My new life started this morning...

[CrohnsDaddy]

Greetings everyone. I've read alot of the "Your Story" threads here. In fact, those posts have given me the courage to tell my story.

I started suffering from the effects of Crohn's when I was in high school. That's been more than twenty years ago. For the last twenty years, my symptoms have gradually gotten worse. Now they're to the point where it is effecting my ability to perform my job. My job involves the safety of thousands of people every day.

So I pulled myself from active status at my job, and called a highly recommended gastroenterologist. I had my first colonoscopy on October 10. They callled this morning with the results. I have Crohn's affecting my entire colon. The Doc put me on Lialda and Entocort EC. I'm sure there are quite a few people here taking this particular regime, and am very anxious to hear their results of these drugs. Especially how long it takes to get some initial relief! Right now my Crohn's is bad enough that I don't leave the house for longer than an hour at a time. It has affected my job, my relationship with my family, my mood, my outlook on life, my future, and has me very concerned with my ability to provide for my two beautiful children. I have a soon-to-be six year old boy, and a five month old baby girl.

I guess right now I just need to know that there is hope for some sense of normalcy and to know that I'm not alone as I go through this.

It was such an emotional roller coaster today; after suffering for twenty years, I could finally put a tag on what was causing me so much pain, embarrassment, grief and stress. It was a huge relief to finally know what it was, but at the same time, the diagnosis itself seems pretty bad. My doctor told me that Crohn's was typically harder to initially control and keep under control than Ulcerative Colitis is. And, unlike Ulcerative Colitis that can be cured (by removal of the colon), there is no cure for CD.

Well, it's late, and it's been a long day. I think I'll see if I can get my mind to stop racing long enough to get a few hour's sleep.

Thanks for letting me bend your ear(s).

 

[D Bergy]

Welcome to the forum.

There are lots of us here with about every variation of CD you can imagine. There are many people using many different types and combinations of treatments. What counts is what you can find to work for your case.

For most of us some diet changes have to be made. Luckily, I only have a couple of things to avoid. Milk being one that seems to bother most people. Some find probiotics help their condition.

A food journal is useful to find what causes you problems.

There is no reason to believe that your condition cannot be improved. It will take time and some work, but it sounds like you are up to it.

I do not need a journal to tell me the cheeseburger, fries, and malt that I scarfed down yesterday bothered me a little. I cannot make a habit of eating like that, but I also know the malt is what made it bad for me.

Can't help you on the drugs as I am not taking any. There are many here with experience with similar regimes and I am sure they will share their experience.

Let us know how it works out for you, and good luck.

Dan Bergman

 

[Kev]

Hi CrohnsDaddy. Welcome to the forum. It does take a special courage to come out with this disease, even if it's just here on the forum. The emotional roller coaster ride you describe is familiar to all of us. You are not alone, we've all been there too. Give it some time, right now things are probably coming at you fast and furious. This will pass, and when you and your doctor come up with the formula that ameliorates your disease, the physical ups n downs that seem to correlate to the emotional ups N down should settle down, and put you on a better footing. One key thing to keep in mind is that, this disease, this diagnosis, life changing as it is, typically isn't life ending. Your future with your children will be different post diagnosis, but you do have a future. A different diagnosis could have taken that away. As for removal of the colon, it resolves colitis, whether it be ulcerative, or diverticular, or crohns. However, if your crohns is in your ileum, or elsewhere, then you still have the disease. so it's possible to have crohns colitis, remove the colon, and not have the disease show up elsewhere. But there is no guarrantee, and it could migrate, it could recur, or it might stay resolved. Pretty much a crap shoot. (no pun intended). Anyway, I don't want to hit you with homegrown information overload. You N I have a number of things in common.. a 20 yr pre dx history, and a diagnosis in the latter part of life, & the concern over what it means to our kids.
Once again, welcome to the forum, congrats on being diagnosed finally. Better late than never. At least now you & your doc can start treating this. all of the best, OK

 

[soupdragon69]

Hi There,

Good to see you posting! You are so very welcome to our merry bunch!

I understand the emotional rollercoaster you have been on.. being finally told you have a LABEL for what it wrong is a huge hurdle which is a relief but also a double edged sword. You end up daunted by the implications and possibilites and the what if's but so relieved you know what it is finally too and that something CAN be done to sort you out!


Just take each day as it comes - your emotions will still roll around a bit due to the diagnosis, taking on board more info, readjusting to diet and lifestyle changes and drug side effects on top of the exhaustion and other symptoms you have.

Know you have a great safety net here too and can yell any time you feel like it or celebrate a better day too with us all. We do understand it on so many levels.

Well done for posting - keep going!

Thinking of you.

 

[Nancy Lee]

Welcome!

Hello CD and welcome to our little corner of the Internet.

Boy twenty years is a long time to put up with the symptoms of Crohn's.
Now though, as you say, you can put a label on it.
Just knowing what it is I hope makes you feel like you can research and see that you are not alone with this disease. My Crohn's too runs the entire length of the colon.

In the beginning it hard emotionally to get a handle on everything that is happening. The medications, diet, etc. It's all new and the meds are trial and error. What works for one may not work for the next person.

I have been on Entocort, years ago...(Been diagnosed for about 11 years) It is a form of steroid and I don't recall how long I was on it but that it did work for awhile.

In the beginning you wonder how you will care for your family, work, and what kind of a life you will lead from here on in.

Take it from me...relax and hang in there...because it can be brought into remission, and you will have times, maybe years like I have had where there are no symptoms at all !! The doctors just have to hit on the right meds and you have to do your part and stick to the diet, and avoid stress.

You WILL make it through this...Oh how I remember the first days of being diagnosed and feeling so helpless and like I had no control over what was happening with me or my life.

The time frame is different for everyone...but, you will level off and feel quite good again...it just takes time and perseverance.

Please feel free to throw out any questions you may have ...
someone is usually popping in and out.
Also PM myself or Kev, for the password, if, and when you want to visit the Lounge..good jokes in there.

Above all...keep in mind...you are not alone!!
We're all in this together and here to help support each other.

Healing welcoming hugs~Nancy