Crohn's and my story

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Regular Member

Date Joined Aug 2008
Total Posts : 21
   Posted 8/26/2008 11:39 PM (GMT -6)   
  My run in with crohn's disease began around September of 98.. I was in my 2nd year of active duty in the Army and on tour in Bosnia when it all began.. All the typical symptoms... runs, nausea, stomach pain, and severe weight loss. By the time I was finally and correctly dx'd I had went from 188lbs to a frail 123lbs. I am 6'3 so I looked like a skeleton walking. The usual meds were then started ie.. prednisone, asacol, folic acid, 6-mp, and tons of vitamins. I was extremely lucky to be in service when I was diagnosed, because I don't know how most make it without some glorified insurance package.. The pred put the weight back on, but it made me a zombie. I was on a 60mg taper which meant going days without sleep even with sleep meds. I was medically retired in Jan of 00. Crohn's not only affected me physically, but mentally.. I was put on zoloft and prozac for severe depression.. I had always been  healthy and in top physical shape, so when I was finally labeled with a chronic disease that I would have for the rest of my life it really took the wind out of my sails for a bit. Then came the denial phase of having crohn's. I was in remission, so it made it a good bit easier to pretend that it wasn't happening.. It only lasted a few years. On Jan of 02' I was rushed to the er after having a severe gi bleed. My illeum had ruptured and they had to do emergency surgery to save my life. I had lost over 4 ounces of blood by the time i had reached the operating table. So sections were done and meds where perscribed[ at this time I was taking over 90 pills a day] and I hate taking pills. At the time my diet was horrible. I was eating fast food everyday, I was smoking 2 packs a day and i  was drinking like a fish. I really don't think I cared if I lived or died at that point in my life. On top of it all i was unmedicated for everything. After my surgery i began looking at crohn's alot more seriously. I stayed on my meds for about three years and then I was intruduced to the wonderful world of herbal remedies or so i thought. They did work for a while probably because my body was back in remission. Then Feb of 06 hit. Back to the hospital I went. This time I had stricture in my colon. They removed 27 inches of colon and my disease had another title added. Fistulizing crohn's disease. The surgery went well, but I haven't been the same since. I have had 8 rectal fistula's drained since then and two hernia operations since the removal of my sigmoid colon. Now my current situations really sux. My current gi is sending me to another gi for second opinion. He believes the remainder of my colon is shot and needs to be removed asap. I basically have to where a diaper, cuz I have lost all spincter control and I can't maintain a livable weight. I am at 115 right now. I have crohn's of the digestive tract from my throat to my potty. And I have crohn's of the skin, muscle, and eyes. Crohn's is a very serious disease and should never be dealt with lightly. I pray that anyone that is on this forum never loses sight of that. When first diagnosed I used to post topics on this forum everyday. I wanted to learn as much as possible about this nasty disease, then like an idiot i just gave up for a while.. Please don't ever ever give up. I am fighting for what life I have because I believe that there will one day be a real cure for crohn's.. May god bless each and everyone of you and if you have a story that you would like to share... post away!!! 
Dianosed with cd JAN 00
Sections in 02 and 06
Fistula's at 8 and possibly 9
Current meds: Immuran, Humira, Ciprofloxacin, Metronidazole, Calcium Carbonate, Vitamin D, Folic Acid, Loratab, Analpram, steroid injections, magneseum injections, and prayer.

Regular Member

Date Joined Jan 2008
Total Posts : 174
   Posted 8/27/2008 1:19 AM (GMT -6)   
Southpaw, that is quite a story. I am so sorry that this DD has taken such a toll on your poor body. You are so right when you say how this disease should never be dealt with lightly. I wish you well. Thanks for posting your story.

  • 41 yr old farmwife!! and mom of boys 11 and 9
  • resection surgery Feb. 2008
  • Pentasa, Entocort (when needed), citalopram,probiotic

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/27/2008 6:54 AM (GMT -6)   
Hi Thanks for sharing it seems you have been threw alot and I sure hope something can be done to help you. Your right about not giving up and sometimes it can be hard but thank goodness for each and every person here that shares so much it helps us to know that there are fighters .I will be waiting to see you get on to better health .Is your app. soon with your new GI?

I lived with IBS for 27 years pain , D and not being able to enjoy all life has to offer, then came a abcess operation not a little abcess but a biggie. Then a blockage and fistula to abdomen and Crohn's DX .Found out I had another fis. to both bowels and of course more blockages and resection. It's been tuff at times but I am still trying to live with myself and that's all any of us can do. We got the determination and strength and each other. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 8/27/2008 7:06 AM (GMT -6)   
You know, you are a really amazing person to keep that positive and uplifting perspective, and I really admire you for it. I am so sorry for the hardships this disease has given you..I just hope you know that the way you handle it makes you a real inspiration though. I know they'll figure something out for Crohn's. As far as they've come even in the past ten years and the growing awareness of it makes me think so anyway too. Thank you for sharing all of that and for staying so strong :)
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/27/2008 8:37 AM (GMT -6)   
(((SouthPaw3))) you really have been thru the ringer. But you have come back even stronger. Thank you for sharing your story. I really appreciate when you say that we must never forget how serious this disease is. That is one reason I stay with this board (also love the friends I have made), and that is to help others suffering with this DD, and to help them live better with the disease.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Regular Member

Date Joined Nov 2004
Total Posts : 158
   Posted 8/27/2008 8:47 AM (GMT -6)   
Thank you for sharing your story. I hope you continue to have such a positive attitude and that one day your body can find peace with this disease.
Diagnosed with UC in July of 2003 then diagnosed with Crohns in August of 2006.

Regular Member

Date Joined Jan 2008
Total Posts : 95
   Posted 8/27/2008 6:28 PM (GMT -6)   
Thank you for reminding us to stay positive even when things are crazy!!!!!!!!

Dx: Crohns 1987 probually had since 1982 resections in 1992 an 2002
Gallbladder removed in 1986 The list can go on and on (if you know whatI mean)
Married 25 yr with a 17yr old son

Veteran Member

Date Joined May 2003
Total Posts : 2480
   Posted 8/27/2008 6:42 PM (GMT -6)   
So sorry for how this disease has affected you. Too bad your remissions didn't last. I myself have never had a remission in the 10+ years diagnosed. My crohn's tends to slow down a little, then gets worse, slows down, etc. Although after my first child, the crohn's went full speed ahead and stayed that way. I had a 1 ft. resection in '05, and the CD came back immediately, I was obstructing again within a year and now I only have about 3 inches of active CD that often gets obstructed and causes my problems daily.

The one thing I have going for me now is that I'm pregnant and the pregnancy hormones have slowed down my diarrhea, but the CD itself is still active. I may have to have surgery sometime after the baby is born if I start obstructing again.

I'm with you, I hope a cure will happen soon cause nothing has put me in remission yet. Otherwise, I'm desperate enough to look into the hookworm therapy at the clinic in Mexico after I have my baby.

Best wishes and be well.

Regular Member

Date Joined Sep 2006
Total Posts : 146
   Posted 8/27/2008 7:07 PM (GMT -6)   
Thank you for posting your story.  It is good to share with each other what we go through with this terrible disease.  You are definately right, no one should take crohns lightly.  You have had a rough time to say the least but the only way to life sanely with crohns is to fight and you sound like a true fighter.  My crohns has been bad for about 3 years now.  I have losed about 20 lbs in the last 2-3 months because it is getting even worse.  I am trying Cimzia but it doesn't seem to be working.  Good Luck with everything. 

35 yo--Crohns since 2000, Granuloma cysts in mouth-oral surgery X2 in 2000, Fistula colon 2006, Rectovaginal Fistula 2008, 2 Ulcers Rectum, Joint pain. Kidney Stones. Dx with Migraines in 2002 and Ovarian Cysts with Endometrosis 2001.  Dx with Fibromyalgia in 2007 and IC in 2008.  Now receiving Cimzia, Topamax 300mg daily, Cymbalta 60mg daily, Prevacid 30mg, Maxalt, Vicodin as needed, Fish Oil, and Multivits   

Veteran Member

Date Joined Mar 2006
Total Posts : 1354
   Posted 8/27/2008 7:10 PM (GMT -6)   
Thank you for telling your story. You have a positive outlook even when faced with the worst this disease can throw at you - very inspirational. I, like you, hope there is a cure in the near future, thats what keeps me going some days.
Take care

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 8/27/2008 10:30 PM (GMT -6)   

Thank you SO MUCH for posting your story. I will keep you in my thoughts and prayers. I came down with Crohn's while in the Navy, and was just medically retired in April. I didn't really take my illness seriously (or should I say I was more in denial than anything else) until I had to go on TPN for over a week b/c I was so malnourished. I hope the disease will calm down for you, but at least you have a positive outlook. You definitely are a strong person! Please keep us updated on how you are doing. I created a blog for my family and friends b/c I didn't feel they truly understood how serious Crohn's was. It has helped immensely and has been very therapeutic for me. Take care of yourself!

-Emma =)

Regular Member

Date Joined Aug 2008
Total Posts : 21
   Posted 8/28/2008 1:24 AM (GMT -6)   


   Thanks so much for all the replies... It is definetly encouraging to know that so many people care no matter what they are going through. The problems that we face everyday with this disease is depressing, because it is something most take for granted everyday.. I used to love to eat, exercise, take long sunday afternoon drives, and for the most part just live. Now i see people that are completely healthy and running around or just being free from c/d and it makes me want to smack them.. ha ha just kidding!!! I have enough problems keeping up with my one year old and wife. It just seems so tragic that one day you are running the general's mile and the next you can't go 20 feet further than your bathroom. My family is the main reason that I am fighting like hell to make it through this. If it wasn't for them I would have drowned myself in my own toilet by now.. When i was first dx'd with this disease i was posting almost everyday on this forum under gimike.... if anyone remembers me yes Im still alive..  I was truely a mess back then.


Veteran Member

Date Joined Jan 2003
Total Posts : 6044
   Posted 8/28/2008 3:37 AM (GMT -6)   
SP, have you tried asking your dr to be on TPN for a few months to get some weight back. its not that bad. you could have such a better state of health this way . they can pump you full of vitamins and calories. yum!

lilturbo, i never heard you say your were navy before. GO SWABBIES!

New Member

Date Joined Aug 2008
Total Posts : 1
   Posted 8/29/2008 7:11 PM (GMT -6)   
Thanks for the story. I am laying here in a hospital bed. I am feeling alot of different feelings right now. And it is good to know I am not alone with this illness although I do not wish it on anybody. I was in such denial....telling myself I just had gas, eat the wrong foods, & worried too much about others happiness.
I have never posted anything online or chatted. I am new to all this.
Thanks for your story

Veteran Member

Date Joined Jan 2003
Total Posts : 6044
   Posted 8/29/2008 8:28 PM (GMT -6)   
hey ellyroe, welcome. too bad you in the hospital but maybe you can feel a bit better when your out. it works for me anyway..keep posting and we will be here for ya!

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 8/29/2008 8:41 PM (GMT -6)   

Welcome to the HW forum! You are DEFINITELY not alone! We've all been there. It took me two years, two hospitalizations (one of which required me to be on TPN for over a week..I know Randy, I've got nothin on ya!), to finally realize that this disease is something I am going to have to deal with instead of "pretend" it would go away and I would just miraculously get better. Hang in there!

Randy, I was in the Navy for almost 8 years before they kicked me to the curb b/c I got Crohn's! The first five of those were spent in school, and the last three of those were actual active duty (Intelligence Officer)! Oh well, it is what it is!

Keep us updated ellyroe! I'll be prayin for ya!


Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 8/30/2008 8:03 AM (GMT -6)   
Southpaw, I would DEFINITELY ask my doctor about TPN to help w/weight gain (and helps to rest the gut a bit too). Randy holds the record in the forum for length of time on TPN. I was on it for 2 1/2 or 3 1/2 months (I've forgotten now). It really does NOT cramp your style or interfere w/your life's activities! I was on it for 14 hours a day. I think Randy has his down to 12 hours a day. Go on it in the early evening when things calm down for the day and you can end it early enough in the morning to have the day to yourself so to speak. They give you a backpack and battery for the pump so you are completely mobile for the hours you are up and about and then a pole to hang the bag on whilst you sleep. I started mine about 6PM and ended it about 8 AM.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Regular Member

Date Joined Jan 2006
Total Posts : 303
   Posted 8/30/2008 5:05 PM (GMT -6)   
Southpaw, please email me privately. I have some questions for you.
29 YO Male
-CD diagnosed in 2005 illieum
-63cm bowel resection in Feb 08
-Steroid dependant following surgery
Humira Start date 8/1/08

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