Does Anyone Have Any Experience with Crohn's Disease?

Updated on October 03, 2008
M.S. asks from Butler, PA
14 answers

My husband just had surgery for a blockage in his intestines (they removed about 8 inches of his intestines) and the lab report came back that he has Crohn's Disease. He had had the same surgery about 24 years ago and wasn't diagnosed with Crohn's at that point but the doctors now feel he has had it all these years. I was wondering if anyone has experience with this. The medication people with Crohn's take all seem to have bad side effects. Everyone I tell about his diagnosis all have horror stories of people they know with Crohn's which is scaring me.

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J.B.

answers from Scranton on

Hi M.,
My husband is going the end of October to be tested for Crohn's. Apparently, they must refrain from coffee, alcohol and smoking. I am interested in what everyone has to say as well. Thanks for posting. Regards, J. http://www.GetwithitGoGreen.com

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A.H.

answers from York on

I do not deal with the disease first hand but I do have family members with it. They seem to be fine with the medication and live a perfectly normal life. I know there are a lot of meds to take everyday and once in a while my cousin has to go to the hospital for a half day treatment. But I am not sure if that is for everyone or just her case. They have to watch their diet because certain foods don't sit so well but if you don't know them you would never know they had the disease:) I also know each case is different depending on your situation and the extreme of your case. Sorry I can't give you more specifics...hope this helps.

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A.R.

answers from Philadelphia on

Hi M.,

I was diagnosed with Crohn's Disease 3 years ago but suffered for years before that. I was told over and over I had Irritable Bowel Sydrome but I knew something was wrong. At this time, I have a mild/moderate case that was discovered when I had a partial blockage that sent me to the hospital. I began the medication (Pentasa), a strong antibiotic for the infection in my intestines, and medication to help with diarreha. I hated taking medication 6x a day but I knew I didnt want to EVER feel that pain again...I thought I would die (AND I HAVE 3 KIDS!). I lost my insurance 1 year ago and was at a loss for what to do. I began taking probiotics and eating more organic foods. I know when I forget the probiotic b/c i feel pain and I am always in the bathroom. Otherwise, I have been healthy and grateful. Again, I have a mild case but maybe the probiotics work. I am now on Lialda that only has to be taken 1x per day! Hooray!

I wish you andyour husband the best of luck. Remember that stress causes flare-ups and I have learned that sweating the small stuff hurts and well...so does sweating the big stuff! LOL!

Take care, A.

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K.W.

answers from Scranton on

M.,
My friend's husband has Crohn's Disease and I know it is always in the back of her mind. His philosophy is that if he eats good natural food, when it comes out, it will be good as well. So, they buy organic and limit the amount of processed foods he eats. He also exercises regularly (he takes Karate classes and coaches hockey) which his doctor said has increased his life expectancy and has helped to lessen the severity of the disease.
I don't know much about his medicine regime or its side effects, but what I can tell you is that from an outsider's point of view, he lives a very happy, healthy and active life. If you or your husband would like to talk with them, send me a private response and I'll send them your email.
Best wishes.

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S.E.

answers from Allentown on

I'm not sure where you are from, but my best friend is a Nurse Pracitioner in NJ and she has her own private practice called Holistic Family Healthcare. She specializes in helping patients with diseases such as Crohn's but trying it first without drugs, but moreso getting to the CAUSE of the problem such as dietary issues. Her website is www.holisticfamilyhealthcarepc.com and you can even email her and ask a few questions before scheduling.

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M.M.

answers from Pittsburgh on

Get a second opinion for piece of mind.

I am not a victim of Crohn's Disease but of Ulcerative colitis.
In 15 months from diagnosis to an emergency surgery that I barely came through I am a recipient of a Ileoanal J pouch.
I no longer have a colon, and during a second resection and reconstruction am missing some footage of my remaining small bowel.

I was on 12 asacol a day, then entacort and cipro. They are all very difficult drugs. My friend young son has UC very severly and she has had HUGE/GREAT results with acupunture and total -- radical dietary changes with a nutrisionist. He has NOT been on maintenance meds.

PLEASE check into all your options. I am a firm believer in traditional medicine that gave me the opportunity to come home to my 2, 3 & 13 year old children and my young husband but I firmly believe there are great alternatives to take as a first course of action. I ONLY WISH I would have known sooner.

My best wishes to your family. Inflamitory Bowel Disease is a beyotch.

Check out The Crohn's and Colitis foundation or Ostomy association for information and support groups -- they are out there. :)

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M.D.

answers from Scranton on

Crohns could be serious even life threatening, and Crohns could be a mild situation. Depends on what stage your husband is in. All meds will have side effects and ultimately your best bet is live yours and his life a little bit calmer, a little bit healthier (food wise,w/some excercise)and all won't be so bad.This might just a turning point in both of your lives to appreciate what you have-Not to insinuate that you don't. However, when things like these happen, it tends to put life in perspective a little bit more.

Mom of 4.

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S.S.

answers from Philadelphia on

I'm not sure if this is of any help. But I saw a special on dateline a few years ago that said the blood of a horseshoe crab can either cure or treat Crohn's disease! Check it out! Good luck!

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C.D.

answers from Philadelphia on

Hey- this totally depends on your husband's Crohn's for the severity. It varies soooo much. I was diagnosed at 11 and just had a bad stomach ache 1x per year and was on maintenance drugs for it. My friend growing up was diagnosed at the same age and used no meds, just changed her diet to help it. We both had surgery 2 years ago at 22 and had about 6 inches taken out. There was an entire year that I got sick (vomiting) everytime I ate- because I had 3 partial bowel obstructions.

After the surgery I continued pentasa and 6mp (6mp is a bit more harsh but not where near as bad as remicade or prednisone). I went off them this summer when we began trying to start a family and knock on wood I have been feeling wonderful ever since I had the surgery. Even with the pregnancy- my doctor has no concerns about the baby or me right now.

Good luck- feel free to write me if you want!

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D.H.

answers from Philadelphia on

There is a group called Crohn's &Colitis Foundation of America (CCFA). I found out about them through a list of classes that the Christiana Hospital had years ago. Maybe you can do a search about the foundation or call your local hospital to see if they have it or something like it. I didn't look into it for myself though. Anyway, see if they are a fit for you.

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K.C.

answers from Pittsburgh on

The Maker's Diet is a very good book, written by Jordan Rubin, a man who had Crohn's Disease and lost down to 104 pounds before finding some answers. Check out this site:
http://www.crohns.net/Miva/education/jordanstory.shtml. If that link doesn't work, I think you can get info just by typing in the author's name or the title of the book. It's not for everyone, but I found his story inspirational. Jordan is also host of the television show Extraordinary Health.

Please don't let fear overwhelm you. I know how hard that is when it's someone you love! I'm sorry you're hearing so many horror stories. But those are only some of the stories; people don't talk as much about the positive ones (but there are positive stories too!)

Please keep us posted.

Blessings,
K.

www.joyfulconnections.net

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K.W.

answers from Philadelphia on

My husband has/had ulcerative colitis (diagnosed about 12 yrs. ago) which is very similar to Crohn's. Crohn's can affect different parts of the digestive system, where colitis only affects the colon. My husband's situation really was a "worst case scenario", which I say as an encouragement to you. WE MADE IT; not that it wasn't hard, but with the help of our deep faith in God's loving hand in it all, and wonderfully knowledgable doctors, my husband's quality of life is great right now. He's teaching high school and very active with our 3 kids. Here's a glimpse of my husband's story...

He really suffered from what many doctors told him was the worst case they had ever seen when he was a Sophomore in college. Without going into all the gross details, he was losing large amounts of blood, was on TONS of pills every day including steroids that turned his slight build into a balloon, and eventually had to drop out of school. (He did finish though, which was such a blessing!) He was in the hospital for a month at a time and went from 170 lbs to 115. It got so bad that the doctors eventually performed emergency surgery to remove his entire colon. He did pretty well for a number of years (although following the surgery, things took some getting used to.) and then about 2 years ago, things started getting complicated again with infections and flair-ups. Things got really bad again last year and we traveled all the way to the Cleveland Clinic for a second opinion before following through with a life-changing surgery. We have been very pleased with the doctor's recommendations, and things seem to be working really well right now. He has been on all kinds of diets and medications and has become an expert on his condition.

I say all of this, because he'd be great at answering specific questions you might have. I really don't want to scare you!! I'll be very honest. It may be a long and hard road for you, or you may be fortunate not to have to go through all of that. It's something that you have to deal with one step at a time, so don't get overwhelmed. If I had known all that my husband would have to endure, I wouldn't know how to cope, but God helped us every step of the way. We were amazed at the amount of strength we were given to cope with it all. Your husband very well could go into remission, and with the help of diet and doctor recommendations do really, really well. We'd love to recommend great doctors in the Phila. area and give you suggestions about diets or anything else you may need. It you're interested feel free to write. [email protected]____.com

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M.G.

answers from Philadelphia on

I'm not sure about the meds and all, but my aunt moved to Arizona and it fixed her right up!

I'm not sure that it's an option, but the dry arid climate helps with digestion somehow.

I wish ya the best of luck.

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