Newly diagnosed today... Scared.

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SunshineSmile

SunshineSmile

Joined
Jul 13, 2011
Messages
508
The dr called this morning and told me I have Crohns disease. He didn't tell me where it's located or any details yet, but he said he wants me to go to the hospital to get treatment this week but may try to get into mayo clinic or shands sooner because they are the experts. I'm really kinda freaking out though, was not expecting this at all because of all the normal test results I've had in the past. Started crying as soon as I got the news. :( dont really know what to expect with this disease and with the treatment plans. And just still can't believe that I have this disease and will for the rest of my life. Thankful that I have answers but upset. You all probably understand... :( just need some hugs today. I wouldn't know what to do if I didnt have this forum, you all are amazing.
 
Hi , sorry to hear that. The shock is hard to take in, but at least now you know why you are sick and will be able to get the help you need. Not much comfort yet I know, but something to think about. It will take a while to get your head around it so allow yourself to be sad if you need to, or angry or whatever you need there is no need to be brave just yet, give yourself time. X
 
:ghug: I'm sure it's a lot to process. I'm glad you know what's going on now, but wish it was better news. We're all here for you!
 
(hugs) - i just got diagnosed today too. i know it's overwhelming. i'm looking at it as, i finally know what i've got and now i can get on the road to recovery.

i've been to shands, it's really good. my dr there was the first one that was willing to say, hey you've got all the symptoms, you need treatment, even if we can't get a positive biopsy. i understand some people can go years without a diagnosis. i've heard good things about mayo clinic, too.

try to keep your chin up and be positive.
 
Thank you everyone. :) and flowergirl we can get through it. It's tough knowing what's going on, but it's great to know what's causing the pain. Let's get into remission!

Mayo clinic appointment moved from November to NEXT Monday!! Crazy how fast I got in because I finally have a diagnosis! Nervous about What they're gonna do, but they are wonderful and will take good care of me. :)
 
HI Sunshine, I am glad to see to have a diagnosis and move forward toward getting in remission and ease the pain. i know it's overwhelming at this time but you will get through this because there is always faith. and i am glad you got into the hospital early so they can treat it in the early stages and probably put you on some meds that will work for you and continue to have a great life ahead of you. Best wishes.
 
Hi sunshine, it can be a bit overwhelming getting a diagnosis but I'm glad you know whats going on now and you can deal with it. I promise you'll get use to it soon enough and it's just part of who you are. Hope you get treatment really soon and start to feel heaps better it can be done!!
 
I think that along with the relief of having a real diagnosis comes the certainty of knowing what MIGHT happen (if that even makes sense!) I was the same person the day before I was diagnosed, but the day after I was faced with the fact that I *might* need a colostomy bag someday. That I might have to have a bowel resection. All those mights and maybes added up to me being totally overwhelmed! Good luck with your Mayo clinic appt!
 
Mayo clinic appointment moved from November to NEXT Monday!! Crazy how fast I got in because I finally have a diagnosis! Nervous about What they're gonna do, but they are wonderful and will take good care of me.
Click to expand...

Yeah !!!! So happy for you !! :)
Don't be nervous...they are WONDERFUL !!
 
Yeah the "what if's" are kinda scary, but I'm just going to live one day at a time. Can't believe I'm going to the mayo clinic a week from today. So glad I got in so soon!

Crohn's Mom, How do they give you treatment? Through IV's? Do you think they will do other tests on me while i'm there? Not really sure what to expect.
 
The treatment depends on the severity of your disease, where it's located, etc.
As far as tests I'm not sure, but I will guess that they will do a MRE (enterography) first thing knowing how they operate there. It's really simple and painless so no worries. It's basically an MRI that specifically looks at your digestive tract.
It will all really depend on the doctor tho, and your specific disease.
Do you know which doctor you are seeing yet ?
You will love it there ~ I'm so happy you pushed to get in! :)
 
Okay, I understand. That makes sense. The first doctor I believe I'm seeing is Dr. S.G. Coe. Does that name sound familiar??

Ready to go to the mayo clinic!
 
so glad you're getting to a dr so soon. good luck with the appointment. i'm sure you'll get lots of information. i'm sure just by being on this board you'll be more prepared than a lot of people would be. and don't be afraid to ask lots of questions!
 
I think the key is to realize that you have two choices:
1) the disease controls my behavior and my life
2) I can make the right choices (diet, exercise, medication) to control the disease and live my life
 
The first doctor I believe I'm seeing is Dr. S.G. Coe. Does that name sound familiar??
Click to expand...

Are you sure that's the right name? Is that the doctor at the Mayo you're supposed to be seeing ? What department ?
 
Oh actually, she gave me a different name, that was the doctor that I was going to see in november. But now I'm seeing one of the Crohn's specialists on Monday, so I'm not sure which one that is. They are sending me a new Itinerary soon, gosh sounds like i'm going on a vacation, but definitely not lol.

OH, by the way, I got more info on where my Crohn's is located and everything... I have Moderate to Severe Crohn's Disease with very deep ulcerations all through out my small intestine... and the part that is affected with Crohn's is my ENTIRE small intestine... thank goodness we found it FINALLY.
 
it's a good thing you're getting in to see a Crohns specialist so soon!!! they need to get on it fast and thoroughly.....if that makes sense?

good luck with everything and i hope remission comes your way!
 
Ok, glad you cleared that up because I didn't have a clue who that doctor was! LOL ... I'm interested to see which one it is when you get your itinerary. Make sure you take that with you when you go. it's not required, but it's very helpful while your there trying to figure things out. :) Also, you can go online to Mayo's website and start the process to be able to access your personal information, lab results, appointments, medications, etc. online. I believe they want you to take a survey first and then the first time you check in at the hospital they will verify your identity and you will be allowed access.

Wow! I am so glad you had that Pill cam done! And I am even more glad for you that your appointment is on Monday...thank goodness !
 
HI Sunshine, i am glad to see you have good news and finally found it. I know it's not really good good news but, you will be able to treat it right away and probably get on some new mediciation to put you in remission. Good luck. and best wishes.:heart:
 
Crohn's mom, guess what?! Mayo clinic just called me! They are putting all of my stuff together and asked some questions for the doctor! It's becoming reality!
 
haha that's so funny!

I don't know if I already asked you this, but when you go there, do they usually treat their patients through an IV? Seems the most direct.
 
Good luck to both of you - it's great to hear that you have your appointments very soon and I hope you get well asap- definitely seems that things move faster for Crohns sufferers in the US than the UK - perhaps I should move!

xx
 
sorry I'm not much help with answering that...it just depends on which treatment they and you decide is best. I do know that they (at least all of Gab's docs there) HATE using prednisone !! It's like the enemy around there LOL so you probably won't have to go that route :)

Did you check out that link I put in my response to your thread in the undiagnosed section?? You really should..it's a wealth of information and it explains it all rather simply. If you go to the treatment section of it you will see all the different medications that are used in Crohn's and what each one is for, etc. It will help you be better educated about what you choose when the doctor is discussing medication options with you on Monday.
 
Sunshine, the only IV medication I know of for Crohn's is Remicade. My best friend is on Remi and she goes for an IV infusion every 8 weeks. They tried her on Cimzia but that's a self-administered shot (Humira is too) and she hates needles, so she stuck with Remicade. I believe most other meds for Crohn's would be in capsule or tablet form. When I was on pred I believe it was tablets, and Entocort is capsules. So long story short, you most likely won't be getting IV treatment unless they decide to go with Remicade.

Keep us posted on how it goes on Monday! I'm glad you're getting treatment so quickly!
 
Crohn's mom, I just read the article you sent. There's lots of information! but definitely useful information at that. I am going to make sure I look over different medications for crohn's because I want to make sure the doctors and I chose a good route for treatment with me. But, I've heard it's trial and error in most cases to see which meds are working for you and which aren't. Can't wait to speak with the doctor on monday and figure out everything. Thanks again for all the information, the more the better. My dad has kind of been not so understanding, he's confused on how I got this illness and is frustrated that no one in my entire family history has had stomach problems, but I do, and it ends up being a chronic illness that has caused a lot of pain and damage. I guess he will understand better when we get more information from the mayo clinic and when he sees me going through all the treatment and such. I think he's just surprised because all this time he thought my stomach hurt because of nerves or stress, but that's obviously not the case.

Cat, That's great that Remicade works for her. I've heard a lot of good things about Remicade. That sounds like a very quick way to get treated, since it's IV infusion, and is immediately in your blood stream working. I'm sure I will get some options at the mayo clinic, so we'll see what they are and what is best for me, and hopefully whatever I choose will work and I won't have to jump around from meds to meds. That is my hope at least lol. I'm so thankful that I got such a fast appointment with the crohn's specialist at mayo clinic! I guess once your diagnosed they see an urgency in getting you in. Wow, after all these years, can't believe I'm saying "I'm diagnosed"... just sounds so surreal. Scary, but glad to finally know what's going on. Now when my stomach hurts, I know exactly why. Still doesn't help the fact that it hurts, but at least I can feel more in sync with what's happening and understand better. I still need to learn more about this illness but I'll learn as I go along as well.
 
Yes, there is a ton of information in that article ! LOL
I actually printed it all out and I'm going to have my hubby read it because, even after all these years of him hearing about Crohn's, he still doesn't really understand it. Maybe you could do the same for your dad ? Or just have him go online and read it? It may help him a little to accept it> he may be blaming himself somehow right now for you being ill...like feeling guilty that he should have known, or that he just thought you had a nervous stomach, or similar. It's a hard thing for parent's to hear when they're children are chronically ill .. trust me :) He probably needs time to adjust, just like you.
 
Yes, you are probably 100% right about my parents needing time to adjust, just like I do. It is a hard thing for me, the patient, to totally grasp, let alone my parents. And, I am an only child, so they are probably just overwhelmed, and I understand that. I think my dad might be feeling guilty a little because he never though it was a big deal when I didn't feel well, but now he sees that I have numerous deep ulcerations, and he's probably just imagining how badly it must of hurt when those were forming. They will get better once it sinks in more. Now that I know what's going on, I find it hard to want to eat. I get kinda freaked out knowing that my intestines look so badly and have been through so much. Of course I am eating, but I don't really eat much. But that's also because I still get nauseous, i don't know, it's all a vicious cycle! lol
 
Great :)
I looked him up...I don't know him personally, but I have seen him around the 6th floor of the Davis building once or twice !
I'm sure he's going to take great care of you!
Wouldn't it be funny if we ran into each other one day there ! LOL
Such a small world :)
Gab sees Dr. Cangemi, and if I'm not mistaken he mentioned Dr. Picco as his "partner" who he confers with and who we could see if ever he's not available and it was necessary. They sort of work as a "team" there. If you look on Mayo's website they refer to it as the "Crohn's Clinic" or something like that.
I think I'm almost as excited about your appointment as you are...and a bit jealous...I wish I was a patient there as well ! LOL
 
That's great that they work as a team! They can probably get more stuff done and make sure that the best treatment is given to every patient!
That would be so crazy if we ran into each other there, I wouldn't be surprised! I think it may happen one day! I'll look out for you! :)
You're so funny, you and my mom I promise you, have the same exact personalities! Both giving their children ice cream to help tummy aches, and the humor! My mom is very excited for me too, and so am I, I'm just kinda nervous. I know I shouldn't be, but everything's happening so fast!
 

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