Indeterminate - Crohn's or UC

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Basketball Player
New Member

Date Joined May 2008
Total Posts : 2
   Posted 5/6/2008 9:43 AM (GMT -7)   
Hello everyone.  My 15 year old daughter has been in the hospital for 4 weeks now in the mist of a flare up that has lasted for 6 weeks now.  When I brought her into the hospital 4 weeks ago, she was vomiting, passing some blood and having cramps. THE PREVIOUS 9 MONTHS SHE HAD NO PROBLEMS. SHE JUST FINISHED HER JV BASKETBALL SEASON AND STARTED EVERY GAME.   Now 4 weeks later, she is having severe pain, passing large clots of blood, runs a fever from time to time.  She is having to take morphine just to manage the pain.
My question is have you or anyone you know experienced such rapid decline? Going from having no symptons (none at all) to having a flare up and 6 weeks later having Drs recommend surgery?  This is insane!!!!  They cannot be for sure if the problem is Crohn's or UC. 
Someone please tell me if you had such a rapid decline in health.  By the way, I'm sure I'm wrong but I think her meds or combination of meds have caused more harm than good.
Comments, thoughts, please!

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 5/6/2008 10:07 AM (GMT -7)   
Yes, even before I started on meds. Unfortunately people (especially young) who are athletes decompensate fast, because while it takes alot to take them down, when they do...they go down hard. Ran the Marine Corp marathon, 2 months later was in Bethesda Naval Hospital. Granted I had other issues going on, but I definitely decomp fast, I think being female does not help with this because of the monthly hormone fluctuation.
[color=cyan>Forum Co-moderator - Crohn's Disease</FONT>
<FONT]We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
<FONT color=red>All suggestions/options/opinions are caveated with please consult with your local health care provider...[/color]

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 5/6/2008 12:35 PM (GMT -7)   
My very first flare was incredibly rapid. Fine one day to bleeding the next. Even now it seems like, when it goes downhill, it goes quickly.

Also, I was originally dx UC and treated that way for a year. Every scope since has shown Crohn's, with Crohn's symptoms such as fistula, etc. But, my biopsies and Prometheus test still show UC. If I have surgery, it will be a permanent ileostomy. That is because the rectal region is affected so much that they'd have to remove it.

I mention these things because if they docs are talking surgery for your daughter, maybe it's helpful to hear what other surgeons are recommending for severe IC patients.

Best wishes to your daughter!!! And to all of you.

BTW: has she tried Remicade?

--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/6/2008 12:55 PM (GMT -7)   
Welcome Basketball Player,

So sorry your daughter is having such a hard time. That must be overwhelming for you. (((((((((( Hugs )))))))))

I am very new to Crohn's but have years of posting in the Lupus Forum. One huge question in my mind for you and your daughter . . . .

Who is treating her??? Hospital docs? Or specialty GI docs who deal with Crohn's AND Peds as a specialty. I know it would be a huge step to second-guess the hospital docs . . . but knowing the little I do about this disease and the auto-immune aspect of it . . . I would DEMAND specialists. Its just too hard to put this big health puzzle together and the treatment plan requires skill and experience.

I don't want to scare you . . . just to suggest a second opinion with specialists if you haven't already done that.

Make sure to gather up all her medical information. Copies of bloodwork, tests, etc. For some reason, they are difficult to gather when you try to get them for a new doctor.

This has been a really supportive forum and I've learned a lot reading posts here. I hope you'll keep us posted on your daughter's progress.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Apr 2007
Total Posts : 385
   Posted 5/6/2008 12:55 PM (GMT -7)   
It sounds like you're kind of in the same boat we were in. Our son was fine was day and bleeding really bad the next day. He was of course 'embarassed' to tell us what was going on and kept things quiet. His initial diagnosis was bacterial diarrhea, but the doctor I work for thought it was Crohn's and sent him for an immediate colonoscopy. During that, just the scope touching areas of the colon would cause spontaneous bleeding, so the doctor doing that figured it was Crohn's but said to wait for the biopsy results. He was immediately started on Asacol, 6MP, Rowasa enemas, and Prednisone. Because of him letting this go for such a long period, he did end up in the hospital and had blood transfusions. The biopsy results came back in about a week and confirmed Crohn's. It did take a long time to get him to a somewhat 'normal' state.
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son (HLA B27 positive) diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.

Basketball Player
New Member

Date Joined May 2008
Total Posts : 2
   Posted 5/6/2008 1:32 PM (GMT -7)   
My daughter was initially hospitalized in Feb 2006 and it was thought to be Crohn's.  After about 8 days or so she was given Remicade and the next day is was like her old self.  Since that time period she was only on medication during and shortly after a flare up (which I recently learned that may not have been the correct thing do).    That time she had 3 Remicade treatments.
During this visit, she has had two Remicade treatments does far along with high dosages of steriods and antibotics.  Nothing is helping.
Has anyone tried acupunture for UC/Crohn's treatment?

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 5/6/2008 1:36 PM (GMT -7)   
You mentioned that you thought the meds she is receiving have caused more harm than good. What medications is she taking? There are a few medications given to people with Crohn's and UC that can cause adverse reactions just like the symptoms of the diseases, ie bleeding and diarrhea. This happens in only a very small percentage of people but it can happen. Keep trusting that mother's instinct and asking questions!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 5/6/2008 1:59 PM (GMT -7)   
Has she tried any of the immune suppressants such as Azathioprene (Imuran) or 6-MP? I completely agree about getting the advice of a specialist. when I was in the hospital the doctor's words seems to mean so much less mostly because it was several doctors rotating, not just one who knew my case. (They were all GIs but not my own.)

Also, when I first flared (the immediate onset that I talked about earlier) it lasted 6 weeks. I was tested for all the parasites and about to get a flex when it all, just as suddenly, stopped and I was better. 9 months later it kicked in again (seemingly overnight) and, except for 2 good years on remicade, never has let up.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 5/6/2008 2:14 PM (GMT -7)   
I'm ao sorry about your daughter. But yes, every time I've had a serious flare it has come out of no where. Or the signs were so small I dismissed them to eating something I shouldn't have, stress ect... This last one came out of no where after being well for two years. With skin swelling, pain and diarrhea.

I hope things improve for your daughter real soon. Must just be awful having to stay in the hospital that long too.
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 13, 2017 12:05 PM (GMT -7)
There are a total of 2,904,921 posts in 318,807 threads.
View Active Threads

Who's Online
This forum has 158184 registered members. Please welcome our newest member, CWakes.
337 Guest(s), 11 Registered Member(s) are currently online.  Details
JustMrMe, Lapis_29, Skypilot56, Fletch10, Pambeezbuzz, CWakes, dbell, Blu's Mama, kodaska, JkorourkeRN for husband, iPoop