Your Crohn's Stories: Apr '08 - Jun '08
Here are the newest Crohn's stories from our wonderful visitors...
You can also post comments and questions on our Crohn's Disease Forum.
"I have a poor attendance record with previous employers due to my illness. When applying for jobs I seldom get called in for interviews. It seems referrences just say i miss work frequently without explanation (I always had doctor's notes). Is there an employment support group? It now seems i'm more likely to starve than poop to death now."
Take a look around the site and post in the forum. You should be able to find some helpful information.
"They say Crohn's is not inherited especially from Parent to child. I do believe it is.I have a 19 yr old son that has had "crohns" since he 15.Last year he had to have surgery,he is 6"1" and he lost down to 113 pounds,he was basically on his death bed,dying before my eyes.He now takes Humira and now weighs 153.We are doing great!" Traci
Great to hear he's doing better Traci!
"It all began when I was in the sixth grade, around Christmas time. I barely remember those first months, probably a sign of how sick I really was. I lost my appetite and went from being a very happy and energetic 11 year old to being scrawny, lethargic, and depressed. I remember my mom starting to cry when I came in from being outside with some friends...all their cheeks were rosy and healthy but I was still pale as a sheet.
There were months, literally, of at least weekly doctor's appointments. For a long time, they could not figure out what was wrong with me. I wondered when I would ever feel like eating again or when the thought of helping mom carry grocery bags from the car wouldn't exhaust me. It was really scary for a long time. My parents would try to get me to drink protein shakes but I would adamently refuse as they made me feel incredibly sick. I didn't tell my parents about the stomach pains for a long time...
I was afraid of the cramping and especially of the bleeding. Finally, one night, I told my mom because it was unbearable. And, finally, my doctor had an inkling of what to do to help me. They first diagnosed me with Mono...I'm not sure now if I did or not, or if it was just the Crohn's disease. I still had no appetite, I still was lethargic, I still was weak, I still had incredible stomach pains. When my stomach would cramp, I would rock back and forth, trying to ease away the pain but it didn't always work. When all was said and done, I was home sick from school for 3 months. I remember going to school one morning and being told by classmates that I looked terrible. It was hard to hear but it was true.
In the summer between sixth and seventh grades I was finally connected with a pediatric GI. My diagnosis came in August, roughly 10 months after I first started showing symptoms. My pediatrician was gentle and so nice. I was put on a high dosage of Prednisone and I've never had as much energy or as large an appetite! Those months on prednisone had a lot of side effects, like chubby face, mood swings, and headaches. I was gradually weaned off it and I haven't had to go back on Prednisone since. Other medications have included Flagyll, Pentasa, Remicade, Probiotics, and Purinethol. These medications have been very hard on my system. I reacted very badly to Remicade and was only able to withstand 2 rounds of it. I also reacted badly to probiotics as it was live lactic acid and I've a very low tolerance for lactose. The Flagyll lasted for about a year.
The main side effects from that were the really bad taste of the medication and the numbness in my hands. I've been on Pentasa for about 5 years now and it has helped my symptoms to stabilize. There are still times when I have bad cramps, bloating, diarrhea, or bleed but those times are usually directly connected with stress, too much fresh/raw foods, too much coffee (the life of a college student...) or other external causes. The Purinethol has been part of my regime for about 3 years and has helped. It was hard to find a steady dosage but I've found that with the help of my doctor and am now able to live relatively symptom free. My goal is to get completely off the medication and I am moving closer to that as I focus more on eating better foods, taking care of my body, learning what triggers my Crohn's and looking into more natural remedies.
It has been a difficult journey and there are still bumps in the road. I've had a lot of side effects from my medication which is all the more reason to work towards not being dependent on it. I've officially had Crohn's for nearly 9 years now and I've come to terms with the fact it will be with me the rest of the life. What is important to remember is that it does not define my life or what I can and cannot do.
I've become a stronger person through it and am now in a position where I know my body and my disease. I will be off the meds soon and life will continue to be busy, productive, and fulfilling!"
What an inspiration...thanks for sharing!"
"I am 16 years old. My mother was diagnosed with Crohn's in 2001. My mother used to go to doctor appointments everyday, but her job did not allow her to leave work more than once a week. Because of this, it is too late for her to get treatment for her disease.
I have seen her in so much pain and she has spent weeks in bed. Its been hard watching her struggle with everything, and i have helped her multiple times with everyday needs. Finally, in 2005, my mother was diagnosed with cancer of the stomach. Her doctor has told her, that by 2012, she will not be here anymore. Although she has a limited time to live, she enjoys every minute of the sun and every minute of the day.
So don't give up. Enjoy your life, do what you have always wanted to do, eat what you have always wanted to eat, and don't let anything drag you down."
A great message, thank you.
"Hello my name is Dan, I was diagnosed at 6 yearys old,ive had 2 bowel resections in the time between then and now ,I am now 42, treated with prednisone for alot of years,especially during puberty ,and I believe it is the reason I cannot have children now, .there were times I just wanted to DIE ,and I quit taking care of myself for many years as i was alone with no family,I tried to drink myself to death,two years ago.with no one to blame but myself.
Then I met a wonderful woman,sandra, with the same medical problems,She took care of me better than any nurse ever could,she really saved my life,3 times so far ,but after my self afflicted abuse ,the damage was already done. After starting Remicade 6 months ago with minimal results, I returned to the ER,with agonizing pain,I knew what it was.so I was admited and had a bowel resection. when i came out of the anesthesia,I had a horrible feeling, not knowing who i was ,where i was,etc,all I felt was pain,and screaming for help ,Im not a religious person but the only thought i had was that I was in Hell.
I never felt anything like it in my life,and it has changed my attitude for the better. After returning home ,I had more of the same and returned to the ER,admitted again with another resection and a very large pelvic absess,phnemonia, staff infection,and a cf infection,and enough Morphine and demeral to bring down a herd of buffalo. After returning home my appitite dissapeared,and i got scared,started having stomach spasms and delusions ,i knew something was wrong I thought i was losing my mind the pain was so great i didnt know where i was or who i was ,luckily my girlfriend was with me. So again returned to the ER,in an ambulance this time and after being admitted I had my galbladder removed,it was full of stones.
We've decided to stop the remicade as i believe its too risky for me.and may have contributed to the infections.I would only recommend it as a last resort,but i do hear it works well.and thats just my opinion. I am home now after 8 weeks,and 5 trips to the operating room in that time, feeling better I am trying to get my weight back to 150lbs,from the 110lbs that i am now,its difficult,but my wife gives me all the motivation I need to recover. I have a wonderful wife now who was with me in the hospital every day ,all day long,she also has the same medical problems,and disabled as a result ,so we understand each other when healthy people dont. I have a great job my boss is very understanding about my problems and my jos waits for me no matter how long it takes.
Take my advise ,never give up on yourself,always take your medication and your doctors advise,if you dont i guarantee things can only get worse for you. I've had chrons for a long time and suffered alot ,but I always realized some have more serious problems than me,so I always consider myself fortunate. My eye muscles hurt now ,that started after 4 weeks in the hospital ,could that be a result of weight lose ?has anyone else had this?"
Dan henry danhenry -at- embarqmail.com
Thanks Dan...anyone have any advice re eye issue?
"I have been battleing crohn's disease for 13 years. I am 32 years old, GOD blessed me with 2 beautiful children, I have recently been told I also have Severe Irritable Bowel Disease. I have weight 118lbs, I have extreme trouble taking any medication orally, as well as an absorbtion problem. I had a bowel resection 11years ago. I have a degree, and have tried so hard to make something of myself. But in the end I am always battleing some symptom from some illness. I just dont know what to do? Any advice?
Hang in there...a lot of helpful advice on these pages so take a look through.
I just wanted to thank you for this information because I have been suffering for a long time and going back and forth to the doctor and still they could not tell me what was going on and now I can go back to them and have something to offer to them so they can take a look see if this my be my problem.
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