Community Forum

Hello there,

I must say I'm a bit nervous and hoping this helps me through these tough times. I was diagnosed almost 9 years ago and I'm only 25. It has been one heck of a rollercoaster and I'm finding it rather difficult to cope with nowadays. i don't feel normal. It hurts to walk or to function. I'm so tired physically and emotionally. Some days I can't get out of bed, or I have to army crawl to the bathroom. I don't go out mostly out of fear. I hate having to plan out where all the bathrooms are. This is no way to live! I have a support system but they don't have the disease so it makes it harder to deal with. I hate being so negative but at this point I can't help it. I feel like I don't have it in me. So here I am reaching out to my community, hoping that I can get the support system I need.

I've read a few posts and stories and though it is mostly horrible, I can finally relate to someone! I keep finding myself further and further down on this awesome ride. I just went to the hospital this week and they found a large obstruction, a massive amount of inflammation, and my intestinal walls are dangerously thick. Here's the kicker though; they told me they weren't going to do anything and referred me to my GI. Hello?! Do something or explain to me why you won't!

I've always felt so alone and lost, but right now even more so and I've never been more terrified in my life. I have been lucky enough to avoid the surgery, but this time I don't think I will.

Sorry I rambled a bit there, but I do have to say it felt great to get this off my chest!

 Reply posted for BeautyInStone.

I'm going to give my SCD push like MJPPOLL did!  It is a miracle diet and needs to be shared for those who are not aware of it.

I just posted this for the "sick and Tired' topic and will repeat it here and everywhere to try to give some hope to everyone who have not been told about this diet.  SCD DOES WORK!!  It is extreme and care must be taken when starting it and patience must be had but it is oh so worth it!!!

Have you ever looked into and tried any diet solutions?  I have UC and meds DO NOT work for me - never have!  Yes, steroids will always reduce inflammation but can not be used continually forever.  I was desperate for a solution earlier this year and accidentally stumbled across the Specific Carbohydrate Diet.  It IS working!!  I feel so good and even though healing is a long process I am continually improving.  Did not wake last night for any BMs and only had 2 so far today (it's 7pm EST!) and they had no bad stuff in them at all.   Please look at these info sites.  The diet has been around and working for so many people with Crohns and colitis for 50 years!!  I am upset that it took me so long to find out about it and more upset that my doctor did not lead me to it.  



Kris.

 Reply posted for BeautyInStone.

Hi Beauty!  I was diagnosed over 20 years ago.  I just wanted to say that yes this is a nasty disease that outsiders dont always understand.  But I also wanted to give you some positive things to think about too.  There are folks out there that will never understand, but try very hard to help---it just takes some time to find them (I know I have a few in my life including my husband).  I also dont want the forums to make you further discouraged---please remember that those of us doing really well often are not on the forums because we are out doing things.  The forums are often filled with folks having the rough times.  I know I visit more when I flare or are having a bad day.

It sounds like you are in full flare up and your GI should be working on meds for you to make your quality of life better and maintenance meds to make the post flare livable too.  Be vocal and advocate for yourself and get the help.....if you can get to remission, you can have a life...I've been there and support you.

 Reply posted for BeautyInStone.

I understand completely. It is such a horrible disease, not just the pain but it can be humiliating. Anyway it does help to just talk to people that go through it everyday. You said you have had this for 9 years. Well I would really start researching SCD Diet. If you read some of the posts on here you will see it does work if you stick to it and start slow. Also go to www.Crohnsdad.com. His daughter has Crohns and he has helped me through out my ordeal. I was diagnosed last March. Once you eat correctly and start to heal you actually start leading a normal life. I can go a whole day now without thinking constantly of my disease.
In the beginning I kept thinking how do I eat just meat, veggies and homemade yogurt. But when you google and learn some of the recipes you can start to add things and after healing you can make breads, muffins, cakes but with nut flours. You can make homemade ice cream, smoothies etc. It takes time but once you get a routine it is just like anything else it becomes second nature. Keep reading and Good Luck.
MJP