What can you tell me about Crohn's Disease?

[maslex]

My sister has been sick for the last couple of months and was just diagnosed yesterday with Crohn's. I've read up a little bit on it but was just looking to see what your experience has been. Whether you have it or know someone who does.

Thanks

 

[Realfoodfans]

I was diagnosed last November. To be honest it was good to have a diagnosis after I'd been so ill for so long and not knowing what was wrong. This is the longest time I've gone in 9 years without serious infections and hospitalisation. I found keeping a food diary and record of reaction really helped. The big help to me was being found lactose intolerant and discovering lactose free milk and butter.

 

[Aimeedyan]

I've had it almost 15 years; was dx while in graduate school. The thing with Crohns is that the disease can be so vastly different from person to person so it's really hard to compare to others. Because the disease affects the entire digestive system (mouth to anus), the disease can manifest itself in a different place on each person.

I had a double colon resection about 8 years ago or so - that was by far my sickest days with several hospitalizations. Through the years, I have had foods I can't eat and then a year or so later I can eat it again. She'll start to figure some of that out along the way. No one person can tell her what is safe to eat and what is not because the most random things can be a trigger.

The immune suppressant biological meds have been good for me; I've done Remicade, Humira, and am now on Cimzia. My biggest advice is that she find a GOOD GI that she really likes. Not just the doctor but the whole office staff and nurses. If she has a mild case, she may rarely see them but if her disease is moderate/severe, she'll see them often - I was seeing mine weekly for a season.

I'm sorry for the diagnosis but I also remember the feeling of relief when I finally got a name for what was making me so sick. It's a bittersweet moment when you finally hear what "it" is. Best of luck to her.

 

[PlainJane]

I know two people with it. They have vastly different cases. One person had to have surgery and does have some complications from the surgery, but overall lives a very normal life. The other person I know is pretty frequently hospitalized, has an ostomy bag, and has had to go months on a liquid only diet multiple times (per doctor’s orders from a flare up).

I’m glad your sister has a diagnosis. The best information you will probably get will most likely be from your sister, just because it affects people so differently.

 

[CynBeth]

My husband has it. He was diagnosed as a kid and is in his 40s. He had surgery as a teen to remove parts of his colon plus had an ostomy bag but it was reversed. He has been on various meds. He had tried the Remicade infusion but it severely lowered his immune system to where he was getting colds, etc a lot so had to stop. Luckily what meds he is on now works well to where he rarely has flare ups. Some days are better than others with how much he has to go to the bathroom. He can pretty much eat normally but is allergic to dairy and luckily our grocery store carries non dairy and soy products and he also can’t have any hot spices like black pepper. Disney is so great with the allergies when we visit. Not to scare anyone but there are a few bad parts. He has to get colonoscopies every 3 or 4 years because people with Crohn’s are more susceptible to colon cancer. The other bad thing that has only happened to a few people we know who has this including him is about 3 or 4 years ago it was discovered he has cirrhosis of the liver. The docs are not sure if it is because of being on meds for so long, if due to a specific med, or because sometimes if you have an issue with one organ of the body there can be an issue with another. In addition to his GI doc which he sees every 6 months he has to see a hematologist every 6 months and liver doc once a year and get a scan of his liver once a year unless his levels in blood work which he gets every 3 months drastically were to change. The docs don’t know the progression of this. He may need a new liver in 5 years, 10 years, or never.

 

[Klayfish]

A lot of good info here. I have it. No clue how long I've had it, but was diagnosed 15 years ago. As noted, nutrition control is HUGE. Learn what you can and cant eat and stick to it. That's what was really my kick off to getting into health and nutrition like I am now. I know what I can and can't eat and it's been a huge difference maker. For instance, I haven't had a drop of caffeine in 15 years, and I don't miss it. There are some really good medications out there. I was on Remicade, but started having really bad reactions to it, so I had to stop. I've been on Humira for about 9 years now and it's fantastic.

However, as others have said, it effects everyone very differently, so your sisters' case may be very different than mine or anyone else here. Find a good GI, listen to the doctor and your body and get the nutrition part down. One thing I can tell you is that when she gets it under control, she'll feel SO MUCH better and it's a relief beyond description.

 

[design_mom]

I've had it for about 12 years. My case is "mild to moderate," but believe me... I wouldn't want to see severe. Overall, I do pretty well most days but some days are bad. I still have trouble figuring out what food (if any) are going to set me off. My gastroenterologist says there's nothing specific you need to avoid, but that different things affect different people. In general, I've found I feel better when I limit sugar. Sometimes I have trouble with broccoli, popcorn, and dark green lettuces... but not every time. (Enough times that I think twice before eating them though.)

 

[powellrj]

My DS has had it for maybe 15 years. In the beginning he was so sick they talked about a fecal transplant, he seems to know what causes flairs, so between that and 4xs yearly infusions, he is doing much better.

 

[Realfoodfans]

I've had it for about 12 years. My case is "mild to moderate," but believe me... I wouldn't want to see severe. Overall, I do pretty well most days but some days are bad. I still have trouble figuring out what food (if any) are going to set me off. My gastroenterologist says there's nothing specific you need to avoid, but that different things affect different people. In general, I've found I feel better when I limit sugar. Sometimes I have trouble with broccoli, popcorn, and dark green lettuces... but not every time. (Enough times that I think twice before eating them though.)

Definitely sugar affects me - I have major disputes with dietitians about what does and doesn't affect me! I was totally off gluten but now find a little does not generally affect me. My consultant advised following a FODMAP diet which I did but gradually tried bringing in foods that are avoided. It's tough keeping a diary but it works for me.

 

[Realfoodfans]

My DS has had it for maybe 15 years. In the beginning he was so sick they talked about a fecal transplant, he seems to know what causes flairs, so between that and 4xs yearly infusions, he is doing much better.

That's good to hear. Similar with me at the moment. They talked about removing the worst damaged sections of my bowel but with diet I'm doing so much better.

 

[Realfoodfans]

My husband has it. He was diagnosed as a kid and is in his 40s. He had surgery as a teen to remove parts of his colon plus had an ostomy bag but it was reversed. He has been on various meds. He had tried the Remicade infusion but it severely lowered his immune system to where he was getting colds, etc a lot so had to stop. Luckily what meds he is on now works well to where he rarely has flare ups. Some days are better than others with how much he has to go to the bathroom. He can pretty much eat normally but is allergic to dairy and luckily our grocery store carries non dairy and soy products and he also can’t have any hot spices like black pepper. Disney is so great with the allergies when we visit. Not to scare anyone but there are a few bad parts. He has to get colonoscopies every 3 or 4 years because people with Crohn’s are more susceptible to colon cancer. The other bad thing that has only happened to a few people we know who has this including him is about 3 or 4 years ago it was discovered he has cirrhosis of the liver. The docs are not sure if it is because of being on meds for so long, if due to a specific med, or because sometimes if you have an issue with one organ of the body there can be an issue with another. In addition to his GI doc which he sees every 6 months he has to see a hematologist every 6 months and liver doc once a year and get a scan of his liver once a year unless his levels in blood work which he gets every 3 months drastically were to change. The docs don’t know the progression of this. He may need a new liver in 5 years, 10 years, or never.

After so many painful colonoscopies I now insist on full anaesthesia. They are not happy about it but I couldn't stand another.

 

[pampam]

I was diagnosed as an adult. What has helped me the most is diet. I follow the Specific Carbohydrate Diet, with no cheating at all. Yes, it is restrictive, but feeling better is worth it. i've had people ask " Don't you miss eating the other foods"? and right away I think "do I miss the constipation, diarrhea, cramping, accidents, and tiredness? Nope. Don't miss it at all! Also, the book "Breaking the Vicious Cycle" has been invaluable. It was written by Elaine Gottshall, a dietitian, who explains that crone's is caused by bacteria in the gut that feed on certain sized carbohydrate molecules. If we eliminate those carbs the bacteria die off and the gut can heal. My doc was talking surgery, so I thought I'd try something less invasive, and began the diet. When he did his next colonoscopy, there was no crones. He couldn't believe it! He thought it must be in the small intestine where the scope could not reach. They say there is no cure for crohns, and that may be true,but if we don't have the symptoms, I figure remission might be almost as good.

 

[BLAZEY]

BIL has it. His triggers are raw veggies, alcohol and lactose (no dairy for him). I know he has infusions of Remicade every few weeks. It's part of why they moved back to Canada, as even with the really good insurance in the US, it cost them MORE out of pocket to get the drug from the pharmacy and the had to PAY at the hospital to have in administered. Here his supplemental insurance pays to more to cover drug and he doesn't have a bill from the hospital and doctor to administer it. Diet is a HUGE thing with Crohns. We make sure to have a portion of meals without his trigger food in them at family meals, just as we do for the members of our family with allergies.

 

[Klayfish]

I was diagnosed as an adult. What has helped me the most is diet. I follow the Specific Carbohydrate Diet, with no cheating at all. Yes, it is restrictive, but feeling better is worth it. i've had people ask " Don't you miss eating the other foods"? and right away I think "do I miss the constipation, diarrhea, cramping, accidents, and tiredness? Nope. Don't miss it at all! Also, the book "Breaking the Vicious Cycle" has been invaluable. It was written by Elaine Gottshall, a dietitian, who explains that crone's is caused by bacteria in the gut that feed on certain sized carbohydrate molecules. If we eliminate those carbs the bacteria die off and the gut can heal. My doc was talking surgery, so I thought I'd try something less invasive, and began the diet. When he did his next colonoscopy, there was no crones. He couldn't believe it! He thought it must be in the small intestine where the scope could not reach. They say there is no cure for crohns, and that may be true,but if we don't have the symptoms, I figure remission might be almost as good.

I haven't read the book by Elaine Gottshall, but I think I'd have to disagree that it's "caused" by bacteria in the gut. Unless something has changed, all the GIs I've consulted (and there have been a few) say the exact cause is unknown...much like the cause of RA is unknown...but it's an autoimmune disease. Crohns' is caused by the immune system, but there can be different "triggers" for flare ups...often food related.