Just got told I have Crohns 03/31/10

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Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/1/2010 10:33 AM (GMT -7)   
Ok so I'm 42, Have been dealing with Fibromyalgia since 97, IBS since 00, Had to have Hysterectomy in 01 due to endomretriosis, Allergies ALL my life, and now Crohn's.. I still not sure what exactly it is, but any helpful advice from the ones that have been dealing with this would greatly appreciated.

Dr put me on Imuran 50mg, and Prednisone 20mg

Being new to this I am naturally scared, whats worst is I want to Live a LONG life as I just had my first grandson born Aug 22, 09, then my first granddaughter born Jan 21, 10, My next grandson due July 4th, 10, and my fourth due Aug 22, 10.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/1/2010 11:24 AM (GMT -7)   
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~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/1/2010 11:27 AM (GMT -7)   
Also you might want to check out the Crohns and Colitis foundation at CCFA.org. You will find alot of helpful information there. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/1/2010 11:38 AM (GMT -7)   
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.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/1/2010 11:59 AM (GMT -7)   
Hi and welcome
you sure have come to the right place for advice support n i see you hv already been given great input from nanners..zanne
i too hv had this dd for many years and hv fibro as well
it is not a death sentence as you can see there are meds and life changing skills you will learn..especially from ppl here
keep posting and im sorry you have these dd but sure glad you found us
lyn
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

I Refuse To Give Up....Others Are Worse Off Than I Am

Donate to WWW.HealingWell.com
MEDS..Lyrica..Dilatin...Pentasa...Folic acid....Ativan..,Diazapam prn..Trazadone at HS..T 4s PRN

NEVER GIVEN UP NOR IN


Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/1/2010 12:07 PM (GMT -7)   
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?

MIMIO
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/1/2010 12:09 PM (GMT -7)   
Tink 42....I am sorry you are now a part of the Crohnnies but I promise you will learn to deal with it. I have found each person must find their own way...through meds, diet, etc. Try to keep your thoughts positive...I think it really helps but when your are in the "agony" stage of CD it is pretty darn hard to be happy about anything. Hang in there.

MimiO

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/1/2010 12:22 PM (GMT -7)   
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~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/1/2010 12:44 PM (GMT -7)   
I do have another question, the Imuran is supposed to lower your immunities, so does this mean I will get sick more with common colds, flu, bacterial infections, ect? I forgot to ask this to my Dr. as my head was still spinning from hearing the news I had it in the first place. A friend of mine seems to think Maybe I have had the Crohns longer and was misdiagnosed with IBS years ago. And I know I have had Fibromyalgia since 97, my Dr said these 2 most of the time go hand in hand the fibro & CD. Any thoughts on that? I was adopted when I was 5 weeks old, so None of my adopted family has any of this. And whats the likely hood of my girls or grandkids getting this in the future?

Thanks again, I just keep thinking of new things to ask, I am sure after the shock of this wears off and I do calm down, I won't ask as many questions.

PS: I love green beans and not seeing anywhere if they are ok to eat or not?

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/1/2010 2:33 PM (GMT -7)   
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.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/1/2010 2:35 PM (GMT -7)   
Oh the imuran question -- I am on 6mp, which is first cousin to imuran, and at the 50 mg dose you should not notice any major increase in your susceptibility to bugs and germs. It might take an extra day or two to shake a cold, but that dosage only turns the immune system down a notch or two, not enough to make you a walking disease magnet.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/1/2010 5:02 PM (GMT -7)   
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>

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 4/1/2010 5:42 PM (GMT -7)   
Welcome to the board! Try not to stress out too much... I know your new to this disease and everything, but stress tends to aggravate Crohn's...

Try not to worry... Quite a few people live at a normal lifespan with Crohn's from what I've read... As for questions about foods...

Everyone with Crohn's disease has things that they can tolerate and can't tolerate... and it's different for everyone.. The best thing for you to do is keep a food journal... Write down what you eat every day and how it makes you feel... if you notice something that consistently appears on the list and you feel bad... It could be a food that you have trouble with...

As a general guideline... A lot of people with Crohn's have difficulties with nuts and seeds... and spicy food... So, try to avoid those foods...

As for the question about your kids and grandkids... it's hard to say... Crohn's does have some genetic link... but I'm not sure what the chances are...

I think... with siblings... It's a 50/50 chance... At least, if I remember right... don't quote me on that...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/1/2010 6:52 PM (GMT -7)   
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.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/1/2010 7:09 PM (GMT -7)   
You are absolutely not alone! I will write more tomorrow!
The soup at famous dave's is semi-ok for me, but I always really want a Devil's Spit burger.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/1/2010 7:19 PM (GMT -7)   
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! 

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/1/2010 7:21 PM (GMT -7)   
I haven't tried the soup there have always had the brisket with tons of BBQ, including the devils spit, (which might be my problem there)
BBQ has always been my favorite food, Just have to change that I see

Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/1/2010 7:26 PM (GMT -7)   
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

JaSanne
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Date Joined Oct 2006
Total Posts : 2044
   Posted 4/1/2010 7:39 PM (GMT -7)   
I'm sorry to hear about your diagnosis, but I do welcome you to this site. When I was diagnosed, I had no means of contact with anyone to deal with the hows and whys of the disease. I was in denial for a while.

This site has been a big help for me. I've had to been gone from it for a while and recently came back. It does help to be in contact with others dealing with the same things. Welcome.
50 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.  Severe depression past two years.


Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/1/2010 8:40 PM (GMT -7)   
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..

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/2/2010 9:06 AM (GMT -7)   
There are various types of Crohns. Some like myself have what they call they stricturing type of Crohns. In other words I have tend to develop more scar tissue and blockages with my Crohns. Others suffer with what if called Fistulizing Crohns as they suffer with fistulas. Others have the inflammatory type of Crohns, they have alot of inflammation. We have a member that has a great link to the differing types of Crohns, but just recently lost her Mom, so is dealing with that right now. Hopefully she will be back with us soon and will be able to post it.

As for your kids, its possible that one of them could inherit it from you, but the odds are pretty low to be honest. I am the only child of 5 who got it, and Thank God none of my 3 girls or 5 grandbabies have it either. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/2/2010 9:21 AM (GMT -7)   
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.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/2/2010 2:18 PM (GMT -7)   
I just wanted to add that you will read a lot of things about CD and while all of these things are possible and COULD happen, most of them WON'T happen. So don't worry unnecessarily. You are asking good questions and educating yourself, which will make you a much better patient, but you could end up getting scared that all the things you read about will happen to you, but the vast majority of Crohn's patients are out in the world living life and not even thinking about their disease except to take their daily maintenance medication. Once you get things under control things will settle down and hopefully your disease will be much easier to handle.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/2/2010 5:05 PM (GMT -7)   
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

Tink42
Regular Member


Date Joined Apr 2010
Total Posts : 42
   Posted 4/2/2010 5:30 PM (GMT -7)   
I agree Matthew, And I know I am Blessed to have this site and All of you helping me thru this. And Thank God for him helping me find this site..Smile
42 yr Female
Dx'd with Crohn's 03/31/10, Fibromyalgia 97, Allergies since birth, Anxiety 06, Depression 97, IBS 00,
Endometriosis 01,Anemia since teen years, Osteoarthritis 00, Diverticulosis 07.
Just started Prednisone 20mg, Imuran 50mg x2

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