- Joined
- Jan 17, 2016
- Messages
- 1
I was diagnosed with Crohn's disease back in 2004 when I was 14 years old. I can't say that it affected me terribly back then, I managed it mostly with diet but really didn't have too many issues. By 'too many issues' I mean that I routinely threw up at friends houses with not too much warning... I started noticing some changes probably around 2009 or so, I had always been skinny and around that time I put on a good amount of weight and noticed that I started getting bloated after I ate certain things. For years I didn't do too much about it, tried new diets and did cleanses every once and a while.
In 2013 things changed, I was throwing up a lot more and started experiencing more pain that I had previously. I went to see a GI who talked to me about getting on Remicade. He had done and MRI on me and had seen some strictures. After some research I decided this would be a good option so I started my treatment. Around my third induction dose (which happened to be around Thanksgiving) I started to get sick, I threw up everything I ate, stopped eating, would feel better, eat again, and start the cycle all over again. I think this lasted for four days. By Monday I was a little sick of getting sick and called my dr asking advice. Now at this point I noticed a change in the way my body felt and was able to eat and not throw up, though they still requested that I get emergency X-rays to make sure there were no blockages. There was nothing.
I continued to get Remicade and didn't have any issues. I moved to Austin, TX and continued my treatment with a new GI. I continued to bounce on and off of diets that worked but were so hard to stick to (please tell me I'm not the only one who does this....) that I would give up and feel like total doo doo. I started working with a Nutritionist who is amazing. I followed her diet and felt amazing. After being on her diet (VERY low sugar, gluten free, low dairy, lots of meat and veg's) for a month I woke up one day and starting vomiting, I couldnt hold anything but water down and felt this insane pain that felt as if my stomach was filling up with air and then that air was slowly getting out and I could literally hear the bubbling as if that was happening (fyi, still don't know what this was...). I ended up going to Urgent Care where the Dr told me I had a stomach bug and he wasn't worried (yeah thanks, you're definitely wrong). Eventually I couldn't hold water down anymore and ended up in the ER, knowing at the very least that I needed fluids. They did a CT and pretty much came up with nothing other than that I had some active inflammation which could have been caused by a partial blockage (not quite sure how accurate that is, am I the only one who gets lost when dr's are talking to you?). I left that night with pain med, anti-nausea meds, and Prednisone.
I switched GI's at this point due to a lack of communication and continued my diet. About a month later I ended up throwing up about every 30-60 min from 1:00am-6:00am one day. Dr advised me to go to the ER again, which I did. VERY similar to what happened to me three years ago around Thanksgiving, and the month before. Did another CT scan and a result of more inflammation and likely partial blockage came up.
At this point my Dr and I did various testing, looking at the levels of Remicade in my system which ended up being normal, with no antibodies built up. Now he's unsure what to do with me and I'll be seeing Dr. Rubin in Chicago (Crohn's specialist) next month to see what his recommendations are. He's put me on a low-res diet and my cold pressed juicer has been my saving grace, allowing me to get actual veggies in my diet. However, with all that's been going on I've been totally discouraged Diet-wise and don't really follow anything (I know, horrible...) and feel bad so often.
I'm looking forward to getting answers soon, but at this point I've been very happy to stay out of the ER for four months.
In 2013 things changed, I was throwing up a lot more and started experiencing more pain that I had previously. I went to see a GI who talked to me about getting on Remicade. He had done and MRI on me and had seen some strictures. After some research I decided this would be a good option so I started my treatment. Around my third induction dose (which happened to be around Thanksgiving) I started to get sick, I threw up everything I ate, stopped eating, would feel better, eat again, and start the cycle all over again. I think this lasted for four days. By Monday I was a little sick of getting sick and called my dr asking advice. Now at this point I noticed a change in the way my body felt and was able to eat and not throw up, though they still requested that I get emergency X-rays to make sure there were no blockages. There was nothing.
I continued to get Remicade and didn't have any issues. I moved to Austin, TX and continued my treatment with a new GI. I continued to bounce on and off of diets that worked but were so hard to stick to (please tell me I'm not the only one who does this....) that I would give up and feel like total doo doo. I started working with a Nutritionist who is amazing. I followed her diet and felt amazing. After being on her diet (VERY low sugar, gluten free, low dairy, lots of meat and veg's) for a month I woke up one day and starting vomiting, I couldnt hold anything but water down and felt this insane pain that felt as if my stomach was filling up with air and then that air was slowly getting out and I could literally hear the bubbling as if that was happening (fyi, still don't know what this was...). I ended up going to Urgent Care where the Dr told me I had a stomach bug and he wasn't worried (yeah thanks, you're definitely wrong). Eventually I couldn't hold water down anymore and ended up in the ER, knowing at the very least that I needed fluids. They did a CT and pretty much came up with nothing other than that I had some active inflammation which could have been caused by a partial blockage (not quite sure how accurate that is, am I the only one who gets lost when dr's are talking to you?). I left that night with pain med, anti-nausea meds, and Prednisone.
I switched GI's at this point due to a lack of communication and continued my diet. About a month later I ended up throwing up about every 30-60 min from 1:00am-6:00am one day. Dr advised me to go to the ER again, which I did. VERY similar to what happened to me three years ago around Thanksgiving, and the month before. Did another CT scan and a result of more inflammation and likely partial blockage came up.
At this point my Dr and I did various testing, looking at the levels of Remicade in my system which ended up being normal, with no antibodies built up. Now he's unsure what to do with me and I'll be seeing Dr. Rubin in Chicago (Crohn's specialist) next month to see what his recommendations are. He's put me on a low-res diet and my cold pressed juicer has been my saving grace, allowing me to get actual veggies in my diet. However, with all that's been going on I've been totally discouraged Diet-wise and don't really follow anything (I know, horrible...) and feel bad so often.
I'm looking forward to getting answers soon, but at this point I've been very happy to stay out of the ER for four months.
:hug:
I hope Dr. Rubin is able to get you some answers!
