Capsule Endoscopy Report

Background:
Issues began in July 2014. Colonoscopy in Dec 2015 with negative biopsies. Normal CT Enterography in Sept 2016. ESR and CRP consistently elevated every time they've been checked over the years.

In July 2016 I started passing a lot of blood/mucus only movements, such that I was going 5-10 times a day. As usual, inflammatory markers were raised so I had the CT Enterography. It was normal so I was sent on my way.

At the end of February 2017 things suddenly hit the fan with unbearable cramping pain all day and night, 15-30 BMs per day with blood and keeping me up all night, dropped 24 lbs in 3 weeks.

I had my capsule endoscopy on March 23. The capsule spent 4h49m in my small bowel and less than an hour in my colon because I expelled it. My doctor called to inform me the next day that because of that fast transit time, they were able to visualize my large bowel in addition to my small bowel (yay?).

Here is my report:

Patient Data
Gastric passage time: 0h 8m, Small Bowel Passage time: 4h 49 m

Procedure Information and Findings
1. Capsule reaches colon at the end of study
2. Small bowel passage time is 4h 49m
3. Few small aphthous ulcers noted in the mid small bowel (mid to distal jejunum), a little after 3 hours into the small bowel
4. Upon entering into the cecum, and R colon there is considerable inflammation, congestion,, erythema, ulceration with bright red bleeding and oozing of blood

Summary and Recommendations
1. Suspect possible Crohn's ileocolitis based on these findings
2. Consider repeat colonoscopy with biopsies

The doctor called me the day after my pill cam to inform me they found inflammation and that she insists on repeating the colonoscopy. I informed her of how sick I was (I was delirious with pain and dehydration at this point) and she said she would start me on prednisone immediately. She said it would be better to do the colonoscopy before starting any medication, but that I was too sick to wait 3 weeks without any meds. I happily accepted the meds. She's got me on 30mg prednisone for 1 week, then 20mg for 1 week, then 15 mg for 1 week, 10 mg for 1 week, then stop. The prednisone eliminated the pain within 24 hours and cut down on bowel movements and bleeding but I'm still struggling with watery diarrhea 10-15 times, only at night/early morning. I've been on the pred for 5 days at this point.

My questions:

1) Will I get a diagnosis if I go into this colonoscopy on 3 weeks of pred? Or will it mask the inflammation on the pathology? I'm scared the biopsies will come back negative (I've seen so many people on here report getting negative biopsies even with obvious visual inflammation) and then I won't get the medication I need to kick this and get back to work. Clearly, I need something more than just the pred since I still have symptoms.

2) Should I still be dealing with frequent watery diarrhea at night after being on the pred for 5 days? It is bad that I'm supposed to start tapering in 2 days even though all my symptoms never resolved totally?

Thanks for sharing your report.

5 days of pred might not be long enough, or your dose might not be high enough, or you may just be a partial responder to prednisone. Any of the three or some combination of all three is possible.

Pred will reduce inflammation but it generally/usually does not heal ulcerations to the point that biopsies would be normal assuming what you have is Crohn's. Based on the description of findings in the cecum and right colon, I'd be shocked if prednisone cleared that up to the point that biopsies don't show anything.

If you can manage, stay on the pred a bit longer and see if it starts to help more. If you can get to the colonoscopy, then you'll get a firm diagnosis and most likely would start on biologics (would be my guess, based on description of capsule findings). Prednisone is a double-edged sword - taking high doses can make you feel better, but it doesn't really treat the disease properly, and the more you take and/or the longer you are on it, the harder it can be to get off of it. So it's always a judgment call and a balancing act of how much and for how long. Ideally the answer is not to be on it at all, but you'll need to do what you have to do until your colonoscopy and until you get a proper diagnosis and get on a proper medication.

Seems reasonable. You may need to stay on the higher dose and not taper so quickly.

The main thing with that much diarrhea is that you can easily become dehydrated. So make sure you're getting enough fluid intake. Even then you can still get dehydrated, so keep an eye out for that and go get an IV if needed.

Yeah I learned that pretty quick the first night. I'm making a concerted effort to hydrate a lot during the day to prepare for the nights now. I've never really had to go to the ER (except once or twice after car accidents) as an adult and I'm very stressed over the idea. Before I had the Capsule Endoscopy I was teetering on whether to go because I was so unwell and in so much pain. How do you know when it is time to go?

There is a bit of a mindgame component for me. I am 28 and live alone (happily - at least till now...). My parents both live about an hour away (in different directions). My dad's heart is in the right place but he is pretty uneducated and unable to grasp the concept of even basic illnesses (not able to read and comprehend his own basic post-surgery instructions, general literature and scheduling info from his doctor, etc.). He doesn't understand why the doctor can't just "sew up" my bleeding ulcers and be done with it forever.

I don't have much of a relationship with my mother and she doesn't really "believe" in all this. Up until now it was that I must be faking, now that I have evidence something is wrong, she thinks that doctors don't know what they are doing because she consulted Dr. Google for 20 minutes.

So basically I live alone and I cannot rely on my parents whatsoever for support. I feel like it would be easier if I had someone watching out for me when I'm really sick to say, "hey - it looks like it's time to head to the hospital." I'm just hoping I can do this alone and don't do anything stupid, like get too sick to get myself to the hospital when I need it.

If you do end up needing to go to the ER, do you have a friend or neighbor who could take you? If not, and you did end up really bad off and needing the ER, don't be afraid to call for an ambulance.

Keep an eye for symptoms of dehydration. Really dry skin that "tents" (if you pinch your skin, say on your hand or forearm, and it stays up like a tent would). Really dry mouth. Lack of urination and/or unusually dark urine. Dry eyes, lack of tears. Feeling hot with red, dry skin. Feeling faint.

If you actually start fainting from dehydration, then it's definitely time to get to the ER, whether with a friend, an Uber, a neighbor, or an ambulance.

I got to that point once - after my primary care doctor at the time kept telling me I was fine and wouldn't get dehydrated - and I fainted at my place, drove to the ER (less than a mile away), and fainted again in the waiting/triage area. I shouldn't have driven. I ended up getting multiple IVs, sent home, only to return and get IVs again and be hospitalized.

Well, I was up all night with lower abdominal cramping and passing small amounts of blood only 4-5 times an hour. I called and told the GI nurse this morning and she talked to the doctor who insisted I go to the ER. So I guess I'm going to the ER. I'm not sure what they are going to do there and I really don't wanna go but if the doctor isn't going to adjust the prednisone or do anything else I guess I have no other choice

Good, I'm glad you went to the ER. Hopefully this experience will help you have the confidence to go to the ER if you ever need to again. I hope you get to feeling better soon!

It really is. And while the potassium pills they gave me really wreaked havoc on the already angry intestines, they did make me feel better too.

The gastro office called today and said the dr was prescribing Rowasa enemas for the bloody diarrhea. (Pill cam showed a lot of bleeding coming from cecum so I don't know whether this will help but I've had a lot of pelvic pressure so maybe it will.)

I've never had an enema before much less gave one to myself. It sounds messy. Any recommendations for how to go about it and what to expect??

Can I do it in bed (on top of an absorbent pad or towel of course)? Can I stand up afterward or will it be a mass exodus?

Beave,

I was not aware of your point #1 - do you know why this is?

Regarding your second point, I realize the enema won't make it to my cecum. The GI nurse on the phone said the doctor thinks I might have some proctitis if I am having a lot of bloody diarrhea and low pelvic pressure. My capsule endoscopy report did not mention my sigmoid or rectal area so I have no idea what they saw there, if anything, so perhaps it's a shot in the dark...

I thought the reason why mesalazines didn't work for Crohn's was because Crohn's affects all layers of the bowel and mesalazines can't reach that far - they only work on the inner lining of the bowel (which is fine for UC, which only affects the inner lining, but not for Crohn's).

Also, an enema will never reach as far as the caecum - I'm a bit baffled as to why you have been prescribed enemas for a bleeding caecum. Oral mesalazine will, however, reach the caecum just fine. But if you have Crohn's and not UC, then oral mesalazine probably won't do a lot. However, it's extremely unlikely to do any harm and it might help.

As far as proctitis is concerned, suppositories are miles easier to use than enemas but they don't go much beyond the rectum. Enemas will reach the sigmoid and the descending (left side) colon. Like beave said, if you need tips for using enemas just search the UC forum - a site search for enemas + UC should bring up lots of results.

I can't see any other reason why mesalazine wouldn't work for Crohn's but works for UC. It's kinda obvious to me that if you're only treating a small part of the affected area, then it's not going to put it into remission or stop things like strictures or fistulas from forming. That said, I'm not massively interested in the mechanisms of how drugs work, so maybe there's something I'm missing - I dunno.

Also - my insurance won't cover Apriso but will cover Lialda. Are they more or less the same med?

Noodles, you're right to think this is more likely Crohn's than it is UC because of your capsule endoscopy findings. Your doctor wasn't thinking clearly IMO or wasn't remembering your capsule endoscopy results. But there is a chance you have UC, to be fair. I just think it's unlikely.

Apriso and Lialda are both formulations of mesalamine, a medication that is used to treat UC (and is often prescribed by doctors for Crohn's, despite clinical trials showing little/no benefit when using it for Crohn's). You can use either one your insurance covers.

Your biopsies will hopefully shed light on what form of IBD you have.

You can take Apriso or Lialda in the meantime. For most people it has very few side effects if any. If you have UC, it should help. If you have Crohn's, it probably won't do much.

Keep us updated as soon as you get biopsy results. Ask for copies of exactly what they show.