Newly diagnosed

[kimmysue]

Just got the news 4 days ago that I have crohns, normally I would have been more upset about this diagnosis, but they also ran a test for carcinoid cancer, due to the fact I have been experiencing severe flushing( face/whites of eyes, arms and chest become blood red) and VERY rapid heartrate up to almost 200 BPM at times with severe cramping, followed by explosive diarrhea. By far my worse episode of this was about 15 days ago, had the pain, flushing, rapid heart rate, followed by 24 hours of severe abd pain and passing nothing but blood every hour or so. They did colonoscopy and made it to 45 cm when they found severe circumfirential ulcerations with severe narrowing, and had to stop there, it was too narrow, and too dangerous to try to go beyond this point.
I just finished a round of flagyl, I am not bledding at all anymore, but I am still having quite a bit of pain. They have arranged for me to see a gastroenterologist in St Louis, my appointment is Feb 7.
From my research looks as though I will forsure be places on steroid?..(is that prob right)....Not looking foreward to that, hear stories of swelling, weight gain, moodiness...yuck!!! In the last 2 years or so I have had other things going on, that I guess at this point may be related to the crohns...whatcha think??? I have had 12 yeast infections, never had any until 2years ago, I got the shingles(that really sucked)...and I have had a tremendous amount of joint/back pain, and oh the headaches.
So glad I found this site, I will be on here alot!!!

Thanks Kim 39 y/o

THanks

Kim

 

[mikeyarmo]

Welcome Kim!

I am sorry to hear about your recent diagnosis. I am sure it was a lot to take, but based on the other testing they did it seems that you are very aware that things could have been worse.

I am glad you are seeing a gastroenterologist soon as hopefully they will be able to help you get on an effective treatment plan.

Steroids are not an absolute certainty, but they are quite common treatment choice. They can be quite aggressive, which can alleviate your symptoms in a fairly fast amount of time compared to other drug options. As you seem aware though, they do come with their own side effects.

Sometimes you need to take a bit more aggressive measures to treat your Crohn's because it has advanced too long without being treated. You should definitely look around the forum to see steps you can take to reduce your pain and maybe improve your overall condition. For example, you might want to consider increasing your intake of omega 3 fatty acids as you are suffering from inflammation (which might explain some of the joint pain). You will also find some other common deficiencies found in people by searching through the forum (such as Vitamin D) which might allow you to find ways to improve your condition.

It is also important to try and reduce stress in your life however you can. Ensure you are getting enough rest and not overly exerting yourself through work or exercise as you need to give your body time to rest and heal.

We are looking to having you around and hope the forum will be a place where you can find the information and support you need to successfully manage Crohn's.

 

[Angrybird]

Hell Kim and welcome to the forum :bigwave: It is a shame about the diagnosis but yo have come to the right place for all the info and support you need. Steroids are not great but they tend to do such a good job at hitting the inflammation, bare in mind we are all different so you may be lucky and if you do end up on them you may not have many/any problems. Also if you have not already start a food diary, this is a good way to monitor what triggers sudden rushes to the loo and what does not. Keep an eye out for dairy, caffiene and foods with little pips and seeds (these can aggrivate the bowel). Finally I would say that you need to start writing down any questions you have and take the list with you on your appt on the 7th, that way you won't forget anything. Fingers crossed it goes well and let us know how you get on.

 

[David]

Welcome to the forum Kim, I'm really glad you found us and joined

Many of the symptoms you've described are classic vitamin deficiencies which are extremely common in people with Crohn's Disease. Yes, you'll likely be going on steroids as well as other medication but with the amount of inflammation and ulceration you have, that's not a bad idea in my opinion. However, have your doctors do a vitamin and mineral workup on you. At the very least, have them check vitamin B12, vitamin D, and folate. They're very likely already checking your iron, calcium, and magnesium, but double check on that.

We're here for you anytime. Please keep us updated as to how your appointment goes tomorrow.