Newly Diagnosed (my story)

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New Member

Date Joined Sep 2008
Total Posts : 6
   Posted 9/29/2008 1:28 PM (GMT -7)   
Well I just thought I'd say hi to everyone here and share my story.  I'm probably going to ramble on a bit so bare with me.
But I would like to be of help to anyone to get through this disease, which sucks but could be worse.
I was diagnosed with Crohn's disease in April 2008, in which i was in the hospital for 2 months straight.
For about a year before I went to the hospital.  I was having literally crippling pains in my stomach, which I can only explain as feeling like contractions or my best guess as to what contractions in labor would feel like.  Every time I went to the doctor I would just get sent home with various laxatives, stool softeners, antacids... fun times for someone in college.
Anyways after going to the doctor countless times and never getting a straight answer.  I went for the last time, which luckily if I would have waited in longer I probably would not be here today.  So I go in complaining of the pains again and have a 105 degree temperature.  What do you know the doctor sends me off with yet another useless prescription.  As I leave the doctors office on my way back home I vomit and pass out in the parking lot of the doctor's office.  I was rushed to the emergency room... which begins my totally fun stay at the hospital.
So I was brought in and immidiately givin an IV and fluids  (haha not the last time I'll be having an IV while i'm here, in fact most of the time I was hooked up to 2 IV's and also had a pic line in my upper arm and neck)  Anyways I was in shock and recieved a gauntlet of pain meds (dilaudid), ativan, and god knows what else.  Have various X-rays taken, CT scans, and then my all time favorite a colonoscopy (*cough* sarcasm).  Anyways after all of the tests I was told that I have Crohn's disease and have a blockage between my upper and lower intestine.  The scar tissue was so bad the scope couldn't even pass through that section.  So I was put on IV predinsone to see if the swelling would go down without having to resort to surgery.  No luck there, well the swelling subsided a bit, but the blockage remained.
So of to surgery #1:  So for this surgery the doctors lapriscopically (to lazy to check the spelling lol) remove about 1ft of small intestine and 6in. of large.  Well that went on ok, but after laying in the hospital for a few more days I start to vomit like bright green... i guess bile?  Luckily enough apparently now I have a whole in my large intestine which caused an infection in my stomach (which i wonder if that was caused from the Crohn's or from the first surgery).
Surgery #2: So i'm rushed in and have about a 14 inch incission made and have another few inches of large intestine removed along with my appendix.  So ok I thought that was enough but this crazy roller coaster has still has quite a few more twists and turns.  I end up having like at least 8 staples in my stomach, not sure on that exactly but whatever it took to close that massive incission.  So here I am laying in my bed my weight got down to 98 lbs. and i couldn't walk without a walker even then it was hard.
Anyways the physical therapist comes in to help me get up but i accidentaly fall back down which i try to catch myself using my stomach muscles.  BAD IDEA!!  The only thing I remember is being in extreme pain and looking down to see the staples torn from my stomach and part of my bowels hanging out (sorry for the horrible picture there).
Surgery #3:  So i wake up in the ICU.  With a colostomy on lower left abdomin, wound vac on my stomach, pain pump hooked up which every 6 minutes i could press the button and get a dose of dilaudid, IV in my arm, and a pic line in my neck and other arm.  The doctors had to repair the hernia and every 2 days for the next month had to change the wound dressings... which that wasn't fun at all pulling off tape and foam that is stuck to an open abdominal wound... i wouldn't recommend it lol.
After being in the hospital for two months.  I was released and chose to go home instead of a nursing home (i mean i'm 23 i'm not gonna lay in some old folks home).  Had to teach myself how to walk again and started eating and regaining strength slowly.  I have gained about 60 pounds since April.  Finally this July I just got the wound vac removed and the wound is almost completely healed.  Of course i have some crazy scarring.  Now i'm just waiting to get this colostomy reversed which should be done this coming December or January.  THANK GOD!! it's so embarassing especially with the opposite sex, but most people have been pretty understanding... i guess it just doesn't help with an already pretty low self esteem.
Anyways I'm hoping this will be the last surgery and I will have no more complications in the future.  I'm in remission now and haven't had any pains really since then.  I'm taking Immuran 100mg, tapered off of the predinsone, percocet for pain, and various other supplements.
Well haha i'm gonna cut this short (if you call that short).  Hopefully I can get to know some you all who have this disease and hope I can help in anyway i can.
Never really told my story in it's entirity so it feels good to get that all off my chest lol.
23 year old male
Diagnosed w/ Crohn's Disease in April 2008.
3 surgeries so far... one more to go in December to reverse a colostomy.

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 9/29/2008 2:05 PM (GMT -7)   

Hey Brandon!

Welcome to Healingwell =)

Im so glad you found this site, and you feel better after getting your story out.  I completely understand how you feel, being 21 myself and trying to explain to people my age everything that has gone on in my life, or even whats going on now is hard...I get a lot of blank stares or "ewww's" its kind of discouraging.   You sure have been through a lot, I too was pretty much ignored and just given pain meds for about the first 2-3 yrs before I was diagnosed finally after being rushed to the hospital.  I'm glad your finally in remission, hopefully it lasts a long, long time! =)

Dianogsed with Crohns at 16, 21 yrs old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly), 50mg Pred, Levbid, Nexium, B12 injections.

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 9/29/2008 2:06 PM (GMT -7)   
Jesus, that's quite a story. Sounds like you're doing great now though, I sure wish I weighed 160. Keep taking your meds and welcome!
Dx'ed in 1999. No surgeries.

Current meds: 100 mg 6MP. Just finished prednisone taper. Udo's Choice Probiotics (30 billion).
Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 9/29/2008 5:07 PM (GMT -7)   
Brandon, welcome! I'm sorry to hear you have Crohn's, and had to endure all of those surgeries. Looking forward to getting to know you! Good luck to you! Blessings, Julie:)
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 9/29/2008 5:30 PM (GMT -7)   
Wow, what a turbulent introduction to this dd. I hope it's smoother sailing for you from now on, brandon.

Welcome to the forum!
Co-Moderator Crohn's Forum.

New Member

Date Joined Sep 2008
Total Posts : 6
   Posted 9/29/2008 6:35 PM (GMT -7)   
Thanks for all the warm welcomes smilewinkgrin
23 year old male
Diagnosed w/ Crohn's Disease in April 2008.
3 surgeries so far... one more to go in December to reverse a colostomy.

Regular Member

Date Joined Oct 2007
Total Posts : 149
   Posted 9/29/2008 9:24 PM (GMT -7)   
Wow and i thought i had it tough at first. I hope things get better for you from now on..welcome to the forums. :-)
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
B12 Injections

Regular Member

Date Joined Sep 2007
Total Posts : 246
   Posted 9/29/2008 9:33 PM (GMT -7)   
Welcome dude,man that was some scary story! mmm the whole crapting in bag things grosses most ppl out i had a temp one for 2 months not much fun in summer,but it did provide my family some laughs,i had glue with my surgries it was good sorry you had staples hope you feeling better
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 9/29/2008 10:05 PM (GMT -7)   
Wow... You certainly sound like a strong person! Welcome and hope you stay in a good spot!
--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
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 9/29/2008 10:55 PM (GMT -7)   
Welcome! That is quite the story, seems like many of us have been diagnosed only when it becomes a freakin emergency (mine was pretty much bleeding to death before they found it). I'm glad that you're doing so much better now, and hope it continues on that way!
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!

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