Is it possible to test negative on blood tests but actually have Crohn's/IBD?

Yes, it is possible to have Crohn’s Disease/IBD even though you have had testing results that are deemed negative. That’s what makes this particular disease very frustrating and difficult to manage. I have had Crohn’s disease since age 19 and most probably had it when I was 17. Not until I had emergency surgery while away for my second year of college and had 3 1/2 feet of bowel removed & an official biopsy of Crohn’s did I actually know that I had this disease. I’m now nearly 67 years old and have had 34+ surgeries either specifically for Crohn’s (8 bowel resections & a permanent ileostomy) or related to treatments/medications to treat the disease. From age 17-19 until I had the first surgery for Crohn’s, I had symptoms that should have alerted doctors that something was amiss. Also, the fact that my mother also had the disease should also have signaled the onset of the disease. However, back then little was known about Crohn’s compared to the knowledge base that exists today. Add to the advances in treatment and the wide array of biologic medications that are available today, my medical history would most likely be very different than it is now.
Anyone who is dealing with the possibility of having Crohn’s Disease needs to be personally responsible for their own healthcare. Being a passive patient is not in your best interest. Getting to the right doctor that is trained to treat this disease or IBDs in general is a must. Even then you need a physician who isn’t dismissive of your symptoms and history. It took several years before I found a physician who had more than a passing knowledge of the disease. A workable, comfortable doctor-patient relationship is a must. That means both sides must respect the other and can handle the back and forth agreeably.
So, don’t be discouraged if you haven’t positive proof that you have the disease. It sounds as though you haven’t been to the right doctor yet. Many years of contact with other Crohn’s/IBD patients has shown that getting to the right physician & having a good working relationship of trust is a vital link in treating these range of diseases. So hang in there and I hope and pray that soon you will get the answer to the questions you have.

Dear Heathg77,
I’ll certainly pray that u get in to see a competent doctor. I wish I knew someone that I could recommend, however, that’s something I can’t do at the moment.
I do understand the feelings that you are having. There have been times when I didn’t have a good doctor. It is hard to keep a positive outlook when one is in constant pain & dealing with non-stop diarrhea. However, when with a physician, having your medical records, a list of current medications & supplements, a diary of symptoms, & a list of questions from you, will go a long way to show the doctor that you are aware of how the disease has been affecting you. Being respectful & honoring his requests for treatment(s) taking medications, will help foster a relationship of trust between the two of you. If you have problems with treatment regimens then make sure you write these down in your diary so that you tell the doctor as precisely as you can the exact nature of the problem. Giving vague explanations or just saying things such as “Well Doctor, I just don’t like the medication“ or “I just can’t do this”, will tell the doctor you’re not serious about wanting to take care of yourself or that you aren’t willing to cooperate with his treatment regimen. This will damage the relationship with him/her. If you’re having legitimate issues with taking the meds or trying to do other treatments that he has prescribed, that’s why it’s important to keep a symptoms journal and taking accurate notes so that you have a definite reason or explanation to give to/doctor.
Hang in their & take good care of yourself. This is a difficult disease to have to live with & we can use all of the help that’s out there now so we can live a life to the full. I hope this has been helpful to you. If you wish you may contact me via this website. You’re more than welcome to do so. I hope you get some relief & rest tonite. Things will get better for you.

Hey there Heathg77,
Hopefully you can find a doctor who is trained/experienced in treating Crohn’s/UC. Don’t be afraid to ask the question relating to that particular need. You want a doctor who has a deep knowledge of these diseases and has a good track record of treatment. Internet searches can be useful but word of mouth from other patients often produces better results. The point of keeping a journal of symptoms, a list of currently used medications, vitamins, OTC products, & medical history, and a list of questions to ask the doctor can’t be overstated. Stating your symptoms honestly, precisely, and transparently is important. That’s why it’s important to keep a journal of your symptoms. When you are in pain, exhausted, as well as frustrated, it’s hard to remember everything. There is no shame in writing things down. Also, if you are blessed to have an advocate, perhaps a parent, a significant other, who knows you well and understands your illness, they can be of help in explaining what your symptoms are & how they have affect you. Sometimes when it is hard to explain what’s happening with you because you’re in pain and it’s hard to think an advocate can be helpful in getting a clear picture of what’s happening to you physically. However, as much as it is possible you should be the one transmitting the information to the doctor. Don’t depend on others to do your part.
Also, should there ever be a time when surgery is your only option left in dealing with the disease, you want a surgeon who has vast experience and knowledge as well as a good track record of success with patients who have Crohn’s/UC. A question I have asked a doctor for a referral to a surgeon is,” If you were in my position or if it were your mother or father in my situation, who would you want to be the surgeon?”
I hope this has been of some help to you. It is hard to deal with and cope with Crohn’s/UC. But you need to be your own advocate and not have the mindset that the medical establishment and doctors have all of the answers. When you aren’t getting the help you believe you need, don’t be afraid to speak up for yourself. That, of course, needs to be done with an attitude of kindness, grace, & respect. But it needs to be done. No one knows you or your body like you do. So, advocate for yourself.
There also may come a time when you may need some help emotionally & psychologically. Don’t think your a failure or that it’s a sign of weakness to reach out to those who offer help from those fields of medicine. Crohn’s/UC can be devastating to a persons’ self esteem & psyche. Again, when choosing a doctor in these fields, you need someone who has more than a passing knowledge of these disease. Even among the medical community there are those who are misinformed about these diseases, its origin, and effects. Also, it can be very helpful and comforting to talk to someone who works in the area of spiritual care. That person could be a minister, pastor, or a chaplain. Make sure that when you are using this avenue of help that the practitioner’s view of life & belief system is agreeable to you & they have some kind of training related to Crohn’/UC/IBD.
As I’ve said before, I will be praying that you can find the right physician with whom you can have a good, honest, & trusting relationship. Hang in there and take good care of yourself.

I would personally push for more testing. My bloods and stool samples have never really been a great indicator for me. As soon as I had a camera in and biopsies taken, it would be clear I had active disease.
I hope you can find a doctor that will listen to you and investigate further!
- Sahara (team member)