Default Style Register
Daycare.com Forum
Natural, Holistic and RAW Lifestyle>Crohn's Disease Anyone?
daycarediva 10:56 AM 09-06-2013
I have had issues with (what I thought to be/was diagnosed as having) IBS my entire adult life. In the last 6ish months, it has escalated to the point that I made an appt with my doctor to have it checked out. I had a barium xray done today, as well as lab work. I was put on a prescription anti-diarrhea med and prednisone that tapers up over the next 10 days and PRN vicodin. Then I have to have a colonoscopy done. (EEK, the barium enema was BAD ENOUGH).

There is blood in my stool (sorry, tmi) and I have ulcers in my intestine.

I have a very healthy diet, manage stress well, I don't smoke and only occasionally drink. I also have PCOS (poly cystic ovarian syndrome) so the combination of cramping in my abdomen is pretty bad.

Anyone have this? know someone who does? Does a diet change help? Hurt? I am super concerned about the prednisone, I was on it once before for severe pneumonia and gained 15lbs in a month.
Reply
Play Care 11:06 AM 09-06-2013
Originally Posted by daycarediva:
I have had issues with (what I thought to be/was diagnosed as having) IBS my entire adult life. In the last 6ish months, it has escalated to the point that I made an appt with my doctor to have it checked out. I had a barium xray done today, as well as lab work. I was put on a prescription anti-diarrhea med and prednisone that tapers up over the next 10 days and PRN vicodin. Then I have to have a colonoscopy done. (EEK, the barium enema was BAD ENOUGH).

There is blood in my stool (sorry, tmi) and I have ulcers in my intestine.

I have a very healthy diet, manage stress well, I don't smoke and only occasionally drink. I also have PCOS (poly cystic ovarian syndrome) so the combination of cramping in my abdomen is pretty bad.

Anyone have this? know someone who does? Does a diet change help? Hurt? I am super concerned about the prednisone, I was on it once before for severe pneumonia and gained 15lbs in a month.
My twin sister has Chron's. She has what is considered a "moderate" case and has had two surgeries to remove sections of intestines - the most recent was last summer. I know she was on Humeria and does take steroids but not all the time. Oh, and she has said the worst part of the colonoscopy is the prep part, the actual procedure isn't a big deal (I think they put you under? ) Sending good thoughts your way!
http://www.crohnsandcolitisinfo.com/...ast_ggl_035467
Reply
daycarediva 11:24 AM 09-06-2013
That is what I am concerned about. I need to find a substitute asap. The technician that did the xrays said that they don't look too good and asked why I didn't come in sooner. My doctor won't call me back until Monday, and I have an appt with a GI guy but that's 2 weeks out.
Reply
mamac 11:41 AM 09-06-2013
I don't have much experience with Crohn's disease other than a friend that was a co-worker of mine years ago. She worked the call center and I was her emergency back-up when she needed to use the bathroom immediately. I don't recall how severe her's was but I ended up visiting a few years after moving away to find that she had had parts of her colon removed. She looked great (was always underweight) and she said she finally felt normal.

As far as the prednisone, I have been on that every day for the past 25 years. I've found that as long as I am on 10mg or less per day I don't experience any weight gain or fluid retention. 20mg will really give me a chubby face and 40mg...forget looking cute. During my most severe illness I actually got stretch marks on my thighs after I was hospitalized years ago and they pumped my body full of it. I went from 110lbs to 140lbs in 8 days.(I wouldn't worry about that though seeing as your dr's are tapering the dose up.) Any weight you gain shouldn't be a problem once the dose is lowered because most of it will probably be fluid retention anyway, unless you give in to the side effect of having an increased appetite. (I once learned the hard way.)

Once your illness is under control your dr should be able to lower the prednisone back down again and possibly even eliminate it all together. My dr's have tried to take me off of it but my body won't cooperate. Currently I am on 7.5mg/day and I am able to maintain my weight of 108. (until the cold weather gets here and I put on my "winter padding". lol ) I know all the literature out there says that prednisone is the evil drug that shouldn't be used long term, but I have had no serious side effects. I have regular bone density tests and they've all come back at normal or above for my age.

Good luck with your diagnosis!
Reply
Scout 01:04 PM 09-06-2013
Originally Posted by daycarediva:
That is what I am concerned about. I need to find a substitute asap. The technician that did the xrays said that they don't look too good and asked why I didn't come in sooner. My doctor won't call me back until Monday, and I have an appt with a GI guy but that's 2 weeks out.
Maybe it's just me but, that tech probably should not have told you anything? I would think that would be a violation of some sort, especially if they are not a physician and all it accomplished was making you worry for the rest of the weekend!

My SIL has Chrohn's and is ok most of the time but, when she does has flare ups, I guess it can be pretty bad. She does have to use the restroom right after eating most times and does get the colonoscopy's done frequently for her age as well. She too, hates the prep more than the test! I hope you feel better after they find a treatment plan that works for you!
Reply
MrsSteinel'sHouse 01:10 PM 09-07-2013
My Aunt has it. I was just there. Yes, she is very cautious on what she eats. She is in her 70s and has had it all her life. Diagnosed in her 30s. Chicken, white rice, green beans and bananas are her staples.. like almost every meal. Oh malt o meal for breakfast.
Reply
Michael 01:33 PM 09-07-2013
My brother-inlaw has it. Please consider a gluten free diet. It's worth a try. I was having intestinal issues also for many years and it all stopped when I got rid of the gluten. If it sneaks into my food even in small amounts I feel it. Lost 20 lbs along the way.
Reply
Cradle2crayons 01:59 PM 09-07-2013
I have IBS but I've taken care of many with crohn's.

Diet change will likely make a dramatic difference in your symptoms.

As a chronic steroid user myself, I understand your concerns. I'm thankful I don't have major side effects on it or it may just be I've been on it for so long it all seems normal??

Once you are controlled, you may come off the steroids and if diet controls it well in yur case, prognosis is good.

Treatment has come a long way with it, but just like anything else, the goal is to keep your intestines as healthy as you can for as long as yu can. Just like anything else, over time and with poor control, it gets scarred up and e prognosis isn't as good.

I'd DEFINATELY recommend what Michael said. There are also specific triggers that vary from person to person so keeping a food log would be helpful as well so when you want to enjoy a treat or eat out, you know what does and doesn't bother you.
Reply
Sprouts 11:14 PM 09-07-2013
My dr mentioned ulcers are related to bacterial infections so are now treated with antibiotics. But if you have a high amount of bad bacteria in your intestines a good probiotic like florastor and change of diet should be the first thing you try before surgery. Do an elimination diet, cutting everything, like dairy and gluten as Michael said.

http://youtu.be/J4DRUdtAWqM

http://youtu.be/ZAA31-vZNR8

I hope these help! Feel better
Reply
sahm1225 02:38 PM 09-08-2013
I'm not familiar with this but just wanted to jump in and send prayers your way
Reply
daycarediva 07:23 AM 09-09-2013
Well, my dr called, the xray was not great. I have a colonoscopy scheduled for next week. I eat VERY healthy, almost all organic with almost no processed food. He said diet log as well. My staple breakfast is greek yogurt with berries, egg whites. Lunch is grilled chicken or fish, veggies or salad. Dinner is lean meat, veggies, salad. Notice anything missing?? No grain. Makes me gain weight VERY fast. Snacks are hummus & veggies or fruit.

I see a nutritionist tomorrow evening, my dr said no coffee or alcohol, which is the only thing I do consume that are obvious no nos. My training is stopped ( ) as well. I feel like a slug today! .

Thank you all! Ill keep updating as I get more info.
Reply
Cradle2crayons 02:20 PM 09-09-2013
Originally Posted by daycarediva:
Well, my dr called, the xray was not great. I have a colonoscopy scheduled for next week. I eat VERY healthy, almost all organic with almost no processed food. He said diet log as well. My staple breakfast is greek yogurt with berries, egg whites. Lunch is grilled chicken or fish, veggies or salad. Dinner is lean meat, veggies, salad. Notice anything missing?? No grain. Makes me gain weight VERY fast. Snacks are hummus & veggies or fruit.

I see a nutritionist tomorrow evening, my dr said no coffee or alcohol, which is the only thing I do consume that are obvious no nos. My training is stopped ( ) as well. I feel like a slug today! .

Thank you all! Ill keep updating as I get more info.
I've had lots of crohn's patients who, after eliminating things one by one, discover that salad causes HUGE flare ups. Also, lots of other raw veggies. And even red meat (beef).

And in some people, grains cause huge flare ups.

The important thing is to realize what flares up some, may not flare up you.

In my experience top triggers seem to be raw fruits (unkess pealed) and veggies (especially raw ones with peeling like cucumbers), fried food or foods high in oil content, nuts of all kinds, salads, whole grains (high fiber makes symptoms worse), seeds, tomatoes, coffee, chocolate, carbonated beverages, and dairy.

So, when you do your food log, try eliminating that list first and document how YIUR symptoms improve or not.
Reply
daycarediva 10:33 AM 09-12-2013
I spoke to a nutritionist who told me to cut coffee, tea (already did after speaking to the GI doc) add in bread, pasta and rice (WHITE!) and cut out ALL VEGGIES. Then to slowly add them in 1 at a time (5-7 days in between).

I FEEL AWFUL! I hate eating this way and it's driving me crazy. Today it was hard to get up to work out, I feel sluggish and dull and I have never in my life eaten so much crap food. I seriously almost cried today when I made white toast for breakfast. NO improvement of symptoms at all so far. I also feel hungry ALL the time (prednisone or absence of veggies? idk) so, here's me throwing a pity party over food.

My dh was cracking up though and said I sound like a day care kid whining about what's on the menu. SOOOO TRUE!
Reply
MsLaura529 02:47 PM 09-12-2013
My DH has ulcerative colitis ... I am not positive how different crohns and UC are, but he has been basically put on the same diet as you - no whole grains or high fiber foods. He CAN eat veggies, but they cannot be raw, they have to be cooked/steamed to a very soft texture. He also gets infusions of a medicine called Remicade once every 3 or 4 months and is on a prescription medication (Asacol) every day - he has been on the highest dose for about a year, with no signs of being able to drop it soon.

I'm sorry you are going through it ... I know UC can be awful for my DH at time.
Reply
Tags:crohn's disease, gluten free
Reply Up