Crohn's Disease Forum » Your Story » Hi everybody!

04-20-2006, 04:37 PM   #1
Hi everybody!

Hi! My name is Robbie, Ree for short if you like. My whole family calls me Ree, as well as most of my friends, but I'll answer to Robb, or Hey You..ha. I'm from Louisiana, born and bred. I'm a single mom to 2 wonderful kids, Ashley who is 22 now and in college, and Josh who is 15 and we homeschool but he's in 10th grade as of now. We also have 3 dogs, Charlie, a CharPei/Pitbull/German Shepard mix who is goofy as the day is long, Missy, my Rat Terrier, and Izzy, 'cause we don't know what kind of dog Is He....get it? Is he...Izzy? Oh well. I've got a pretty twisted sense of humor as you will all see soon enough, but I hope I'm not offensive to anyone. I've just found that with Crohn's, it's better to laugh about it than cry, because once you start crying about it, it's awful hard to stop.

My life with Crohn's....whew..where do I start? I guess the beginning would be a good place.

I've had Crohn's since I was 14, at least that's as far back as I can trace the symptoms. It started with the basic symptoms, fevers for no reason, terrible stomach pain, and what my Pops calls "the back door trots". My mom started taking me to one doctor after another and we were told everything from I just had ulcers, to I was making it all up for attention, to Anorexia and Bulimia, to I was just crazy and they should commit me to a hospital and forget about me, to I was on drugs. This went on for 5 years and I had accepted the fact that whatever was wrong with me, nobody knew what it was and I should just pretend there was nothing wrong. So I went on with life as best I could.

When I was 16, i had my daughter and things got worse. I think I need to point out here that there are many dynamics in my life that had nothing whatsoever to do with my disease, but in turn, they affected it greatly. Emotions, stress, turmoil, all of that has a negative effect on Crohn's.

After my daughter was born, the symptoms went from bad to very bad. On top of becoming a new mom at age 16 (which I don't recommend to anyone altho I wouldn't change it now for the world), I was finishing high school, starting Vocational Technical school, and blah blah blah. The pain got worse, the fevers got more frequent, the "trots" got worse, my weight went from 309 lbs to 140 lbs with no dieting, and still nobody believed me when I said there was something wrong.

I feel I need to add here that I have 2 sisters, one older and one younger. Yeah, yeah, that makes me the "neglected middle child" We've never been close, they've never supported me, and they've both done things to hinder any support from other people...i.e. people in the church, people in the community, etc. But that's a whole other To this day, they don't believe there's anything wrong with me and they'll tell anybody who will listen that I fake it all for the attention. I spent a lot of years trying to be accepted by them and be their friend/sister, but there are some things you just can't change and I've accepted that. Moving on......

When I was 19, I got married to the first guy who asked, and moved to Atlanta GA. I loved it there and landed the best job on earth with a publishing company as Assistant Manager of Accounts Receivable. I was in charge of all billing accounts. How's that for a low-stress job..hahahha! Anyhow, I started to get even sicker and lost down to 110 lbs. One day a lady in my office told me she had made me an appointment with her family doctor and I was going whether I liked it or not. I was still pretending there was nothing wrong because that's what I'd been conditioned to do to survive in the real world. So I relented and I went with her to her doctor.

I owe that lady my life. This doctor took one good long look at me and said the words I'd been praying for for 5 long years, "I think I can help you". I broke down and cried. He told me about Crohn's Disease and it scared the beejeezes out of me and I cried even harder, but he held my hand and patted my back and let me cry on his shoulder. I was relieved and terrified all at the same time. He told me he was referring me to a gastroenterologist for tests and made me the appointment. I went home and told my new husband and the next week he drove me to the hospital for the tests, you know the one, the "Scope"...*shiver*. Four hours later, they released me and my wonderful husband yelled and screamed at me for taking so long. He refused to help me to the car and made me walk. When I collapsed in the parking lot, he got the car and practically threw me in and he yelled at me all the way home.

The following week I was back at Dr. Sunshine's office (yes that was his real for the results. He told me that I did indeed have Crohn's Disease and that it was the absolute worse form of the disease. He told me that I was the worse case he'd ever seen and 3 years later he wrote a paper on me that was published in the AMA Magazine. (My one claim to He put me on Prednisone and other meds and things got better. I went right home and called my MOm and Pop and told them the news and it was then that they realized that I had been telling them the truth the whole time.

Life was good for the next 3 years. I loved my job, my health was improving, I could eat again and actually sit thru a movie without running to the bathroom. My wonderful husband, however, turned out to be the single most bad decision I'd ever made. He was abusive, he drank too much, and he was doing lots of drugs and bringing home his drug friends all the time. So on top of my stressful job, I had a very stressful home life as well. Then I got pregnant with my son Josh. Dr. Sunshine told me not to worry, that everything should go fine because I had acheived remission, but that following the birth I would need to be with my family because he was pretty sure things would flare up and get really bad after that. So I had to tell my hubby that we had to move back to Louisiana, which he didn't want to do.

Josh was born in 1990 healthy and normal and 6 weeks later, we moved home. Good thing too. Five months after that I understood what Dr. S had been trying to tell me. Not only did things get worse, they were so bad that I spend the next year and a half in and out of the hospital....for a grand total of 7 1/2 months! I finally ended up having surgery to remove 2 feet of colon, my ilium, and 4 feet of small intestine.

I divorced my wonderful hasbeen in 1995 I think. The next 16 years passed in a blur. I was in and out of hospitals having this surgery or that surgery, this procedure or that procedure. I got married and divorced AGAIN. I guess it's hard to watch the person you love and swore to love and honor in sickness and in health suffer so much. I learned to live with my disease and be happy anyway...boy was that a hard lesson to learn.

This post would be 12 pages long if I didn't stop here. In the past 16 years, I've had 8 more surgeries, taken every drug there is for crohn's, had nearly every complication you could have. Right now I have my 2nd temporary colostomy. My remaining colon and small intestines are riddled with fistulae that connect with almost every other organ in my abdomen. I've spent the past 3 or 4 years trying to get healthy enough for my next surgery to repair all the fistulae and damage caused by Lotronex, a drug I was given that was removed from the market for which I got a nice settlement but not nearly enough in my opinion. I've had absesses, masses removed, and I almost died 3 times in 2001 when I spent 3 months in the hospital with obstructions and ruptures and ended up with sepsis, a serious, almost always fatal blood infection that shut down my kidneys, liver, and God only knows what else.

At my last doctor's visit, he told me with a great big grin that my liver function is now finally almost normal again!!! YAY! Bout time. I'm on a list of meds a foot long, but they're working for me right now. I'm just waiting for Doc to tell me we can do the surgery.

I haven't been able to work since my son was born and I've been on SSI Disability forever it seems like. But I'm happy and well adjusted, at least I think so. I would love nothing more than to help other people with Crohn's. As crazy as this sounds, as long as I've had this disease, I've only met 2 other people with it. Now I have everybody here and it is WONDERFUL!!! I can't wait to meet everybody and read everybody's stories.

I just want everybody here to know that I'm here for anybody who needs to talk or rant or rave or cry or cuss because I've been where you all are and I'll probably be there again eventually.

Sorry this was so long, but hey, it could have been longer..haha.
04-20-2006, 04:53 PM   #2
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario
This was a truly wonderful read. Thank you for taking the time to write this and letting us in on some of the more personal details of your life. It is awful to see how you have been treated in the past for things you could not control, but luckily all of that is in the past.

I hope that you can now at least meet some more people who are more familiar with what you are going through. No one should have to go through this alone, especially the way you had to.
04-20-2006, 04:58 PM   #3
Hi Ree!

Thanks for sharing! Your story truly is an inspiration.
As a result of experiencing it all Crohn's (and it seems life) related, Im sure you will be of much help to newly diagnosed members. Thanks to people like you, noone will have to go through the terrible time getting diagnosed properly that you did!
04-20-2006, 05:07 PM   #4
Gosh, I just hope my post doesn't scare somebody who's newly diagnosed. But I hate those stupid pamphlets the docs give you about Crohn's. You know the ones, the ones that say "People with Crohn's can lead a normal active life"? I think people should be told the truth about everything that could happen, even tho most of what I've gone thru isn't the norm. At least I hope it's not.

I thought it was important to throw in the personal stuff. Stress and stuff can make it all worse and I've had a pretty stressful life. Not anymore tho. My current motto is "F*** 'em and feed 'em fish heads". Anyway, people need to get all that personal stress crap off their chest and out of their bodies one way or another. It really does eat you up from the inside out.

Thanks for the warm welcome. I think I'll love it here! It's going to be interesting meeting others who live my This is a new experience for me.
04-21-2006, 10:29 AM   #5
New Member
Join Date: Apr 2006
I am glad that I got to read what some other people have gone through with this disease. It does not scare me, just amazes me all the different things you had to go through. Most drama's today don't have as many twists and turns as some of your lives. It is good to see that in it all you have kept your humour though and continue to keep moving forward.
04-21-2006, 11:52 AM   #6
Mama Crohnie
cookey's Avatar
Join Date: Apr 2006
WOW Ree, you and I could write a book I'm sure. I thought I told my story, I actually did in here we go with my life living with Crohns/Colitis. I was 17 yrs old with a great job working for Met Life Insurance. A word of warning, some very graphic details...but all reality. I came down with a very bad case of Diarrhea in 1978..didn't think another thing of it, told my parents...and a couple of days later they took me to a doctor. The doctor said that there was nothing wrong with me, I just had a bad case of Diarrhea. Hmmm, something to this day I'll never understand, because she never even took the time to do tests. "Go home and stay on a bland diet, we'll see you back here in a couple of days" she said. You have to remember now, this is back in 1978...and yes we did have xray machines back in those They never took the time to look into anything any further, because Crohn's was not even heard of. However, Colitis was.

So, about 1 week later...I got up in the middle of the night, with terrible pain..went to do my thing and looked in the toilet bowl, blood everywhere. I was hemmoraging, but I didn't realize that, I was a kid...I just knew something was not right. I screamed for my mother, she saw this and called the hospital right away. She spoke with some idiot doctor, who told my mother not to worry, to get me dressed and ready to come into the hospital by morning. My mother said to them "are you crazy"?, she is hemmoraging fresh blood?" Doctors response "OK maam, get her dressed and bring her into emergency" Is it just me, or does it sound like this doctor should have been practicing?

Anyways, While in hospital...They were doing tests, all the lovely stuff us Cronies love, (ya right!!). One night...i got up again in the hospital to go to the bathroom, same thing happened, all i remember is going and seeing all the blood...then I immediately passed out. When I came too...I was on a stretcher in ICU. They told me they had to call my parents, I had tubes name it, it was there. I had taken a turn for the worst, and I was begging them not to tell my parents anything other then to come to the hospital. Yep, I was dying...but luckily with 12 bags of blood transfusion I survived. Remember they still don't know what I have...but they sure worked quick after this incident.

Finally I turned 18, and I got the news that I was diagnosed with Crohn's/Colitis. The first year was pretty bad for me, as they were trying to stable my condition, I was put on Flagyl...a drug that never did help me in anyway. Then came along this little tiny white pill, (prednisone) that helped to control my flare-ups. Little did I know at that time that this drug was a steroid, and that I would blubber out to look like a bloody elephant. Unfortunately, it didn't help with all the fistula's I was getting on my vagina, and other areas. Very painful to say the least, but it was helping in controlling my disease. I couldn't eat much for the first couple of years, anything I ate...I would flare up. The hospital was literally my first home, because I was in and out for months at a time, living on Jello products and juices. I never want to see Jello again in my life I thought...and since then, I stick up my nose to that stuff.

Well Ree, It's not a competition to see who has the longest and best story, but I may be topping you here soon.. lol. Soooo, I'll try and condense this. In 1987 I weighed 62 pounds, I have a picture somewhere and would love to post for all to deathly ill I really was, and compare to what I look like today, all because of the greatest decision I have ever had to make to get my life back.

In 1987 my doctor told me if I didn't make up my mind to have an Ileostomy performed that I would die, and that was a given. I was so thin I couldn't walk. I gave it serious thought of course, and had my life changing surgery done on March 12 / 1988...and have been off all meds, since then. I now weigh, 138 pds. I'm healthy, active, can eat anything...and enjoying every moment of living as a bag lady. So much more to this story...but we need room for others to tell theres. Like Ree...I too say, if anyone would like to chat, or email me...I am here for you no second thoughts. I now work for CCFC here in my hometown, and attend monthly CFIC meetings...where on occasion I am a guest speaker. I do volunteer work for the hospitals also, where I go around speaking to all the teenage kids about Crohns, and try to address their fears, or any concerns they may have for living with this very painful affliction.

Way to go Mike, I tip my hat to you sweetie...I know I have told you this before, but I admire your ambition to put this site together. On that note, health and happiness to each and every one of you. Always remember, there are way more serious illnesses out there, and that you are definitly not alone.

Last edited by cookey; 05-01-2006 at 07:15 PM.
04-21-2006, 12:25 PM   #7
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario
Wow cookie that is some really incredible stuff. I cannot believe that your weight dropped to such a low level at one point, and I am so glad to hear that things have been much better since the surgery. There seems like there were some really scary times back then, but that you have moved well past those and are able to be active and healthy (and most importantly happy) again.

Already I am happy with the forum as we have all been able to learn a litle more about some of the people who share our disease. It is truly amazing to see what some of us have had to go through, and it is most encouraging to see that through it all you have all remained in good spirits.
04-21-2006, 01:52 PM   #8
Wow Cookey! We must have been twins in a previous I don't know how to say this without it sounding wrong, but I'm so relieved to read your story and know that I'm not the only one! I mean, i hate you had to go thru all of that, but you know what I mean...ha.

62 lbs!! Geezum crow woman! How tall are you? The lowest I ever got was in 2002 when I almost died and that was only 104. But when you consider that I'm 5' 10 1/2" tall and have the frame of a linebacker, that's pretty bad. Everybody in my family is tall and big boneded.... I'm actually the shortest one in my family. Both my sisters are over 6 ft tall.
04-21-2006, 03:23 PM   #9
Mama Crohnie
cookey's Avatar
Join Date: Apr 2006
Thanks Mike...yes, pretty awful stuff, and that wasn't even half of it. I'm glad to hear everyone is doing relatively well with their Crohn's. Ree..your killing me over here, ...funny gal I gotta say, the best humor, keep it up gal, cause lord knows crying isnt going to get us anywhere. Yessim just 62 pounds...and I'm only 5'2". Short thang!! It's really a miracle I survived to be honest.

Last edited by cookey; 05-01-2006 at 07:18 PM.
04-21-2006, 03:28 PM   #10
My son tells me all the time that I'm just not right...
04-23-2006, 07:07 PM   #11
Karen's Avatar
Join Date: Apr 2006
Location: Ohio

My Support Groups:
ReeRee ... The least I can do is post something on your thread and say HELLO & thanks for posting on mine and I hope that I can make a lot of new friends here so stay blessed and see you around soon !!
04-25-2006, 12:37 AM   #12
Thanks Karen! I look forward to seeing you around here a LOT.

I can't help but notice that you have a blinkie. My friends call me the blinkie Do you like graphics? I have a ton I'd love to share. Just odds and ends I've collected, and about a thousand

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