My first post, questions about the 'good times' with Crohns

[Jon3S]

Without getting into my whole story, I was officially diagnosed with Crohns mid March, though I've been dealing with the symptoms for 3 years now.

My first question is, what exactly is remission? What I mean is, does that mean you have no pain at all? Only sometimes? What about discomfort? Does that ever go away? (More than 1 question I know lol)

Another question I have is how many people are completely off Rx and doing fine?

I've been a lurker on a couple different forums regarding Crohns since being diagnosed but its kinda depressing, so I never stayed much long. But now Im the one feeling depressed, wondering what people mean when I read them saying 'it gets better.' I'd like to know exactly what that statement means b/c Im getting tired of this life with Crohns. Any help is much appreciated.

 

[Rebecca85]

I am in remission, and have no real symptoms at all day to day. I bloat easily, and have wind, but that is a small thing!

I do get loose stools when I eat certain things (like too many veggies, cos of the fibre) but that only lasts for the morning then I'm OK again. I occasionally get pains after eating, again, not for long, I take a painkiller and by the time that's worn off I'm OK again.

It did take me a little while to get this far- I started azathioprine in Aug/Sep 2010 and it took till around Christmas to kick in properly. At that point my pain stopped but I still had frequent discomfort. That has got less and less and now I can't really remember the last time I had it!

 

[Nyx]

I'm in remission and not on any meds right now, but I also have a permanent stoma (which I'd take any day over the life I had pre-stoma). I have no symptoms of Crohn's beyond a bit of eye trouble right now, and it's great (minus the eye trouble....lol)

 

[KWalker]

I have no symptoms and I'm on no meds so I thought I was in remission but after my last scope it shows my crohns is still active. I've been off meds since 2010 and doing well physically without it but it just goes to show that although you may feel fine, your body might suggest differently.

 

[mizgarnet]

I am in remission without meds. Life is really good. I take yoga classes and I am going to run a 5k this fall. Now to motivate myself to train! There is pain and the dreaded d when I eat certain things. Processed foods are a killer for me. This passes quickly and the pain is not severe. There is a life to be lived with Crohn's. You have to learn your way. For me it boiled down to diet, exercise, and stress relief. I am learning to play again and how to relax. I raised 3 wonderful children as a Crohnie. It is not a fast process. Life is still good just different!

 

[Jon3S]

For those not using any meds and are fine, can you tell me what kind of diet you are on? What kind of major changes did you have to make? How long did it take you to reach that state? Since I've just recently been diagnosed but been going thru the symptoms for 3 yrs, Ive cut off so many things out of fear and pain and Im just nervous trying different things. No insurance at the moment, my main treatment is just smoking pot. I do have some prednisone left that I take here and there when I feel it gets real bad. But my plans have always been to not depend on any meds, only diet and natural supplements. This is the first time really talking to fellow CD sufferers so Im interested on how others got to that point.

 

[Jon3S]

Nyx, what is a permanent stoma?

 

[Nyx]

A stoma is when they disconnect your colon (or small intestine depending on if you have an ileostomy or a colostomy) and put the end of your intestine out of your stomach so you can poop. There's a bag that attaches so you can empty etc. So you poop out your stoma instead of your anus. My anus is just for decoration now....lol I'm not sure I described it very well, but that's what it is. I have a bummy on my tummy...lol That always makes me laugh...

So, during my surgery they took out all the diseased parts of my colon (1/3 to be exact) and formed the stoma. That's why I'm currently in remission and med free. I still have a scope every year to make sure things are still good and if the disease rears its ugly head again I'll be back on meds. It's been 2 1/2 years so far, and am hoping for a lot more

 

[Jon3S]

Wow. I cant imagine that was an easy decision to make. Must of been pretty bad. I remember my lil stay at the hospital after having an obstruction and the Dr mentioned surgery, I said no way.

 

[Nyx]

Fortunately it wasn't a decision I had to make. I ruptured my sigmoid colon and distended my bowel due to severe constipation. My surgery was an emergency procedure. I woke up with a bag. Not sure I would have made the same decision had it been mine to make..but now that I have the bag I wonder why I didn't have the surgery sooner. It sounds much scarier than it actually is. It gave me my life back in a big way.

 

[mizgarnet]

JON3S- My diet consists of veggies, fruits, and meat/fish/poultry/beans. Nuts are a go to snack (never peanuts). I eat rice, oatmeal, and potatos occassionally. I eat dairy rarely. I do not eat any wheat. It has taken me several years to get where I am now. I had to combine diet, exercise, supplements, and spiritual healing to reach this energetic state. I take Boswellia, B-Complex, Probiotics, and some others as needed. PM me if you would like additional information.

Wendy