barely made it. However, this was the best thing that ever happened. I met a new GI doctor who actually listened to us, who saw how scared I was, and really took time to answer every single question that my family was throwing at him. I love that man. After 2 weeks in the hospital, a TPN bag, IV steroids, IV iron to build up my blood and lots of vegetable broth later, I was finally able to go home in somewhat stable condition. I went home on Asacol and Lialda. I felt everything starting to look up. I went back to work, started to have somewhat of a social life again and started feeling better for awhile, but over 2 months later I ended up back in the hospital for a second time and my UC symptoms came back with a vengeance.
Now the only two options I had were emergency surgery to remove my colon (what 21 year old girl wants that?) or to try this drug called Remicade. Remicade could be the miracle I needed, the only catch? It is crazy expensive. Also, IF it works then you are stuck with it until it stops working for you because you can’t go off of it otherwise your body will build up an immunity to it. Which could be in a year, 5 years, or 20 years down the road. So, what did I choose? Well, now we are 5 years down the road, and I drive 2 hours to STL every 8 weeks to sit for my Remicade infusion. I honestly don’t have many complaints about remicaid because it did literally save my life…and my colon (which my colon thanks you for, Remicade). Also, I have been technically in remission for the past 5 years while taking it. I really don’t think about even having UC until I have to get my infusions. With all that being said……I DONT WANT TO TAKE REMICADE ANYMORE! :-(
I know, everyone who reads this will probably think I’m crazy.
What?! You are virtually symptom free, you can eat whatever you want, and you don’t have to take any other medications?? You are loca for wanting to mess with such a good thing! Believe me, I’ve heard it all from my family. They were the ones who were there with me when I lost 30 pounds, turning yellow with jaundice, so weak that I couldn’t even make it to the bathroom by myself, doctors threatening blood transfusions and emergency surgery. They are scared. And truthfully, I’m scared too. I wish that I would have had the time to try some alternative therapies like diet change and natural medications before I got stuck on this Remicade train. But at the time it was literally do or die.
Now I’m an adult with a loving, supportive husband. A woman who wants to travel and set and reach new goals with my husband. A woman who just may have children some day and doesn’t want to worry about what the effects Remicade will have on my unborn children. A woman who doesn’t want to be held back by being “stuck” in one place for fear of not being able to find a job with decent enough insurance to cover her Remicade costs. I realize I have to be humble, and recognize my limitations. That realistically there are just some things that I may not be able to do because of my UC diagnosis, but if there is a chance of making a change, I don’t want to miss out.
Whew! Sorry for the long rambling. For those of you who are still with me reading this, I want to ask several questions….
-Are there any out there who have successfully been on Remicade for a substantial amount of time who have weaned themselves off of it with success?
-If you had to go back on Remicade, how long were you off of it, and did it still work just as well when you went back to it?
-What alternative therapies have you tried and with what results?
-How did you approach your GI with your concerns?
-Are there any UC sufferers who are currently living in a country other than the US with limited health resources who are controlling their UC with other methods like diet or natural things?
I really want to try at least maybe spacing out my infusions a couple of weeks longer and seeing how I do, but I just don’t know.
Any help/comments/suggestions would be greatly appreciated! Thank you thank you thank you!
I’ve been on Remicade every 8 weeks for 5 years and it is working very well to control my UC. The few negative side effects that I experience are joint pain, back spasms every now and then, a weird eczema-ish rash in random places on my body, and fatigue.
I just recently started a major diet overhaul called Whole30. I am actually 37 days in and have plans to continue it for awhile, at least until my next infusion in a couple of weeks. I have removed all dairy, legumes, grains, and sugar from my diet. Almost immediately I saw a positive change in my energy level. Also, that weird eczema-ish rash that I have had since starting Remicade is started to clear up.
Overall I generally feel better, however about a week and a half ago, I started to notice a little blood and mucous in my stools. This really spooked me because I thought that I have been eating so well and plus I am still taking Remicade so what in the world would bring this flare on now?? So far, I don’t have any pain, just the noticeable “addition” to my stools. I thought that it could be that I am eating a lot more raw veggies and fruits than I used to, and this could be giving me some gut distress. But also I thought, “hey! I’m not eating Mcdonalds, Taco Bell , and Burger King every week like before so why now?”
I was really hoping that this whole30 approach to eating could be what really helps me get off the Remicade, but now I’m starting to doubt myself. Has anyone else tried the whole30 as a way to control their symptoms and with what results? Any reply or comment would be helpful.
written by April
submitted in the colitis venting area