Hey y’all!
Question: Who here has had active Crohn’s in the small bowel? What were your symptoms? What treatment are you on? Sorry to come out with so many questions but I’ve always had CD in my ileocecal area, as far as I know so just trying to learn more.
Background: I was diagnosed back in 2005 at 30 yo. According to my GI, I had been living with CD for at least 4-5 years because I already had an ileocecal stricture and came to the ER with a partial obstruction because my stupid PCP kept telling me I just had a virus. Even though I told him multiple times I suspected CD because my mother, my uncle and both of my brothers have it so I recognize the symptoms. He actually had the audacity to ask me if I wasn’t “sure if it was ‘female’ problems”.
but I digress. Long story short, I spent 8 days hospitalized and was treated with Prednisone, Flagyl, Cipro and IV fluids. Sent home with Asacol, Prednisone, and Flagyl because I wound up having an allergic reaction to Cipro. Then went on to take Imuran only for maintenance after the Asacol stopped working (it was exiting in the same form it had entered...) After 3 1/2 years on Imuran (and several dose increases) I was not feeling any better on Imuran than off it so I dropped all treatment around 2010. Stayed pretty well under control with very short, occasional flares until August 2017. Got a new GI (because I moved too far from my beloved original one) and went to him with a pretty significant flare (severe constipation, cramping, extreme bloating). He immediately put me on Entocort EC until we could do a colonoscopy. Instant relief! Colonoscopy showed old damage (stricture) but no active disease. So then we did a MRE, which showed active disease at the end of the small bowel. Got me off the Entocort and onto Humira! Oh what an improvement! I didn’t realize how sick I was until I started getting better. Then BOOM! Within 3 short months, allergic reaction so bad he pulled me off the Humira and prescribed Remicade with Imuran. But I never went through with it. I chickened out due to I hate Imuran and I’m terrified of Remicade. Went about my life feeling pretty decent until June of this year. Brand new symptom: straight diarrhea (which I’ve never had even when first diagnosed). After a couple of months of that I broke down and made an appointment. Admitting to him that I chickened out on the recommended treatment from 2017. He puts me back on Entocort but shockingly NO RELIEF! So next up, colonoscopy. Again, no active disease in colon or ileocecal valve. But now I’m getting more symptoms: cramping, bloating and continuing diarrhea. Also, immediately following colonoscopy, I go home and eat breakfast. Before I can finish my meal I start having horrible cramps, I’m talking doubled over in pain. Figured it’s gas from scope and try to go potty. That’s when the real fun began. Barely any BM with a tiny bit of blood but now I’m crying and shaking and terrified. Thinking I can “walk it off” I give that a shot! Nope, called the GI and am instructed to head to the ER. After much blood work which showed highly elevated WBC and a CT scan, I get a shot of morphine mixed with Zofran and am told to follow up ASAP with GI because I have “Crohn’s all over”.... hmmm. Okkk....GI calls the very next day saying he got results of CT and they show active CD in several loops of the small bowel and he adds Flagyl to Entocort, still NO RELIEF, other than I went from straight diarrhea to straight constipation. Soooo now he scheduled me for a capsule endoscopy this Friday. I’m miserable and don’t know what to expect next. Any advice or support is much appreciated. Oh and on top of my other symptoms I now have ongoing nausea with very little appetite. The fun continues......
Question: Who here has had active Crohn’s in the small bowel? What were your symptoms? What treatment are you on? Sorry to come out with so many questions but I’ve always had CD in my ileocecal area, as far as I know so just trying to learn more.
Background: I was diagnosed back in 2005 at 30 yo. According to my GI, I had been living with CD for at least 4-5 years because I already had an ileocecal stricture and came to the ER with a partial obstruction because my stupid PCP kept telling me I just had a virus. Even though I told him multiple times I suspected CD because my mother, my uncle and both of my brothers have it so I recognize the symptoms. He actually had the audacity to ask me if I wasn’t “sure if it was ‘female’ problems”.
but I digress. Long story short, I spent 8 days hospitalized and was treated with Prednisone, Flagyl, Cipro and IV fluids. Sent home with Asacol, Prednisone, and Flagyl because I wound up having an allergic reaction to Cipro. Then went on to take Imuran only for maintenance after the Asacol stopped working (it was exiting in the same form it had entered...) After 3 1/2 years on Imuran (and several dose increases) I was not feeling any better on Imuran than off it so I dropped all treatment around 2010. Stayed pretty well under control with very short, occasional flares until August 2017. Got a new GI (because I moved too far from my beloved original one) and went to him with a pretty significant flare (severe constipation, cramping, extreme bloating). He immediately put me on Entocort EC until we could do a colonoscopy. Instant relief! Colonoscopy showed old damage (stricture) but no active disease. So then we did a MRE, which showed active disease at the end of the small bowel. Got me off the Entocort and onto Humira! Oh what an improvement! I didn’t realize how sick I was until I started getting better. Then BOOM! Within 3 short months, allergic reaction so bad he pulled me off the Humira and prescribed Remicade with Imuran. But I never went through with it. I chickened out due to I hate Imuran and I’m terrified of Remicade. Went about my life feeling pretty decent until June of this year. Brand new symptom: straight diarrhea (which I’ve never had even when first diagnosed). After a couple of months of that I broke down and made an appointment. Admitting to him that I chickened out on the recommended treatment from 2017. He puts me back on Entocort but shockingly NO RELIEF! So next up, colonoscopy. Again, no active disease in colon or ileocecal valve. But now I’m getting more symptoms: cramping, bloating and continuing diarrhea. Also, immediately following colonoscopy, I go home and eat breakfast. Before I can finish my meal I start having horrible cramps, I’m talking doubled over in pain. Figured it’s gas from scope and try to go potty. That’s when the real fun began. Barely any BM with a tiny bit of blood but now I’m crying and shaking and terrified. Thinking I can “walk it off” I give that a shot! Nope, called the GI and am instructed to head to the ER. After much blood work which showed highly elevated WBC and a CT scan, I get a shot of morphine mixed with Zofran and am told to follow up ASAP with GI because I have “Crohn’s all over”.... hmmm. Okkk....GI calls the very next day saying he got results of CT and they show active CD in several loops of the small bowel and he adds Flagyl to Entocort, still NO RELIEF, other than I went from straight diarrhea to straight constipation. Soooo now he scheduled me for a capsule endoscopy this Friday. I’m miserable and don’t know what to expect next. Any advice or support is much appreciated. Oh and on top of my other symptoms I now have ongoing nausea with very little appetite. The fun continues......
