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Diagnosed at 20

Ever since high school I've when I felt like I had to go i had to go right then and felt awful. It affected me having school. Not only was I changing school but I was having this symptom (I didn't really think anything to it). Before I even started there was a situation that caused me to be teased. After I graduated I got married to my high school sweetheart. Not long after we were married I realized that my symptoms were getting worse and were a big problem. My then new MIL brought me with my husband to the hospital. That started a almost 3 year time of test. Not long after I had my daughter we got insurance.where i was able to go to a better hospital and get a real diagnosis. I had Crohn's!! After taking asacol and predinose I got a little better . it wasn't long that stopped working. They then tried Humira which didn't work. Next they tried remicade. Finally I was in remission. I was on it for 2 years before I got pregnant. I got to stay on it till week 30. The obgyn was very scared for the health of me and baby. I was monitored every other week until week 25 then every week. At week 32 my son's heart rate dropped for about 5 mins. They put me in the hospital on strict bed rest. At week 34 I had my baby. Afterwards they started my remicade right after I got out of c-section. It didn't take long before it failed. I'm not on tysabri. I've been on for a almost 2 years. I fear that it is failing. I'm always running fever. My diahrrea is getting worse. Last night I experienced the worst night of all my Crohn's time. We went out for my 26th birthday with friends. We went and ate and I was feeling great. 2 hours later I started feeling bad. I didn't want to end the night so I kept on going. My husband realized that I was running fever. Still I said I was OK. Next thing I knew I needed to go to the bathroom. I went to find it and didn't quite make it. I was so humiliated. I'm not a baby why was this happening. My husband brought me back to the truck. I then called my friend and told her I needed to go home. She knew I didn't feel good so she said she was coming and we would go. I was so scared I was going to go through the same thing I did in high school. That no one wanted to be my friend anymore or want to be around me on the way home. When she got there I ending up telling her what had happened. To my surprise she was very supportive. The whole ride home she sat by me and was trying to cheer me up.even though I know she doesn't hate me or embarrassed to be around me I'm so scared to go anywhere. I just want to stay in my house and never leave in fear of it happening again. My husband doesn't want me to tear my self down about it. I just don't know if I can get over this. I feel like I'm the only one that this has happened to. Has this happened to anyone else? Is there something I can do for it not to happen again. Omdium doesn't help at all. Please tell me I'm not alone!!!:(
 
You are so not alone with this problem.

I think it is always a shock when it happens though.:eek2:

Sorry you have had this happen to you. I don't think there is any one thing you can do to prevent it but I always make sure I know where the toilet is as soon as I go any where, and don't put off going.

Can be a sign things aren't under control though so maybe you need to talk to Dr about meds.

Good Luck.
 

DJW

Forum Monitor
Hi and welcome.

I'm sorry you're dealing with this issue. You certainly not alone. We've been through it. I've been through it.

Sending you my support.
 
I go in Thursday for a colonoscopy. I was in the hospital a month ago they did a flex sig and said everything was normal. I hate when doctors go by text books and blow the patient off. They've been talking more and more about surgery. That really scares me having never had one for this before.
 

DJW

Forum Monitor
You may want to consider a second opinion. Personally I'd want a full workup; upper and lower GI tract. Has the doctor discussed meds? Have you been keeping a food and symptom journal to identify problem foods. I believe surgery should be a last resort. It isn't a cure.
 
I've gone and gotten a second option before from one of the top Dr's other than mine that specializes in Crohn's. He said surgery. I'm gonna see if they will change me to a new medicine that just came out on the market. That is my last option when it comes to medicine. Ihavent done a food journal but I know what food make it worse than others. Right now I can't keep anything down or keep the fever gone. :(
 

DJW

Forum Monitor
Typically it is because there is no guarantee of remission lasting very long. Ultimately you need to work through it with the doctors. They're the experts.
 
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