Living with crohns for 19 years

Crohn's Disease Forum

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Joined
Aug 20, 2012
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hi all, i have had crohns for a very long time and still have no idea on how to control the situation, i have had a operation back in the 90's called a right hemicolectomy and that is removal of a section of the large bowl,i went alright after that for about ten years on and off salfazaline,creeping into my thirtys it started to play up quite a bit so i wld be on and of prednislone,what a wondefull drug that is!!fell pregnant with my son and had no problems with crohns during the pregnancy,4 months after he was born i was taken into hospital with cronic pain,stayed in for 5 days was put back on prednislone and started imuran (immune suppresent) stayed on that for a year, but unfortuanatly i seam to always get bloated every few weeks, so i gave the drug up...a couple of years later i was pregnant again and had a wonderful pregnancy with no problems i then breastfeed for 18 months and still no crohns problems,6 months after finishing breast feeding i was taken into hospital with the most pain i had ever experianced (worse than birth)i suffered for a month prior to being admitted,my last few days were spent on the floor with so much pain and vomiting, morfine injections, it was like a knife every 2 minutes ripping through ur body,so spent another 5 days in hospital back on predislone and imuran...that was 4 months ago and i have decided to stop the imuran again as all i feel is boated all the timeand very week and tired, just today i went to an acupurturist to seek their help, so hopefully they can help in some way..i get b12 injections every 2 months, i dont eat red meat,corn,spicy foods, cabbage,coliflower,dairy,pasta,minimize coffee,drink lots of water,peppermint tea,rice and salads...anyhow thats my story i hope maybee i can help some people with some things i learnt over the years..
 
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Hi and welcome!!

There are lots of helpful and supportive people here so you will fit right in! I hope you find some information that will help you as well. Just about every variation of Crohnnie has their story and treatment choices told on this wonderful forum.
 
Hi Sandy and welcome to the community :)

If you're going off the Imuran, what's next?

Have you ever tried enteral nutrition? Have you heard of low dose naltrexone?

It's great having you here!
 
I agree with David whats next? with such an up and down roller coaster you are creating more scarring that is doing harm to your body. If the 6MP is causing you problems look into something else there are options, you don't have to be in pain or not eat something for fearing it will upset your stomach, there are options. Good luck and stick around the forum is great!
 
hi fellas,david i have never heard of those two but i shall have a read up on them, i also havnt really thought about scar tissue and what i am doing to own my body by self medicating or (non self medicating ) my self..i do have 8.6cm of active crohns at the moment and i also found out today that i have stones in either in my liver or gaul bladder, having a c.t. scan tommorow to find out, now u have me thinking that i should remain on the imuran and obviously my bloating and feeling unwell is caused by the stone, so once i have my self sorted i will go back on the imuran and see how that makes me feel, im not taking any other vitams to help, thanks guys for your help it really makes me feel good that other people understand crohns the way i do as i dont know anyone who is it.....cheers
 

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