Post # 1
I had a colonoscopy today, and the doctor said it looks like I have Crohn’s Disease. It won’t be confirmed until the biopsy comes back, but given my family history of Crohn’s and the findings of the colonoscopy, the doctor is pretty sure.
Anyway, it’s kind of an overwhelming diagnosis, and I’m just wondering if anyone can give me some practical advice on living with the disease? I know diet has a lot to do with it, but I don’t know where to start. Thanks a lot!
Post # 3
One of my good friend’s growing up has crohn’s and it can be a struggle. Not to scare you but she had to be put on steriods for a little while to help deal with it. But her’s is- I guess the best word would be “remission”- so she can be less careful with what she eats. But I would be very aware of what you are allowed to eat and what you are not.
I would find a specialist who has expierence working with Crohn’s patients. It’s definitly manageable with the right help.
Post # 4
A former roommate of mine has Crohn’s. She takes a lot of pills to treat it. My MOH is going through a process of figuring out what she has, colonoscopy is the next step. She suffers a lot and I can sympathize a little bit b/c I have IBS-A (alternating and pain predominant). It’s affected my life so much b/c of the pain and having to be near a restroom that I take mostly online courses and have to call in sick a lot. Luckily my workplace is very understanding with physician documentation. I can’t imagine having Crohn’s.
Post # 5
My best friend has it. OVer the years she’s been on as many as 14 different meds at one time. Nothing has really kept it under control for a long period of time. She’s even gone to as far as MJ therapy, it helps, but she’s currently in the process of being scanned and was biopsied last week for stomach cancer. ITs so hard on her, and her family, she has an 18 mo old and its just gotten so hard for her. As long as you find the right therapy for you, its not so bad (so ive witnessed from her), she’s just had the worst luck. She can’t work or anything anymore and hasn’t for over a year. I wish you luck and hope its manageable for you and you don’t have to go through what she has had to. I pray every day that she can find something that works for her to have a normal life and family. Best wishes 🙂
Post # 6
Hey, I don’t have Crohns but I have food allergies and IBS and the best advice I can give you is to really stick to the diet that works best for you. I am fine when I eat the foods I am meant to, but if I slip up I defiantely pay for it.
Good luck – get yourself some books and try everything your doctor suggests. I would also look into seeing a nutritionist – when you change your diet dramatically you can suddenly find yourself without the nutrients you need.
Post # 7
I have Crohn’s disease. I was diagnosed 2 years ago, and have had problems my entire life. Honestly, it was a relief to get diagnosed, just to know what was wrong with me.
For me, diet is a constant struggle. Gluten and dairy really cause me to have problems, but it’s really hard to cut those things out of my diet. I find exercise, drinking lots of water and eating healthy really helps. I work hard to maintain a healthy diet so that I don’t have to get on medication just yet.
If you have any questions feels free to PM me! Good luck and remember that you can still live a wonderful life with this disease!
Post # 8
Three of my cousins have Crohn’s and two of them have found becoming a vegetarian really helped their symptoms.
I have IBS and lactose/fructose intolernace and will totally agree with @LeahP that if you can stick to the diet that works for you, your world is a much happier place.
Hugs and good luck!
Post # 9
My dad has had Crohns for about 20 years now. For the most part, he is fine (takes these huge horse pills that I could never swallow, though). He just is careful about eating certain things, like popcorn and nuts. Once you figure out the diet that works for you, it is just a matter of watching what you eat and chewing things well.
Post # 10
Hey hun I have Ulcerative Colitis and half of my Dad’s family has Crohns. There are a lot of support groups out there if you needed someone to talk to. My dad cousin has had to have her entire system redone twice shes doing well now. I wish you luck and hope you start to feel better!
Post # 11
My hubby has it. Like everybody says, diet was huge for him. We both actually took a food sensitivity test to see what we shouldn’t be eating, which helped a lot. Another big trigger for him was stress. He’s been taking all sorts of meds, right now the big one is humira. He also would alway s look for drug trials.
His crohn’s ended up being very severe, so he had a colostomy recenty. They’re diverting in hopes that it will heal up and only be temperary. He’s doing amazing now since his surgery. Hopefully you won’t have to come to that.
Feel free to PM me if you want to talk or have questions.
Post # 12
My FI was diagnosed with Crohn’s last year – we are having a lot of struggle keeping it under control. He got the flare up under control when he was first diagnosed and was good for a year and now he is back at it. The Dr. says that stress can play a big role in the flare ups – we laugh about it (sometimes you have to) and somtimes he calls me ‘the abcess’ because marrying me is the stress in his life. lol.
we are hoping to pain in check for the next month to get the wedding and honeymoon over and then we are going to be ni full swing with diet, meds, and possibly surgery.
It is a scary diagnosis, mostly because it can be different for everyone. I still don’t know a lot about it!
All the best.
@LeahP: Can I pm you too?
Post # 13
Crohn’s is tough but you can still live a good life with it. My Fiance was diagnosed when he was 13 and is now 28. He has had 2 surgeries, been on different medications (steroids, remicade, and now on Humira which is fantastic!) BUT he has made it very far in life…he went to a great college, law school, passed the bar exam, and is now a prosecutor with a private practice as well! You learn to manage your symptoms and stay away from foods that will exaccerbate it (nuts, corn, popcorn, etc.) He has inspired my love for nutrition and I went back to school after I met him and got a degree in nutrition and am now in my dietetic internship and will be a registered dietitian in a few months. Diet is important as well as a good medication that works. There are a lot of support groups available (he subscribes to a yahoo group) and the CCFA is great too. Let me know if you need anything or if there’s any information I could give you. I hope you feel better soon!!
Post # 14
Thank you all so much for your support!
I think the scarriest thing is learning what foods trigger me. I’m going to start keeping a food journal, but it makes me nervous trying to learn what foods don’t work for me. It’s kind of overwhelming. I know that in time I’ll have it down, but for now it just seams daunting.
Again, thank you all so much for the responses and advice! It’s encouraging to know that once you get on the right medication and adhere to a proper diet that a happy day-to-day life is still possible.
Post # 15
@Beesgf: Yes! You can absolutely PM me! Sorry, it took me like a month to reply!