Please help me, I think I am losing my mind!

[Funnel]

Is this Crohn's or something else?  My rheumatologist is considering possible Crohn's with the GI problems that I have been having for the last 3-4 months now.  I have intermittent diarrhea and rectal bleeding of no known cause.  I have had an EGD which showed chronic gastritis and chronic esophagitis.  I have had a colonoscopy which showed chronic nonspecific inflammation.  I had a proctoscopy that was normal following another bout of bleeding that was followed this weekend by severe watery diarrhea.  This all seems to flare and recede with my menstrual cycle.  Over the last year I have had spells of intermittent diarrhea and rectal bleeding.  I have arthritis pain that moves around from joint to joint.  I also have psoriasis.  The ER doc does not think I fit the usual Crohn's patient but I am going to see a GI doc that specializes in inflammatory bowel disease the 15th of next month, provided I do not go insane with all these health problems and no answers.  Yet another piece to add to the puzzle, my mother's side of the family is of Jewish German ancestry which I understand is more prone than most to Crohn's.  My CBC was all out of whack.  White count was high and several other things  along the way were high or low.  ESR was slightly elevated. They gave me IV fluids and Pepto Bismol and sent me home.  If this is Crohn's how do they treat it?  How do you live with these symptoms?  

[mandyjane46]

thanks for all that info.it took alot of time and I really appreciate that.
yes, I checked the calprotection stool essay test and you have to go via a GP.as you adviesd Ill need to get a gasto referral,Currently he was referred to endocrinologist due to jaundice .he is testing  him for coeliacs..theres a delay of 6 weeks while my son eats wheat to get anti-body levels up..meanwhile he feels really poorly ...slleps forever..has abdo pain..mouth sores ..boils and bowell upsets. I can bearly bear to see him go through this.he is so miserable poor kid and  we both miss my bouncy happy  boy
I guess I need to  to be more proactive...get him referred now.I am assuming that he could be tested now for Chrons? It had me laugh when you mentioned the Jewish link..my grandma came from Krackov..a Polish Jew who escaped to england in WW2..
can you test for Chronns in the blood?.
MJ

[lizziecee]

Whew, so many paramaters to consider, and I am not a doctor, just a very concerned long term Crohn's patient who wishes to help others, with a socially unacceptable disease.

Mandy..I have only had the calprotectin stool assay test, many times, through my gastrotenterologist at my hospital, Derriford in Plymouth.  I don't think GP's even know of this test or can order it.  
My current  Gastro, who worked in Africa in a leper colony and  then at the Royal Marsden Hospital in London,  got so despressed with young people with cancer( I have breast cancer also) that he decided to go into gastrooenterolgy because he said it was the most exciting area of medicine where he could make a difference...and he has to me.

I really don't know what to say to you....my first symptoms of Crohn's were severe  dirreahoea  weight loss, down to some 5 stones, but not anorexic, still eating normally and no nausea...but Crohn's can present so differently.

However, the jaundice does concern me...I never had that and it is a serious cauce for concern.

Please.....ask your GP for a referral to a gastroenterologist....| struggled for almost a year in 5 different hospitals in the London area some 40 yrs ago before I was diagnosed by a laparotomy operation with Crohn's...thankfully some 40 yrs later,still here, only because I am so proactive with my disease and was the first person in England to get methotrexate , off licene, when I googled "Crohn's  latest""....

Crohns ...none in my immediate family , but every gastro I have seen in 40 yrs have always asked me if I have any Jewish bloodf? Duh?  Turns out my elder sister believes our maternal grandfather was Jewish, from Barnsley,  but the synagogue was burned down in WW!!..so no records. There is some research that Ashkenazi Jews from Eastern Europe do have a specific gene that predisposes them to Crohn's and breast cancer....and yes, I have both diseases!

Talk care, talk to me if you wish, always happy to respond...and take care of your son...
Liz.

[mandyjane46]

Thank you SO much.That is really useful advice for me. i live  in England so can I get hold of this or do I neen to go through the GP? Our current GP has decided that my sons diagnosis is chronic fatigue caused probably by teenage stresses. He made a reasonable recovery from the hepatitis last May   and returned to school and has now had a return of the jaundice and feels unwell and very tired.I agree one of his symptoms is tiredness but Im not happy to leave it at that. IM not sure if she will refer him for this so if I can do it I will. Could you advise me on this?
Once again this was brilliant advice.THANKS
By the way can people of normal weight suffer from Crohns? does it run in families? Ive always had significant problems with abdo pain mouth ulcers skin problems  etc and in my teens was diagnosed with colitis and IBS .i was always normal weight too.
yep im being greedy with your time but it is really appreciated .

[lizziecee]

Hi and welcome to the Crohn's forum.

There is one non-invasive, cheap test you could ask for:
calprotectin stool assay test

I live in England where the test was developed, so not sure if this is available in other countries.

All your son needs to do is give a stool sample. If the calprotectin level is out of range (normal is around 20, mine can be as high as 40), this is a pointer that there is inflammation in the GI tract. This does not identify specifically where, but gives the gastro sufficient infomation to go ahead with invasive testing, such as colonoscopy and/or endoscopy. As far as I am aware, and I have had Crohn's for some 40 yrs now, the only definitive way to diagnose Crohn's is by taking tissue samples (biopsies) of any suspicious inflammation in the GI tract, which is then looked at by a pathologist. If it is Crohn's, or indeed Ulcerative Colitis, appropriate medications can be prescribed to ameliorate the symptoms.

Good luck and take care.
Liz, Community Leader.

[mandyjane46]

Any advice would be gretefully recieved. I have a 14 year old boy who has a long history of allergies..ezxema,asthma,hayfever, allergies to cows milk and gluten. He has bouts of diarrhoea ,constipation ,abdo pain (usually above belly button) he has always been quite stocky (not fat but stocky)  until recently when a latst bout has slimmed him out. If he eats whaety food or too much milk he gets bloated,adbo pain, constip and ordiarhoea,boils on his legs,mouth ulcers and sores around his mouth. In last 5 months has now develpoed jaundice ? viral as all else is ruled out.Ive treated him as a cealiac as he has a terror of needles and hospitals and has always avoided this kind of thing.(after a bad experience on holiday at 6 whe he was in hospital and had to have a drip put in.). I assumed that he probably was cealiac as several of us in the family have bowel problems related to food types.
recently a frind suggested it could be Crohns. I assume that if he generally enjoys food and is of normal weight this would be unlikey? His problems seemd to have got worse as he hit puberty.I dont want to be a bad mom here but Im worried about putting him through unnecessary tests that will freak him out. Ive just about convinced him to have blood tests..
Thanks anyone
MJ
Any advice?

[crohnscommander]

Prometheus labs makes a test called the IBD Serum 7 panel, or something like that. It's not a 100% definitive marker for Crohn's but it can give your doctor more support for the diagnosis. Of course, 23andMe is lowering the price of their service to $399 soon, so that might be a good option to get tested for some of the known Crohn's susceptibility mutations.

[finepickle]

Hi Funnel,
I suggest you check into celiac also.  Celiac is an autoimmune reaction to wheat gluten in the diet, and causes GI symptoms and other autoimmune diseases, like arthritis, diabetes, neuropathy, etc etc.  Celiac hits the small intestine and destroys the villi lining it.  You might want to try an elimination diet and see if you can pinpoint any food items affecting you.

[e.r.boy]

They have found up to 32 genes related to Crohn's and some may be related to other autoimmune diseases such as rheumatoid and psoriasis. I have had allergies my whole life , which developed into asthma, and 20 years ago they found evidence of Crohn's. There are many treatment options, some which will help your other afflictions as well. With genetic mapping, they may actually have some really good treatments coming up.