Received diagnosis, mixed feelings

[jimmyt1989]

I finally received a diagnosis of Crohn's this afternoon. In one way I'm discouraged, yet at the same time I'm glad I finally know why I've been feeling rotten. I'm looking forward to beginning treatment after a couple of years wondering what was wrong with me. I'm sure many of you have felt this way as well.

Some of you may recall, a little over a year ago I was having Crohn's like symptoms and test after test came back negative. They could only find one small ulcer about this time last year. The biopsy was negative as well. Evidently, it hadn't progressed far enough for a diagnosis. Today, the CT scan clearly revealed thickening in the Ileum and Cecum area. My mom has Crohn's in the same area, except that her's was only in the Ileum.

Anyway, I guess there is one other silver lining. I'll get to regularly interact with some quality folks now. :biggrin: You guys have been excellent throughout this process, and I hope that I can return to the favor to someone else in the future.

 

[lookame]

Welcome to the exciting world of crohns disease! We are glad to have you! There is always a silver lining to everything bad. It sucks but with patience and medicine you'll start feeling better. There are support groups as well as forums like these which you can frequent for advice and support and of coarse general cheering up and make fun of your disease. I was diagnosed in Aug of 2010 after my blood results came back, my colon was to ulcerated to differ between crohns or UC. The colonoscopy I had the yr before (aug 2009) also showed patchy ulcers but that doctor refused to contact me back with a clear diagnosis and the ER docs just threw medicine at me and told me to get out. Just remeber it's not a death sentance, just a life sentance and if you ever need help just ask

 

[soretum]

Hi Jimmy,

I just got diagnosed this week too, also been feeling bad for a couple of years but really, really bad for the last 6 months....I left it until the last possible second to go to the doctor about it so pretty much got a diagnosis straight away which I feel lucky for.

What meds have they started you on? I'm on pentasa and prednisone, 3rd day of taking them today and patiently waiting to feel better!

 

[jimmyt1989]

Thx for the support y'all!

I just picked up Azuldifine (Sulfasalazine) from Walgreens just about an hour ago (Dr. called it in after he heard the results from the radiologist). I'm guessing by the name that it's a Sulfa drug. I'm not sure what that means, except that it didn't work that well for my mom.

I'm expecting a call from my Internist early next week. He'll probably refer me to a gastro at that time, so I don't know what I'll actually end up taking in the long run. I'm also guessing that many folks on here end up trying several different combos to find out what works the best. My mom takes pentasa too. She said it works pretty good for her. Hope it will for you too soretum.

 

[DustyKat]

Hey Jimmy, :bigwave:

Great to see you back! Really does seem strange to say congratulations under the circumstances so I'll say what a relief instead!

I hope whatever the GI prescribes that it does the trick and everything settles. Both my kids have Ileal Crohns and Imuran seems to do the trick for them.

Good luck and keep us posted!

Dusty. xxx

 

[Dexky]

Welcome back Jimmy!! At least you can begin to fight back in earnest now!! Hope you get your meds figured out and are able to find the promised land of remission and stay there for a long, long time!! Is Pentasa the only med your mom is on?

 

[rygon]

glad you finally found out the problem, i think thats the best thing really. Good luck in getting the treatment u need

 

[jimmyt1989]

Thx Dexky and Rygon! My mom is also on an immunosuppresent. I think it's Imuran (sp?).

 

[Astra]

:bigwave: Welcome back Jimmy!

So you're officially a Crohnie hey!
Is congrats in order?
Now you can concentrate on getting well again cos you now know what it is.
Good luck
xxx

 

[jimmyt1989]

Thx Joan! Yep, I'm looking forward to finally getting the correct treatment! It seems a little strange to feel relief after being diagnosed with a disease. The "not knowing" part was so frustrating!

Thx again and I'll be seeing you in the forums...

 

[kateel]

Hi Jimmy! I was just diagnosed a couple of weeks ago...I totally know what you mean about the way are feeling about your diagnosis. I've been feeling that way myself.

My doc started me on prednisone (40mg) a week ago (I'm starting to taper tomorrow...) and Asacol for maintenance... After a week, I'm actually starting to see some improvement, so I'm hopeful. Hopefully your meds work just as quickly for you!!

Best of luck!!

 

[ameslouise]

Hi Jimmy!

I think it's common to have mixed feelings as you say -relieved on one hand to know what you are dealing with and bummed on the other hand to have a chronic disease!

I think sulfasalazine is usually used for more mild cases, so maybe thats good news as to why they prescribed that for you! And hopefully it will work to get things under control, but as you probably already know, there are so many drugs out there. You are right that most people have to find the right thing or combo of things before they find something that works!

Good luck! -Amy

 

[jimmyt1989]

Thx kateel and Amy! Thx to all of you for support and for making me feel so welcome. It helps more than you know!

 

[ShanBanana]

Hi Jimmy!!

Thank God for you that you have an answer. The "not knowing" really is the worst!!! I am praying for my answer as I am still undiagnosed. All my tests have come back negative and I have been suffering with all the general IBD symptoms for about 5 years now. I hope to get a diagnosis of SOMETHING soon. God Bless You and stay positive. Hope you feel better real soon!

 

[jimmyt1989]

Thank you ShanBanana! You have suffered way longer than I! I hope that you find some relief in the near future!

Fortunately, my persistence finally paid off. I knew I was inflamed on Friday, so I pushed for the CT Scan and it finally showed something.

Take care and good luck with your diagnosis as well!

 

[Mayflower537]

Hi, Jimmy, I remember you! Glad you have a dx and a treatment plan. You will probably give some undxed people on here hope, too. Sometimes things take awhile to show up on the goshdarn tests.

 

[jimmyt1989]

Hi Mayflower,

Good to hear from you again! My Internist said the same thing about the tests. Three weeks before my diagnosis, he said that the tests are flawed, and that it does take some time. The waiting is so tough, because your trying to be a good husband, dad, employee, etc.

Either way, I hope the other folks on here that are undiagnosed will find some answers and relief soon!