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I was diagnosed with Crohn's almost two years ago, after having suffered with it for a year.  I have lost a total of 156 lbs.  I am not underweight (thankfully I was morbidly obese when it hit me) but am worried that I will become so (only have abt 12 lbs before I am at the bottom of my ideal weight span.  Tired of people telling me I'm too thin.  I've started telling them if I could eat I would and would still be 273 lbs if it were up to me.

I have been in a sort of flare up since January.  No diarrhea, mostly abdominal bloating/pain from large pockets of gas/air in what feels like my large intestine after I eat (doesn't matter what I eat, am on a gluten free diet and have tried gas-x and digestive enzymes)  The pain is so intense sometimes and most nights I am in bed with it.  My kids are small (seven and four) and they always anxiously ask me "mommy how does your belly feel tonight"  and they are used to me being laid out.  I am a single parent and get so frustrated that they don't have a "real" mom.

I feel like this thing is going to kill me....or steal everything in my life from me (just started a college program to become a physical therapist assistant but what if I'm so sick I can't finish?  This thing would have stolen a GREAT income from me!) 

I am at the lowest point I've been in this past three years.  The periods that I've felt good only make times like this feel even worse.  Sometimes I think I can't stand it anymore, can't stand the thought of living the rest of my life this way.  Not that I would do it (b/c my kids need their mom, even if she's sick all the time!) but I can really see how people who suffer from chronic, painful disease turn to suicide. 

 Reply posted for jamie sckipp.

you are fed up with the disease!  Just think that you can't get any lower than this and that the only way to go is up.  You have to stay positive for your kids but you also need support.  Do you have supportive people in your life?  If you do, talk with them and reach out.  If you don't, come back to this site often and give others' advice.  It helps to help people.  You will feel better soon.  Hang in there.  

 Reply posted for rweiser.

Just remember ur not alone we all suffer... but god will carry us threw the storm be strong for ur children... some days will be harder then others. enjoy the good days...and pray for a cure...god bless

 Reply posted for alanschachter.

I will do that.  I am closely reading crohn'sboy.com and another blog site I found following someone's progress over the course of a year on SCD. 

Starting yesterday (day four on the diet) I broke out in a rash/hives on my legs/feet/arms.  Yet another bacterial die off symptom (on top of the flu-like symptoms I'd already been having) and I know that is actually a good sign that the diet is working.  Still in a lot of abdominal pain but I know that will get better--sooner rather than later I hope!!!!! 

I bought some yellow squash and pears to add to my diet.  Going to roast the squash with carrots in the oven with some olive oil and am going to make some pear sauce with cinnamon.  Going to try to go easy on the honey (I read on the one guy's blog that his gas pain was drastically reduced when he cut down the honey and cut out the grape juice) but it's had with the yogurt b/c it's so tart ha ha Maybe blending it with blueberries/strawberries will make it better....

Trying to remember everyone else's success stories when the moments come (and they are many!) where I feel like I am slowly dying and just don't know it.  Scary.  I know a positive attitude is very important though and I've got much to be thankful for.

 Reply posted for alanschachter.

Thanks everyone!  That was so encouraging about how the three kids came out of your illness so well.  My babies are so sweet, even my four year old says "mommy, how are you feeling today?" and "I hope your tummy feels better, I love you"  Thank heaven my mom lives next door and takes care of them a lot.  Bless moms!!!

I have been on SCD for four days now.  DEFINITELY felt the bacteria die off symptoms so that is encouraging.  I think I will do great on this diet because I am so used to not eating (due to being gluten free for so long...to me it's no big deal to cut out more things, I'm so used to not eating what others eat and watching every little thing that goes in my mouth ha ha)  I just started the yogurt today & have heard that really helps get things going on the diet.  I just really hope this works.  I don't have many problems other than the extreme abdominal pain/bloating.  Really hope that the answer to WHY I have that is the bad carbs I had been eating & now that I'm not eating them it will go away! 

I know everyone is different & no one can say how soon I will feel better...

I just want to reach the point where I don't deal with horrible pain every single day. 

 Reply posted for rweiser.

Hugs!

I was a single mom (they are adults now!).  My kids took care of me at times and they still have a tendency to "monitor" me.  My 22 year old son wanted to leave work the other night to check on me because I did not sound right on the phone.  My 19 yr old son spans my waist with his hands to make sure I am not losing weight.  My daughter lives in another state but she calls her brothers to make sure I am telling her the truth.  My kids have grown up to be very helpful and understanding adults.  They are very fluent in nutrition and exercise.  We talk now about "those" days.  They do not regret the times we couldn't do things and they truly appreciate the things we did do and do now.  We actually did more things as a family than a lot of their friends.  I was determined to play like crazy when I felt like it. 

Some of the things we did when I was not feeling well have become their favorite childhood memories.  We would rent a bunch of movies and pile up together on the floor to watch them.  We would have snacks (usually 75% healthy, 25% questionable) and drink out of wine glasses.  The kids loved those weekends.  Some afternoons we would crowd around the coffee table and paint.  There was usually more paint on us than the canvasses.  Sometimes they played quietly or watched TV while I napped.  I tried to make everything as special as possible.  I would mix up cookie dough and they would bake cookies and decorate them.  Yes, we had some burns (cookies and fingers).  The kids would sit beside the couch and read books to me. We made it just fine and you will too.

My house was never spotless.

Don't feel guilty.  Just ask my trio- there is something special about a mom that can let a poot that will clear the room! :)

Breezy

 Reply posted for EZ.

I too have been feeling so incredibly discouraged, frustrated, sad and angry with my CD...why does it have to affect every single aspect of my life? I want my quality of life back!

 Reply posted for rweiser.

I would look into the disability office at your college campus right away.  There are so many benefits to doing this.  You get notes, you get to register first, you get to take tests somewhere else other than the class.  Just all kinds of things like that.  I agree with the diet issue of the other posts but my daughter has UC so I'm not much help with CD.  I'd also try to find a really good doc like a specialist. 

 Reply posted for rweiser.

Alan is right. Scd has made a real difference to my health for four years. It is difficult at the start especially when you feel exhausted and ill but it is so much worth the effort. At the beginning I made lots of thick soup that just needed to be warmed up when I was hungry.
Now my weight is stable, my energy is back, foggy brain has cleared and I can control any minor flare that threatens me by being extra strict about what I eat. At first I just took the diet one day at a time, then one week, one month, expecting that I wouldn't be able to keep going as I had never stuck to a slimming diet for more than three days!
I think the two most important things are avoiding the bad sugars/carbs and eating plenty of the right fats (low omega 6, low PUFA). I have cut out all refined oils and only use butter, coconut oil, animal fats and cold-pressed olive oil. If you reduce carbs you do need plenty of good fats for energy which seems to go against everything we are told about diet especially when  feeling nauseous.
Start reading all you can about diet, especially scd/low-carb and gradually educate yourself. It will give you lots more control of the disease.

Lots of luck