Awaiting Diagnosis

[ColoradoGrrrl]

I had endoscopy done just over a week ago and got results in the mail today. They found colon polyps and signs of chronic gastritis and duodenal inflammation. Going in I was thinking celiac or ulcerative colitis or even microscopic colitis were the most likely culprits, but after investigating my results further and further comparing my own medical history and spectrum of symptoms I'm now inclined to think Crohn's

Increased risk of Crohn's in European and Jewish ancestry (check)
Increased risk of Crohn's more than 20 years after an appendectomy (check)
Increased risk of gallstones in Crohn's patients (check)
Melanosis coli may be caused by chronic colitis or IBS in absence of laxative use/abuse (check)
Intestinal lymphangiestasia may be caused by Crohn's disease (check)
High platelet counts in conjunction with low iron levels may be attributed to IBD (check)
Chronic gastritis may be a result of Crohn's (check)
Poridge-like (type 6) BMs with steatorrhea (check) (though I get type 7s and tenesmus too, which is more common in UC)
Recurring knee and hip aches (check)
History of canker sores (check)
Most likely to develop between 15 and 35 (check)
Abdominal pain attacks and more mild cramping (check)

My GI thinks I just have IBS though . . . that's a lot of pain and suffering to go through for "just" IBS . . . and I worry that IBS is a cop out because they don't want to or can't investigate any further to find out the true cause.

The melanosis was esp. interesting to me since the literature all says it's the result of abuse of laxatives - only I've only ever even used laxatives 3 times in my life - and all three times it was milk of magnesia that I used, not the particular laxative implicated in melanosis.

Just wondering if this is in keeping with anyone else's diagnosis - and what, ultimately, tipped the scales for them to diagnose something more that "IBS"?

 

[kiny]

Hi, not sure how to help. What you're doing is called hypothesis-generating though, you will find more and more reasons to believe you have crohn's because that's what you're looking for. I would wait for diagnosis and try to relax in the meantime.

 

[ColoradoGrrrl]

That's probably only partially true of me - since, as I mentioned in my original post, I went into the tests expecting celiac or maybe ulcertaive colitis or microscopic colitis. I was actively not expecting or looking for a Crohn's diagnosis. I'm still not. I only think Crohn's seems more likely now because of what came up in my research into the Doctor's report from my scopes. Crohns was the only thing that came up in all of the articles describing the pathologies mentioned by my GI. That's still not to say that it is, and even if it is, I think it's a mild case (at least, based on what I know of others who have dealt with the disease). And I'm not prone to diagnose myself with whatever either. Though it is true that I'm now seeing more things that I had previously thought were unrelated that I now think many in fact be the result of IBD . . . I still wouldn't say I'm actively seeking a Crohn's diagnosis (if anything, I'd prefer celiac - but that's not where the evidence is tending - and it is clear that something is going on in any case).

 

[UnXmas]

Have you experienced any bleeding, fevers or unintentional weight loss? These are key signs that generally distinguish Inflammatory Bowel Disease from IBS.

I agree with you that IBS is really just a diagnosis doctors use to avoid having to say they don't know, but unless something else is revealed during testing, it can be very hard to find a doctor who will make another diagnosis.

I'm not sure about the significance of the inflammation they found with the endoscopy. I know I had gastritis that they differentiated from Crohn's inflammation, which in my case was caused by acid reflux. So there are some causes of inflammation besides Crohn's. Have you had the results of biopsies? If you've had biopsies from colonoscopy and endoscopy, then they should be able to tell you if you do have Crohn's.

Melanosis coli is something I had too. I had my colon removed and the surgeon told me that I had it, which he was surprised about because he knew I had chronic diarrhoea and couldn't believe I'd have ever taken laxatives. The thing was I never had taken laxatives! Literally the only times I'd taken them were in order to clear the bowel before surgery or tests. My surgeon went to do a bit more reading up, and found that melanosis coli can have causes other than laxatives, including inflammatory bowel disease. The melanosis coli itself is not something you need to worry about - you probably already looked it up and know this already - it won't do you any harm. I don't think it's a particularly useful finding in terms of diagnosis though, as it's not be proven to be a typical sign of anything other than use of certain laxatives - I don't think it would affect a doctor's opinion of what your diagnosis is.

Just a quick word of warning - try not to do too much reading up on your symptoms to guess what your diagnosis is. I did a lot of that, and I don't think it did me much good. On the one hand I found it very easy to start convincing myself I had diseases that I didn't have, and on the other I got worried when at times it seemed like there was no explanation for my symptoms. (It turned out I had more than one illness, and very atypical presentations.) Ultimately your doctors will go by test results as far as Crohn's is concerned, though symptoms play a bigger role in diagnosing some other conditions. I think the best thing is to find a doctor who takes you seriously and who will help you with symptom management whatever your diagnosis turns out to be.

 

[ColoradoGrrrl]

Good to know that others have found melanosis coli in cases other than laxative use/abuse, because like you I've never been even a regular laxative user. The only times I used them were for constipation due to vicodin following my gallbladder removal and the prep for the colonoscopy.

I am just worried that my doctor, since I'm new to town and have no previous relationship with him or his PA, will assume that I'm abusing laxatives and lying about it. Equally worried that he'll take Crohn's or something more serious than IBS completely off the table just because they didn't find anything definitive in the endoscopy. (Since it could be deeper in my small bowel and not be spotted, I know, or a mild case in remission in my ileum, because they didn't take a biopsy of that, only of colon tissues). I could also still be celiac . . . or even lymphoma . . . I am mostly worried that I'll get the IBS label and then get written off if symptoms return or get worse. Having heard stories of people going years and years without a diagnosis, I fear being another one of those people who have to get to the brink of death and get cancer or have massive parts of their bowel removed before getting a diagnosis.

 

[UnXmas]

Unfortunately your fears aren't unfounded. I was one who went years misdiagnosed (with many misdiagnoses along the way). Do you have the option of seeking the opinions of other doctors? I'm not sure of the rules where you are, but here (on the NHS), everyone is entitled to ask for a second opinion if they are not satisfied with the first specialist they see. After that we are entitled to seek another opinion if our symptoms worsen or if we develop new symptoms. GPs act as gatekeepers, so I've found it really helped to have a GP who was lenient with getting me second (and third, fourth, fifth...) opinions.

If your symptoms worsen or if you get new ones, you can ask to be retested. You may also have a case for further testing if your symptoms do not respond to IBS treatments (IBS medications, diet changes, etc.). If your testing has centred primarily on the digestive tract, you should be able to ask to see specialists from other disciplines if you have symptoms which suggest your gastro. problems may be part of wider condition.

As far as your concerns about being accused of laxative abuse, your medical records may be important. When I started losing weight as a teenager, I was misdiagnosed with anorexia, which of course then left me liable to being accused of abusing laxatives as the two often go together. I won't lie - these accusations were a problem for me, but I do think my case of misdiagnosis went far further than most do. What helped me was that my medical records showed I had repeatedly asked for help controlling diarrhoea, and that I had regular prescriptions for anti-diarrhoea meds - which is hardly what you'd expect from someone taking laxatives. You're allowed to see your medical records, so make sure all your appointments are recorded accurately. Any time you've expressed concern about weight loss or diarrhoea, for example, would suggest that your problem is not laxative abuse as it's evidence you're trying to stop diarrhoea and weight loss, not cause it.

I think you can be reassured, however, that the more serious diseases do tend to make themselves known. Endoscopy and colonoscopy would pick up on many conditions. If your symptoms get worse, you should be able to request retesting/another opinion, so do so straight away. Also, if it's any reassurance at all, I've had my entire colon removed and I can't say it's done me much harm - and it couldn't have been avoided, even if I'd been diagnosed much earlier. Unless you suddenly develop a serious complication (which can happen whether someone has a diagnosis or not), it's unlikely a condition like Crohn's could progress to the extent of needing major surgery without you getting more warning signs beforehand, and I would expect this would go along with more objective signs, such as blood tests positive for inflammation, that would prompt most doctors to reconsider an IBS diagnosis.

So my advice would be: find a doctor who takes you seriously, ask to see your records if you're at all concerned doctors might be starting to incorrectly label you as a laxative abuser or anything similar, monitor your symptoms and make sure you report it right away if anything changes, but also try not to worry too much - the worst of the horror stories that I've heard are usually when patients have been dismissed without adequate testing, but with the tests you've had, even though it's quite possible you have something other than "just" IBS, it's unlikely you could have a serious gastro. disease that's gone undetected.

 

[Tired]

A full investigation, with colonoscopy, endoscopy, barium, pills and blood tests rarely can miss a diagnosis, it does happen but it is rare.

In my case, they believed IBS and stress before the tests, but after investigation, I was diagnosed properly as having Crohn's, it took months of waiting and losing a lot of weight but they diagnosed me, even if it was few days before I landed in the hospital for a month.

 

[bozzylozzy]

-although it doesn't happen all the time.. Auto immune illnesses can take years to fully manifest and reveal itself. My rheumatologist advised this. Also.. there are other illnesses that mimic IBD, such as Bechets. There are also people who have been diagnosed with IBD in the past - but future colonoscopy biopsies are inconclusive.

I am not sure what the incidence rate is for misdiagnosis.. but I think a lot of this has a lot to do with your GP and gastroenterologists. Also - because microscopic colitis is only seen on biopsy - its trying to find a needle in a haystack when picking a biopsy site lol

How are you doing lately coloradogirl??

 

[ColoradoGrrrl]

Thanks for the replies guys!

I'm doing better. I switched to an SCD paleo diet right after my testing was done. I think the combination of removing a lot of irritating foods and the low-inflammatory nature of the paleo diet has helped a lot. I'm still feeling fatigue (partly because I'm having trouble getting to sleep lately), some minor cramping and having some skin issues (specifically a recurring patch of itchy skin on my lower abdomen - which I think may be eczema or similar, as I ruled out contact dermatitis). I also haven't lost but 2 pounds in the 3 weeks I've been back on paleo so far and according to just calories in/out I should have lost 4-6), so I think that's an indication of inflammation/stress. But my digestion in terms of BMs and transit time at least has been much better.

I can tell I still have healing to do. I've been avoiding nightshades, for instance, and most FODMAPs (and when I do eat FODMAPs I space them out so I don't get too much at one time). I have tried to reintroduce a few things - but the only thing that consistently brings back symptoms immediately is gluten (as in I'll eat a food with gluten in it and almost as soon as I'm done have an urgent BM and/or get really tired after eating and have bad gas later on). So I think that may play a role in whatever is going on - even though I was negative for celiac. The next most disruptive is high levels of sugar, especially fructose, which seems to make me break out on my face.

The stricter I am about what I eat the better I seem to do symptom wise. I have a follow up appointment with the GI later this month. (They wanted to see if dietary changes were helping things). So I'm making up a list of questions for them about things it could be and next steps. To me, it strongly seems autoimmune in some way - I'm not sure what . . . given just the systemic issues and signs of inflammation I'm having . . . It could be intestinal tuberculosis - pretty rare and unlikely, but my sister did test positive for TB a couple years ago - so it's possible I picked it up from her . . . though again, unlikely. It could still also be lymphoma or even ovarian cancer (which runs in my family, though I would be the youngest to get it if that's the case - since all the other ladies who had it were post-menopausal . . . so I really hope it's not that - and it seems pretty unlikely in any case).

I have not had the gene test for celiac (which they mentioned might be worth pursuing) nor a barium test or camera pill test to look at deeper areas of my gut yet either. So for now I'm just pursuing dietary changes and waiting to follow up with my doctor to see what, if any, next steps to pursue . . .

Or maybe I'll just keep up my strict eating for a while and be able to heal myself through food alone? Or maybe it'll work for now and at some point down the road symptoms will come back and we'll need to look into other possibilities . . . I'm really not sure. But I'm hopeful since, at least for now, things seem to be calming down a bit and getting better.

There's a lot of possibilities still worth exploring, I think, but at the same time if my symptoms are doing better right now so I'm feeling much less urgency about pursuing those avenues at the moment. (Esp. since I've already got more than my share of medical bills as it is . . . )

 

[ColoradoGrrrl]

Got a follow up question for you all - not sure if it merits it's own thread though?

I think I may be food addicted . . . which could explain why I'm able to be technically obese and still, possibly anyway, have digestive issues and malnutrition. I will eat high calorie foods for a fix, even if they cause digestive symptoms for me - like fast food and coke. For instance - Wendy's Spicy Chicken sandwich almost always results in an immediate, urgent and loose BM for me - but I still crave it and eat it anyway (trying to avoid them now - because of the SCD paleo thing - but I've caved to other things like soda a couple times, since they're gluten free).

So I'm wondering . . . for most people do you lose weight with IBD because eating causes symptoms so you are able to stop eating? because of malnourishment? or both?

Also, is it possible that just being overweight could cause my symptoms? From inflammatory fat, etc.? (Saw an article on NIH to that effect, but was wondering if more recent research had been done that you might know about) . . . .

(Anyway, the thought just struck me as I'm sitting here thinking about how badly I'd like to have a Whopper, even though I know it will upset my digestion)

 

[kiny]

for most people do you lose weight with IBD because eating causes symptoms so you are able to stop eating? because of malnourishment? or both?

It's usually malnourishment in crohn's disease, people eat less.

You're fully capable of taking in macronutrients even if you intestine is inflamed in some parts. Glucose and proteins are still taken up just fine, fats a bit less. It's more micronutrients. People with crohn's disease have issues taking in B12 and iron sometimes, since they're site specific.

It all depends on the amount of disease in the intestine, but many people simply eat less and start losing weight, stopping eating can make you look like an anorexic in 2 or 3 weeks.


Anyway, make sure you get diagnosed properly by a doc.

 

[UnXmas]

Got a follow up question for you all - not sure if it merits it's own thread though?

I think I may be food addicted . . . which could explain why I'm able to be technically obese and still, possibly anyway, have digestive issues and malnutrition. I will eat high calorie foods for a fix, even if they cause digestive symptoms for me - like fast food and coke. For instance - Wendy's Spicy Chicken sandwich almost always results in an immediate, urgent and loose BM for me - but I still crave it and eat it anyway (trying to avoid them now - because of the SCD paleo thing - but I've caved to other things like soda a couple times, since they're gluten free).

So I'm wondering . . . for most people do you lose weight with IBD because eating causes symptoms so you are able to stop eating? because of malnourishment? or both?

Also, is it possible that just being overweight could cause my symptoms? From inflammatory fat, etc.? (Saw an article on NIH to that effect, but was wondering if more recent research had been done that you might know about) . . . .

(Anyway, the thought just struck me as I'm sitting here thinking about how badly I'd like to have a Whopper, even though I know it will upset my digestion)

Going by what my doctors say, I think many people react the way you do - you're not the abnormal one. I am terribly underweight, and have spent most of my life underweight to some extent or other. I do absorb calories properly, but my symptoms mean I find it impossible to consume enough food to maintain a normal weight, even when I eat a lot of high-calorie foods. My stomach doesn't empty properly and I can't eat when I'm full. If I start eating and it triggers diarrhoea, I stop eating. When I get heartburn, I find it impossible to eat until the pain stops. When I get reflux, the taste in my mouth puts me off eating. My doctors say my response is abnormal. Especially with the heartburn - they say heartburn is a very common problem and that no one loses weight from it, except me apparently.

I seem to have this instinctive reaction where any time I have any digestive symptom, I think I have to not eat. Except with the stomach emptying problem (gastroparesis) - I really do think that makes me physically unable to consume the volume of food most people can.

So I would think a lot of people in your situation would have no trouble maintaining weight. There's a reason so many people, with or without Crohn's, get overweight - most people instinctively want to eat, even with some digestive problems. I would say probably it's that your Crohn's (or whatever is causing your symptoms) isn't severe enough to cause weight loss.

Have you ever had a major surgery or some illness where eating really is impossible? If you're able to willingly eat a full meal the day after major surgery, then that may well be a sign that you are more addicted to food than the average person. But if when you've been really sick you've experienced that feeling of having to force food down, then I would guess that it's just that your illness is not severe enough to cause you to stop eating, or at least that the type of symptoms you get are not ones that put you off food (for example, someone whose Crohn's causes nausea may find it harder to eat than someone whose Crohn's causes diarrhoea, or severe pain may make it hard to eat whereas passing blood doesn't).