Just got told I have Crohns 03/31/10

Well first off I am sorry you have had to join our club. And secondly, take a deep breathe, this is not a death sentence. I have lived with this darn disease for almost 35 years. I have 3 grown daughters all born after I was diagnosed, have been at the same job for 20 years and married to the most wonderful guy out there. Most importantly you should always take a maintainence med as this is a chronic and incurable bowel disease and must be treated at all times. All you will want to figure out what the best diet is for you. I personally follow a low residue diet at all times and it agrees with me very well. You can google it and get diet ideas. You are on the typical starting meds, and should consider Imuran as your maintainence med. Many on this very forum have been successfully maintained on this med for years. Ask any and all questions you have, one of our great members will be along to answer your questions. Hugs~

I have had this disease officially for almost 22 years, unofficially for 32. My mother was diagnosed when I was 1, so basically I have lived with this disease for as long as I can remember. I am currently on 6MP, a sister medication to your Immuran, and have been for the past 12+ years. It has kept me out of the hospital and given me the chance to enjoy my daughters and my husband. The 10 years prior to that I spent dealing with the ramifications of not being diagnosed and not being on any maintenance medication for the first 10 years when I thought I had CD but the doctors wouldn't believe me. Staying on some form of maintenance medication is the most important thing you can do to improve your quality of life for the long haul. Like Nanners I follow a low residue diet. Others one the forum can eat more fruit/veg when their disease is under control, but it is a very individual thing. Once you are feeling better and your medication has had time to settle things down, you will quickly find out, what foods work for you and what foods don't. For now, while things are flaring, you should stick to your basic "comfort" foods. Soft easily digestible foods. Things you would give to anyone getting over an upset tummy. Chicken, soup, fish, potato, rice, pasta, egg, pudding, custard.......

I hope you will feel free to ask any specific questions as they come to you and that you are on your way to better health now that you have a diagnosis and a course of treatment.

Thanks for replying to me, I was told to do a low residue diet, I am wondering though I was told I have a spot in my small intestine that is no bigger then a pencil, so I'm to avoid anything that can't fit through there. But I'm thinking since it's so small I might have to have surgery to remove that area.

So does everyone that has crohns end up having surgery? or can it be controlled with just medicines?

I will be honest Tink, I think the odds of surgery is about 75% for most Crohnies. We have a guy here who has had Crohns just about as long as I have, and knock on wood so far no surgeries. But it is fairly common. I have had two bowel resections, but also 8 other surgeries, many of them because of the damage my Crohns has done to my body and bones. Not all have to go thru what I have, but its a happens on occasion. Hugs~

As noted your odds of eventually having surgery to resect that narrowd section are fairly high, but not certain. If the narrowing (I assume they detected that on a small bowel follow through series of Xrays) is from scarring, surgery is likely at some point. If it is from inflammation the meds you are on ought to help open it back up. You diet advice is also good, though the key to understanding Crohns is that there is NO typical case or patient. We range from mild cases (mine) to very severe, and most people go through periods (flares) with active disease with quieter periods in between. The bottom line is that untreated (meaning no maintenance meds) this disease almost always causes increasing levels of damage that make things like surgery and major complications (obstructions, fistulas, bleeding) more likely. Finally, Crohns is a chronic disease . . . which means we likely will all croak from something else, not the Crohns. It's complications are more annoying than life threatening (as in diabetes for example) and a Crohns patient with a good gastroenterologoist and a solid treatment plan will probbaly live an essentially normal life, though it is a good idea to have some reading material in the bathroom.

Don't feel alone, Tink.
I have dealt with this DD since 1991 ( when I was diagnosed, actually, longer considering symptoms.) .
Only to find out about 3 years ago, that I now have Ostearthritis as WELL as CD. Plus, I have an arthritic condition that is a complication of the CD.
Never rains, but it pours.

Matthew
48 years as of last February. 20+ years of this.<sigh>

Thanks and I do need to work on the worrying part, as I do worry alot, Have been a single mom of 3 girls and they gave me alot to stress over lol although I wouldn't have that any other way, My girls are my life.
And yes I have found that spicy foods are not my friend.. this includes my favorite place to eat, Famous Daves. I was told to stay away from milk unless its soy, and seeds and such.
This was found thru a colonoscopy in the hospital when I went there because I was in extreme pain and couldnt keep anything down or in for that matter, either end.
I have had pains before but they was always a year apart, and always happened in the month of Aug, since I live in Az, dr's pretty much put it to I was dehydrated mixed with the IBS. So I wasn't checked 4 years ago when the first Aug episode happened. Only this year has been before Aug. and was the worst ever, so my girls took me in.
I really appreciate everyones reply's, I really felt all alone, and My girls know i'm going thru this pain and feel sorry for me, and do what they can, but they have their own lives too, So I guess what I'm saying I feel bad for all who have this, but glad I'm not alone.

Tink, I am new to Crohn's too, only been dealing with it since February.   I had a stricture at my terminal ileum and it was just about only a pinpoint opening.  My doc admitted me to the hospital for IV steroids and said if that did not work I would have to have resection surgery.  The stricture loosened up and I did not have to have surgery, for now at least!  My stricture was part inflammation and part scar tissue but enough of it was inflammation so that I ended up not needing the surgery now.   Good luck! 

Algirl Thats what the told me on the stricture except mine was size of a pencil, however not sure if it opened , but they didn't do surgery because they said i was still had alot of inflammation and wanted to have me on meds for awhile, My dr says some ppl live without surgery even with a small hole, So i am hoping the meds work for me

Thanks everyone for welcoming me to the site, I do have another question however, I just found out a friend of one of my friends has had this for 10 years and she had 3 surgerys and then had to end up having a bag. Her question to me was what strain of CD do I have? I didnt' know it was broken down into strains, and if it is and my Dr told me I guess I must of been crying to hard to hear him..

And I have calmed down even more after hearing from all of you, It has meant alot to me, Thanks so much..

Thanks Nanners, It's just kinda hard to soak all this up so fast, and still not really understanding what I have just yet, makes it all more confusing. The thing is, I have only been having 1 flair per year for last 3 years, and since it only happened in Aug, being here in Az the Dr's told me I was dehydrated, during the rest of the year I ate what I wanted, did what I wanted, never had Diarrhea except during them flairs, and was always constipated, So from what I have read thats not typical is it? or it is just for the so called type I must have? so confusing. also I have never had bleeding, or the mucus, I realize everyone is different, but To me I guess i don't understand why I was able to eat anything for 11 months & 3 weeks of the year and never have a problem, then BAM!! this year is the first time it happened in March and was the worst ever. I usually have a high tolerance for pain and this time I was crying like a huge baby.

Also I have noticed you have allot of the same things I have such as Fibromyalgia, Anxiety, Osteoarthritis, I also have had endometriosis, IBS, diverticulosis, Allergies, Anemia, And I have found that Anemia seems to pop up in each one of them.

In one way you are fortunate, you have people you can talk to & know what you are going through.
For those of us that have battled this DD for over 20 years, when we were DX'ed we had no one, plus tons of inaccurate info. I had a family that refused to acknowledge the full seriousness of the situation. No support until I found a support group after I left home nearly a year later.
And after I left Florida ( where the group was based) I had years of NO support.
Thank you God, for the people of HealingWell.

Matthew