Just diagnosed with Crohn's Disease?!

[BriteMornenStar]

I've been sick for about a year and a half now with really REALLY bad joint pain, back pain and everything pain, fatigue, dizziness and my head felt like a balloon floating in the stratosphere. After a routine blood test my Dr. said, "Hey, your hemoglobin is low, like really low". OK, what does that mean? We all thought I was losing blood in my colon, hence the many trips to the gastroenterologist that was 90 miles away. 1st colonoscopy and endoscopy was bad enough: cold room, dehydratation and small veins = agonizing IV. Woke up from surviving that and the "Suprep" bowel cleaning process and was told, "OK, no Crohn's in large intestine, everything's fine. Ok, but my Hemoglobin is "small and pink"? WTF does that mean? Second procedure, pill camera. OH, your small intestine is inflamed, you need mega prednisone (like elephant dosage of prednisone). OK, so now my hemoglobin is small and pink, and low and now I can't sleep. GREAT, right? OK, come back for another colonoscopy and more Suprep (hell) and we're going to use another scope, a LONGER scope. More biopsies. So DR. says basically, hey, we're treating you for Crohn's disease, even if the biopsy comes back negative, we're still treating you for it. Now take 1100 mg of iron daily along with the progesterone and we're sending you to a hematologist. So, here I am 3 months into the testing process and I have a diagnosis, kinda?! I am feeling better on the prednisone and can actually sleep (kinda). My joint pain went away completely and my hemoglobin levels went from like 8 to 12.4 (YEAH). I don't feel dizzy or drugged up anymore and I'm not falling over when I walk (which is a good thing). Now I just need to figure out what to eat and how to live with this disease. Apparently eating gluten makes my small intestine ANGRY, :voodoo: so I have to eat gluten free etc. Does anyone have any advice for me on how to live with this disease and not just survive with it? Thanks for listening to my rant...:hug:

 

[2010mustang]

Keep a journal. List symptoms like frequentcy of bm, pains, foods which aggrevate, medication problems or unusual symptoms. List questions you might forget before your next appointment.

 

[ronroush7]

I agree. You might want to see a nutritionist.

 

[BriteMornenStar]

I have an appointment with a hematologist in 2 days and am currently working on seeing a nutritionist/dietitian. :dusty: Just looking forward to getting this "manageable" at this point, but I still get bad joint and back pains when I eat basically anything, just some pain is more tolerable than others :frown:

 

[ronroush7]

You mentioned something about cold room. Does that happen s lot? If it does, I am wondering if you should get your thyroid chdckefd out.

 

[David]

Welcome to the community. The best advice I have for learning to live with Crohn's is to read sites like this one and educate yourself to the point of becoming an expert. That way you can develop a good treatment plan in conjunction with your doctor and be your own advocate.

I wish you all the best.

 

[Beez]

Hi I have just been diagnosed with Crohns after a double balloon colonoscopy this is my firt time joining any group have to wait 2 werks before appointment with specialist so no medication or any thing yet
I would be grateful for advise on where to find out about diet etc thankyou

 

[ronroush7]

A nutritionist could help you out. Welcome to the forum. I am sorry that you have the disease but this is a supportive group here. Feel free to share any questions you have. Please keep us updated.

 

[buttER]

Hi
I think the general consensus is that while you are in a flare you need to be especially careful about what you eat: you intestines are already inflamed so you do not want to irritate them any more.

Unfortunately it seems that what is good for one person does not work for another.
You can look up advice about diet during flaring on this site, or else post questions if you are unsure.

I hope you get a dietician who takes this seriously. I had one at the hospital who wanted me to go on a healthy eating diet (in her eyes) that would probably be good for most patients, but not IBD patients! My new dietician is very aware of the needs of patients with bowel inflammation, thank goodness, and she also has great computer programmes to check diet against nutritional intake.

Good luck and I hope you are feeling better very soon. I agree with David, it is overwhelming, especially at the beginning, but the best thing you can do is educate yourself so that you do get what is right for you.

 

[ronroush7]

Hi
I think the general consensus is that while you are in a flare you need to be especially careful about what you eat: you intestines are already inflamed so you do not want to irritate them any more.

Unfortunately it seems that what is good for one person does not work for another.
You can look up advice about diet during flaring on this site, or else post questions if you are unsure.

I hope you get a dietician who takes this seriously. I had one at the hospital who wanted me to go on a healthy eating diet (in her eyes) that would probably be good for most patients, but not IBD patients! My new dietician is very aware of the needs of patients with bowel inflammation, thank goodness, and she also has great computer programmes to check diet against nutritional intake.

Good luck and I hope you are feeling better very soon. I agree with David, it is overwhelming, especially at the beginning, but the best thing you can do is educate yourself so that you do get what is right for you.

I agree. Also, I have a nutritionist who says you can do all the right things but still have a bad day with the Crohn's.