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09-19-2011, 10:30 AM   #1
SunshineSmile
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Diagnosed

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.

Btw, so upset at all my 4 doctors before this GI because they all insisted that it was IBS, when really it was much more. Also when I go to mayo clinic, going to check for endometriosis just in case as well because that time of the month for me is really bad usually. The mayo clinic will take care of me. Still in shock, can't believe one journey ended, and this journey has just only begun. Working on getting an earlier appointment for mayo.

Last edited by SunshineSmile; 09-19-2011 at 11:18 AM. Reason: Wanted to add something
09-19-2011, 10:50 AM   #2
Cat-a-Tonic
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Sunshine! I'm so thankful that you have some answers and can get some relief, finally! Congratulations and condolences. And lots of hugs! I'm sure it is scary, one journey is ending and a new one is just beginning. We're all here to help you through it. Many hugs and I hope that whatever treatment they put you on, that it works miracles for you and that you can get into remission and be pain-free for a good long time.
09-19-2011, 10:52 AM   #3
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Hi Sunshine

First off sweetie....take a deep breath ! It's all going to be ok!
I know you're scared and that is perfectly normal. Even though you knew something was wrong, and even thought it was Crohn's, it is still hard to process once you get the actual diagnosis. You're amongst friends here and we will be here for you
It's great that the pill cam finally gave you an answer; now you can begin proper treatment and begin the road to remission !
In my opinion, since you already have an appointment for November with the Mayo clinic, you should at least call them first and tell them about your diagnosis and what your current doctor wants to do (re: treatment in hospital) and ask them if there is any chance you can get there sooner and start with them instead of having to switch.
Do you know which Dr. you are seeing there yet ?
They are really swamped most of the time, but that doesn't mean that can't squeeze you in. They often have cancellations so at least tell them to put you on the list to call if they have an opening sooner, even if it's last minute.

I just found this wonderful article that explains Crohn's in "people terms" and is quite easy to understand and gives a ton of information on ALL aspects of this disease. It was written by someone at Johns Hopkins.
http://health.usnews.com/health-cond...sease/overview
Check it out and read through it and maybe it will calm you some

If there is anything I can do to help you please don't hesitate to ask.
Hang in there and try not to work yourself up with worry ~ It is always better to know what is wrong than to live in limbo with pain and illness not knowing and feeling like no one believes you. You can get better now, it will just take a little more time

big hugs and best of luck!
xoxoxo
~T~
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09-19-2011, 12:23 PM   #4
allieinwonder
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Wow Sunshine! I'm glad you finally can get treatment. The undiagnosed part is the hardest part. Now you can start to feel better and get on the path back to a normal, or close to normal life. I'm so glad you are going to the Mayo clinic! You are right, they will take care of you.
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09-19-2011, 02:14 PM   #5
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I send my warmest thoughts and prayers to you. Can only begin to imagine how you're feeling. Although expected it must still be a shock, at least now you know that the correct treatment is soon on it's way and hopefully it will get you some relief quickly. It's going to mean a lot of changes in your life but you've already had to do a great deal of that whilst being undiagnosed. You've managed to come through that so you know you're already well placed to take on whatever this has to throw at you. I really hope you get some sense of normality quickly and know that we're all thinking of you.
09-19-2011, 02:42 PM   #6
StarGirrrrl
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I am guessing you must be so confused right now. Glad you have a dx but upset that it is Crohn's. We are all here for you!

I really think the hardest part is over now, treatment and relief ahead, fingers crossed.
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2006. Tummy issues (more IBD than IBS).
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09-19-2011, 03:53 PM   #7
SunshineSmile
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Thank you everyone! Glad I have you guys to talk to through all of this.
09-19-2011, 08:24 PM   #8
Mayflower537
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Well that is bittersweet to hear, I'm sure. Sounds like one way or another you are going to get proper treatment and hopefully relief. was it your pillcam or the biopsies they took when they put the pill in your stomach? I am just curious if you know.
09-19-2011, 10:48 PM   #9
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Hi Sunshine

I can only imagine how scared and unsure you must feel right now, but like everyone else was saying, we are all here for you and you will get thru this. It sounds cliche, but God will not give you more than you can bare, and it may not seem like it, but this is a blessing because now you can begin your road to remission. Don't forget us in the undiagnosed club- we love you and you will always be an honorary member.

Lots of hugs

ShanB
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Lord, help me to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
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09-20-2011, 07:51 AM   #10
SunshineSmile
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Mayflower, thank you, it is bittersweet. It was the pill cam that showed all the problem areas.

Shan, thank you, I am trusting God to help me through this. You are right, he wouldn't give me more than I can handle. And I will never forget you all in the undiagnosed club, I will still write on the forum and see how you all are doing and keep in touch.
09-20-2011, 12:19 PM   #11
SunshineSmile
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Just wanted to let you all know, 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. Going to Mayo clinic on Monday to start treatment!
09-25-2011, 12:52 PM   #12
littlemissh
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Sunshine -Was it picked up on any another tests eg blood tests, xrays etc or was it only the pill cam?
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
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09-25-2011, 01:37 PM   #13
SunshineSmile
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Every test was normal. The blood CRP level was elevated which made my doctor want to do pill cam. And the pill can showed it with no doubts... It was clearly Crohns Disease. Finally someone found what was causing my problems, but wish it wasn't so bad.
09-25-2011, 01:45 PM   #14
littlemissh
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Bit like me, initially only positive test was pillcam. Glad it was invented!
09-25-2011, 01:59 PM   #15
SunshineSmile
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Wow, yeah that's crazy. Everyone kept saying IBS with me bevause they couldnt find anyhing. Is that how it was with you?? How long did it takw to find your disgnosis?? I think so highly of the pill cam now!
09-25-2011, 02:09 PM   #16
littlemissh
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Never had ibs diagnosis as my symptoms then were abdo pain, weight loss and vomiting. They thought it was acalculous cholecystitis so had my gallbladder out. Then started with big bleeds of altered blood and pillcam showed multiple nodules. It got delayed in that part of the small bowel so much of my small bowel wasn't seen. They didn't even see the area that was bleeding so said I had other affected segments.

Took 18 months of every test under the sun to find it!
09-25-2011, 02:16 PM   #17
SunshineSmile
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Aw poor thing... Yeah I had IBS like symptoms but then all of a sudden had vomiting and joint pain and stabbing abdominal pains and dr saw me in that flare and ordered blood tests. I know it's hard to diagnose stomach problems but it stinks for us when they can't find it. Glad they found it for us. I have my gall bladder taken out too!! They thought that was the problem first too. I've been having problems for about 8 years, but prob only did tests for 2.
09-25-2011, 02:22 PM   #18
littlemissh
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Good luck with your clinic appointment, hope you get some effective treatment asap!
09-25-2011, 02:35 PM   #19
SunshineSmile
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Thank you so much! Hope you are doing well on treatment.
09-25-2011, 11:41 PM   #20
BoyMama2000
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You will feel so great that you are being treated by the best! Please let us know how you are doing and what they are doing for you!

You are on the road to recovery and being able to do something positive for your body!
09-25-2011, 11:46 PM   #21
SunshineSmile
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Yes, I cannot wait to get on the journey to feeling better! I will definitely keep you guys updated on what's going on!
09-26-2011, 10:37 AM   #22
Carrie630
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good luck today!
09-26-2011, 11:30 AM   #23
SunshineSmile
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Thank you. It's been so rough this morning. 2 hour car ride with stopping at every other exit to go to the bathroom I feel awful today.
09-26-2011, 11:33 AM   #24
Cat-a-Tonic
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Sunshine, best of luck today! I hope they can get you some relief and that the car ride home is less awful.
09-26-2011, 03:11 PM   #25
Mayflower537
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Yes, Sunshine, I hope your appointment at Mayo went well. Let us know how it went.
09-26-2011, 08:08 PM   #26
SunshineSmile
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Hey everyone!
Went to the mayo clinic today, they were so nice to me. It was such a rough morning though, with the 2 and a half hour car ride there, and my D acting up really bad. I had to pull over and stop to go to the bathroom about every 20 minutes. It was terrible... but got there and checked in. Talked to my dr. and he said he agrees with my GI here in orlando that it is Crohn's diseae, but he wants to do a double balloon endoscopy and get some biopsies of the affected areas and see exactly where my most troubled areas are for the best treatment. I am home now, he said I will go back in a week or so to do the DBE. Once he has those results he will aggressively start with treatment. He said he's going to go over a bunch of treatment options for me for like an hour with me once he gets biopsy results back. He said he wants to use the biological treatments like Remicade or Humira (etc.) because I'm so young and he wants to tackle it the best way possible. He seems concerned that I have been undiagnosed for so long, which is another reason why he wants to do the DBE to make sure I don't have anything else weird going on. Apparently my GI in orlando only chose 8 pictures from the pill cam to show me and then tossed the disk with the thousands of photos, soooo my mayo doctor might have to do the DBE going through both ends because he doesn't have a video of the pill cam to see where my trouble areas are... Also had blood work while I was there and had to do stool samples as well.
He's taking good care of me so far!
09-26-2011, 08:21 PM   #27
allieinwonder
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That sounds great Sunshine! He sounds like he is going to make sure everything is thoroughly checked. I'm sorry you have to wait another couple weeks for treatment!
09-26-2011, 09:35 PM   #28
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I am so thrilled for you! It really takes a lot of burden off when you know you hav e a doctor who is wonderful and knows what they are doing!

I can't believe the doctor in Orlando threw away photos. Are you sure. I work in healthcare and we don't throw away anything. We can't...all medical records have to be maintained in our hospitals for several years and then go to a storage facility.

You may want to investigate that a bit more by calling the doctor's support staff, the medical records department or radiology department.

It sure would be nice to avoid one more test but on the other hand, perhaps the testing at Mayo will be even more specific.

Best of luck...help is on the way!
09-26-2011, 11:28 PM   #29
SunshineSmile
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Thanks you guys!
Yeah even if he had the pill cam disk he still wants to do the DBE to take biopsies. But, yeah it's weird. My mom and I called my GI office in Orlando and they said the disk is not in their hands... My mom and I are very confused by this. My mom is a paralegal and she thinks it's odd that "they don't have it". I'm going to call again or my dr at the mayo clinic may call.

Anyway, can't wait to have him do the DBE and tell me more info about my crohns. And then hear all my options and get me started on treatment!
09-26-2011, 11:47 PM   #30
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That is what is most important!
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