Recently diagnosed been living with symptoms for a year

[udontknow87]

hey yall i've finally been diagnosed with crohns after a colonoscopy and egd and bloodwoork galore. but even knowing there is a name im still not finding comfort. im constantly exhausted and im a single mother to two children who i feel so guilty because the pain keeps me from doing the same things i used to. ive lost 126 lbs in the last yr because i cannot keep food in my stomache and im just feeling ultimately discouraged. its a struggle to work and contend with kids when all i want to do is lay down and will the pain away! i havent gotten to the medication stage as im waiting on blood results but ive gotten a sense of hopeless that goes against my usual i can take on the world self. im in a funk and would like to hear how others cope with this. it seems like everyone i mention it to are just unaware of what exactly im going thru and dont understand what the big deal is like maybe im just a big cry baby or something. im so very embarassed by this disease i cant eat in public and i limit what i eat at work. my job is stressful so i doubt ill ever be without a flare any ideas or suggestions on how you got thru the initial shock and dealt with it? i feel like im failing as a mother because i just dont have it in me to do what i used to and im hoping it gets better but when......

 

[udontknow87]

any comments would b appreciated

 

[Clash]

So sorry to hear you are having a difficult time. Have they mentioned which med you will be starting or did they prescribe you prednisone to get your flare under control. I hope they sort everything out for you soon and you are able to find some relief. You could consider going on a liquid diet of supplemental drinks like boost or ensure and see if that eases your pain any.

 

[Cross-stitch gal]

I too hope that things will be taken care of for you soon. Will admit that while I was dealing with the pain I was pretty stubborn and worked through it rather than taking some time off. Was even sent home once for it. So, I know where you're going with the pain an frusteration. Take care...

 

[MoRymes]

Hi there,

I don't have kids, but I do understand the frustration of not being able to do the things you used to do. Also, I absolutely empathize with your frustrations about work -- this is my biggest frustration right now as well.

I was also recently diagnosed and recently put on a couple medicines: Asacol and Entocort. I've found some relief from taking these. I still get the symptoms returning, but not as often, not as strong, and they usually don't last as long, and I am able to return to some degree of normalcy with them. Currently, I'm really working on identifying a lifestyle where I can manage my symptoms without the need for meds (at least steroids). I've just purchased "Breaking The Vicious Cycle," which talks about the Specific Carbohydrate Diet, and am considering beginning that very soon.

Bottom line: There are medicines that will help you feel better. To maintain in the long-term, I think it will require adopting a lifestyle that works for you, and everyone is different. In my mind, this interim while I'm on the medication is my opportunity to develop this lifestyle.

There is lots of good info on this forum about many lifestyle mods that people have found helpful, with everything from diet & supplements to psychological/cognitive therapies. I'd recommend looking around and beginning to develop a plan that will work for you. It will take some trial and error, but you will get there.

All the best,

Mo