Crohns disease dx 2 yrs ago

Hi everyone,
My name is Robin and I was dx with cd about 2 yrs ago mine is a unique story and I would like to share because I know that crohns doesn't always act the same way.. I started having problems when I was about 18 it landed me in the emergency room with a quack of a doctor he wouldn't listen to what I was telling me and didn't page a Gi specialist when he should have I was in tremendous pain where it had me doubled over and screaming.. The doctor dx with an ulcer and sent me home with tagment and malox and told me not to bother him with this again.. well the pain kept coming and I noticed everytime I ate an orange or apples it would start so and the tagament and malox didn't even touch the problem and I was drinking a bottle and 1/2 a day.. needless to say I thought it was all in my head and that I was just being a fool I did however quit eating fruit and that seemed to help some but not enough and for years I never talked to a doctor again for I was afraid that they would say the same thing. I was stressed felt alone and felt like i couldn't trust another doctor so i avoided them as much as possible. Then 2 yrs ago which at that time I was 37 and ended up in the er again because I felt tremendous pain and was literally screaming and felt like i was dying. I was so scared they admitted me and did testing xrays ct scans everyday as My doctor(been seeing him ever since) told me my colon was collapsing and put me on crohns medication right away I had nothing left no minerals no vitamins and no potassium or sodium and about a week later my colon perforated but thank god i was still in the hospital and the doctor was a surgeron and new what he was talking about. he performed the surgery and I had an ileostomy done i weighed 101lbs when I went in when i came out of the hospital I was less than 70lbs.. My surgeon referred me to a Gi and we did a colonoscopy from the seeing it he could not tell that I had crohns but did take 18 biopsies all showed positive. He put me on Humira and it has helped tremendously as before surgery i would have bouts everyday. I would have the dirreah and constipation at the same time. and still do when i have my flareups but they are now about 1 to 2x a month. And now I can eat oranges and raw vegetables but have to limit them.. I am also on dilaudid for the pain and the inflammation because this is the only pain reliver that is good for pain and also to stop inflammation and is not as addictive like other pain pills and the dose that I take is 2mg every 4 hours and is stronger than morphine and yes I can still work while being on the meds... I also had the reversal of the ileostomy and it worked they told me there is only a 10 percent chance of it taking.. Well there is my story.. I would love to hear from everyone and if you have more questions please ask and I will answer to the best of my knowledge..
Thanks for listening!!

Hi Robin, thank you for sharing your story and welcome to the forum . You've had a long and bumpy road to get to where you are now, I'm sorry that you met some doctors along the way that were insensitive and didn't treat you with respect, thank goodness you've met a doctor now who looks after you well . I'm so glad that things are working out better for you now and that the reversal was a success and to be able to eat raw veg again.......Oh I wish, it's the simple things in life that would make me happy now.

My story is much shorter than yours, last Nov I got a sore tummy? Thought I had pulled a muscle cos I was exercising too hard, I was eating a really healthy diet and getting my type 1 diabetes sorted out at last. But my tummy pain got too much to bear and I went to hospital where after a 2 week stay was diagnosed with crohns . Life became a bit overwhelming then and I was very scared for what the future would hold but 6 months on I feel better about it,I guess just from learning about this disease and as you rightly said everyone experience of crohns is different and this I need to remind myself of this so as not to be disheartened if things don't always work out. Thank you for you uplifting story,I know it was tough for you but your story has encouraged me that life will be okay, thank you.

LYNDA,
I am so glad that my story has helped you in some way.. I believe that one day we will be able to fight this disease and find a cure and I have to admit that it made me closer to my family now more than ever it has been before. Its funny because our house was flooded 3 months after the collapse and destroyed our house all mom and I could say to each other well at least we have our lives,, It somehow changed my way of thinking and made me realize that things that would used to stress me out doesn't bother me anymore because nothing is more important in this world then my family..
I know what you are going through because before the surgery I was always depressed but now I try and look at the more positive things that has happen in my life and the positive of a future.. I am sorry you had to go through some disheartening things in your life but try and stay positive and do not let anyone or anything stress you out because in reality nothing is really that important..
I hope to hear from you again until then take care

Hello again,

I think I'm doing okay head-wise, I went to a pain management clinic last week, didn't really know what to expect but soon realized it was as much about emotions and attitude as it was pain, the doc and I had a chat and decided that my best pathway right now is rheumatology and also that my head is fine. I do think that when we become ill with anything chronic that it does change the way we think about things, I used to worry about having nothing to worry about :ybatty: but now, well I no longer worry about things that are out of my control, there's no point. I keep smiling cos I know in my heart that I could be much worse and it's that thought that makes me strong

I would be happy to have a chat with you if you wanted to PM me Thanks for the encouraging words, take care. :ghug:

Sorry I couldn't reply fast enough been busy working.. I am glad that you got that straightened out yes it is sometimes our emotions too that makes us feel sick.. I just wish that sometimes people exspecially my coworkers would be a little more understanding about it.. Its funny you think they would be since we work in the medical field, I had one coworker basically tell me that I was faking my symptoms or that it was something else and I should go get a second opinion because she has friends with crohns and they don't have as much problems as I do.. All I can do is just let them talk as I know in my heart that I am doing everything I possible can,,

Heavens above!!! People never cease to surprise me any more at how insensitive they can be. Especially if they work in medicine! It makes me so angry! lol I think you might have guessed that I reckon it's hard enough coping with this disease without having to prove yourself all the time at work, I'm not working at the minute, but when I was I always felt judged. My dad even asked me if I "got Crohns cos I drank the wine he bought me" he has been calling me an alcoholic for years even though he is the one with the problem but won't admit it! Oh he makes me mad.

Take care and keep in touch.