My Crohns Story

[mommy1st]

Hi my name is Andrea and I just stumbled across this forum today, I guess because I was having a bad day and was looking for a way to vent. So here it goes I was diagnosed with Crohns disease when I was 10 years old a whole 19 years ago, My first surgery was when I was sixteen and had a bladder fistula and had to have major repair, my second surgery came when I was turning 21 what a great birthday present, then my 3rd sugery came only two years later shortly after turning 23 I have tried so many different medications that work for a little while but then just stop I had serum sickness from Remicade, actually the only time I have ever have ever felt "normal" was when I was pregnant I felt like a million bucks and was taking no medication at that time. Last year I started with a pretty severe flare again and had to make the decision between Humira or surgery again I wasn't ready for surgery so I have been on Humira since then My kids are too little for me to have major surgery at this time, but it seems as if the Humira isn't helping as much as it first was. So that's my story I guess the short version but I guess my biggest problem and reason for the surgeries is because I have had Crohns for so long that I am really used to living with it as awful as that sounds but I let it go until I need to be hospitalized . thanks for reading

 

[My Butt Hurts]

Hi, lots of moms on here so you fit right in. Welcome! How old are your little ones?
I'm finding Humira to be working not so well anymore after 4 great months.
It sounds like a bad idea to just wait until you are in need of a hospital. It sucks trying to find something that works, but there are other things to try. This forum is a great tool for research of REAL opinions of medications. Everyone reacts to them differently, but it's good just to get ideas.
Good luck and welcome!

 

[mommy1st]

Thanks for the welcome My wonderful little boys are 1 and a half and 3 and a half, they are my life My oldest was worried about me getting shots all the time but he told me he would hold my hand if I needed him, as for Medications I feel as if I have tried everything, lets see Pentasa , 6 mp, remicade, imuran, humira prednisone just to name a few but I am always open for suggestions like what are people now trying once the humira stops helping currently I am on Humira and 200 MG daily of Imuran thanks

 

[Promise77]

I can relate

I can relate to most everything you said other than I have not had to have any surgeries....I have just been living with a fistula for 5 years (stubborness).

I am completely fine while I am pregnant too...my dr told me to just stay pregnant! I believe he was joking! I had wrote in a post today about my doctor suggesting taking birth control to help ---the idea being that it could fool your body into thinking it was pregnant and therefore send you into remission. Is this something you have considered??? Are you already on birth control?

I too have just gotten used to living with it. I have my own little home remedies for things and occasional have to take a pain pill to just dull the pain for a while. I use aloe vera juice, and collodial silver (not the stuff that turns you blue...at least I havent turned blue yet). The aloe juice I mix with orange juice or apple juice to make it not taste so bad (it tastes kind of like clove to me).

Anyway...I hope you start feeling better soon!

 

[mommy1st]

I am currently not on birth control pills actually my Crohns was worse while taking them but maybe if you took the kind where you only get your period four times a year would work because I feel absolutely awful everytime I get my period. I can't even lay down to sleep. I sleep in a recliner because I have so much pressure and pain in my abdomen and I don't mean cramps I would love to have cramps.