Sick since 2008 with no real answers

[Chickadee]

I'm 35. I have always had "stomach problems," and was diagnosed with IBS as a kid. In high school, I was hospitalized for a couple of weeks with weight loss, diarrhea and abdominal pain so that I could be on TPN, but no diagnosis other than IBS was given. I continued to have problems off and on throughout college and career, but I was still able to get on with life. This changed in 2008.

Starting Spring 2008….
-chronic diarrhea (up to 10 times per day, though reduced greatly with cholestyramine)
-35 lb weight loss down to a Body Mass Index of 15.3
-nausea and vomiting
-severe stomach cramps
-bloating
-fatigue, malaise, weakness
-night sweats

Symptoms became so severe that I left my job, go on disability and move in with family.

The diarrhea has improved with daily cholestyramine, but I continue to have abdominal pain, cramps, discomfort and nausea and feel very ill when I eat anything other than rice or rice cakes or a few other foods. The fatigue is debilitating most of the time. If I feel a tiny bit better and try to clean a room or go for errands, I will end up spending the next 2-4 days in bed feeling like I have the flu. The latter has been diagnosed as Chronic Fatigue Syndrome.

I have had 1 sigmoidoscopy and 4 colonoscopies (the latter just last week, after I ended up in the ER with severe abdominal pain, diarrhea and bleeding). All have been normal. Similarly, an upper GI series, CT enteroscopy, abdominal sonogram and stool tests have also been normal. An upper endoscopy showed only a hiatal hernia. I've been tested for celiac disease multiple times and have tested negative. Still, I tried going off gluten for 2 years to see if it would help; it didn't.

I have the following diagnoses:
-intestinal problems = IBS? Post-infectious dysmotility/nerve damage
-mild von Willebrand’s disease type I (just finished an 8-week course of Ferrlicit IVs due to severe iron deficiency anemia—hemoglobin was down to 7.1)
-Chronic Fatigue Syndrome
-Chiari Malformation type I
-hiatal hernia (also born with double inguinal hernias—repaired as an infant)
-osteopenia…getting worse and close to osteoporosis
-migraines
-night sweats
-autoimmune thyroid disease (started as hyper and then became hypo)

Any thoughts?

 

[jbpharmd]

I have never heard of motility problems in gut from ID causes. What type of infection did you have? You mentioned night sweats, are these associated with chills and fevers? Are your lymph nodes swollen? What did they discover when testing you for IBD? With crohns your PLT can be elevated but I don't know with your other diseases. You should have an increased CRP or sed rate. Sometimes, little markers like total protein can be increased as well. I wish you all the best. It does sound like more than IBS.

 

[Chickadee]

Thanks for the response, jbpharmd!

We've never determined what infection I had, but the severe diarrhea, vomiting, etc. started suddenly in April 2008. I didn't immediately go to the doctor because I thought it was the stomach "flu" or food poisoning. By the time I did go, stool tests didn't reveal any infection or parasite. The doctors are just guessing that I had some type of infection that cleared but caused post-infectious dysmotility or even nerve damage.

I don't have a fever or chills. I just wake up drenched in cold sweat and have to change clothing 3-7 times per night. Well, I am chilled when I wake up, but that is because I am soaked. My lymph nodes are not swollen.

I don't have an increased CRP or sed rate. The only inflammatory marker that has been elevated (and it's extremely and consistently elevated) is C4A, but the significance of that is unclear. I don't know what PLT means.

So far, nothing has turned up in the search for an IBD. I had a polyp removed during my colonoscopy last week. At the time, the doctor told me he was pretty sure it was an inflammatory polyp. When I spoke with a nurse or med assistant at the office today, she said it was a hyperplastic polyp, and the biopsies show no inflammation. I want to clarify this with the doctor, but I was almost hoping they would find something so that I could be more effectively treated.

 

[Trysha]

An increased C4A can be found in Lyme disease.
Has anyone ordered lab tests for this?If not perhaps you could ask for the test.
Inflammatory polyps can be found in Crohn's disease.
Some of your symptoms are suggestive of Crohn's,and I would have thought by now the colonoscopies would have shown something.
von Willibrand is a bleeding disorder and this could confuse the crohn's diagnosis.
Hopefully you have a good GI team.
Feel better soon
Hugs and best wishes
Trysha

 

[Chickadee]

Trysha,

As you probably know, Lyme testing is a bit complicated. I seem to be negative for a current, active infection. I did have Lyme when I was a kid, but there's no evidence that it's still in my body.

I also would have thought that colonoscopies by now would have shown something! It's really frustrating. :/

How do you think von Willebrand's could confuse a Crohn's diagnosis? I'm sure there are people who have both vWd and Crohn's, but I haven't been able to find them or any articles about them so I'm not sure what that would look like. Because I have type 1 vWd, I shouldn't be having spontaneous bleeds. My hematologist (who thinks I have an IBD) says that I would only be having intestinal bleeding if there was some other source-- ulceration, hemorrhoids (which I do have), etc. VWd would just make the bleeding last longer....and it's certainly added some obstacles in doing biopsies, etc.

Thanks for the well wishes!

 

[Trysha]

Hi Chikadee
My knowledge of vWd is limited but I was thinking of spontaneous bleeds in the GI area.
Your hematologist will be most knowledgeable and it is interesting that he thinks of IBD
with you.
It is interesting that you have a history of Lyme disease and this could be the reason for high C4A, although I would have thought that level would diminish in time.
Hugs
Trysha

 

[dannysmom]

Hi and welcome. (My son's story could have this same title: "Sick since 2008 with no real answers". Just curious if your thyroid levels are under control yet. Thyroid has a huge impact on your whole body including your digestive tract. (I had Graves but had to get my thryroid destroid so have been both very high and very low in the last couple of years.)

 

[Chickadee]

Trysha-- Yes, I would think that the high C4A wouldn't still be related to Lyme. My doctor (Primary Care) says that it seems to be non-specific for a lot of types of inflammation and illness. He checks it with C3A because I guess if both are elevated, it can indicate other things like MS. (My C3A is okay.)

Jeanne-- I'm sorry that your son is having such a tough time and is also not diagnosed. I read the link to his story. Right now, my thyroid levels are spot on, though I take daily levothyroxine.

 

[Chickadee]

Since my doctor doesn't seem all that interested in figuring out what's wrong with me, I've been doing more research. Mastocytic Enterocolitis seems like it may be a possibility. I think I'm going to try to get a follow-up appointment with my GI (since I can't get him to call me back about the colonoscopy results) and request that the biopsies that I had taken during the colonoscopy be tested for mast cells. If he is not agreeable, I think I'll look for another GI.

 

[Thunderstorm]

Hi Chickadee, I also have a CFS diagnosis and can relate to the 3-4 day recovery period after doing anything. I'm strongly wondering if that's due to lack of nutrition due to restricted diet/ongoing gastrointestinal problems.

I don't have a crohn's diagnosis and I haven't had any of the tests that you've had as I've only just seen a gastroenterologist. But he did mention that he thinks my symptoms (if not caused by an ibd) could be down to numerous intolerances (i'm also on a ridiculously restricted diet), but also possibly multiple allergies. Do you suffer from hayfever or get hives/rashes/itchy ears/throat occasionally etc?

I've been referred to a specialist allergy/ibs/ibd dietician. Might be worth seeing one of those or even an allergist to get proper testing on the dietary side of things.

 

[Chickadee]

Thunderstorm, thanks for sharing your ideas! Yes, I definitely think that a lot of the fatigue could be tied to nutritional imbalances. Of course, the problem is that eating other stuff (more nutritiously dense foods) results in nausea, diarrhea, cramping, etc. I just saw a nutrition last week, and I'm going to try slowly adding some foods-- just 1 tablespoon at a time, with several days in between attempts.

I have had testing for food allergies, but the tests haven't been consistent. Also, I test allergic to most things, and a positive allergy test doesn't seem to necessarily correlate with a bad reaction. For instance, I test allergic to rice, but that's the food I tolerate the best.