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I am a survivor

Hello,
I am not new to the Crohn's seen. I was diagonsed at age 19 I am now 23. I went to bed one night and woke up with Crohn's. I had also dropped 20pounds in about a month. It is hard to believe thats how it happened. One night I went to bed with a really bad stomach pains. I didn't think much of it just maybe thought the stomach flu, thought it would go away in the morning. I finally fell asleep I'm not even sure how I did. The next morning I woke up it was even worse than the night before. My mom took me in to the doctor because we thought it might be my appendix. Doctor started off with a blood draw to see where my blood count was at. It was normal, so he sent me home and told me to come back later, if it got worse. I couldn't even move, talk, sit or do much of anything, the pain was soo bad. I went back for more blood tests for it to show nothing. He sent me back home with some pain meds, and told me to make an appointment for a CAT scan. Went in for the CAT scan the next day which only told me that my intestines were inflammed. They then told me I needed more tests to find out what that meant. After colonscopy, barum tests, and whatever else they then told me I had Crohn's. I was referred to a gastro, he tried me on asacol and sulfasalazine which did not work. I went back very upset and tired of living in pain everyday for him to tell me that my Crohn's wasn't bad enough to try any other drugs and that I needed to live with the pain that was part of having crohns. Those were his extact words. I was so upset I left and never went back to him ever again. I was so down that I didn't seek new insurance after my old one was done. I went without treatment for over 2 yrs. I was taking 2 tylenol and 3 ibuprofen a day just to get thru work because I couldn't take anything else for pain. I could not eat much without it hurting. No matter what I ate I did not gain weight either. After getting off work one day it started hurting in my back. I knew what my crohn's felt like and where it was. Since it wasn't hurting in the normal spot I went a head and went to the ER, thinking it was my appendix. They ended up keeping me, doing a colonscopy, there was so much scar tissue that they couldn't get the scope up pass a certain point. It also showed I had a fistula. They put me on bowel rest and I had a pic line put in and they feed me with what they called milk in a bag. IT was horriable! I still didn't have insurance. My new gastro then told me that I needed to have surgery or I was going to die and I needed to get some type of insurance. That scared the crap out of me. Well I was released and they tried me on Remicade which on the 3rd dose I had a bad reaction so they discontinued. In the state of washington pretty much the only way that you can get insurance through the state was to be a lazy butt and not work. So i had to quit my job to obtain insurance because no other insurance would cover me cuz i was diagonsed before hand. I had surgery in Aug of 2009, leaving me with a very nice scar. Had a scare right after I had surgery thought the crohns was bad but I just had caught C-diff from the hospital (nasty stuff). I have gained weight and feeling better except of some symptoms of IBS, so they say. I am a little scared to see if it has come back. I worry about it everyday which I am sure Im not the only one!
 
Hi Juicy24
too bad they didnt tell you when they first diagnosed you that you cant take advil or ibuprofen.
Also, I was taking up to 4 extra strength tylenol a day (at first) and I was also told not to because tylenol can damage your liver - esp. in those amounts.)
Sounds like you are really sensitive to medications.

Welcome to the forum! There are a lot of really great people here with a lot of knowledge and experience!
 

Crohn's 35

Inactive Account
Welcome to the forum Juicy. I too had a bad reaction to remicade on the 3rd dose, scared the crap out of me. I tried Humira but eventually it stopped working. I too have a hard time with meds, I either react to them or they dont work. I agree with taking Pred, it is only a quick fix and long term it is nasty. Thank God you were able to get another Gi and insurance, NOT all Gi's are created equal and this disease is very hard to catch. I was told I had a spastic colon, antispasmotics help but not alot. :hang: hope you are feeling better.
 
I'm glad to hear that you've put on some weight. I am really sensitive to medicines too. I think being sensitive goes along with having IBD. I hear you about the worrying. I often wish that I could be "normal" and healthy and not have all of the constant worries about my health.
 

xJillx

Your Story Forum Monitor
Hi Juicy and welcome! You have been through so much! And our country's insurance doesn't really make things easier, does it? But I am glad you eventually got insurance and are now being treated and feel a bit better. Stick with your medicine, even if you start feeling 100%. And I hope you do get to feel 100% soon!
 
oh dear... prednisone! I remember the shock on my friends' face when they saw how much my face had blown up from the steroids! Ah!
 
Wecome Juicy! Sounds like you've been through alot-so glad to have you here! There are some meds that irritate my colon enough for me to not be sure if it's a flare,too. Drugs like Advil and Meloxicam are NSAIDS which play havoc with most Crohnnies. My doc prescribes Prevacid 30mg to take along with it to control the side effects. Another alternative for me is Arthritis Strength Tylenol, it has 650mg each pill and lasts 8 hours.
 
thanks guys! I am glad i found this because I don't really have anyone to talk to. I have other friends that have crohn's but they are just recently diagonsed. I am very senstive to meds. I also developed Psoriasis but the humira is taking care of that thank god! Ya my first GI doc was a jackas* sorry for the language but he never told me not to take ibuprofen. I think he might have actually said to take it. I can't remember!
 

ameslouise

Moderator
Hi Juicy and welcome!

Glad the Humira seems to be helping. Hang in there - you have been thru so much already!

You have come to the right place for support and advice. We have been thru it all and there's lots of advice on here.

- Amy
 

vonfunk

Bourbon Bandito
Location
Toronto,
A lot of doctors forget to mention NSAIDs, my first GI was fantastic, but with all of the information the give it's an easy thing to miss. I was eating them like skittles during the first month because of back pain.
 
Pen and Juicy.........when you say you had a bad reaction on your 3rd Remi dose, what exactly was your reaction?
As I got up to about 60 mg a min all the sudden I felt like I couldn't beathe and felt funny. It was more scary than anything but then they came right to me stop the med and then gave me a bunch of benedrill and gave me oxygen to stop the reaction. That is why you have to go to a infusion center to have it done. They tried it one more time had another reaction not as bad so then they stopped. Just because it happened to me and other people doesn't mean that it will happen to you or anyone else. I am very senstive to medication as some other people arn't. There is no way to tell at first if you will even have a reaction. Most people will have a reaction on their 1st one.
 

Crohn's 35

Inactive Account
Pen and Juicy.........when you say you had a bad reaction on your 3rd Remi dose, what exactly was your reaction?
I hate telling this story because it scares people away from going on Remi but you asked and here it goes. After my 3rd infusion I was plowing snow, with my 4 wheeler and noticed my arms were sore, didnt think much of it and it got worse through the evening. It got so I couldnt move them, so I called my neighbour to help me and we have a paramedic behind us so she called him. By this time the pain in my arms were so excrutiating that I couldnt put my coat on and it was like -25c below! I couldnt get up off the stairs so the paramedic helped me get on my feet. Then they took me to the hospital and I told them I was on Remi and they said I was having a severe reaction. The gave me Demerol and went home. I got home and still couldnt take my clothes off so I got into bed and woke up in severe pain again , and I got up to get my husbands work emergency contact. The company flew him home ASAP, I dropped the phone and couldnt get out of bed to pick it up.

My husband had to take a taxi home and was calling the Gi and doctor to tell them I needed percocets to stop the pain. 2 every 4 hours, doc was not happy about that because it should be every 6 hours. MY husband had to help me get out of bed and I screamed in agony to go to the bathroom.

I had to go to family court, then the pain started in my foot!!! I needed crutches. As that was happening the pain started up to my chest and jaw! The heart is an organ so luckily my husband is mine rescue and Advanced first aid and never left my side.

That is the short version, sorry it was long but all I know is it took 2 years after that incident that I tried Humira... never wanted that to happen again. Apparently it went into the lymph nodes in my upper body and some to my foot. There ya go. End of story.:cool:
 
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