I’ve been debating for a while about this post and finally decided I should share. I mean, this is an anonymous blog, right? Well – who knows if it really is anonymous. I wasn’t even sure how to title this post. There are plenty of ways to describe it – rectal discharge, mucus, watery diarrhea… When it first happened, it just seemed like some slimy thick clear “stuff” that came out when I went to poop. The worst part about it was that it would come out when I was just passing gas. Fortunately, I could feel it starting to come out before I sharted. But it made me very uncomfortable as I stopped being able to pass gas, except on the toilet.
The best way I can describe it is that multiple times a day (maybe 5-6) I’d have to pass this small amount of mucus – maybe a few tablespoons worth. It was most often clear, but sometimes had brown flecks in it, and sometimes it was more like brown loose stool. Much of the time, I’d have a normal looking bowel movement once a day or once every other day, in addition to these multiple mucousy episodes. Even the normal bowel movements would tend to be coated in a little bit of the mucus though.
I’ve had similar issues before, but slightly different. A few years back I had a week or so of watery diarrhea. I called my primary care doc and he suggested maybe I was taking too much omeprazole and I should try cutting it back. That seemed to work back then, so I figured I’d give it a shot this time. Whenever I’d try to cut back my omeprazole, though, I’d get horrible heartburn. I have a history of gastric and duodenal ulcers, so this solution wasn’t going to work. And even with the heartburn, it didn’t help my mucous discharge problem. At various times over the 5 month period (yes, it took five months to identify the problem) I tried cutting back the omeprazole and it just never consistently made a difference. Proton pump inhibitors can lead to diarrhea for some people, often because there is no acid to kill bad bacteria.
Attempt #2 – cut back on certain foods that may be causing this. I hadn’t changed my diet much, so I wasn’t sure where to start. I decided to start with the crap foods that I eat the most. I love those gummy fruit snacks and I figured they could cause diarrhea if eating too many, so I cut them out. No change. Next I tried cutting out the wonderful Subway chocolate chip cookies that I love, which I eat once or twice every week. No change.
Then I tried cutting out mayonnaise – which in the past had activated my irritable bowel but I had seemed to be doing fine with the light mayo that they serve at Subway. No change.
Hmm… I don’t have a very diverse diet. Looking up diet issues, interestingly they say to avoid higher fiber foods which can make you gassy. I already pretty much avoid anything green, so that wasn’t going to help. I finally decided to take drastic measures.
I contacted my primary care doctor through their new slick web interface, outlining all of the pleasantries I’ve shared above. I figured he’d have some simple suggestion – like we’ll switch you from omeprazole to something else. Instead, he responded right away and said I should go see a gastroenterologist.
I’ve seen gastroenterologists before. I had bad irritable bowel syndrome when I was a teenager – horrible abdominal cramps and gas pains, along with frequent diarrhea. Evaluation of it when I was kid went nowhere. The work-up consisted of a barium swallow with small bowel follow-through which was read as normal. I was started on fiber supplements which had no benefit. Ultimately the gas and diarrhea got better as I found which foods made it worse (higher fat content dairy foods – like 2% or whole milk, and cream cheese).
Then when I was around 25 years old I had an episode of severe upper abdominal pain that radiated to my right shoulder. Thank God it didn’t radiate to my left shoulder or I’d be constantly in the emergency room getting tested for a heart attack. It was extremely uncomfortable, though, and so I talked to one of the gastroenterologists at the hospital where I worked. He did an upper scope and suggested doing a lower while I was out. The upper endoscopy showed ulcerations in my stomach. Colonoscopy was normal. Unfortunately, I was h pylori negative, which meant that my ulcers kept coming back whenever I went off my proton pump inhibitor. I also had a lot of reflux symptoms. But things were much better with the proton pump inhibitor and I managed for a long time with only occasional bouts of my irritable bowel acting up.
I had a colonscopy at age 40 because there was a family history of polyps, and that was read as normal.
Coming back to modern times – now I’m meeting with a local gastroenterologist about this mucous shit that comes out almost every time I pass gas – which was present for a month. We had a pretty brief meeting, but he asked me all the right questions (not much pain, no weight loss, no blood in my stool) and he said it could just be my irritable bowel but I should probably have a flexible sigmoidoscopy to take a look and see if there are any signs of inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
I did the flex sig and he told me afterwards that he did see a lot of mucus and some slight inflammation. In the report, though, he said everything looked normal. He said it is probably irritable bowel and give it some time to see if it goes away.
I wait a week or two and decide I’ll try taking a probiotic to see if maybe it is just my intestinal flora. I do eat yogurt pretty regularly (cutting it out made no difference), but I figured I’d give it a shot. I started taking the cheapest decent looking one I found at Walgreen’s (the stuff can be expensive!). It was called InSync and looked like it had pretty high counts of the good bacteria. I took it for a few weeks – no change.
I called back the gastroenterologist and said I really don’t think this is just irritable bowel. I’ve had irritable bowel my whole life, and this is a definite change. I asked if maybe it could be celiac disease and I should be on a gluten free diet. I asked if maybe it could be clostridium difficile, although I hadn’t been on any antibiotics recently. He said he didn’t think it was any of these, and he suggested I try a probiotic. I said I had already done that. He said I should take a “good” one like Floristor or Align. I went ahead and shelled out about $50 for a month’s worth of Floristor and gave it a shot. No change.
After a month, I called him back and he said he wanted me to have some blood tests and stool tests.
I have to say – collecting stool specimens for these tests was not easy. First of all, I wasn’t sure if I should be submitting my mucous discharge or if I should only submit hard stool. I was given three different containers for the different tests. One was to test for c diff (clostridium difficile), one was to test for ova and parasites, and one was to test for a chemical called calprotectin. Since I couldn’t always predict how much poop was going to come out, I did have to waste one of the collection hats on just mucus that wasn’t enough to submit. I had to wait until I was sure I’d have enough poop for the stool sample, and it seemed I finally had something good to go with.
The stool tests came back negative for c diff, negative for ova and parasites, and the calprotectin level was slightly elevated. Calprotectin is a marker for intestinal inflammation, often elevated in cases of inflammatory bowel disease. In my reading, I saw it can also be elevated when you have an upper respiratory infection, and I did have a slight cough at the time the specimen was collected.
The blood tests he did looking for celiac disease were inconclusive because I have a low IgA level. If you have a normal TTG level, it usually means you don’t have celiac disease, but this particular test can be falsely normal if you also have a low IgA level. Lucky me. But he still wasn’t thinking it was celiac disease.
The only other blood test that was slightly abnormal was the C-Reactive Protein, which is a non-specific measure of inflammation in the body. Mine was a little elevated. I wrote it off to the cough I had at that time, but either way, it was still elevated.
I’m not going on about 3 months of symptoms with no changes. I’m still trying different diets, or something I’m eating. I think maybe it is my Vitamin D gelcaps – cutting them out made no difference. I think maybe my Brita water pitcher isn’t clean enough, so I scrub it down and change the filter – no change.
So, because of the elevated calprotectin and elevated C-Reactive Protein, the gastroenterologist says I should have a colonoscopy. Yippie. Everyone knows the prep is the worst part. Or at least it usually is. And it does suck. Last time I had the gallon of golytely prep. This time was surprep. The stuff didn’t taste nearly as bad as everyone said online, but it still isn’t fun, especially after being on clear liquids for an entire day.
He does both an upper endoscopy and a colonoscopy. Upper endoscopy is clear and the biopsy showed no evidence of celiac disease. Cool. Colonoscopy had to be aborted because I have a “floppy colon”. Not very flattering of a term, but he said the scope just couldn’t get past the transverse colon to get down to the terminal ileum which is what he really wanted to see – in order to rule out inflammatory bowel disease.
I recover from the colonoscopy and he suggests I do a video capsule endoscopy. These are very cool devices – a tiny camera inside a pill that you swallow. You wear a belt and carry a recording device that receives images at it goes through your digestive tract. I go ahead and do this. There is still a prep for it, but it is better than the colonoscopy prep – only having to be on clear liquids after noon the day before the test instead of the entire day. The magnesium citrate tasted far worse than I remember the other two times I had to drink it. But it did its job.
For the day of test, I just laid around the house browsing the web on causes of chronic diarrhea and mucous farts. I was wondering if the Pillcam sb3 (the model of the capsule endoscopy I was given) would be able to get to my terminal ileum before the test was over. You swallow the pill around 8am and you come back to the office around 4pm for them to take the device. The gastroenterology then has to review all of the images to look for problems. The recording device flashes to let you know that it is receiving and recording images from the pill. As I was driving back to the gastro office, the device started beeping, which it turns out means the battery is running low, which is normal after about 8 hours.
I drop off the equipment and they tell me most people pass the pill after 24 hours, but sometimes it takes up to 3 days (see this post on how long it typically takes a camera pill to pass). I likely won’t even see it pass, but if I’m worried it didn’t pass they could do an x-ray. Because I’m a hypochondriac, I’m sure that it has gotten lodged somewhere. I do go back to passing my new normal bowel movements and I didn’t see any camera. I looked, but it is hard to see the bottom of the toilet and I’m not about to go digging around. I assume it passed in one of my bowel movements, but I’m still thinking it didn’t, since I never saw it. I get occasional twinges in my lower right quadrant, where the terminal ileum is, and where Crohn’s disease inflammation would be most likely, and would be a likely spot for the pill to get stuck.
After a few days, my gastroenterologist calls me and says my small bowel shows multiple mild ulcerations consistent with Crohn’s disease. Not the news I was expecting, but at least I now have an explanation. And he did say mild. I’m hoping it really is mild. He suggests an oral steroid I can take to try to put it into remission – Entocort, and he said it should start working and my stools should return to normal. He asked me a few more questions about my bowel habits, etc. He also suggested I make an appointment for the next week to come in and go over all of the different blood tests I’ll need and to discuss long term medications to try to keep me in remission.
I asked him if they were able to tell if the pill had passed. He said the person who read the study with him did see it go into the colon, so it should have passed. I’m relieved. That night, however, before I started taking the Entocort, I am having worse stomach pains, mostly on the right side of my abdomen. Of course, I’m a hypochondriac so I am convinced I’m having a “flare” of my newly diagnosed mild Crohn’s disease. And then in the morning, I start dry heaving. Now I’m convinced I didn’t pass the Pillcam and that I have an obstruction. I call the on call gastro at around 6:45am, thinking I’ll go in to get an xray to confirm whether I passed the Pillcam or not. He said my symptoms could also be gastroenteritis coinciding with everything else, as he was the one who co-read my study and said it definitely made it past the terminal ileum, but then they didn’t see any images after that. He said I probably should still have an xray to confirm though, and to hold off on the Entocort until I talk to my gastroenterologist in the morning.
Two hours later, I pass the camera. I still feel like complete shit – crampy pain and nausea, but I’m at least glad I don’t have to worry about the camera being stuck in a stricture somewhere that would require surgical removal. A short while after that, my own gastroenterologist calls me back and I tell him the camera passed. He said that he thinks it probably did get hung up somewhere and that is what caused the vomiting, and I should go ahead and start the Entocort. My right side is still tender. As a hypochondriac, I’m still worried something worse is going on, maybe even appendicitis. Could a pillcam stimulate appendicitis? Could it aggravate Crohn’s? I went ahead and took the Entocort and things gradually seemed to get better.
Bottom line – mucus per rectum isn’t always a normal inflammatory response or symptom of irritable bowel syndrome. It often is, but in my case, the clear signal to me that it was something else was the definite change in my bowel habits from previous. Thankfully my doctor did want to rule out inflammatory bowel disease and kept at it. I really didn’t think that was it. I’ve been a hypochondriac long enough to expect that no diagnosis will be found for my complaints. Not surprising, hypochondriacs sometimes get real diseases too.