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Newbie - Looking for advice

Hi,

I had a colonscopy on Monday and am waiting lab test results. I talked to my doctor this evening over the phone. She said she is suspicious of Crohn's Disease, but would not be able to give a complete diagnosis until after the lab test results and further testing.

She said my small intestines were definitely inflamed and if she had to guess she thinks I have a mild to moderate case of Crohn's disease.

My questions are as follows:

1) What questions should I ask my doctor during my follow up visit, which is not for another 2 weeks?

2) Is there anything productive that I can do in the mean time? Should I go about living my life as close to normal as possible?

3) I have the following symptoms of Crohn's: Occasional Night Sweats, Constipation, Black Spots on Stool (sorry for being graphic), and mild abdominal pain.

4) Would you get a second opinion? And if you get a second opinion, do you have to go through another colonscopy or would they send the test results to your new Doctor?

5) What is a mild to moderate case? I asked the Dr., does this mean that the disease can be controlled with medicine and surgery is unlikely. She seemed to indicate yes, but would not say conclusively.

Anyways, sorry for writing a book. I'm just scared right now. I guess it is just all of the unknowns and just having to wait. I've read many of the posts on here and the best advice seemed to be to take this 1 day at a time, and not to worry about the future.
 
Welcome PJ glad your here. When I had my colonoscopy my doc said right away it was Crohn's. If your having pain change your diet. Stay away from ruffage type food and high fiber food (that's what I was told may be diff for other people). Eat easily digested food until you see your doc. Black stool could be old blood. Always seek a second opinion if your not happy with your current doc. Any doctor should welcome a second opinion if a pt. feels he/she needs it. Take your chart notes with you don't trust they will be there when you arrive. Often times they don't make it by your appt. If you have not tried any meds and you don't have a blockage I wouldn't let them do surgery. Surgery would be a last resort for me. I was DX in 97' and haven't (knock on wood) had any surgery so far. The amount of pain, symptoms, and the meds that work or lack thereof would probably help the doc decide how severe your disease is. It may be how much crohn's you have in the intestines and or colon as well. All this is just my opinon and there are many more people on the forum with a lot more experience and really good advice. I'm sure you will get many helpful replies. Best of luck and I hope you get to feeling better soon. Never worry about writting a "book" we all have done that.
 

Crohn's 35

Inactive Account
Hi PJ, (ha my initials too lol) Welcome to the forum. I know how scared you are, we have all felt your frustration and feelings of this disease. As Lucy says we all differ and we can only give our experiences in our own journey. I must tell you before you go see a second opinion this disease is very hard to diagnose for some. I had months and months of tests, scans, scopes, you name it... took about a year of hell. That led to my first resection. I would wait for the results of your biopsy, and see what she says. Mild to moderate is the early stages and if you can keep it at bay you may or may not get any worse. Being on the low residue diet, helps along with avoiding dairy and raw veggies.

Black spots is probably blood and some do bleed, I do not. I get night sweats but mostly on Prednisone.

You have alot of questions I would too but for now just wait (yeah I know how hard that is) until you get the results. Medications can be of great help, most likely Pentasa and or Entocort could be the choice she may give you if it is Crohns disease. You can lead a somewhat normal life, all you have to do is gather as much info as you can and remember stress is a culprit to this disease so try to relax. Again, I know that is hard. You need to rest it is important and be on good quality vitamins Calcium and most importantly Vitamin D. We are here to help you, let us know what your doc says ok? :hang: Glad you are here!
 
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DustyKat

Super Moderator
Hi PJ and :welcome:

I can't add to the great advice you've already been given except to say good luck and welcome aboard!

Take care, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
If your having pain change your diet. Stay away from ruffage type food and high fiber food (that's what I was told may be diff for other people). Eat easily digested food until you see your doc.
Hi PJ, welcome!! I'd say Lucy had some good advice there!! You can't really know anything until your follow-up so just take it easy on your gut!! Good luck!!
 
Location
Scotland
Hi PJ,

The only thing to clarify is where the inflammation is, you say you had a colonoscopy which showed a problem in your small intestine, however this test is for the large intestine.

If the inflammation was found only in the colon then its possible that other IBD conditions could be diagnosed (by biopsy). Inflammation in the small intestine is probable crohns.

G
 
One question I didn't ask during my first app with my GI was who do I get in touch with if my symptoms get any worse? You never know what might be round the corner even if your symptoms are not too bad so far. You might also want to get blood tests to check your levels of certain vitamins as well if this hasn't been done yet.
I write down everything before my appointment to make sure I don't forget anything and also write notes during my apoointment.
I hope that you get everything sorted.
Sam
 

Astra

Moderator
Hi PJ
and welcome

I can't add anymore to the great advice you've been given, only to welcome you and glad you found us, lots of support and friends here for you.
lotsa luv
Joan xxx
 
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