New diagnosis

Thank you for your answer. It's helpful - I had an image in my mind of weeks or months of hospitalization with large interruptions in life.

When i first got this dd, which was in 02.   it did cause some mental issues with me also.  Don't get me wrong some days are better then others.  What really helped is when i was really sick and flown to Rochester MN.  Is seeing kids SICK.  when i seen the sick people in the hospital, i said to self, look around and you can always find someone sicker then you are.    

 Have to keep a positive attitude and you can find that with talking on here and seeing someone who knows what they are talking about. 

As to the gas and stinky pooooo,  use spray before and after.  actually they have this liquid you can put in before using the restroom.  I can't remember what it is called. 

This site has been so much help to me.  I do not write on here very often, i just read and read.

I am 52 yrs old and divorced.  I thought i could not find anyone who would accept me with this dd.  Wrong i found a wonderful lady who does understand. 

Put your hands in your higher power and let it happen.  I have been hospitalized 2 times.  Once to remove my colon and once to remove part of the small.  Remember it could be worse. 

 

Lady sapphire,

Feel free to reach out to me anytime you want.

Here's my email: [email protected]

It's tough, and it's very important you feel you have a support system.

Often times, family and friends just doesn't cut it, because as well meaning as they can be, they just don't have a clue about the severity of the symptoms, the emotional devastation that comes along with this disease.

I send you a big hug, .

 

Personally, I think that just getting diagnosed with this disease, a site like ccfa.org gives a very good broad oversite of the condition and all the various treatment options. Treatment and the response to it does seem vary from person to person. This is where a good relationship with a doctor experience in Crohns & IBD comes in handy.

I'd start with
http://ccfa.org/info/about/crohns

Then look down the left-hand sidebar for links to more details of
"Treatment options"
"Diet & Nutrition"
"Surgery Options"

They also offer
Educational Brochures
&
CCFA Webcasts

Hi Lady Sapphire, welcome to the site, but sorry for the reason you have to be here.

I was diagnosed with this disease as a teenager in 1989. I was hospitalized at that time because I was extremely malnourished. It took several months for an accurate diagnosis, I had lost much weight, and was at the point where I was eating very little. I couldn't participate in gym class without getting light headed. If it had been caught earlier, I probably would not have been hospitalized.

Because I had slowly declined in health for such a long period of time, my diagnosis was actually a little bit of relief. I had the shock & denial of having a condition with no known cause & no known cure mixed with the knowledge that at least my issues had a name, and the doctors had a plan. While there was no cure, there were several treatment options available with many more being studied.

I have seen the medical treatment and approach to this disease change and improve dramatically over the past two decades, and I am confident that the medical community's understanding of and treatment of this disease will continue to progress.

My only other hospitalization came last year, 22 years after diagnosis, because I needed surgery. Over two decades of repeated imflammation and healing had left enough scar tissue in my small intestines that a portion of it had to be removed.

Mentally, yes, living with a chronic disease can be mentally and emotionally taxing at times. My doctor once recognized this, too, when I was in my early-to-mid 20's and offered some conselors and psychiatrists that could help me. What I have found helpful over the years was the support of family (especially helpful for me as a teenager), spiritual support in my family and church, and a maintaining a good sense of humor. I love comedy movies. I love listening/watching stand-up comics. Enjoy silly movies and silly music. I have been personally helped by the mantra that laughter is the best medicine.

Arm yourself with knowledge and a good support mechanism. You have support here.
Best wishes in your current treatment path ahead of you!

Oh, Lady S, there is plenty of life to be lived beyond this immediate problem you're having, which will be solved with the help of your DRs and with your dedication to learning about your illness, your body and your lifestyle. I am sorry to say that yes, you will have to discuss your bowels with people; your doctor, a nurse or two, maybe a counselor. They will not be embarrassed. That is what they do for a living. They will NEED to hear about this. They will give you the privacy you want, but they are going to have to see your bottom in the end.

You should not be ashamed of your own body's functions. I am sure that your body is beautiful on the outside, and maybe you haven't spent much time thinking about how the inside works. Now, you will have to learn, and once you do you will see how beautiful that can be, too.

Here on this forum we talk about bowels and diarrhea and vomit and stool and the softness or hardness of it, and our bottoms, and our bellies and our achy joints. Maybe leaking fistulas! Mouth sores! It is not pretty, but it is what we have to live with, and there is no one here who is going to judge you because you have these issues. We strive to be healthy and to achieve remission, so that we can function normally and not suffer. The road to that goal involves openness and not embarrassment.

I'm sorry that you lost a client because of your illness, but I am certain that you will feel better and get back to work. Now is the time to rest and focus on feeling better.

Your agent is firing you? That sounds like it is illegal. You have a medical condition. You will manage it with medications. You will get better. You will not soil anyone's clothes again. Talk to a lawyer.

Ok. So your agent didn''t fire you. You are taking a leave of absence, which is completely reasonable.

I suggest reading the book "Breaking the Vicious Cycle" which is a book about how to control and put your Crohns into remission using a low carb diet approach.  This diet does not always work for everyone, but being that you are newly diagnosed with CD, you probably have much better opportunities for this diet to work for you then people who have had this disease for many years.  You have nothing to loose by reading the book and trying the diet, and you have all to gain if it works for you.  There are many people on this site like InSoFla who have had great success with this diet, so there is a wealth of information you can tap if you have questions.    

kazbern said...
Your agent is firing you? That sounds like it is illegal. You have a medical condition. You will manage it with medications. You will get better. You will not soil anyone's clothes again. Talk to a lawyer.[/quote

WHEN will it get better? I'm too tired to fight the pain and the drugs, plus tne lovely baby food from the blender. The docs won't prescribe any strong pain meds. They think anti-anxiety meds are better. They don't care that I'm doubled over and can barely stand up. They suggest the ER. It costs zeveral thousand $ for one injection that lasts a few hours.

My anger and frustration are overwhelming. Day after day of this is putting me down in bed 24/7.

Sorry for the moan.

Lady Sapphire,

This disease is ugly, and that is one of the factors that makes you feel filthy.

One thing you may want to have on hand, if you don't already, is plenty of good quality aloe containing baby wipes - I would suggest unscented so it would cause less irritation.

As far as feeling ashamed, it's something you're going to have to get over because you have to realize that there's nothing to be ashamed about. These are all bodily functions we all have (albeit in various forms). Even the Queen goes to the bathroom, no?

Would it help at all - if you could picture the Queen on the toilet bowl, haha?

Actually, I'm NOT kidding. If it works to make you realize even  royalty is human in the most basic way.

Would that help you?

IMO, you're lost because you feel you have no control.

And in fact, right now this disease has taken control of you.

So, you have to find a way to turn that around.

There are several ways IMO that you could get you there ( in baby steps of course):

1) get as much info on CD and all its aspects, this info will serve to empower you

2) Often times, if you control diet (what goes in), you can control what comes out (and how it comes out)

3) seek out a  counselor who specializes in chronic diseases -

What do you think?

 

Hi L.S.
Sorry that you feel so bad and please try and remember to take one day at a time and that you have a lot of support on this site. I have had Crohn's since 2007 and have had 3 surgeries, but not everyone has to have surgery. I think that controlling your diet is really important because there are definetly foods that you should avoid. I take CHOLEYSTRAMINE, it is an orange flavoured powder you mix with water. It bulks up your stools and cuts way down on the diarrhea. We can all relate to how you feel when you have diarrhea, but I purchased a little blue bottle called "Just one Drop". It is a liquid that you put 1 or 2 drops of it into the toilet before you go and it takes away the smell. I live in British Columbia, Canada and I purchased it at Walmart so depending on where you live, you can maybe try at your Walmart. When you are feeling down, need to vent or have any questions, it's nice to know that going on this site will help. I wish I owned a computer when I was diagnosed.

Take care of yourself, grieve, get mad, cry, stomp your feet if you feel the need, just remember you are not alone.