Asymptomatic Crohn

[Miki]

Hello everyone. I am 26 years old and have had Crohn's since I was 11.
I used to manage my disease relatively well until early 2008. After ignoring my symptoms and fever for 4 months an abscess formed in my pelvis along with serious intestinal inflammation. I ended up having right hemicolectomy and also large part of my terminal ileum removed + beginning part of large intestine. Over 60 cm was given for biopsy, but don't know if that was all that they removed, it might have been even more, from what I see when reading about these procedures online. I got my temporary ileostomy.
During long hospital stay I also had additional fistulas forming requiring few more (less major) surgeries. A year later (2009.) my ileostomy was successfuly reversed and from then on up to today I've been in remission and without any medications.
2 years ago ago I developed a severe iron defficiency anemia. I had to take many iron infusions (and even now ferritin is still extremely low). I thought the disease was back despite not having any symptoms. Well, I did colonoscopy (they even managed to enter 20 cms of small inestine), gastroscopy and barrium X-ray few months ago and they found NO sign of active disease, even biopsy is completely clear. This came as a surprise to both me and all of the doctors. They did find 2 small ulcers near the anastomosis but they didn't find it particularly important and considered it a remission. Few weeks ago I did pill cam to check the small bowel again and even though I wasn't well prepared for the procedure they did manage to see few small ulcers and erosions with the suspicion of active disease. This was in my jejunum (middle part of small bowel). They now want to do the enteroscopy.

So basically I seem to have tiny ulcers both at the end of the small bowel and in its middle part. I have absolutely NO symptoms, except for anemia and generally not being able to gain weight, but that has been my problem since my surgery. My bloodwork has been fine for the past 5 years, showing NO signs of inflammation.
Is this likely to be active Crohn? What is usually done in such cases of having small ulcers and erosions? I don't expect enteroscopy to find anything significant (that other tests couldn't see) but obviously something mild IS going on in my small bowel. Can this be considered remission or is this active Crohn? I would really like to act as fast as possible (before things potentially get worse), but honestly don't know how. I don't think Imuran would be a great solution at all in my case. If something is going on there Imuran certainly isn't going to stop it.

Thanks for your help!

 

[Malice67]

I am also mostly asymptomatic compared to others here (mainly IBS symptoms -- none of the bloody problems, and my C & D are annoying but not at any miserable level, some pain with certain foods, but only for a couple of days then it goes away). I did show some small erosions in stomach and near terminal ileium (sp??) with pill cam. Like you, I also was severely anemic (hemoglobin 4.6 g/dL, B-12 at 150, ferratin "less than one" plus low folate as well) and required seven iron IVs and 2 B-12 shots to get close to normal.

Granted, I don't have your prior history and surgeries... but my GI is not giving any of the "big meds" just supplements and Zergid for the ulcer he gave me by removing a polyp.

I also sometimes worry that this inaction may be allowing things to get worse... but don't know what to even request trying. As long as my anemia is under control, my hematologist and GI feel all is well. Is that the vibe you are getting form your GI, or do you sense they are wanting to try something after results of enteroscopy are in?

good luck -- hope someone has better answers than me -- but wanted you to know there are others with similar current symptoms.

 

[Miki]

I am also mostly asymptomatic compared to others here (mainly IBS symptoms -- none of the bloody problems, and my C & D are annoying but not at any miserable level, some pain with certain foods, but only for a couple of days then it goes away). I did show some small erosions in stomach and near terminal ileium (sp??) with pill cam. Like you, I also was severely anemic (hemoglobin 4.6 g/dL, B-12 at 150, ferratin "less than one" plus low folate as well) and required seven iron IVs and 2 B-12 shots to get close to normal.

Granted, I don't have your prior history and surgeries... but my GI is not giving any of the "big meds" just supplements and Zergid for the ulcer he gave me by removing a polyp.

I also sometimes worry that this inaction may be allowing things to get worse... but don't know what to even request trying. As long as my anemia is under control, my hematologist and GI feel all is well. Is that the vibe you are getting form your GI, or do you sense they are wanting to try something after results of enteroscopy (not even sure what that is) are in?

good luck -- hope someone has better answers than me -- but wanted you to know there are others with similar current symptoms.

Thanks for sharing your experience. My ferritin was also below 1 and I better not tell you how many iron infusions I've had in the past 2 years. (over 50)

My GI is a strong believer in Imuran as a way to keep things under control. He has suggested that to me even before I've done all these tests. And even before I did pill cam which showed few minor ulcers and erosions it is what he wanted me to start taking. I refused, simply because I don't believe in it's efficiency. It does NOT guarantee a long-term remission at all and from what I've seen pretty much anyone flares-up sooner or later, with or without being on Imuran. Long-term consequences of taking it and all of the side-effects are simply not my cup of tea. Even my GI said: "There are studies that show it can extend the remission, but for how long - that we can not answer". It's basically stab-in-the-dark kind of medicine.

Enteroscopy is the procedure of using an enteroscope (an instrument just like for the gastroscopy, but LONGER) for the direct visualization of the small bowel. It is done under short-term general anesthesia.

Btw, compared to you I haven't even had IBS symptoms for the past 5 years after the surgically induced remission. NO SYMPTOMS at all, believe it or not... Not a single sign of pain anywhere in my stomach, great appetite etc...
Diarrhea has been present since surgery, but that's to be expected since my bowel has been shortened.