Fiancee W/ Crohn's

[natemomma27]

My fiancee has Crohn's. He found out in 2003 when he was admitted to the hospital and was required to saty for almost 2 weeks due to it. However since then, he has not gone back to the doctor and we are going on 5 years now. We have a 15 month old son and although I'm not sure what effect Crohn's will have on him, I'd really like my fiancee to see a doctor and get some answers for all of us. How can I convince him to go back and get treatment? Honestly, I'm not even sure what Crohn's is in its fullness. Does any one have any good websites to recomend for research?

[anne08]

i fully agree with dommychrons,  although he might not be having pain right now he should be getting his blood checked regularly to make sure his electrolytes are within normal ranges.  Chrons disease heals the intestinal lining with scar tissue that can't absorb nutrients and electrolytes the way your original intestinal lining could because it's now modified and doesn't have the same kind of cells.  I have ulcerative colitis and although it's not the same as chrons, they present similarly and both heal with different tissues that are not the original intestinal lining so both diseases over time will cause lack of nutrient absorption as they progress.  I've only had ulcerative colitis for 2 years and i'm a regular blood donor but am now having difficulty keeping my iron level high enough to donate since my body is having difficulty absorbing all the necessary nutrients.  I have to take iron sulfate tablets just to be able to keep my iron at the minimum level now.  he may not notice right away if his electrolytes are out of whack but it can cause harm to him with out him knowing it.  For instance if your potassium is too low it affects your heart causing things like abnormal cardiovascular conduction, if your sodium is too low it affects your central nervous system, decreased magnesium could cause cardiovascular arrythmias, etc.  So if he wants his interaction with the disease to be minimal i would suggest at least having his blood checked regularly if he's willing to do so, to avoid causing damage to the rest of his body.   Prevention is always the best treatment.  Good luck :)

[dommychrons]

well what i could tell you is that i was the same way .. i did not want to see a doctor.. i jsut went on with my life and totally ignored the disease... i tried a few meds that didnt work and quickly just stopped ... i started getting a lot of pain and hadto get rushed to the hospital .. and had to get surgery ... my potassium level was so low from chrons . cause my body couldnt absorb any nutrients anymore that they say my heart could of flat lined at any point ... so if he doesnt want to see a doc cause he doesnt have flare ups and is fine .. then let it be as long as he doesnt have pain and isnt running to the bathroom like a mad man .. but make sure he atleast gets regualr blood tests and make sure his levels of nutrients are good ..

[lizziecee]

Hi there - so sorry to hear your fiance has Crohn's - it is a wretched disease.

Crohn's disease manifests itself in many different forms, particularly fistulising and/or inflammatory. They both need different treatments, but having said that, if the patient is getting many flares (severe diarrhea, weight loss, pain etc.) they do need life time immuno-suppressants.
I got Crohn's at age 25, in 1970, so have had it for 38 yrs now, and still learning about it. I had some 30+ yrs of steroids which have wreaked havoc with my bone density, so that is not the way to go these days, when there are so many new meds that were not available to me then.

I don't fully understand why you think your fiance needs to get treatment? Is he ill, unable to work, in pain, has constant diarrhea or weight loss? If not, I would leave well alone. My many different gastros have told me some Crohn's patients only get one or two "flares", others, like me, have what is called "intractable disease", which does not go away, and causes serious malnutrition, rectal haemorrhages etc.   I absolutely have come to terms with the fact my disease is not curable, but it is treatable, and I have a great gastroenterologist who monitors my situation with monthly blood tests (I self inject the cytotoxic drug methotrexate weekly) and I have regular endoscopies of the small intestine, and colonoscopies of the large intestine, plus DEXA bone density scans.

There is some scientific evidence that Crohn's can be genetic based - the NOD2 gene is one that has been identified as being susceptible for Crohn's - but my late twin brother, surviving elder sister and late parents did not have Crohn's. My late father died of colon cancer, so I am at high risk for that, but I figure I could also be hit by a bus! I don't dwell on my genetic problems, because that is something I cannot change.  My GP said some years ago: "Liz, you were just dealt a bad hand of cards when born". But, that is not a life sentence, and although I also have breast cancer, I have a very good quality of life.

What specific answers are you looking for? Crohn's is an auto-immune disease, where white blood cells (I think it is the T cells) proliferate and attack one's own body - in this case the intestines, as if they were alien tissue. It is similar in cell abnormality to rheumatoid arthritis, also an auto-immune disease, where the white cells attack the joints. No scientists have yet discovered what causes Crohn's, and there is no cure. But...there are many new drugs out there now, particularly the immuno-suppressants, that can control it. It is not usually a life threatening disease.

I haven't found much solace in web-sites, but the Mayo Clinic website is brilliant - factual and up to date. I don't think they will tell you much more than I have tried to precis in this post.  You might try looking at the American Crohn's and Colitis Foundation of America (CCFA) which is also up to date. I live in England and belong to the National Association for Colitis and Crohn's (NACC) and they have a website also, which is quite informative.

If your fiance has no current symptoms, I would not press him to see a doctor - stress can cause a flare. Of course, you would do well to educate yourself about this insidious and little known "orphan disease", but be easy on your guy.

If I can help in any further way, please post your questions and I will try to help.

Take care,
Liz.