Hi, my name is Jason, currently a 26 year old college student. I've been struggling with some form of IBD for over two years now.
It started towards the end of 2009 with just mild intermittent diarrhea that I didn't think much of. I had recently just quit my job and moved to San Diego to go back to school, didn't have any insurance, and was stubborn. My symptoms slowly progressed to include bloody stool and sometimes cramping with diarrhea becoming more frequent but nothing unbearable. I went to my schools doctor a few times and got the old "could be a lot of things" and sent me home with a few stool sample tests which came up inconclusive.
Around the fall of 2010 it hit me like a bag of bricks and kept getting worse. I started vomiting and cramping in the morning, having very frequent bowel moments (always bloody diarrhea), pain if I ate too much, loss of appetite, severe pain if I had t go but was not in a situation here I could and had to hold it, and a combination of constipation and diarrhea at the same time. I started dropping weight very quickly towards the end of the year, I'm normally 6'2" 210lbs but by December 2010 I was 155lbs.
Up to this point it had only casually informed my family that something was going on and still was hoping to stubbornly 'ride it out'. Needless to say when they saw me over the holidays they were worried, that and my already worried GF gave them an ear-full. My older brother and sister-in-law scraped together some money and started paying for health insurance for me to figure out what is wrong. Something I am endlessly grateful for.
I saw an internal medicine doctor in January who gave me another round of stool sample tests as well as blood tests. After feeling around in my abdomen he felt a very large lump painful lump on the right side he referred me to a gastroenterologist.
My current doctor, Dr. Patel at UCSD, has been great. He had me do an abdominal CT and performed a colonoscopy to determine I had IBD. He has been unable to form a diagnosis (crohns or UC) and has been limited by my insurance as well as the inherent difficulty differentiating between the two.
I've been on a steady ramp up of meds to try to keep symptoms under control starting with a large dose of prednisone with balsalizide. On the high dose of prednisone was the best I've felt, and I experienced mild side effects (minor moodiness, insomnia) with none of the heavy fat gain/puffy face. I was back to 200lbs in 4 months, my stool wasn't solid but bowel movement frequency was under control, and the bleeding (and anemia) had stopped. But that couldn't last. He had explained the different tiers of treatment and recommended I get on remicade to get me off of the prednisone asap, so I started bi-monthly infusions of remicade after some stressing over the cost.
I noticed some improvement on the remicade but my condition deteriorated when I started to taper off the prednisone, particularly right before my next infusion. The next few months were attempts at playing with the dosages/frequency to keep me from flaring when the remicade levels had dropped while keeping me on a lower dose of prednisone.
Which brings me to where I'm at now. Still on prednisone, still on balsalizide disodium. My doctor started me on mercaptopurine in hopes that it and the remicade would allow me to get off the prednisone. On a semi-related note, oddly enough the lab I worked in prior to my IBD manufactured mercaptopurine for cancer research, in that setting it was one of the chemicals we had to take special care not to come in contact with. Now I'm popping the pills like it's no big deal. Unfortunately, the insurance has refused to pay for any higher/more frequent doses of remicade so it has been over two months since my last infusion. So now my doctors office is having to fight with them to show I need it.
So basically I've gone through, and am currently on just about every type of medication available for this condition and an antibiotic with prednisone being the only one I fully respond to, and the only one I can't say on for the duration. I've been on prednisone for nearly a solid year now and I'm now experiencing constant tachycardia (110-120bpm resting heart rate). If insurance is unwilling to pay for my remicade infusions (or if I don't respond to the higher dose of remicade and mercaptopurine) the only options I have left are clinical trials (and the inherent risks of getting a placebo) or surgery (still not knowing whether I have crohns or UC).
So I've come here to see what other people have done in situations like mine, maybe get some advice, and talk to people who know more about this than I do.
p.s. sorry for writing a book, didn't plan on it being that long.
It started towards the end of 2009 with just mild intermittent diarrhea that I didn't think much of. I had recently just quit my job and moved to San Diego to go back to school, didn't have any insurance, and was stubborn. My symptoms slowly progressed to include bloody stool and sometimes cramping with diarrhea becoming more frequent but nothing unbearable. I went to my schools doctor a few times and got the old "could be a lot of things" and sent me home with a few stool sample tests which came up inconclusive.
Around the fall of 2010 it hit me like a bag of bricks and kept getting worse. I started vomiting and cramping in the morning, having very frequent bowel moments (always bloody diarrhea), pain if I ate too much, loss of appetite, severe pain if I had t go but was not in a situation here I could and had to hold it, and a combination of constipation and diarrhea at the same time. I started dropping weight very quickly towards the end of the year, I'm normally 6'2" 210lbs but by December 2010 I was 155lbs.
Up to this point it had only casually informed my family that something was going on and still was hoping to stubbornly 'ride it out'. Needless to say when they saw me over the holidays they were worried, that and my already worried GF gave them an ear-full. My older brother and sister-in-law scraped together some money and started paying for health insurance for me to figure out what is wrong. Something I am endlessly grateful for.
I saw an internal medicine doctor in January who gave me another round of stool sample tests as well as blood tests. After feeling around in my abdomen he felt a very large lump painful lump on the right side he referred me to a gastroenterologist.
My current doctor, Dr. Patel at UCSD, has been great. He had me do an abdominal CT and performed a colonoscopy to determine I had IBD. He has been unable to form a diagnosis (crohns or UC) and has been limited by my insurance as well as the inherent difficulty differentiating between the two.
I've been on a steady ramp up of meds to try to keep symptoms under control starting with a large dose of prednisone with balsalizide. On the high dose of prednisone was the best I've felt, and I experienced mild side effects (minor moodiness, insomnia) with none of the heavy fat gain/puffy face. I was back to 200lbs in 4 months, my stool wasn't solid but bowel movement frequency was under control, and the bleeding (and anemia) had stopped. But that couldn't last. He had explained the different tiers of treatment and recommended I get on remicade to get me off of the prednisone asap, so I started bi-monthly infusions of remicade after some stressing over the cost.
I noticed some improvement on the remicade but my condition deteriorated when I started to taper off the prednisone, particularly right before my next infusion. The next few months were attempts at playing with the dosages/frequency to keep me from flaring when the remicade levels had dropped while keeping me on a lower dose of prednisone.
Which brings me to where I'm at now. Still on prednisone, still on balsalizide disodium. My doctor started me on mercaptopurine in hopes that it and the remicade would allow me to get off the prednisone. On a semi-related note, oddly enough the lab I worked in prior to my IBD manufactured mercaptopurine for cancer research, in that setting it was one of the chemicals we had to take special care not to come in contact with. Now I'm popping the pills like it's no big deal. Unfortunately, the insurance has refused to pay for any higher/more frequent doses of remicade so it has been over two months since my last infusion. So now my doctors office is having to fight with them to show I need it.
So basically I've gone through, and am currently on just about every type of medication available for this condition and an antibiotic with prednisone being the only one I fully respond to, and the only one I can't say on for the duration. I've been on prednisone for nearly a solid year now and I'm now experiencing constant tachycardia (110-120bpm resting heart rate). If insurance is unwilling to pay for my remicade infusions (or if I don't respond to the higher dose of remicade and mercaptopurine) the only options I have left are clinical trials (and the inherent risks of getting a placebo) or surgery (still not knowing whether I have crohns or UC).
So I've come here to see what other people have done in situations like mine, maybe get some advice, and talk to people who know more about this than I do.
p.s. sorry for writing a book, didn't plan on it being that long.
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I hope things can get sorted for you soon and please keep us updated.
