My life has probably sucked more than yours ever will

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New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 2/13/2009 9:34 PM (GMT -6)   
I was diagnosed with Crohn's in my sigmoid and descending colon when I was 9. I was told my growth might be stunted, which sucked because at the time I was on a club basketball team, and was a QB in pop warner football. Luckily my growth was never stunted, and I ended up taller than first projected before I was diagnosed with this horrible disease. I lead a normal life for 9 years after being diagnosed. I had one minor flare up the summer after my freshmen year of high school when I was 15, but I was only hospitalized over night as the remicade infusion worked a miracle. During this long period of remission I was on 6mp and Asacol, which seemed to be working well. I had blood work done every 6 months to check the 6mp levels and adjust the dosage in accordance with the test results.

However, my nightmare began when I was 18 and in the last month of high school. Prom was a couple weeks away, graduation a month away, and college 3 months away. Out of nowhere I started getting cramps with subsequent bleeding. I ended up overdosing on vicodin during prom, because the pain was so severe, yet I was determined to make it through the night. As all this was unfolding I had no GI doctor, because he was too busy to see me right away. So, I went to my regular physician, who hospitalized me and brought in a GI doc. After the colonoscopy confirmed the flare up, I spent a total of 16 days in and out of local hospitals over the course of a month with my condition worsening. Before I got sick I weighed 165lbs (I'm 6'4 keep that in mind while you read this), after 2 weeks of being sick I weighed 145lbs. I was then transferred to Cedars Sinai Medical Center in LA, where they have an Inflammatory Bowel Disease center, and some of the best physicians/surgeons in the country. There, they spent a week doing all sorts of tests/biopsies, after everything coming back negative, they decided to do another colonscopy. After seeing how rapidly the disease was spreading throughout my colon, the inevitable happened...

It was friday and I was chillin in my hospital bed, watchin the dodgers, when the GI doc came in and told me surgery was scheduled for Monday. I didn't really know how to react to this, but the surgeon came in and told me it had to be done or my colon will perforate. She explained to me that she would first try and do laproscopic surgery and try to reconnect me so the scarring would be minimal andI wouldn't have a colostomy. Unfortunately, after she (yes my surgeon was female) looked in with the laproscope she noticed the crohn's had spread in to my transverse colon and was already perforated. They had to make an incision and perform a colostomy.

At this point I was on the highest dose of dilaudid (3.5mg every 3 hours), and when I woke up from the anesthesia they decided to give me .1mg every 7 minutes via a pump that I controlled. So, naturally taking 35 times a smaller dose, isn't going to do a god darn thing and I woke up moaning and screaming. It really felt like someone had dissected me. It felt like someone took a pitch fork to my abdomen and then removed all my organs. There was no physician in the recovery room, and the retarded nurse didn't call one in to raise the dosage of dilaudid. So I was in severe pain until the next morning when the "pain management team" came in and raised the dilaudid to .7mg every 7 minutes, and gave me an 80mg fentanyl patch. So then they made me get out of bed and take a few steps... I don't know how many of you have had abdominal surgery after losing 40 pounds, but it took me about a half hour to get out of bed with the help of 3 nurses and my parents.

3 days after the surgery, they started allowing me to drink water and eat a little bit. Unfortunately, I had developed ileus (bowels shut down) and was throwing up nonstop. Throwing up was also extremely painful, so they had to put an NG tube down in me. Having a massive suction tube all lubed up stuffed down your nose into your stomach 3 days after surgery isn't pretty. So, I started feeling better and was progressing fairly well with the help of TPN. Getting out of bed still took a loooong time to do, but I was able to walk for 10-15 minutes without stopping. Then one night I went for a walk with my nurse, and fluid started leaking out of my incision mad.

The resident surgeon came in the next morning (around 6 AM) and took out a couple of staples from the incision, and told me the fascia (muscle underneath) was infected, and the sutures had come apart. He told me to lie flat or my intestines could fall out (that was probably hyperbole, but an effective way of stressing the seriousness). At around 7 AM the resident surgeon comes back in and tells me surgery is scheduled for the afternoon to clean everything out, and close the fascia back up. When the my surgeon came in to talk to me, she told me the skin would have to be left open to allow the infection to drain, so she put tension sutures to hold the skin in place. 21 days, and 2 surgeries later I was released from Cedars Sinai July 30th -- coming home never felt so good.

Unfortunately, my life got pretty messed up. I spent my whole summer after high school, hospitalized and recovering from surgery. I was now 18 with a colostomy, and was unable to move away to college. I had lost a total of 40lbs, so I was now 6'4" and weighed 125lbs. I had an open wound that I had to clean and pack twice daily, and I felt like a prisoner. However, I have always worked hard and was always determined to overcome obstacles. I began consuming as much calories and protein as I could without eating junk or fast food... Within two weeks of being home from the hospital I was out driving and hanging out with my friends again. The weight gain was very slow at first, and patches of my hair had begun falling out from my lack of nutrition. I was determined to resume a normal life despite these pitfalls. Every visit I had with my surgeon I would ask her how long until I could start lifting weights again... about 2 months after the procedure Dr. Moore cleared me to start lifting light weights. This was the best news I had received in a long time, and after about a month of stabilizing my deteriorated muscles, I began real lifting.

I had deferred college entrance until this spring semester of school, and was taking online community college classes so I could stay on my parents medical insurances by being a full time student. Since most of my friends had moved away to college, I spent all my time rebuilding my body through nutrition, exercise, and therapy. I was lifting 5 days a week, and jogging a few times a week as well. I was definitely surprised how fast I was recovering, it seemed like everyday I could do something I wasn't able to do the day before.

Now I did all this, because I was told I was going to have the colostomy reversed in 3-4 months, so I could start school in January without the colostomy. We were aiming for middle of November to early December to have this procedure done. So, I had a colonoscopy at the beginning of November, unfortunately, the part of my colon that was not attached was still inflammed, so my physicians wanted to wait 6 more months (this May).

Inevitably I sucked it up and moved out to Arizona to attend U of A despite having a colostomy this semester. I'm now 19 and double majoring in Finance and Pre-med, and for some reason decided to join a fraternity. It's been 8 months since surgery and I now weigh 175lbs thanks to my gym obsession. I have no dietary restrictions, and no physical restrictions... however, my life sucks because I'm in college and a fraternity, and I can't hook up with girls at the moment due to the colostomy. When I go home for spring break in March, I will have another colonoscopy, and then schedule surgeries for the second week in May. A plastic surgeon will perform an abdominal reconstruction during the colostomy reversal, so we are going to hit two birds with one stone.

So hopefully if you read this your life is better than mine!

P.S. If you are in the LA area and need specialists I have a couple reccomendations:

My Gastroenterologist: Andrew Ippoliti

My surgeon: Beth Moore

If you want to throw up and see the post op wound:¤t=0804081202a.jpg


Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 2/13/2009 9:54 PM (GMT -6)   
hey RooR,

Sorry you've had to deal with all of that! Hang in there sound like a tough kid who is going to come out of all of this a-ok!
I too suffered with Crohn's in college -- no surgeries, but a lot of pain, prednisone, bathroom issues etc.
I went the fraternity route VT and then moved out to AZ where I am now- graduated from ASU so I guess we can't be friends...haha
Anyway...all any of us can do is roll with it and make evry day and every experience the best it can be right?
Just to let you know- I partied my ass off, "met" plenty of girls, had serious amounts of fun and even managed to graduate (took a while though)!
Even met my wife at ASU and now have a beautiful 3.5 year old daughter!
Good luck with the future surgeries and take it easy on the co-eds!

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 2/13/2009 9:55 PM (GMT -6)   
I'd be careful with a double major if you're just getting over all this. I could never say whose life 'sucks' more, but I will say you have definitely been put through the wringer.
If you want some stories of people going through horrors and coming out still absolutely amazing then try looking at randynoguts' website just as an example.

As for me, I am 20 and in college. I was double majoring in sociology and biology, but I am sticking to microbiology for the moment and either simply majoring in that or going pre-med or law depending. Taking it one step at a time though. I've been hospitalized several times in the past one year period, had surgery, and went through a really depressed period as this disease basically killed my unborn child from the pressure it put on it last summer.
Life is still good in spite of it all.
I admire that you're going to school and allowing yourself to live a normal life. Hopefully you'll find a girl that understands soon :) I know people really don't get it sometimes...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 2/13/2009 9:56 PM (GMT -6)   
Ok first of all having colostomy might actually help you get is call the forence nightengale syndrome...and by the way you had some really rough spots but it sounds like things are gettting better...
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 2/13/2009 10:40 PM (GMT -6)   
MMMNAVY said...
Ok first of all having colostomy might actually help you get is call the forence nightengale syndrome...and by the way you had some really rough spots but it sounds like things are gettting better...

Isn't that where you fall in love with your doctor?

I find it highly unlikely that shallow college girls will want anything to do with me if they found out I have a colostomy. I'm trying to keep it as much of a secret as I can until it's reversed in May.
Thanks for all your support guys!

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 2/13/2009 11:20 PM (GMT -6)   
In some ways your story is inspiring, at least it inspired me. I mean to be that sick and to hear that you're getting stronger and gaining weight and eating normally is awesome. Do you have any pain?

I know it seems like it sucks, but trust me you have a long time to make up for it.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 2/13/2009 11:31 PM (GMT -6)   
Well man you know it can only get better from here :) I know a lot of people on this board feel this way, and even with the Crohn's and all the issues that I have had, I still believe I am having a better quality of life than many centuries of people before me and even some some areas of the world right now. I have seen some areas of the world that I would rather deal with Crohns than live how they have to live to survive. I could make this a long post but you get the idea. Keep a positive attitude, once you get threw this you will be able to do anything.
SCD since 01, remission since 01, occasional Arby's breaks :)

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 2/13/2009 11:45 PM (GMT -6)   
shocked I am definitely not going to be entering this competition !!! yeah wink
Well if the yin/yang theory is correct....somewhere there is an idle wastrel lounging by the pool working on his tan and getting massaged by beautiful women... nonoand he thanks you for the donation of all your good luck !

Regular Member

Date Joined Apr 2008
Total Posts : 90
   Posted 2/13/2009 11:48 PM (GMT -6)   
sorry to here about all your mishaps but can i ask is it better with the bag i am thinking of having one myself bex x.

New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 2/14/2009 1:15 AM (GMT -6)   
Rider Fan said...
In some ways your story is inspiring, at least it inspired me. I mean to be that sick and to hear that you're getting stronger and gaining weight and eating normally is awesome. Do you have any pain?

I know it seems like it sucks, but trust me you have a long time to make up for it.

I am not in any pain except when when I jump, then my abs feel like they are on fire. Before I got sick I could dunk, and now I can only touch the rim because it hurts too much to jump mad

becellea74 said...
sorry to here about all your mishaps but can i ask is it better with the bag i am thinking of having one myself bex x.

Uhh well my flare up is gone, so I am back to feeling normal. I would not recommend it unless it becomes a life/death issue like it was with me. There's a lot of depression and anger that comes with it... at least for me.

Veteran Member

Date Joined Jan 2003
Total Posts : 6044
   Posted 2/14/2009 5:33 AM (GMT -6)   
not that its a competition on whose got it worse off in life, be glad your young and relativly healthy when this happened and not 15-20 years and 7-8 surgeries down the road when it did.. glad your doing better now. and florence nightingale syndrome is really two things, getting a crush on your nurse and having a female getting a crush on you wanting to be your nurse or florence nightingale. try asking at school if there is an ostomy support group on campus.. there might be or at least one in the city you are in.. you would be surprised how many peopl have one and no body knows. i would not wait to meet someone till its fixed. there is the possiblity that it wont be. so why wait... thanks for the plug LMills! RooR, please do check my site below or at :0)

  be sure to check all the photo pages..


Veteran Member

Date Joined Jan 2009
Total Posts : 829
   Posted 2/14/2009 5:46 AM (GMT -6)   
my ex had a colostomy when we started dating it bothered him more than me, actually it never bothered me :)
He had crohn's.

I was 20 at the time :) And did not know what crohn's or colostomy was at first but knowing him helped me a lot when i was diagnosed 4 years later..

So i think you don't have to give up dating because of your colostomy, just pick the right girl :)
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 2/14/2009 5:55 AM (GMT -6)   
I have to agree with the others, Roo. I can completely understand your wanting to delay dating until your ostomy is reversed, but I think chronic illness teaches us the value of living in the now. You have no way of knowing that today won't be the best and healthiest day of your life, Roo. Live *now* if you possibly can.

We're glad to welcome you to our community!

Co-Moderator Crohn's Forum.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 2/14/2009 6:49 AM (GMT -6)   
Hi and welcome glad you joined us.Thanks for your inspiring story and hope life just keeps on improving. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 2/14/2009 12:58 PM (GMT -6)   
Welcome to the board, RooR.... Can I call ya Roo? :).... Anyway, you sound like you have gone through quite a lot... I haven't gone through nearly as much as you have (with Crohn's, that is)... Very inspiring story. At any rate, I'd like to say that not all college females are shallow. I'm not sure of the ratio of shallow to not shallow myself, but well... I'm a college female, and I don't consider myself shallow... And there are a couple of other college females on this board that aren't shallow, either. I guess maybe there's some bias there because I have Crohn's, too, but still...

Even before Crohn's, I wouldn't have looked down on someone because of that... Anybody who does do that is shallow, like you said, and they're not worth your time.
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 2/14/2009 1:02 PM (GMT -6)   
Randy is correct I was refering to the girls getting the hots for you, because you are a bit vernerable...but stick with someone who has a strong stomach! Like a pre-med major...

The Florence Nightingale Effect is referenced in the movie Back to the Future, in fact spurring a major plot point, when Marty McFly's mother Lorraine becomes entranced with Marty instead of his father George after Marty is hit with Lorraine's father's car instead of George. This is stated directly by Dr. Emmett Brown, and is also a divergence in the original timeline which poses an existential threat to Marty.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 2/15/2009 7:40 PM (GMT -6)   
roor - a very attractive female friend of mine dated a guy w/ an ostomy in high school. It didn't bother her at all. I know it must be really hard but don't let it hold you back.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Regular Member

Date Joined Feb 2008
Total Posts : 25
   Posted 2/18/2009 5:17 PM (GMT -6)   
So sorry about the tough time you've had. I'd say that the discipline you've developed, insight and ability to overcome such a maddening obstacle will serve you very well in the future.

Hope you stay healthy from here on out and and are able to realize your full potential, because it seems considerable.

Regular Member

Date Joined Jan 2008
Total Posts : 491
   Posted 2/18/2009 6:14 PM (GMT -6)   
Never tempt worse....

My brother was diagnosed with pancreatic cancer & died 4 months & 8 days later. He suffered horribly.

It could ALWAYS be worse.
Live for today, for tomorrow you might just get hit by a semi.

Regular Member

Date Joined Dec 2008
Total Posts : 23
   Posted 2/18/2009 7:38 PM (GMT -6)   
HI RooR... thank you for your inspiring story. I have two sons 18 and 15 and if they lived through what you have lived through, I hope they would show as much strength, courage and determination as you have.
I am the one diagnosed with Crhons/Colitis and have been in a flare for over a year now but I have not been working with the doctors in trying to avoid the meds...shame on me.. after reading your story RooR, I now know that I am the only one who can help myself get better...thank you RooR - I am truly thankful to reading your story. Thank you for having the courage to write it...
Keep strong.. you will find the right girl who will understand your illness. Just remember college is at least 3 more years and there is plenty of time to date the girls...just don't fall in love too quickly..enjoy the college life - you deserve some fun
good luck with your studies and your illness - you show strength well beyond your years. Your parents must be very proud of you... i know I would be if you were my son
I am a 45 year old Canadian, living in Northern Ontario. Just recently diagnosed with Crohn's and Colitis Nov '07 ... Had a Gastric Bypass Surgery in Feb '08

New Member

Date Joined Feb 2009
Total Posts : 8
   Posted 2/19/2009 5:57 AM (GMT -6)   

Hi Roor

Wow.. you've really had every ounce of you put to the test! I am delighted to hear things seem to be coming along, and you're improving and gaining the weight're a very tough and determined young man, without question

as far as meeting ladies- the right one will come your way..she'll no doubt fall in love with your strength and determination to overcome whatever life throws your way  tongue

I hope things continue to improve for you


Degenerative Disc Disease of Lumbar spine since 2002, Fusion w/hardware L3-4, L4-5, L5-S1 on 8-11-04, Fibromyalgia, Spinal Stenosis lumbar and cervical.. Possible Crohns (will know more 2-18-09) Chronic depression

Regular Member

Date Joined Oct 2007
Total Posts : 294
   Posted 2/25/2009 4:01 PM (GMT -6)   
Wow...Wow...Wow....I have been positive for the majority of my 15 years of living with Crohns....but today I can honestly say that I am feeling sorry for myself and I feel like god is a prick! I see no lesson or no value in this life is litteraly 100 times harder to live because of this disease...I have been optimistic I follow the doctors orders. I eat right, I excercise, I dont drink out of control, I dont smoke! I try my darndest to be the best person I can be! and yet and still for no reason that is Colon inflames causing me to loose 15 to 20 lbs in a matter of a month or two! I look gaunt and feel frail...and taking a crap feels like child birth on a daily basis! Yes life truly is not fair...and there is no meaning or lessons to be learned from being crhoniclly ill...Its simply the thing called life.

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 2/25/2009 5:40 PM (GMT -6)   
Worse? How about this: you just finish YEARS of college, are getting your life in order, and you go into the hospital for a quick "day surgery" that turns into 3 strokes and the complete loss of speach and movement, all at the ripe age of 26? It can ALWAYS be worse and I am so sorry you have gone through a horrible time. Keep looking ahead, it will get better.
RX Crohn's 1999, over 30 surgeries, 3 strokes, still kickin!!
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Regular Member

Date Joined Jan 2009
Total Posts : 209
   Posted 2/25/2009 8:47 PM (GMT -6)   
Wow,6'4 and $1.25
Intestine fallout...
You are one amazing dude!
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