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Crohn's Disease Forum » General IBD Discussion » Fecal calprotectin results in!


11-06-2012, 01:11 PM   #1
Ihurt
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Fecal calprotectin results in!

Ok, so I just got the results of my fecal calprotectin stool test. It said my level was at 25.7 in range. So I am guessing this is normal. Their reference range is < or = 162.9 mcg/g

I also had my MRE last week and that did not show anything unusual in the small bowel. I see my gastro doc tomorrow finally. He should be back from vacation. I plan on going over the test with him. I want him to look at the MRE CD that I got a copy of though. I mean a test is only as good as the person who reads it! I want his opinion on it.

I was going to ask him to do the colonoscopy, but I cannot do it now. My regular doctor is very concerned to the fact that the MRE caused me complications. I ended up with watery diarhea and really sick from that contrast I had to drink. I ended up with a bad UTI. I am on heavy doses of an antibiotic. ( I have to be on a low dose antibitoic daily to prevent UTI's. I have been on this antibitoic low dose for years). It is the only thing that helps. I have had to up that one to 4 times a day due to this UTI. I cannot take any other antibitoics due to being really allergic or mostly having severe adverse reactions to them. My doctor said I cannot do a colonoscopy, not anytime soon. She said I have to rest my body. I cannot risk another infection right now as it would be very hard to treat should I get one.

This sucks as I need to know what I am dealing with. I still have so many gut issues and not sure what other tests they can do. My regular doctor said that since they did not see anything in the small bowel with the MRE and the fecal calprotectin was normal, she said she would not persue any other invasive testing at this point due to all my other health issues that would certainly be made worse by it.

What do you all think? What other tests are out there that can dx what is wrong that are not invasive?? I mean I cannot get induced diarhea again. Not with how senstive my urinary tract is. IT is not like I can I just take an antibitoic when I get an infection since I am so allergic to most... I feel so lost!
11-06-2012, 04:01 PM   #2
UnXmas
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Does this definitely rule out IBD or can there be false negatives?

It does sound like you'll have to wait for a colonoscopy/further tests. It's not worth risking your health or feeling awful. It may take longer, but you can still have it done in the future when you're in better shape.

If your doctor doesn't want to do any invasive testing at present, has she suggested what's next to help you? You shouldn't be left to have to come up with a plan on your own.

As far as I know, non-invasive tests tend not to be so accurate - ultrasounds and X-rays and things are less invasive than scopes but don't always show up everything and may give inconclusive results. You could have blood tests which will show if you're malabsorping nutrients and might show markers of inflammation or signs of infection. Stool tests can show if you're passing blood or malabsorping fat, I believe. But it really depends what you've had done and what you're doctors are willing to do.

Maybe you need to get the UTI under control first, and spend some time planning with your doctor what will happen next?

Sorry the tests didn't come up with more answers. It's hard not knowing what's going on. At least they may have ruled some things out, so perhaps you are a little further forward?
11-06-2012, 08:34 PM   #3
Ihurt
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Thanks for the response. Yeah, I am surely cannot do the colonoscopy at this time, I am sure my Gastro doc will feel the same way seeing as what a horrific experience I had with the MRE. I hate my body sometimes! It is just so un-cooperative!

I have had all the blood tests ( sed-rate and C-reactive protein) in the last 5 months and they were nornal. I also just had the fecal calprotectin test and it was in the normal range.

Here is the odd thing. I saw a natural doctor about almost two years ago. He did this comperhensive stool test back then, this was back before I even had any gut issues really. At that time my fecal lactoferrin was raised 3.7

The doctor never even mentioned it to me. But what is odd is that back then I had NO symptoms at all. But now for the last year and half I have been feeling horrible, but yet my recent calprotecitn test was normal! I dont get it.

I will ask my gastro doc about it tomorrow again about the significance of these fecal inflammation tests. The last time I asked him about it, he kind of fluffed them off saying they were not very reliable. But everything I read says they are pretty reliable. I just dont know.

I had my blood checked for my Vit B 12 levels and iron and they were normal too. Had other stool tests checking for infections and parasites awhile back and they also were normal. So I just do not know. I honestly think I do have some sort of imflammation going on in my intestines. I mean I have other health issues which are inflammatory. I just wonder if it is possible that something other than crohns can just cause imflammation to the intestines?? I also get imflammation of my bladder as well as my nasal passages on and off. The bladder thing is called IC( interstitial cystitis). I just do not know what to do.

I agree, I do not think an ultrasound would show anything. I mean I just did the MRE which is better any day over a simple ultrasound in terms of seeing things, at least that would be my guess.

Thanks again for the reply. Hope you are feeling well!!










Does this definitely rule out IBD or can there be false negatives?

It does sound like you'll have to wait for a colonoscopy/further tests. It's not worth risking your health or feeling awful. It may take longer, but you can still have it done in the future when you're in better shape.

If your doctor doesn't want to do any invasive testing at present, has she suggested what's next to help you? You shouldn't be left to have to come up with a plan on your own.

As far as I know, non-invasive tests tend not to be so accurate - ultrasounds and X-rays and things are less invasive than scopes but don't always show up everything and may give inconclusive results. You could have blood tests which will show if you're malabsorping nutrients and might show markers of inflammation or signs of infection. Stool tests can show if you're passing blood or malabsorping fat, I believe. But it really depends what you've had done and what you're doctors are willing to do.

Maybe you need to get the UTI under control first, and spend some time planning with your doctor what will happen next?

Sorry the tests didn't come up with more answers. It's hard not knowing what's going on. At least they may have ruled some things out, so perhaps you are a little further forward?
11-06-2012, 09:46 PM   #4
Catherine
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Ihurt, my fecal calprotectin test come back on 17 which means stomach issues are looking like ibs. My daughter Sarah has crohns.

Have a look into the FODMAP diet, we started this diet prior to Sarah's dx, Sarah got much worse to the diet and my symptoms improved.

Good luck looking for answers.
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DX - CD 1/12, asthma
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Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-06-2012, 10:09 PM   #5
Jennifer
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Hi Ihurt! I hate asking you to do this again but could you post all of your symptoms please? Include the bladder inflammation in your post as well so its all in one spot.

Recently there was a member who had a pill cam done who only had to fast. They did not have to prep before hand. I'm wondering if your GI would be willing to do something like this for other tests too (possibly fast before a colonoscopy instead of using the prep). Also there's the Sigmoidoscopy where they can suck out any stool that's hanging around (although it wont show the entire colon) and perhaps your GI would be willing to have fasting before that test as well. I don't know but its worth asking when you see them tomorrow. Keep us posted on the appointment.
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11-07-2012, 08:05 AM   #6
Ihurt
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Thank you all for the replies..

Thanks Crabby for the ideas. I will talk to my GI doc tomorrow about them.

I first got sick back in 2003. It started after I got a flu shot. I got a virus that attacked my throat. I had sever burning and imflammation in my upper throat and upper esophagus. This lasted for over 2 years. I went to so many doctors and they could not figure it out. I even went to Mayo clinic and they did upper endoscopies multiple biposies of my throat and again found nothing. They said that they were sure it was some sort of autoimmune issue(they were thining some bolous skin disease). Long story short, After about almost two years, the burning in my throat went away. I then began having upper gut issues. I would feel full after eating only a small amount of food and feel like a bloated pig! I did not have too much pain or nausea though. Just feeling full and bloated all the time.. I went to many gastro docs and had multiple endoscopies (upper), even had a colonoscopy back then though I had no real issues at that point in my lower gut. Everything was normal. Then my GI doc at the time did a test called a small bowel manometry and they found that I had what they called a neuropathic dsymotility of the small bowel. I was put on a drug called domperidone for this. It helped greatly. Well after being on the domperidone for about over 2 years I started getting some bladder issues ( more frequency ). Then one day I woke up with what I thought was a UTI. Went to get it cheked and they did not find any infection. I continued to have the bladder pain. I went to several urologists had them look inside and was finally told I had IC. I stopped the domperidone as it was making my bladder hurt worse. I then went all gluten free and this really helped my upper gut issues.

I suffered with the dreadful bladder pain for 3 years. Worse three years of my life!! I was doing all the treatments for the IC and nothing was helping. My biggest issue with the IC was pain. I ended up getting a lot of infections then after getting the IC. Likely due to when I was having medicine injected into my bladder via a catheter. Well I got a UTI that lasted for over 5 months! It would not go away. the urgent care doc ended up putting me on an antibiotic strong doses for over 6 weeks. Low and behold my bladder got better!

I still had set backs with my bladder, like getting UTI's, but it was controlled by the low dose antibiotic I have been on. I also developed fibromylgia and even a grade 1 heart mur mur along the way. I also would have elevated sed rates and Creactive protein levels on and off throughout the years. None of my doctors seemed to overly concerned. I was told I may have lyme disease( only a guess from a doctor). I also was told I have an undifferenciated connective tissue disease( meaning they do not know what is wrong basically). Then about a year and half ago I started getting the issues with my intestines( meaning pain). It started where I would get a lot of pain and cramping in my intestines. I would feel so bad and icky inside after I would have a BM. My BM's were normal for the most part( no diarrheaha). I would get an occasional softer stool. I also would get ocasional hard stools. But the Pain was a constant. From March of this year till like June I was basically in agony. I mean I would have to be with the heating pad all day. Pain was my issue. My gastro just would say it is IBS. I even told him that I DO NOT feel better after a BM which I thought was hallmark for IBS. He said he has patients who are disabled due to IBS pain. I am not sure, I guess I have never met anyone who has so much pain from IBS! I had like two good months where my intestinal pain went away. That was July and August. What is odd is that during that time my nasal cavity was getting imflammed. I caught a cold too and was having issues with my nose and sinus. I had a burning feeling in my nose and it would be stuffed up some. I still get this on and off. I feel like my whole body is a mess.

So that is my symptoms: pain and cramping in the intestines, feeling worse after I have BM usually. It seems to jumps from my upper gut to my lower gut. I also get other weird issues like my lips will sometimes get kind of red and burn. I am VERY sensitive to all medications. I mean I get side effects to everything.

Anyhow, sorry for the long post, I tried to keep it short, just that I have been dealing with so much in terms of my health that it is crazy.. Thanks for the suggestions Crabby, I will definitely look into them...











Hi Ihurt! I hate asking you to do this again but could you post all of your symptoms please? Include the bladder inflammation in your post as well so its all in one spot.

Recently there was a member who had a pill cam done who only had to fast. They did not have to prep before hand. I'm wondering if your GI would be willing to do something like this for other tests too (possibly fast before a colonoscopy instead of using the prep). Also there's the Sigmoidoscopy where they can suck out any stool that's hanging around (although it wont show the entire colon) and perhaps your GI would be willing to have fasting before that test as well. I don't know but its worth asking when you see them tomorrow. Keep us posted on the appointment.
11-07-2012, 08:19 AM   #7
katiesue1506
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I wonder if you have a crazy intestinal bacterial imbalance from the constant antibiotics usage.

That could cause inflammation and not show signs of anything on blood tests.

The fix for this would be a good solid probiotic that could replace the good bacteria that the antibiotics have killed. And a lot of yogurt eating. This may sound so simpleton but gut bacteria are so so important to the normal functioning of our digestive systems. Maybe you could ask your doc what he thinks about that.

I am kinda surprised they have let you stay on antibiotics so long (even if it is a low dose) because all the docs I've gone to only use them if they have to so you don't become immune to them. Antibiotics are good, but only in moderation and when you really need them. A low dose for years seems like it might be working against your immune system in all actuality.

Have you tried natural things for UTIs like a cranberry pill/liquid suspension and high water intake?

Again, forgive me if this all sounds simple. I'm just throwing things out there.
11-07-2012, 09:38 AM   #8
Ihurt
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Oh no, you do not sound simple at all. I agree with you actually. I have been on probiotics for years(even before I got any gut issues). A naturopath put me on them. Since being on the low dose antibitoic I have been on stronger dosed of the probiotics( like 50 to 100 billion counts a day).

Because of the IC of the bladder, I cannot tolerate any form of cranberry, it irritates the lining of the bladder to much. The only reason they put me on the low dose antibiotic was because I was getting soo many infections in the bladder that I was constantly having to be on antibitoics from the UTI's I kept getting. My doctor said that at that rate I was definitely going to become resistant to all the antibiotics if I kept having to take them full dose so often with all the infections I would get. She figured that this was better to be on a low dose of one antibitoic to hoepfully keep the UTI's at bay.

I agree, I HATE being on antibiotics, even low dose as I know they are poison to the body. I just had no choice. Nothing was working. I spent sooo much money on natural rememdies, herbal supplements, you name it, I tried it. Nothing worked to stop the UTI's.. That is the only reason I agreed to take the low dose anti-b. It was the only thing that helped me. Also, I am basically allergic or have severe reactions to all the other anti-B's out there. That is why my doctor is leary of me doing any more testing at this point( especially invasive like the colonoscopy). She said for women who have UTI issues, the risk of having a UTI after a colonoscopy would be high due to all the induced diarhea and just the trauma of it all and everything is just so close down there together. It is impossible for bacteria not to spread....

I feel like I am caught between a rock and a hard place

But I will agree 100% with you. I am certain that the antibitoic is definitely the cause of my gut issues right now, at least some of the cause! I am stuck. My doctor said if I stop the antibiotic then for sure I will not be able to take it again( she said after you stop an antibiotic is when you grow the resitance to it). Also I am unable to take any of the others the use to treat UTI's. My IC would come back and I would be screwed. I wish they would come up with something that would treat infections of the bladder and urinary tract besides antibitocs. Cranberry never worked for me, and it just made things worse. Most people with IC cannot even tolerate cranberry anyhow. But yeah, you are right Katiesue, I agree with you...











I wonder if you have a crazy intestinal bacterial imbalance from the constant antibiotics usage.

That could cause inflammation and not show signs of anything on blood tests.

The fix for this would be a good solid probiotic that could replace the good bacteria that the antibiotics have killed. And a lot of yogurt eating. This may sound so simpleton but gut bacteria are so so important to the normal functioning of our digestive systems. Maybe you could ask your doc what he thinks about that.

I am kinda surprised they have let you stay on antibiotics so long (even if it is a low dose) because all the docs I've gone to only use them if they have to so you don't become immune to them. Antibiotics are good, but only in moderation and when you really need them. A low dose for years seems like it might be working against your immune system in all actuality.

Have you tried natural things for UTIs like a cranberry pill/liquid suspension and high water intake?

Again, forgive me if this all sounds simple. I'm just throwing things out there.
11-07-2012, 11:10 AM   #9
UnXmas
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Just a suggestion, but have you considered seeing a neurologist? You mentioned bowel dysmotility. A neurological condition could cause many symptoms, including bowel dysfunction (not inflammation, just difficulty moving the food through) and bladder infections can result if the nerves in your bladder mean it's not emptying properly.

This is just something I'm throwing out there - because the nervous system can cause basically any symptom and is so general, it's probably a long shot. Kind of like connective tissue disease - neuroligicial conditions can
cause anything. But when I've researched my own symptoms over the years, I remember guy dysmotility and bladder issues/UTIs as being quite common signs of autonomic nervous system dysfunction. It might be worth bringing up with a doctor or considering seeing if a neurologist could assess you.

Have you had tests to assess how your bowel/stomach and bladder empty? Maybe you have more luck finding problems in the way they work rather than tests directed at looking at inflammation, even if there's something inflammatory going on too or as a result of other problems.
11-07-2012, 05:06 PM   #10
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Hey Ihurt, I was just looking up IC so I could understand it better. So far I haven't seen antibiotics listed as a possible treatment (only looking at one site though but its my general "go to" when looking up meds and health conditions). I did see a few interesting treatment options listed though. I'll just copy and paste here:

"Elmiron is the only medication taken by mouth that is approved for treating IC. This medicine coats the bladder like Pepto-Bismol coats the stomach.

Other medicines may include:
- Narcotic painkillers for severe pain
- Tricyclic antidepressants such as amitriptyline to relieve pain and urinary frequency
- Vistaril (hydroxyzine pamoate), an antihistamine that causes sedation, helps reduce urinary frequency

Other therapies that may be tried include:
- Over-filling the bladder with fluid while under general anesthesia (bladder hydrodistention)
- Bladder training (using relaxation techniques to train the bladder to go only at specific times)
- Medicines placed directly into the bladder, including dimethyl sulfoxide (DMS), heparin, Clorpactin, lidocaine, doxorubicin, or bacillus Calmette-Guerin (BCG) vaccine
- Physical therapy and biofeedback (may help relieve pelvic floor muscle spasms)
- Surgery, ranging from cystoscopic manipulation to bladder removal (cystectomy)"
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001508/


Have you tried any of these above (obviously not surgery yet but I do see it as an option). One of the main problems with antibiotics other than the gut flora loss as mentioned is that they can cause softer stools, diarrhea, and abdominal pain. I'm sure it helps with the UTIs no doubt but for me I'd look more into other possible treatments for IC rather than settle on the antibiotics forever. Its possible that getting the IC under control may help with your lower GI tract issues yet I'm still curious about the upper or all around issues you seem to be having. It does sound immune related but I'm not sure. I also had issues with my sinuses becoming inflamed when I was younger before my diagnosis (it would cause my nose to bleed a lot as well as being stuffed up).
11-07-2012, 06:34 PM   #11
Ihurt
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Thanks Unxmas and Crabby,

Unxmas: I have seen a neurologist and he could not offer any suggestions. I can urinate fine, I just had severe pain and imflammation in my bladder... My motility issue got better after I went Gluten free, so not sure what that was all about...

Crabby: Thank you for looking all that info up for me, that is so nice of you... I have tried ALL of those things when I first got dx with the IC. None of them helped me, in fact when I doing the bladder instillations, I got worse due to bacteria always being introduced into the bladder. I was told surgery to remove the bladder would be a very last resort and they actually do not like to do it as it has a lot of potential complications. They have to manipulate your small bowel and use part of it to make a route from the kidney to get the urine out which you would have a bag then. Not many doctors would do this, especially since I got way better after being on the antibitoic. They really do not know what causes IC. There are quite a few people who have IC That have gotten better on antibitoics. SO I think there is a connection and it very likely is bacterial in nature, at least for me it is... The urologist said that they will not remove the bladder of any IC patient unless there is such severe shrinking of the bladder which happens in some IC patients and the bladder can only hold like an ounce of pee. Then surgery is very much considered. I guess it is a very serious surgery since the intestines are involved as well as the kidneys.

I agree, I do not like being on antibiotics. It is no good. I may end up seeing a different naturopath doc eventually and try that router again. It is just soo expensive though.

I saw my gastro doc today. After hearing of my experience with the MRE, he said he did not want to do anymore tests. He said he in happy that the MRE came back ok as did the calprotectin test. He said that they are now doing trials with people taking pentasa. He said that with IBS they are finding there can be microscopic imflammation and some IBS patients get relief from taking the meds like pentasa and asacol(sp). He gave me free samples if I wanted to try. He said we may do a colonoscopy later on, but he said my body needs to get well from the UTI and recooperate. He thinks it would just make things worse if I went ahead and did it now.

SO I dont know. That is where I am. I am not sure about the pentasa. I read the pamphlet and there is a lot of side effects. He said he would only want me to take 1 pill a day to start with to see how I do. He said the drug in mainly used in treating UC and crohns, but they are doing the trials now on people with IBS that have severe pain. He said it helps some but not everyone. Would you try it if you were me????

Anyhow, Thanks again for the replies. I really do appreciate it a lot. This is so frustrating for sure. You guys are so wonderful on here. Crabby, thanks again for doing all the research, that is so kind of you!!!
11-07-2012, 07:02 PM   #12
Jennifer
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I'd talk to your other doctor about it, the one who's treating your IC to see if they think its ok. Did your GI say anything about it possibly causing complications with your bladder etc? There are a lot of possible side effects as with most meds out there. I know that if I were suffering and in intense pain then I'd be willing to try almost anything so at this point its really your call. If things feel bad enough to give it a try then try it out but definitely talk to your other doctor about it first.

Yes IBS can show microscopic inflammation in some patients. http://emedicine.medscape.com/articl...overview#a0104
11-07-2012, 07:31 PM   #13
katiesue1506
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Out of all the meds for Crohn's/UC/IBS Pentasa is a rather mild one (related to the aspirin family). I would personally be okay trying it out, but you should definitely find out if it will interfere with your IC problems.
11-07-2012, 11:37 PM   #14
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Yeah, Pentasa is just aspirin with a superhero complex..hahaha! I think you should try it. It is a very mild drug. It can stain the underside of the toilet seat purple from urinating, but other than that, I had no side effects at all with Pentasa and I was on the typical dose of 8 pills a day.
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11-08-2012, 09:20 AM   #15
Ihurt
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Thanks everyone for all the replies. I guess I will have to try it and see how it goes. Hope it does not bother my bladder. I know 2thfairy said it can dye the urine so that means alot of it gets filtered through the kidneys.. I know my doctor would tell me the only way to know would be to try it, so that is what I will do. Thanks again all!!!
11-08-2012, 09:36 AM   #16
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It doesn't color the urine, per se, as you will see no difference immediately, but the splatters (predominantly from women) on the underside of the toilet seat turn purple and stain after it dries. Lialda (same stuff as Pentasa) can stain brownish-red. I had to buy plastic toilet seats for my house.

I hope you have good results with the Pentasa.
11-08-2012, 01:36 PM   #17
Ihurt
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Thanks 2thfairy!!!
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