Could this be Crohn's? Diarrhea/severe weight loss

[nhchic]

Hi..Im posting in a few forums on this subject, as I am worried about my 14 yr old daughter.

Up until Nov, she was doing ok. Then she started having diarrhea, getting hemmorroids, took her to her GP, diagnosed her with Rectal strep, which they dont think was causing the constant BM's.  They put her on antibiotics, and set up an appt with a GI.  We also did several stool cultures, all which came back negative.

She has diarrhea at least five times a day, will come out of the bathroom and feel like she hasnt emptied enough,
then go back in.

On. Nov. 22, daughter weighed 104, now she weighs 91.

We were thinking it was possibly Celiac Disease. She seems  to have a lot of the symptoms.
We took her to the ER, no help there.

She saw the GI two days ago, they said her platelets were up slightly, and her heart rate was faster than it
should be. But the DR. didnt seem overly concerned.  Other than the elevated pl count, her blood work was ok.
Her thyroid was in normal limits.

But the GI ordered a complete thyroid panel, ERS, and CRP.

I can't believe for a minute that my pale, fragile daughter doesnt have some sort of deficiency.  




This doctor was very nice and attentive. She said she will do a cat scan later in the week. But my god, I feel
no one is as concerned as I am.  

Any advice here? Should I take her back to her GP?

Even if it is crohn's or celiac, it seems like it's going to take forever to have those tests done.
Im watching my daughter waste away.

Last nite, she started crying and said she thought she would die, because no on was able to fix her.

Here are my ?'s

What does elevated platelet count mean?
Can a person have anemia even with negative blood work, if so, what tests should I ask for?

Isnt a 13 pound weight loss serious? I mean, she is constantly drinking water, eating some things, but not alot, weak, tired all the time, and wasting away.

What does the ERS and CRP do?

And can someone be really ill, and still have normal bloodwork results?

Thanks for any advice and support.

[nhchic]

Thanks to all who shared..I so appreciate it.

She will have the procedures done on Tuesday.

My daughter had been taking amoxicillin in Oct, before all this started, and I read about
pseudomembranus colitis, where the C dificil can multiply and cause conditions similar to
colitis.  She did have the stool sample which was negative.

In any case, wouldnt any inflammation of such a nasty disease show up on a ct scan?
I will be at a loss if there is no answer on Tuesday after she has the endo/colon thing done.
Any experience on how sensitive a ct scan is on picking up even the littlest inflammation?

Her doctor said her heart rate is up. And I see that in certain circumstances, that a high crp could (and I stress, could), be cardiac related.  Does an upper abdomen CT scan show heart issues?

I mean, she doesnt show signs of heart disease at all. Im just a little worried with such a high CRP. I dont see her really having any signs of Lupus or RA, at least the traditional symptoms. But what do I know.

She has a constant low grade fever. Tonite it was 101.5. Im keeping my eye on it.

Thanks for all the help. It's good to know there are people out there who care. :-)

[hunda]

Hi sorry to hear about ur daughter I'm 23 and have crohns and my mom has lupus my only symtom was very severe. Stomach pain and was diagnosed after a colonoscopy I am now in remission and I take humira which I call the miracle drug my mom takes it as well for lupus. Have her get the colonoscopy done first as the upper endoscopy doesn't go far enough. To c

[Lauren6286]

Will,

   I'm so sorry for what you've been through. I went from 135 to my current 110, but not in two weeks.. more like 2 months, so I can see how your weight loss must have been frightening. Seems like I'm always dehydrated no matter how much water or gatorade I drink....they always tell me I'm dehydrated... I don't get it... Maybe my body is just not absorbing enough of the fluids.

How have you been doing since all of that happened? Are you well now?

Best Wishes,
   -Lauren

[willfrommn]

I was diagnosed with UC 4 years ago... when I first became ill it was temporary and docs passed it off like it was nothing.  About four months later I became very ill, throwing up several times a day, and having diarrhea many many many times a day.  I would enter the bathroom (barely making it) and would leave and turn around and go right back in.  In a two week span I lost 38 pounds and became very dehydrated twice both times rushed into the ER. I was in and out of 3 different hospitals / clinics before I finally got an answer but it took about 3 weeks to get an answer.  All I have to say it, try and remain positive and try and schedule as many tests as you can.  

[Lauren6286]

nhchic-

My primary suspected me of lupus as well (months before I was correctly diagnosed with Crohn's). Joint pain, like in RA, is also a symptom of Crohn's. I went to a Rheumatologist (I think that's the bone/joint doc), and he said I def. didn't have lupus or RA. Hope she gets a diagnoses soon so she can be on the road to recovery asap.

Best Wishes,
Lauren

[nhchic]

Hi..thank so much for all of your experiences. It's great to know my daughter is not alone, although I wish no one had a disease at all. I know it must be very difficult for all of you. This seems like a difficult disease to diagnose.

My daughter had the cat scan yesterday, and her they didnt see any tell tale signs of bowel inflammation. Her doctor will do endo/colonoscopy and maybe we will find some answers.

The doctor suggested she may have an autoimmune disease, like lupus(she doesnt have a rash), RA. Who knows. Im just glad the CS didnt show any disease or cancer.

She has a sed rate of 75 and CRP of 109.6. So, something is up, just not sure what.

Ill keep you all updated. Thanks again for you help. :-)

[lizziecee]

Hi - very sorry to hear of your daughter's current intestinal problems, which are devastating for both of you. Her weight loss is severe so I hope her gastro is prescribing some kind of nutritional drink, like Ensure or Fortijuice.  I went down to 85 lbs earlier last year and ended up having a naso-gastric tube fitted to take Osmolite (enteral nutrition) directly into my stomach. I had to be attached to a machine for 10 hrs a night for two and a half months in order to make the required weight for surgery so hopefully you can get some help now, and she can avoid what I have been through.

ESR - this is quite an old test - I used to have it 40 yrs ago when I was diagnosed at age 25 but my gastro doesn't use this now, as there are newer, more reliably tests. It stands for "erythrocyte sedimentation rate" and measures how long it takes for red blood cells to fall in a container.  If you just google ESR you will find out a lot more. An elevated lymphocyte white cell count is also indicative of IBD.

CRP = c-reactive protein.  CRP is a protein, which if levels are elevated, shows inflammation "somewhere" in the body, but not specifically where. This is a very important inflammatory marker.  The norm is 5 or under. When I was hospitalised for the 3rd time in 2009 mine was a horrifying 270 - my gastros said they had never seen a CRP so high.  I had ulcers and crypt abscesses throughout the whole gastro tract - mouth to anus and was started on Remicade infusions, which I will now have on an 8 weekly regime, for life

There is another fairly new test: Calprotectin Stool Assay test, which was developed here in Nottingham, England a few years ago. I don't know where you live, but you may like to ask her dr's if this has been done. It is very simple and cheap to do.  I have just done one this past week as my Crohn's has flared again, despite a resection of my small intestine and colon last March.  This again is an inflammatory marker. I think the norm is around 4 and mine is often 10, which coincides with active disease.

Although CT and MRI scans can show stricturing in the intestines, and are often done as non-invasive testing, the only definitive way to diagnose Crohn's or indeed Ulcerative Colitis, as far as I am aware, is by colonoscopy and multiple biopsies of any suspicious tissue which are then looked at by a pathologist.  As Crohn's most often starts in the terminal ileum area (next to the appendix) an upper endoscopy of the gastro tract, with biopsies should also be done to rule IBD in, or out.

Crohn's does not always present the same in different patients. Before I was diagnosed I had severe weight loss (went down to 65 lbs) and diarrhea/faecal incontinence, but no pain. In 1970 Crohn's was termed an "orphan disease" and there was very little knowledge about this insidious disease.  Colonoscopies were unheard of, and I had to have a laparotomy for diagnosis.  Meds too have come a long way since then thankfully. There only steroids available when I was diagnosed and these have played havoc on my bones, with the resulting osteoporosis and regular bone fractures. Gastros don't prescribe long term steroids now because of the serious long term side effects. In growing children, steroids do inhibit growth.  

Various genes have now been found to cause the disease, but what triggers them to malfunction, no-one yet knows, although research is continuing across the globe.  There is no Crohn's in my family, but a lot of cancer....father dying at 59 yrs of colon cancer, twin brother of brain cancer at 50 and all of my father's 7 siblings of some kind of cancer.  I believe there is a link there somewhere. I am one quarter Ashkenazi Jewish on my mother's side, and the combination of my parents' genes are obviously a factor....but don't understand why my sister and brother did not get IBD.

I do pray that you will very soon get some answers, and more importantly, that your daughter gets a good gastro who can help her manage her disease.

Take care,
Liz.

[kwazynana]

I too have been a zillion tests and my doctor is leaning towards Chrohn's also. But waiting for yet a new GI dr. to start all over again.  Just love the thought of having another colonoscopy...Had my gallbaldder removed 3 years ago.  Thought that was the end of this mess.  But no such luck.  I too am in my 50's. And am so frustrated I can't see straight.  My question to you is, do you also suffer from diarrhea and/or incontinence of your bowels.  The latter is the worst.  There can be nothing more embarassing and demeaning to go through.  I refuse to let this take over me,but somedays, it's just easier to give up and stay home.  I no longer work outside the home.

[lruth]

I don't have answers for you except to say how sorry I am and how I understand your frustrations.  I have been through many, many tests the last few months and still no answers although the GI doc is leanin towards Chrohn's.  After reading Lauren's post, I can see where I may have had symptoms as a teenager and have carried through to the intestinal problems now at age 50.

I have done a lot of research trying to find answers - I think this site is a good step, just keep researching.

Maybe google platelets and find out what are good levels.

I wish you and your daughter well.

God bless

[Lauren6286]

Hi.. I was just reading your post about your daughter and felt her and your pain with the situation. My name is Lauren and I'm 23yrs old. It took a very long time for me to be diagnosed with crohn's disease. I started having symptoms at age 14, however they weren't gastro issues. My symptoms progressed very,very slowly and I was a really difficult diagnoses. Although I don't suffer from the typical diarreah of the disease, I do suffer from constipation. I understand how she feels when she goes to the bathroom and has to go again 5 min. later.. It's called incomplete bowels and I suffer from that too. I have also lost a lot of weight as well. I used to weigh a healthy 135, and dropped at one point to 102.. right now, with the assistance of weight gaining protein shakes, i'm up to 110, but am dying to gain more. I never have any energy. I was anemic at one point...went for iron infusions because my stomache couldnt tolerate the iron pills. My crohn's is not typical, because my intestines have not yet been affected, but I have what is called perianal crohn's. I had every test under the sun to be diagnosed. I had multiple cat scans, rounds of blood work, mri, colonoscopy, upper and lower GI series (with barium contrast), and a specialized blood work test. The first cat scan didnt show anything, but a following cat scan, and the specialized blood test confirmed it. Being that she is 14, and I was 14 when I began showing symptoms of crohn's (swelling of my upper lip), I would say that crohn's is a def posibility. Crohn's typically begins to present itself between 14 and 18yrs old, but it may be congenital, even if neither parent has it. I hope some of this helps you. I feel it to be really comforting talking to others that are going through this... its very hard to deal with. Feel free to ask me anything else.. like I said... I've been through a lot...the hospital is all too familiar to me. Good luck with everything.

-Lauren-