New to Crohn's - Searching for Answers

Hello all.  I was just diagnosed with Crohn's Disease a week and a half ago after a colonoscopy.  I had been having some Crohn's symptoms about a year ago, and the doctor put me on 2 tablets of Lialda per day.  The symptoms went away for almost a year, and then they came back with a vengeance about a month ago.

I am now taking 4 tablets of Lialda per day and Bentyl as needed for the abdominal pain.  Sadly, these don't really seem to be working.  I continue to have horrifc abdominal pain with diarrhea every 3 days.  I guess this means I am in the middle of a flare.....I just don't know what to do.

I asked the doctor if there were any specific foods or drinks that I should avoid, and he said "anything that causes a reaction."  The problem is I dont know what causes a reaction because I can eat something one day and be fine, and then eat the same thing the next day and have the reaction.  He told me all of the common foods that can aggrevate people with Crohn's, but I just can't seem to figure it out.

How did you all figure out what foods and drinks to avoid?  How soon after you eat something does the reacation occur?  I think I am having trouble since the reactions have been happening every 3 days no matter what I eat.

Also, has anyone found that seeing a nutritionist is helpful?

Thank you in advance for any advice you may have!  I am starting to feel helpless although I am trying my best to stay positive.

Thanks again and I look forward to chatting with you!

 

GSD1234,

just wanted to welcome you to The Healingwell Site, it is an amazing forum & community. I'm sorry that you suffer from Crohn's. I hope that medications will help you.

I've had bowel problems for 43 years, then a few months ago my intestines just stopped functioning and moving anything thru. So, in May I had to have a ileostomy.

Again, welcome to this site.
Your Healingwell Friend,
Serenitee

Pelvic & bladder trauma & dysfunction, 2-bladder lifts, 2-rectoceles, vaginal vault, colon tore thru vaginal wall & then the colon and bladder fell out of my body, hysterectomy...this is just a few of my surgeries.

Serenitee:

I have a question and don't know how to reply directly to you or email outside of this thread so I apologize. But I read your surgeries listing under your name in the post above and my heart sank reading them. I was wondering how you knew or if you knew ahead of time when your colon was somehow affecting your bladder. I always feel intense pressure on my bladder and have been to the "female" doc a few times for the problem and have no other issues going on besides an odd shaped cervix that they thought was cancerous and in fact is not. But the pressure is only during a crohns flare up and I have to use the restroom a lot more often due to the pressure, almost like my bladder decreases in size. It's kind of hard to explain but I've never mentioned it to my GI doctor because I never put the two together. Could it be possible that during a flare up the inflammation is pushing against my bladder causing me to use the restroom more and have that feeling of intense pressure?
I know you're not a doctor or anything, I was just wondering if you were aware and reading your signature made me wonder.

Try the specific carbohydrate diet. You must be 100% compliant - no cheating. many people have had incredible success with this diet, or variations on it. give it time (it took me a year to get into complete symptomatic remission) and talk to lots of people about how to tweak the diet. I've never used any of the crohn's drugs though my GI wanted me to take pred and remicade (I had severe crohn's). I've been in complete remission for almost 2 years. You can get control of your body without drugs. The diet is not a cure - but it does allow you to manage your GI track so that things work normally again.

Hi GSD and Welcome!  I struggled with the idea of diet after I was first dx'd too.  Unfortunately, it is a learning curve.  I was told to make a food diary and keep track of foods that did or did not bother me.  I found that too black and white for my system.  I started keeping track of foods that Always bothered me (seeds, raw carrots, most any vegetable, soda and chewing gum), foods that only bothered me if I was already feeling sort of lousy and foods that never bother me.  I did not feel quite so limited as at the outset this way.

I stick with mashed potatoes, white rice, white bread, pudding, jello and baby food bananas when I don't feel well.  I also use Ensure to help out.  Those are pretty standard "safe" foods and you may also hear the term BRAT diet - bananas, rice applesauce and toast.  For me...applesauce does not work.  But I am one of the lucky ones who can handle dairy.

Everyone is different so it does take patience and experimentation---stinks but that was the only way through it.  I was diagnosed over 20 years ago and have been lucky enough to find my way around the diet.  I also noticed that the list does change a little over time.....I have taken some foods off my safe list over the years and a few things were added back in.

Hi GSD and Welcome!

When I was first diagnosed I read many of the diet books and found getting this broader perspective very helpful. I read makers, fodmap, paloe, low res, GAP, SCD, Life Without Bread and others. This board was very helpful for suggestions but the details I got from the books. After reading them all I decided on one of the diets. Then I committed to the diet. Once I was doing it for a while I had to make a number of tweaks to the diet. That is, still comply with the diet but eat more of one thing and less of another.

I do not think this is the appraoch that most take, but for me trying to figure out what to eat by myself was too tough. I took the approach that someone out there had it figured out.

This is not that straight forward as one diet will say one thing and the next will say the exact opposite and both will claim great success. So ultimatly I had to make a decision on one of them and just go for it. I was lucky the one I chose worked for me.

This does not answer your question but might provide some level of experience on an approach

Best

Dave

I did not know anything about any of these either. I mean nothing. However, I sure know a lot more now.

My thought process went like this. Once I had the diagnoses, and quite frankly getting a bit scared about what I was reading, I decided it did not matter what i had to eat or could not eat, it was nothing compared to being sick everyday. And I did not care what the doc said, I believe that what I put in my gut impacts the health of my gut. So I knew I was going to change my eating habits it was just a matter of what I was going to do. Although I love the folks here, because there was not one single answer (like this thread) I decided I had to do my own research. Given I was going to change, I felt for me, it was much easier to learn from something that has worked then it was to try and figure it out myself. So that is why all the research and books. I was searching for which one, not if I was going to do it.

You can see from this thread, that everyone is trying to help yet even with all their experience, they do not all agree. The biggest reason is that crohn's is so different for each person. What works for me, may not work for you. I am sure each of the suggestions, although conflicting, repersent what has worked for the person making the suggestion, but again unfortunatly it may not work for you. Just like the diet I chose.

Depending what path you take this decision could be a big deal. It could be the differnece between getting better and getting worse. Also some of the diets requrie that you change at some level virtually everything you eat.

The diet I do is called The Specific Carbohydrate Diet (SCD). This diet has changed at some level virtually everything I eat. And the auther of the diet says right up front that if you are going to do this, you must be fanatically compliant or do not bother. You will not get results.

So to answer your question. The diet I do works for lots of illness including autism, UC, acid reflex and crohn's. So it is not crohn's specific. I do this diet 7 days per week, 365 days of the year. I never take one meal off the diet. It took me about 6 to 8 months to go into remmission and that was about 10 months ago. As i have never strayed I do not know for sure what would happen. I have not used my best judgment a few times (like eating way too much cashew butter and honey cups) and even though they were on the diet, the week it took me to recover was a good enough lesson. If I can gete sick eating foods on the diet I am not even going to think about eating foods not on the diet.

As far as I can tell there is not majic pill to get better from crohn's. It seems that this is going to cost money and time no matter what. You did not get sick in a day and for most they will not get better in a day either. IMHO if you are a person that diet can help (like me) then I would way rather put my time, effort and money into healthy food than into drugs and sickness.

I must say this one last time out of respect for some of the great folks here. I am lucky. I found something that works for me. It may not work for you and for others here. So that fact that others have found a different path is no comment on them. In fact I am sure for some if they did SCD they would feel worse.

So I am not telling you anthing about you, I am just sharing about me.
I hope you find what works for you

Dave

BTW - I eat high fat, spicy with lots of dairy,...lol. I am sure most folks are cringing even thinking about it..

Hi GSD,

So sorry you have to be here!

Regarding diet, it's pretty much trial and error since ID can be so individualistic.

Many patients consult with a dietician and do find it helpful but the trial and error you may have to go through will likely be your best guide as well.

I'm also a firm believer in probiotics since research has shown that it can be a benefit for IBD in general....I recommend a good quality one (usually one that requires refridgeration) and taken daily and indefinitely even when you're in remission.

I myself am either allergic or non-responsive to traditional oral RX used to treat IBD so the things listed in my sig below are what I find beneficial for me....they can be used in conjunction with IBD RX as well...just remember what works for some doesn't work for all and often it's a combination of "things" that are more beneficial compared to just one thing.

Good luck and do lots of research...hope you find remission quickly!

Wow - I really appreciate all of the help! Although there are many different answers, it really does help to have lots of suggestions and options to try. I am starting to realize that this may be a long and winding road ahead of me.....

One more quick question at the moment.....has anyone ever tried or know anyone that has tried to LEAP testing with a nutritionist/dietician? This is another option I recently heard about and am wondering if there is anyone out there who has had succes with this?

I guess I am just trying to gather as much knowlede as I can since I am so new to this.

THANKS!!

GSD1234, welcome! I remember when I got diagnosed 4 years ago. I wandered around the grocery store with an empty cart wondering what I could and couldn't eat. In fact, tonight for dinner I treated myself to grilled chicken over spinach and am regretting it as we speak!

I found it extremely frustrating being told that everyone with Crohn's is different, keep a food diary and figure it out. Over time you'll get it, but in the mean time, its hard to accept that all you're limited to is a bland diet or the SCD (which didn't sound like any fun to me). I can tell you it gets better over time (or perhaps you just get used to it). Sometimes, like tonight, I break the rules and eat my "no" foods.

Here's a list of what I could eat when I was first diagnosed, you may still have symptoms with it, but hopefully not as bad! Keep in mind, its different for everyone.

- angel hair spaghetti noodles with spray butter and light parmigian cheese
- chicken noodle soup & saltines (I eat saltines all the time to help with nausea)
- surprisingly, I was able to eat certain types of frozen pizzas
- veggies: asparagus, squash and zucchini

I've been in a flare for all 4 years I've had Crohn's, but I only go to the bathroom on average 5 times a day instead of 20 now! And I don't throw up hardly ever anymore! :)