Diagnosis today..it's Crohn's

[akduck]

I got the results of last weeks colonoscopy / biopsies, and it is Crohn's. I also had several polyps removed, and some were Adenomatous and some Hyperplastic.
Had low vitamin D (taking 50,000 IU a wk for 8 weeks, then 2000 D3 a day after that), also low B12 - starting shots for that w/ my primary care dr. Also told to take a multi vitamin and calcium supplement. Will also see a nutrition person about diet, as I also have diverticulosis, and it wants a high fiber diet, while Crohn's wants low fiber....
I am weaning off prednisone over 4 weeks, 3 to go.
I am seeing my GI again in 2 weeks, and am not sure of what all to ask about. Any advice on what I should ask the GI, primary or nutrition person would be greatly appreciated!
I am so happy to have this forum and all the great people willing to share their stories, experiences and knowledge!

 

[Jennifer]

Keep a food diary so you and your nutritionist know what foods don't agree with you which will help you deal with less pain and discomfort etc. I never saw a nutritionist as my GI gave me all the information I needed.

Also keep a log of all your concerns and issues such as diarrhea (how often), constipation (also how often and how many days passed before you were able to go), pain (along with scale of 1-10), location of pain, gas, noises (gurgling etc. if it seems often), joint pain, back pain (where), hair loss (if any), mucus or blood in stool (how much and what color), color of stool (black, green, yellow, red), ulcers in the mouth or throat, fatigue, weakness, basically anything abnormal. Bring this log with you to your appointments and write down any and all questions that come to mind. A good GI will sit there and answer every single one of those questions.

Ask for copies of your blood work. Have all vitamin levels checked (even low on Zinc can make you feel bad and Iron especially, glad you got the B12 shots going, I get them too). Ask them when you should have blood work again to see if you need more Vit D/Calcium or less or if you need more B12 in your shots or more often. Ask if they plan on using a maintenance drug to help keep you in remission (which I hope you're heading towards). Ask your GI about how much fiber you should have (nutritionists aren't GI specialists). Also ask your GI what you should do if you start feeling sick again from tapering off the Prednisone. Usually they tell you to call the office but sometimes they aren't in the office or its the weekend.

Are you only taking Prednisone?

 

[akduck]

Crabby - thank you! This is very helpful. I have been keeping a food diary, but did not think to keep track of stools. I will do that now.

I had a blockage that perforated on April 10th, and ended up with an abscess. The surgeon in AK did not want to operate on me because Crohn's was suspected, so I was sent to UW in Seattle. I was in the hospital for 8 days on IV antibiotics and predinisone. They couldn't get a drain in the abscess at UW, so I came home on the prednisone and 8 more days of antibiotics, in the hope that the abscess will self absorb. While I come off the prednisone that seems to be the main concern - if the abscess is going to act up, so I have instructions to take my temp 2 x daily, be very aware of pain in the area. I know to call the dr or go to ER if I am having a problem with that. I know they may do a CT scan at some point to see if the abscess is gone, but I have had so many scans / xrays over the last few months that they aren't sure when they will do another, as long as I am not having problems.

I am only taking Prednisone now, and today is the first day of starting the taper. The dr said he will start me on another drug when I see him in 2 weeks - he did go over several options at my last appt., and said he would make a decision on what to use when he had all the test results back.

I will ask him about the fiber, and I will get a copy of the blood tests from my primary care dr. I am very fortunate that my primary and GI are very willing to work together with me - the GI is a 3 hour drive from where I live, so makes my life a lot easier!

It is wonderful (and encouraging) to see you are in a long remission!

 

[Jennifer]

My first GI was 4 hours away. Sometimes you have to be willing to travel to see anyone good. Glad that you're able and willing to do that.

As far as the x-rays go, could you maybe have an MRI instead of the ct scan since MRIs don't use radiation? Just a suggestion.

Keep us posted on how the taper and your appointment go.