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Crohn’s in small bowel

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......
 
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......
I have crohn’s in the duodenum, jejunum, and ileum although at present it is quiescent. My symptoms during severe flares have varied: severe anemia (duodenum), severe pain and inability to eat and drink (entire small intestine), and severe pain and vomiting, as well as inability to eat (jejumum and ileum). I have some scarring in my TI which backs me up but am currently only suffering with newly diagnosed severe gastroparesis. I also suffer from constipation.

In sum, for me, pain and an inability to eat are the signs that things are going downhill. Good luck and I hope you find a good treatment which will get you into remission.
 

JDTM

OMG LDN BBQ
Solidarity, you guys. I'm in the process of trying to find a treatment that works for me. After years of assuming that I only had Crohn's in my terminal ileum, a capsule endoscopy revealed that I have CD in multiple places in the small bowel. (Inflammation outside of the terminal ileum didn't show up on the MRI; I was hospitalized a couple of times for partial obstructions higher up than the TI though, and I was thought to be a risk for an obstruction with the pill cam, but I'm glad I did it as it revealed what wasn't showing up in previous tests.) My disease was originally diagnosed as mild, but I've been on Inflectra (discount Remicade, pretty much) since January and so far it doesn't seem to be doing the trick by itself. Just got my hands on some azathioprine and I'm going to try it tonight, but I'm a little nervous about it. Here's hoping that combo therapy does the trick, and I don't get any gnarly side effects with the aza.

I'm currently trying to avoid blockages by sticking to softer foods. You may want to do the same -- perhaps even stick to a liquid diet (think Ensure or Orgain or something like that) to hold you over for a bit. Hang in there jspriggs. :)
 
I have sb crohn’s too. Suffered with it far too long. Just had a partial laparoscopic surgery to remove 48cm. Should have done it 10yrs ago!! Had 15 strictures and was constantly bleeding. So glad it’s out! I am a total believer in surgery now. I had one 20 yrs ago that was far worse to recover from. The modern techniques are really amazing. Not a difficult recovery at all.

If you do decide on surgery it’s important to get on a biologic treatment to keep it at bay long term.

Good luck!!
 
Hi I'm Dianne . I was recently diagnosed with Crohn's at the terminal ileum. My pain is more upper abdomen and middle abdomen. I was beginning to think the dr. misdiagnosed me until I read your post. I think it is throughout the small bowel like yours. I'm going to bring this up to my GI dr. next appt. Thanks for sharing your story.
 
Though I am thankfully in remission right now, mine is in the ileum, cecum, and small bowel. I've been on Humira for almost a year and luckily I haven't shown any adverse reaction to it yet. It's been a lifesaver.

Entocort or any other corticosteroid was never intended to be a long term treatment, though for some reason, some GI doctors believe in it. I was on Entocort for a few months and started having some bad reactions to it. Switched GI doctors and was put on Humira, which has given me a good bit of my life back. One other medication my doctor recommended as an alternative if Humira was ineffective was Stelara. I don't know anyone personally who has taken it, but it's good to know there are other things out there.
 
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