Hello,
I am 25 and was recently just diagnosed with Crohns. Prior to my diagnosis I had consistent diarrhea for about 4 months. I had other health issues going on at the time so I put those symptoms on the back burner in order to tackle my other issues. I had no abdominal pain or any other crohns related symptoms so I just sort of dealt with it. It slowly however started to progress to a point where I was beginning to have to take imodium or pepto whenever I was working or knew I wouldnt be somewhere close to a bathroom which is when I finally decided to see someone.
My entire experience throughout this process has been extremely frustrating as the practice and doctor I have been working with have not been remotely helpful or even empathetic. There has been little to no dialogue between me and the doctor to the point where I was being prescribed medication by a medical assistant without anyone telling me what its for. The medical assistant is who gave me my diagnosis and she told me I had IBS and IBD in the same sentence and when I called her out said "Im sorry I get them confused". I just had a colonoscopy and endoscopy done two weeks ago where they told me I had Gastritis and stomach ulcers. They then told me I had inflammation in multiple areas that was "suggestive" of crohns. The doctor said that I still have to do a capsule endoscopy, bone density scan, and some more blood tests in order to know for sure. In the meantime she Prescribed me Budesonide 9mg per day, Mesalamine, and dexilint for the ulcers. When I asked about dietary restrictions she basically told me to google it. Which ofcourse i have but there is so much information out there and everybody I know with Crohns, their symptoms are so much more different than mine. Im at a loss for what to do next, and Im concerned about a number of things including weight gain from the Budesonide as I am someone who has high anxiety and have always struggled with body image on a serious level.
If anybody has any tips or advice for me it would be HUGELY APPRECIATED. (sorry for the novel)
Reply posted for kv1562.
I emphatically suggest you get rid of the doctor you are currently seeing. He obviously doesn't know or care how to treat you. There are so many gastroenterologist's out there that staying with the doctor you're seeing now will do you more harm than good.
This is a very, very frustrating disease and you will probably end up going to more gastro's than you ever thought possible. I'm on my sixth doctor; my last doctor.
This is an inherited disease. It's genetic. Genetics is still a very new science and not enough is known right now about this disease. It is now being treated or pushed to be treated by Chemo drugs. We don't have cancer. I've tried Remicade, Humira and Stelara. None of my symptoms have gotten better and the cost is prohibitive.
Please....find yourself another doctor. If you're not happy with that one, find a different one. We are the ones responsible for our own bodies. We know them intimately. Find a doctor who realizes that and one you can communicate with. It may take more than one try.
I hope you find the answers you're looking for. I've had this disease for almost 50 years and I'm still looking.
I wish you the very best of luck. Take control of you!
Reply posted for kv1562.
You need to dump your currant doctor and find one more sympathetic to your situation. Make sure he is a specialist in gastroenterology.
Reply posted for kv1562.
Hello:) Des your Gastro office have a nutritionalist on board? Basically, your best bet would be to keep a food diary, to see what foods bother you/cause symptoms. I was told the foods you eat cannot CAUSE the disease, but can make symptms worse. I have mixed feelings on whether certain food avoidance can help with a cure, though the gut biome research is fascinating. There is a ton of info online, and I am sure you will look and look, like I did for my son who was 10 when dx with Crohns. He really has no "trigger foods" that we can ID, to avoid, so it really is different for everyone. He has also seen a counselor for anxiety, which has helped him. Managing your stress will be a big factor in staying healthy. Wishing you a healthy journey:)
I am also newly diagnosed. I was put on Inflectra ....
read more
I was diagnosed with RA, Psoriasis, and IBS when I....
read more
I’ve suffered with IBS/IBS symptoms for many....
read more