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Crohn's Disease
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Posted 9/18/2007 7:43 PM (GMT -8)
sad  My doctor called me at work yesterday and said she wanted to talk to me and give me an Rx, so i leave work and go and see her........she got the results from my CT scan from the end of August....well even though i was expecting to hear what i heard it was still a shock to me......to say the least i was abit stunned.......imagine that......i suspected all along what was wrong but was still shocked to hear it......officialy diagnosed with crohns of the terminal illium...its distended and elongated, thickened and showing signs of inflammation...... so i have been put on asacol 400mg tablet 3x a day and to increase it if i am flaring to 2 tablets 3x a day if i feel i need it.........now that i face the realization that yea i do have crohns it actually scares me.......i don't know why but it does...and i have all these well meaning people at work that are letting me know that i should not worry that i can live a normal life, yes i know i can live a normal life, but i also realize the complications that i could face in the future, even though my case is mild it can and most likely will get worse....hopefully later then sooner........but at the moment it is hard to think positive, even though its good to know that its not all in my head.......and i have treatment posibilities.....

It would be great to hear from those with crohns of the TI and let me know how things are going with you and what i should expect.......good and bad, i would like to be prepared for any eventuality......now that i am accepting this diagnoses and moving on with life.....i would like to know what i may or may not have to handle in the future, and so that i can help my dear bf in understand what i may have to go through and what he is also going to be going through with me.........he was so wonderful when i told him what the doc said.......i got a big hug and a kiss, with an i love you forever..sigh.....i think i found a good one tongue .......anyway thanks for reading this......Deb...

Posted 9/19/2007 2:28 AM (GMT -8)
Hi Deb,
Well for me I have Crohn's of the TI. and had sugery and long time ago. I was doing fine for
many years after my sugery until it came back. I am now on remicade have been on it
for over 2 years and in remission.
TBW
Posted 9/19/2007 4:46 AM (GMT -8)
hi lady. sorry to hear the news. i was diagnosed with crohn's of the ti last month. and you sound like me when i was first diagnosed so i totally feel your pain. i was so upset that my regular doctor put me on ativan for my moments of total freak out. it's a little tough to swallow after getting diagnosed. there was a small amount or relief after going through all the testing that i did in fact, have something wrong with me and now they knew how to start treating my symptoms. i am currently on 4000mg of pentasa daily and 9mg of entocort. i have to say that the pentasa has really got my bm's under control and i am not having the severe pains in my abdomen i was having. i mean literally the pain was crippling. i still have pain but no nearly as bad. (unless i eat popcorn! i really screwed myself up with that one!) i also have thickening and stricture from scar tissue. i having been taking entocort for 1 week now so i am not sure if it's helping. if in the next few weeks it is not i will be talking to a surgeon.

well that's my story! do take care and remember to breath :)
Posted 9/19/2007 5:34 AM (GMT -8)
I have a Crohns in the terminal ileum. I had two flares when first diagnosed, each under control within about 3 mos. then enjoyed a 20 year remission. I have had 2 resections in the past five years and things have gotten a little rougher for me, but my Crohns is still mild. Most of my problems are more surgery related vs. disease related. Everyone is different though, you really should keep that in mind. By the way, the most common location for Crohns is in the TI. Others have it in other places, but the most common is in the TI area.
Posted 9/19/2007 6:29 AM (GMT -8)
I have crohn's in my ileum too...I was dx in july so I am still a newbie ....I haven't reach a remission yet ...when I first was dx, my gi put me on entocort 9mg and it worked but then i had to tapper my entocort to 6mg then 3 mg and by the time hit 3 mg my symptoms came back...so whent to see the GI and he increased my entocort back to 9mg and started me on imuran 50mg until I do a blood test ....if the blood test comes back ok I will increase my imuran to 250mg. but I have to wait 3 month before the imuran starts to work.and my gi said that if the doesn't work I will start remicade or something like remicade ...they have a new med that is in research right now.that's my story...hoped it helped... good luck!

Jackie
my email adress is jtadcan@hotmail.com
Posted 9/19/2007 7:20 AM (GMT -8)
That's the funny thing about getting dx. You want so bad to know WHAT is going on, and to prove it isn't just in your head -- but then you get stuck w/ a chronic illness and you try and remind yourself -- well at least it's not life threatening, but really it would have been great to have something they could have just fixed!! And then you just begin to accept that you have this DD and go on. I'm new to this too so my story isn't going to give you a long term outlook. I just wanted to say that as good as it is to get all the information you can, you must remember that each person is different. From the way the disease acts in our bodies, to the way we react to the drugs. Hope for the best, and prepare for the worst. Know that when you feel like no one "really" understands -- we do, because we have been where you are and we know what it's like. Come when you have questions and support, or just need to vent. Most of all appreciate every 'good' day you have. I hope that you have a very mild case and can live a normal life w/ a long remission.
Heather
Posted 9/19/2007 12:00 PM (GMT -8)
Hi Just wanted to tell you that although it is a life's thing there is hope for us with meds diet and of course the all powerful lust for life .Know the feeling of first finding out but got to admit it is better for me now and no pain for months .You should feel better with some help from your meds and of course us health loves company or so it seems .Glad your boyfriend is there for you. Best Wishes and take good care of yourself now that you have a good foundation to start on. lol gail
Posted 9/19/2007 12:02 PM (GMT -8)
I have crohn's of the TI and inflammation in my colon as well (crohn's colitis). Anyway, I was diagnosed in 4/07, so I am new to the treatment side of crohn's but not to the suffering of the symptoms. They tried me on prednisone a few times in the past 6 months. The only time my symptoms went away (constant diarrhea) was on 40mg of prednisone. As soon as I started tapering, the symptoms would come back, so I just started remicade August 1st. I had my 3rd infusion last thursday, and I think I may be going into remission for the first time in 7 years. Oh, and I am also on asacol 800 mg three times a day (have been since the dx). The side effects I have noticed from that is hair thinning, but my hair is really thick to begin with so you can't really tell. That didn't start happening until about 3 months of taking it. The remicade makes me feel tired for about a week afterwards, and I have had an allergic reaction to it during each infusion, but they just stop the infusion, administer more benedryl and then I'm fine. I think it's worth it if I'm actually going into remission! Good luck! The food restrictions take the most getting used to, especially the lack of raw veggies. I will miss those forever.
Posted 9/19/2007 12:27 PM (GMT -8)
Your story sounded just like mine, I was diagnosed two years ago. I have been on the round of drugs and now ended up on Remicade.  Had my ups and downs and am always hoping I'll be in remission soon.  I started on Pentasa and after that moved up to the bigger drugs.  Ihad been suffering for years, I actually thought I had a bad back, my sides and back hurt so bad after laying in bed all night, every morning I would wake up in pain, having NO idea it was crohns (TI).  I went to a chiropractor for years!  After havign my diagnosis and being put on the Pentasa, I went 3 months without ONE day of pain, it was so awesome.  The pain has returned, but not very often. I just can't believe how long I walked around with Crohns as I am sure many people do, it took so many tests to even get the diagnosis.  I wish you all the luck and hopefully you will be in remission soon and don't get too many bad symptoms of this disease.
Posted 9/19/2007 12:28 PM (GMT -8)
My CD has always been at the TI even though the TI was removed in my first resection, it always comes back at the same spot. Because my Mom had CD all my life, I basically grew up with it, and when I was diagnosed, it really didn't phase me. It really was just the devil you know for me and probably was a much easier diagnosis than anything else they could have thrown at me. But my best advice to you is to do what you are doing, educate yourself. There are a lot of good books out there, one in particular for new patients that I would recommend is Crohn's Disease The First Year (or The First Year, Crohn's Disease) by Jill Sklar. It goes through all the meds, all the tests, all the emotions, just a basic primer written by someone who has Crohn's. Its a really good starting point.
Posted 9/19/2007 1:15 PM (GMT -8)
Others have given excellent words of wisdom on what to expect long term.

All I will add is that you might want to consider adding Entocort to go along with your Pentasa. Entocort is a steroid that primarily affects inflammation in the terminal ileum. It helps some people more than others but is worth a try with your case. You could start it along with the Pentasa, then over the next couple months, start tapering down the Entocort while still taking the Pentasa long term.
Just a suggestion for you to consider...
Posted 9/19/2007 6:25 PM (GMT -8)
Thank you all for your resposes, it makes me feel better to know that im not alone and if i need to vent or just to talk, that there are people out there that understand what i am going through.....i have been reading this site and been a member for a year.......thats how long it has taken me to get diagnosed......and it has been a wealth of information.........thank you so much, i hope i can help others as you have helped me......;)
Posted 9/19/2007 7:18 PM (GMT -8)
lady1012, after my dx I went through a grieving process of sorts. I think it's normal to go through those emotions of sadness, being scared, being angry, depressed, etc. It took me awhile to come to grips with it.

My dx was in the spring of 04, so almost 4 years ago. Mine is in the TI as well, though I get some nasty fistulas and other manifestations on occasion. It's a rollercoaster at times and then other times you would never guess I had a chronic illness. Remicade kept me in remission for 2 years after my dx. It was wonderful! It stopped working and I had a horrible flare that put me in the hospital 2x and had me seriously considering surgery. As a last ditch effort, we got Humira approved (wasn't FDA approved for Crohns yet). Another miracle drug, I was eating again within a week!

I still have days when I forget I have it. And I have other days when I can't forget that I have it. I wonder what my future holds and if surgery is likely. I cry sometimes and it feels good to get that all out.

Grieve all you need to - I've been there. Sorry about the dx =(
Posted 9/23/2007 2:05 PM (GMT -8)
I too have a Crohns in the terminal ileum and was diagnosed in Aug.  I am sorry that you have to go through this but reading these posts and hearing what others go through and hearing that there is some hope that remission will come, makes me feel a bit better and gets me through.  =0)

Yeah yesterday I cried too.  Most of the time I can hold it together but sometimes I feel like I caused this (did I drink too much coffee?  not sleep enough?  take too much advil?  push myself too hard? and am being punished for something?) although I know it isn't the case.  I just hate the waiting for something to happen, the tiredness factor, and not knowing when I'll be more functional and NOT BEING ABLE TO EAT WHAT I ATE BEFORE. I hate the not knowing how functional I will be once remission comes.

Good luck on your journey and know there are great people on here. 

It's nice to know that I'm not alone too.

Take care

 

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