Crohns Disease - What is Crohn's disease, how is it treated and what are the symptoms?
Expert: Odette Yuhas - 1/26/2005
Question -------------------------
Followup To
Question -
Daughter this AM went through emergency surgery to correct a perforated lower intestine, losing 4ft of track in the process. Doctor suspects Crohn's disease. As a layman, what is it I need to know about this condition? Daughter is 36, if that's germaine.
Answer -
Hi Don,
Yes, sounds like Crohn's Disease. CD (for short) is a mutated gene called Nod2. There is nothing you or anyone else could do to prevent this. It is a Chronic Disease and there is no cure. She will need medications to prevent her from having more attacks. Please tell me what you want to know, as there are so many things to tell you.
Odette Yuhas
For years now, Amy has had recurrent bouts of severe lower back pain, often accompanied by nausea/vomiting. These bouts have been termed as migraines because, we were told, they were caused by a constriction of blood flow, as in normal migraine headache. Considering what has transpired this week, I can't help but wonder if she has had Crohn's Disease for quite some time and it's been misdiagnosed. An obvious question, of course, is whether pain in the intestines could radiate and be felt as lower back pain.
Understand that Amy, though 36, has the overall mental capacity of a 15 year old, having suffered brain damage from ensepthalytis when a todler. One of her greater difficulties involves translating physical feelings into understandable and logical wording. For instance, when describing to us the pain she was experiencing from the intestinal infection, she stated that her muscles were hurting. It wasn't until she called us at a friend's house saying that she was in so much pain that she couldn't move that we had reason to believe she was suffering from anything more critical than a strained stomach muscle.
The question I'm trying to ask with all that explanation, of course, is that is it possible that the "migraine" pain she has been suffering with for years in her lower back was really a symptom of Crohn's Disease being misdagnosed because of poor communication?
Answer Good morning Don,
Yes, the pain can radiate all the way up including headaches! It is normal for us who have this disease to have many misdiagnosed. It took years for many of us. We have been diagnosed with such things as Lupus! The only real way to diagnose this is via a CT scan from what I have been told.
The intestines get so swollen that it causes pressure on the other organs, also major back pain. I was diagnosed in my 40's. Each of us are different because something triggers the NOD2 gene and it rears it's ugly head at different stages in our lives. When Amy described muscle pain, she was also correct. CD can cause muscle damage and your joints ache, we also have a tendancy to get arthritis as well. Your daughter knew where she hurt and she was right!
The vommiting was from the obstruction. Please be careful as she now needs medications to help her. If not treated, she could have the "good intestine" go bad. If your doctor has not suggested that she take medication, find another doctor!
I also thought I had a pulled muscle when mine started the pain. I had to get a "snake" because my plumbing was backing up. I thought I had pulled the stomach muscle as the snake was heavy. I never paid much attention to having to excuse myself from the dinner table or throwing up on occasion. The answer was CD!
CD is a Chronic Disease and there is no cure, but there is help with the medications. Please, please be sure she gets them and once she gets them, takes them. One drug that will help is Imuran. It is an auto immune medication. You see, this is an auto immune disease. Our immune systems go out of whack and starts attacking us, and it starts at the intestines as they are the largest part of our organs. This is nothing to take lightly as it can be deadly.
Please do not hesitate to contact me and if you wish, I will give you my personal email. Just ask for it and you have it. You will have so many questions and I may be able to help. There are foods she needs to stay away from and if your doctor doesn't know, then she will suffer for nothing. Foods can bring on the attacks that are so severe, that she can not stand up.
Again, if you want my email address, please let me know. You and your family have a lot to learn and I will help as much as I can.
Tell Amy that Odette, a sister of CD says get well!
Odette
