Your Crohn's Disease Stories: January - April 2009
Following you will find the latest contributions from our visitors regarding their experiences with Crohn's Disease.
You can also post comments and questions on our Crohn's Disease Forum.
"When I was 33 years old I was told that I have crohn's, I was like why me? the symptoms were chronic diarrhea, abdoman and belly pain, and cramps. the meds that i take now are fiber-con, multi-vitamin, vitamin c, calcium, iron tablets, remicade, azathioprine and effexor.
Every now and then i have a flare-up. i watch what food i eat. i try to not to get too stressed out.i found things that help me calm down if i start stressing out like reading, crocheting and exercising and it seems to work really well. I have i had crohn's going on 8 years this september. I have good and bad days, i also learned not to take life for granted anymore and live each day to the fullest like it is my last. nancy Missouri
Thanks for sharing your story Nancy.
"Hi, I am a 34 year old female who has had crohn's disease since I was 13 years old. It took them almost a year to diagnose me. I was basically wasting away. I was embarrassed, sick and tired. I kept thinking that somehow I had aids. My hair was falling out and my legs were swollen. My parents finally switched clinics and the doctor sent me straight to a gastro. I was diagnosed right away with Crohn's.
We had never heard of the disease and I was put on Sulfa drugs. The sulfa drugs worked great until I developed an allergic reaction to them. I always had severe diareah and took several imodiums every day. For a couple of years the doctors left me on nothing to treat my crohns. I remember taking nuprin by the handfuls and being really depressed. When I was 19 years old I became very sick. I dropped out of college due to the effects. They would admit me for a weekend and take umpteen pregnancy tests even though I told them I was not active. After giving me IV fluids they would send me home.
Finally I was sent up to the hospital with appendicitis. It turns out they had to wait a week before they could even do surgery and when they did found out my intestines were wrapped around my appendix. They ended up removing 18 inches of my intestine. Again they put me on nothing except prednisone following the surgery. I switched gastro doctors approximately 6 times and went to the mayo clinic 5 times over the past 20 years. If you dont think something is right change doctors.
I have learned that I know my body better then anyone and if the doc doesnt listen it is time to move on. I tried pentasa, asacol, Methotrexate and a few others I cant remember and nothing seemed to help. In 1998 my gastro doctor put me on colestid. I finally had a normal bm and dont have to take imodium anymore. If you suffer with severe diareah ask your doctor about Colestid. Finally I was on 6MP and did okay however my white count dropped and they switched me to azathiaprine. During that time I had tried numerous fertility treatments and didnt get pregnant. I eventually had another crohn's flare up. Once again I spent a couple 2 day stints in the hospital and was sent home. They even gave me remicade in November 2001.
I couldnt keep anything in me from November to February and ended up having surgery in February 2002. They removed 14 inches this time. I was sent home with azathiaprine and prednisone. Needless to say in March I became pregnant with my first little angel. I was on prednisone almost the entire pregnancy which made her a very tiny baby. Overall my crohn's was very good during pregnancy but once she was born I was very ill. I had a stroller in the house which I would put her in and wheel into the bathroom with me. I am pretty sure she spent most of her first 2 months in the bathroom with me...poor little thing. The doctors put me on Remicade (my miracle drug). I did have an allergic reaction which freaked me out. I was at a weekend retreat and it started with my arms hurting to where I couldnt walk anymore. I was told this is like getting severe arthritis. They gave me prednisone and bendryl and I was feeling better right away. I now get benedryl via IV prior to the remicade. I have been really healthy and have been on remicade ever since By the way I also had another baby.
In June of 2004 I had a healthy baby boy. Thanks to remicade I was able to leave an unhealthy marriage and work full time and care for my kids as a single mom. I am pretty sure God had alot to do with that. Now I am remarried and still very healthy. I didnt let Crohn's make my decisions in my life and I didnt let it stop me. If you tell me I cant do something I will probably do it. I pray that my children do not get Crohns but if they do we will help them to cope. Since I was diagnosed with Crohn's in 1988 I have had several family members diagnosed with Crohn's as well.
I have two sisters with Crohn's, a cousin on my dad's side and my mother was recently diagnosed. We have all reacted to Crohns so differently you would never think we have the same disease. I dont worry about the future....I just take one day at a time and I am thankful for each day I have with my family. If you would like to write to me I can be contacted at lmanderson458 @ gmail.com(take out spaces).
Very inspirational, thank you for sharing!
"having crohns for 45years,having 6 resections i am still learing more everyday.i am 56 and trying to recover from the last resection,i now have short bowel disease and trying to accept this new problem and not get down because it feels like it is kicking my butt.the new diet doesn,t help trying to get my health back.having been in AA for 30 years i know by sharing my story it will help me.i am happy to be alive today and there are some days not so much.jim bain"
Stay strong Jim!
"my name is eric hook, i recently had been diagnosed with crohns disease. about a year earlier i had been getting sever stomach cramps and pains every where down there. i finally went into the hostital for an endoscopy and they found the area between my upper and lower intestines was inflamed. they then put me on prilosec and some other meds. but that didn't work. the pain then got to the point where i was missing school weeks at a time.we ended up scheduling a second endoscopy and a colonoscopy. it was there that they found i had crohns. its been 6 months since ive had a pain or anything. im back at school and playong my sports again. thank you, eric hook"
"I am 17 years old, I found out I had crohn's disease a couple months after I turned 16. I was so stupid back then and didn't listen to my body warning me to get help. I had seen rectal bleeding coming from me since seventh grade. So I guess I have had it for about four years now, but I did not know about it for the first three. I started drinking tea about three times a day in the summer before eighth grade started and that may have been what kept me from going downhill. But it all started to hit the fan.
I was in my freshman year of highschool and I was also in national junior honor society but my grades started to drop because I got so sick so often. Finally the year was over and me, my mom and my friend went to disney world to celebrate my sweet sixteen. It was during that trip that I realized sommething was wrong. In the hotel room it felt like I was going to the bathroom a hundred times an hour and then my stool started to turn green. Later when we were home my mom took me to the doctor and they said that I had the Stomach flu, I kept going back to the doctor and they kept saying it was the stomach flu. But it was definitely not.
I always felt that if I wanted to get better I could make myself get better. But with this it was certaainly not the case. My stool had turned black. My mom got really worried and said I looked like a vampire and I did, I was paler than usual, my dark eyes were shadowed with black and I had lost 18 pounds in two weaks. My mom took me to my pediatrician and he examined and told me to go to the hospital. MY hemaglobin was 4 and my heartbeat was 180.
At the hospital I was put on an IV and I was also given 2 pints of blood. They said that if I had not come in that day my mom probally would have come home and found me dead.They could'nt find out what was wrong at the hospital for a few days, until they did the colonoscopy that is. They said it was the worst case they had ever seen. I was in the hospital for ten days. And got out at the end of June. I now take pentasa and iron for my crohn's and am able to manage it somewhat."
That's quite a story...thank you for sharing!
"Dear Sir I'm a male engineer,43 involved in Crohn' disease of Bowels for about 20 years. My life is full of stress. I've had some flare-ups during my youth, however it's in remission status for years insofar as I cut my cortisons 13 years back and Mesalazine 12 years back and since then no flareup... At the intervals of flare-up I was really suffering narrowing in descending of my colon which while treatment cured till the next flare up.
During 1 recent year I am suffering with stool discharge, Barium enema shows narrowing and colonoscopy is done up to narrowing part, since as tube could not be passed through. My doctor prescribed me Pentasa 500(3 times a day) and afterwards I feel a better discharge of stool and generally my signs have improved significantly.
Kindly reply the followings: 1) How it's possible the bowels get narrowened again without flare-up? 2) Could Pentasa(+ fish oil) be a treatment to narrowing and my bowels get opened after a complete course of Pentasa therapy? 3) My physician has told me that if medication doesn't take effect, surgery operation for cutting the narrowed part OR applying an instrument would be mandatory? Do you recommend it? Is it possible my bowels respond to Pentasa completely?
Best regards, Siroos Molazadeh-IRAN
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