Posted 5/1/2008 7:54 AM (GMT -6)
Many people diagnosed with crohn's, especially stricturing crohn's, present with a history of constipation not diarrhea. It sounds like you are in the bargaining phase of coming to terms with your illness. The prometheus tests are incredibly effective -- as a source of revenue for the lab that owns the proprietol rights to it. They are no where near being conclusive, however. If it's positive there's a pretty good chance you have crohn's. If it is negative, it is of no diagnostic value. Many people with crohn's do not test positive.
Crohn's presents in many different forms and that's why it can be so difficult to diagnose. For some, and I include myself, the disease does not present as a fulminating pan-colitis event with bloody diarrhea, excessive weight loss or any of the other manifestations associated with a full-scale assault on the body. Rather it follows a much more subtle, incidious course. While it is simmering away in a particular section of bowel (usually terminal ileum) the transient symptoms associated with the inflammation can be completely missed as we go about our busy lives. It isn't until it has been active for years, with multiple episodes of healing, that the cumulative damage from scarring and current inflammation results in an episode of obstruction. Or maybe a significant life stress occurs and you're hit with a bout of intractable diarrhea. The point being that it seemingly comes out of no where.
That's what happened to me 30 years ago just five months after the death of my second child. At the time I believed I got sick because of the stress, but in hindsight I realized that there had been little warnings for several years prior to that first nasty bout of illness. I suspect the stress of losing a child suppressed my body's natural defences and allowed the inflammation to flare out of control, but it had been there bubbling away for years.
Maybe in looking back you might remember a time when you had some odd pain and urgency after eating popcorn at the theatre, or an episode of vomiting and pain after a family barbecue, but at the time you just passed it off as a tummy bug. Maybe not. The important thing now is to focus on what next.
You say you want to avoid surgery. I can empathize with that. With crohn's, especially stricturing crohn's you do want to manage your disease medically as long as possible because it will come back. But there does come a time when surgery offers the best option. Is it possible for you to modify your goal slightly? Maybe your goal could be to do everything possible to reduce the need for surgery, while maintaining an acceptable quality of life. If you keep assessing your efforts to avoid surgery against your quality of life, and remain rooted in your reality, you will know when the balance tips towards the need for surgery.
A person can suffer for a long, long time with this disease before surgery is a matter of life and death. So if your goal is just to avoid surgery, you can suffer through incredible misery for a long time through force of will. I know. I've done that. But is that necessarily the best decision? For you? For your family?
Keep asking questions. Continue to be an active partner in this unwelcomed relationship you now must forge with this disease. But keep all your options on the table.