Why im here

[captscott76]

why im here

i was diagnosed with crohns when i was 15 years old the er doc thought i had the flu sent me home and the next day i had 103 fever and couldnt move back to the er and emergency surgery i had ruptured took over a year to repair me and get me back up...long story short 9 operations later im 35 and in the midst of the worst flair of my life it has been going since december and wont be controlled im in constant pain and average 10 to 12 bowel movements a day...er docs think im a junkie and are just beginning to realise im a crohns patient...after i spent 2 months in the hospital and all most died of a arrythmia due to low potassium...i have maxed out pentasa and mercaptopurine treatments and i have destroyed my hips from all the prednisone so now im begging for remicade or something

 

[David]

Wow, I'm so sorry to hear you're having so much trouble. I'm glad you found your way here, however. Do you have someone that can be an advocate for you? Do you have a dedicated GI? If so, what is their opinion on getting you on a biological such a Remicade?

I hope things start looking up for you soon!

*hugs*

 

[xJillx]

Hi and welcome! I am so sorry to hear about this never ending flare. I think David is right, and it is time to step up your treatment. Pentasa is used to treat mild cases, and obviously, it is not doing the trick for you anymore. Have you discussed other treatment options with your GI?

I hope you start to feel better soon. Hang in there!

 

[captscott76]

angry young man with crohns

i have a GI but unfortunatley in NC im limited in seeing him as i dont have insurence and my SSI has not been totally approved yet...apearently its easier to let us die then treat us early and well

i no longer have a job and insurence because i have AVN in my right hip liberty mutual refuses to cover me for that as its a side effect of the drugs I require a hip replacement but it has been shelfed due to my age as the hip replacement lasts 10 years and at most you can have 3 so i may run out of hips before i run out of life..thanks prednisone!

im hoping the new clinic they have put me in will be better and the physicians there will be helpful we shall see...i was told theres no moneys for remicade thts why they keep upping the 6np and bentyl doses

 

[ColinPower]

Sorry to hear about your horrible problems. I had a 4 day flare, can't even begin to imagine having one for that many months. I truly feel for you and know you must be reaching the end of your rope! I am wishing you well.

I have a question: With 10 bowel movements a day, you must be taking in some kind of non-liquid meals... I'm wondering what you are eating and if you are carefully controlling what goes in.

Many people (not necessarily you) oddly don't make the connection between their diet and Crohn's. I've read some posts on here where the people are eating red meat, sausage, pizza, wheat, milk, cheese, etc. and then talk about how bad their symptoms are and a Crohn's patient simply should not eat those things (even considering all things being different between C patients.) Hope you are considering this as a big part of how your colon health progresses.

For me, making huge changes in diet helped immensely and when I veer off of that course, I'm right back where I started.

I hope you find peace and most of all, Health!

 

[captscott76]

fortunately im on a liquid diet and the only food items i eat are applesauce and rice and broths my big friggen treat is gatoraid at 50-50with water...