Being tested for crohns

[lovechell69]

7 months ago i started getting sick. I started with an unexplainable weight loss. Then migraines, followed by intolerance to food smells, naseau, distended stomach, fatigue, the weight loss is now 100lbs, vomiting, painful bm, bm tested positive for blood, passing blood when i have a bm, unable to have a bowel movement 5 days or more very painful. lower abdominal pain, My magnesuim,potassium,vd,iron is dangerously depleted,white blood count stays elevated, mucus in stool. severly dehydrated,pain all the time, unable to use boost and ensure because of milk allergy. Dr. doesn't know how to get the calories back into me. I suffer from malabsorbtion and malnurtion. My mother has crohns disease and her brothers and sisters all have some form ibd. My dr is thinking its crohns.When I even take three bites I feel overstuffed. I don't feel like I need a bowel movement but I know it isn't constipation. Could I have Crohns as well? I am due to see a surgen january 3 and schedule the colonoscopy. If this is crohn wouldnt I be having bowel movements? Could this be a blockage or a blockage because of crohns?

[lovechell69]

Hey. January 3rd seems so far away. Even then I will have to wait for the surgery to be scheduled. The Dr's keep calling me telling me more and more of what my body needs is depleted. That in turn means more and more meds. I'm finding myself very tired when in truth I just want to lay in bed. I got to see my oldest child yesterday. For reasons too hard to explain my ex has convinced them I am a lunatic. Nothing I say to them is to be believed. I know justice will be done. I got a little piece when my daughter saw me. I actually saw the fear in her eyes. Maybe now I pray she will pass on to my other two children this isn't a lie but something very serious. Now I have to wonder. Have the Dr's played around with my life far past saving it. I keep four journals at a time now. One for each of my children and one for my gf. If I don't make it thru this I want them to have a piece of my thoughts feelings and days were like. I share memories with them each special to each child. More problems continue to the too many I already have. The Dr says going in the hospital is useless now. There is nothing they can do for me but what I am already doing at home. At least I will be getting the test though. There is a God I know and if it is his will to spare me death never will I look at life the same way again. This experience has taught me a lot. I am in my own silent hell however. I've been alone in this all the way. Knowing you may be dying and the people you love refuse to be there for you leaves a bitter taste. Most ran from the time I told them I was seriously ill. The others go about their day as if i'm invisible. I had a publisher who wanted to publish my book. I titled it A Soul That Never Was. I was in college and only a year and a half away of getting my associates with full intentions of going for my bachelors in computer programming. All that has been put on hold and if I make it thru this I'm not sure my college or the publisher will let me pick up where I left off. I find my comfort with my portable cd player at night laying next to my gf who is sleeping so well. I close my eyes and just let the music take over. It is then that the pain and other symptoms fade away because I am no longer aware of anything but the beautiful music playing in my ears. I thank you and every single person I have reached out to for answers and help even just an ear to listen. Everyone has brought me the one thing I needed. To feel like someone cares.

[lovechell69]

Thank you for answering my questions. Unfortunately I live in a very small town in south carolina. Dr's here are way behind times. Ive mentioned what you told me as well as a barium xray someone else suggested. It seems after all these months the focus is always on the colonoscopy and your right. The cleansing is horrid and with the depletion of potassium and iron and magnesium now my heart could fail me during the test. My endoscopy my heart stopped. I can't go out of state or country because I'm on a state medicaid program. Instead I continue to live with the symptoms research gluetin free diet foods and herbal remedies. My Dr told me he signed a oath as a Dr. to do no harm. I'm seven months into whatever is taking my very life. He's failed to do no harm. In my 7 year history with him he has known my mother has crohn's. That should have been the first thing he should have tested me for. If he had my heart would not be in the condition it now is. Getting a answer maybe signing my own death warrant. I have to be able to tell my children what's taking their mother away from them. I can't bare them debating all their lives trying to figure this out. It worries me that If I don't get a diagnosis than they might end up having it as well. Medicaid has approved six more visits to see specialist. The funny thing is it's soon to be a new year and I wouldn't have had my state govenor step in to make medicaid give me the extended visits. People have to realize like I have that you have to be your own advocate. You know your own body. It goes beyond a second opinion. It goes beyond a dr sending you home from the hospital to say your final goodbyes and oh we cant give you a diagnosis your heart cant take it. I've fought every step of the way and I won't give up as long as I am breathing. I know without a test being positive it is crohn's. Every single symptom matches perfectly. As I grew up I watched my mother suffer from this. She still is alive but is beyond any hopes of being sane.

[lizziecee]

Hi -
the calprotectin stool assay test - you only have to give a stool sample, which is then tested in a laboratory. It is cheap and easy to do.

Likewise, the CRP blood test - you only have to give a small sample of blood, usually from your arm.

I have these tests regularly, and have done so for the last 4-5 years. When I have Crohn's symptoms (diarrahea, blood/mucus in my stool, weight loss), these tests are the first my gastro prescribes, as they do give an indication of active Crohn's, if the levels are elevated. If they are very high (my CRP has been as high as 270), then he can decide whether or not to do a CT or MRI scan of my intestines.  Narrowing (strictures) will show on MRI or CT scans.  I rarely have colonoscopies these days, as the preparation to clean out the colon is very harsh, and of course there is the sedation, not to mention the slight risk of perforating the bowel.

I don't know which country you live in, but both the calprotectin and CRP tests are widely used here in England. If you want more technical information you can google calprotectin and CRP.

Take care and hope everything goes well for you on Jan 3rd.
Liz.

[lovechell69]

a calprotectin stool assay test
a C-reactive protein (C-RP) blood test  Is the stool assay painful? I'm not even sure I've ever heard of that test.

[lizziecee]

Hi - the short answer is that you may have  Crohn's - only a biopsy of your small intestine and/or your colon for suspicious tissue will give a definitive diagnosis.  Meantime, you could ask for 2 simple non-invasive tests, i.e.
a calprotectin stool assay test
a C-reactive protein (C-RP) blood test

If either, or both, of theses tests show elevated levels beyond the norm, this means you have some form of inflammation, but won't pinpoint where.  The norm for CRP is 5 or less,
for calprotectin, I think it is 8.

You could have strictures in either or both your small intestine or colon, which is causing the constipation, bloating and pain.Your depleted magnesium, potassium and iron can be associated with malnutrition caused by Crohn's affecting your absorption.

As for getting your weight/calories up - you may need a naso-gastric feeding tube if you are unable to eat normal food.  I had one for 2 and a half months (my hospital used Osmolite feed) last year, in order to get my weight to 112 lbs, in order for me to have major surgery for strictures, ulcers and crypt abscesses.. My gastro surgeon would not operate until I reached this weight. It was a pain, as I had to be connected to the feeding machine for 10 hours overnight, but it is surprising what one can get used to when your life is at stake.

Good luck with the surgeon - make sure he is very experienced with inflammatory bowel disease resections.

Liz.