Your Crohn's Disease Stories: July - December 2010
Below you will find stories and comments submitted by visitors just like you affected by Crohn's Disease in some manner. Some are from sufferers, others from friends and family members. Read what others have to say, and please feel free to send us your story:
You can also post comments and questions on our Crohn's Disease Forum.
2nd half of 2010 contributions
"Been diagnosed last month, had it since i was 14 im now 35, been rushed into er many times with pain and bloated stomach. Had full hysteroctemy 6 years ago. Last year appendix out.yet pain seems to b the same..my back pain and joint pain has been really bad, really felt like maybe it was all in my head...doctors could never find a cause..
I have had 3 scopes but only last month under general did they find chrons my colon was v long and difficult and thats why the other doctors couldnt have got a diagnosis. Last month was pretty bad flare up i had bad ulsers all over my throat. One thing that ive not heard other people complain of is my eyes. They get v dark black circles and almost sunken in..only when im not feeling great. As soon as it passes they look fine. I thought i has allergies! I have stopped eating raw fruit n veg. Pop corn is a big no no. Also coffee just makes a good day bad! I have went from 74 kgs to 65kg inside few months others have noticed my concentration is v bad.
I have really found this site v helpful! Thank u!"
Glad you've found the site helpful, and thank you for your story.
"I have had severe abdominal pain for one year and a half..i have had my galbladder removed, because the doctors said that was causing my pain..i have had every test that they can do...3 colonoscopy's , two endoscopy's a pill cam, a barium test and upper gi.
I have been put on antibiotics several times, i have have 3 cat scans, 4 mri's xrays, you said it i have had it done.. I have been hospitalized 7 times...i have changed gastro doctors 3 times, and primary doctors twice, no one can give me an answer on what it wrong with me....so, i ended up having a a blood test (asca) and it came back positive........
The doctor that i am seeing is still dismissing what the test said, so i ended up having another endo done with a longer scope, i was in so much pain that day...the nurses told the doctor, that i need something, and finally he put me on a medication called pentesa..i am telling you if your not your on advocate, no one cares..... I have been on it for two days and i have had absolutly no pain..why couldn't they have given this to me before, i have been suffering all this time, and i had an organ removed for no reason....i just hope this medicine continues working, because if it does its a miracle........"
Yes, you certainly have to be proactive when it comes to treatment. Stay on top of everything and learn as much as you can.
"The worst time of my life was when i got diognosed with Crohn's disease. I was 13 when i got really sick. My symptoms included vomiting, loss of appitite, bloody stools, diheria, and severe stomach pain. It was 2 months dealing with these symptoms before i got emergency care.
After many tests, they came to the conclusion that i had either crohn's or ulcertiv colitis. after 2 weeks of being in the hospital, I was being treated for crohn's disease. They put me on prednison(a type of steroide used for medical reasons), asocol and mercaptapourine. while on the medications and still in the hospital with pain, i tried remicade. within the first day of trying it, i was pain free. so i was sent home with a diet plan.
while still on prednison, i gained massive weight really quick. withn a couple of months, i went from 120 lbs. to 210 lbs. my body couldnt handle the weight gain since i was so young. along with just being diagnosed with crohn's, i now had huge stretch marks all over my body.
i became very depressed and desocialized myself. it was a really hard time. currently i continue the remicade, nothing else but a healthy diet. I live my life to the fullest. living with crohn's disease.
Don't let Crohn's control you...stay strong and live your life how you want to live it. :)
"I'm 24 yrs, and was diagnoised properly 2/3 months ago. I have always suffered with the same pains,vomitting,constant running to the bathroom,and severe weight loss since I was 12 and was always told it was my appendix which were never removed.
When I was 22 Aug 2008 when I was 22 I was admitted into hospital was a large 'golf ball' size lump on my right side and cronic pain. I was told it was that my bowels were inflamed. Diagnoises then was crohn's/colitis they weren't 100% sure which one.
I was in remission until dec 2009 when I went back to my doc and he refered me to a specialist.March 2010 I was told after alot of test ( colonoscopy's endoscopy's xrays, CT scan's) that I had a strickture in my large bowel, an obstruction that would have to come out and that could have been prevented if I had of been given the right med's when I was addmitted to hospital in 2008.
June 2010 I had half my bowel removed but at this time I was able to have a resection and didn't need a colostomy.I was put on asacolon 800mg daily. I never thought I would have to go through surgery this quickly. At my 6 week check up in July 2010, I was finally told it was 100% crohn's as per the histology on the strickture.Hoping after having surgery I would be pain free and in remission for 5 yrs. But this was not to be.
I was told last week that the crohn's was agrevated during surgery ( didn't know that was possible) and that I was to take med's every day entocort 3mg and pentasa 1mg granules.
If the med's don't control the imflammation I am looking at another operation within the next year. But I have to be possitive and live with hope that the medication is enough to control my crohn's.
You will get it under control...just a matter of finding the right solution.
"I am 70 years old. Have been in remission for about 40 years. In the beginning it was the done thing to operate and remove the offending bowel - and then anastomose the healthy parts together. It does come back. I have had seven resections.
Today the surgeons are not in such a hurry to operate, and often the answer is to have a hospital stay with a drip, and give the bowel a chance to rest. (and the patient!) I am healthier today than many of my friends with various ailments, and eat with much pleasure.
Once (Postoperatively) weighed 38 kilos, and did not absorb any food. The greatest day of my life was when I reached 40 kilos! I am very spiritual now, have done many courses to control my thinking, and all of it has helped a great deal. Shirley - my e-mail address is : shirlmic @ mweb.co.za
That has worked for many people...good for you!
"Ive had crhones for about 8 years now,have two son,s and for me life right now is not easy.Docters did,nt know what i had at first but after tast and scans,stool samples the found it quite quickley comperd to what i have heard.
Right now iam 29 year old woman who weighs about 6 and a half stone,for me thats upsetting because i used to weigh 8 stone.I Been on everythink you can think of such as prednisolone,infliximab,pantsa,azathioprine,asacol and thay dont seem to work the way they should and within 6 mounts iam back in bed or running to the toilet.Iam might go into hospital come the end of the week,you would think that iam scard but i just want the pain to go away,
I have no energy am sleepy all the time, my joints ake my face looks real unwell cant eat but iam really hungry but life gose on iam trying to be so strong for my boys but i just want to cry.even writing this now i have lump in my throat.BLESSING.
Things will get better for you...just keep fighting and staying strong for your sons. You can do it.
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