Fellow crohnies please help!

Hello my name is Rob,

I'm in a situation and could use some advice and direction. I understand every ones body is different but I may get a good start here with as bad as it is. Short version is it started when I was 9. I started the symptoms and getting crohn's then was misdiagnosed for 3 years which in return made it even worse. When I finally was diagnosed with crohn's, ulcerative colitis and IBD 4 years after I was in critical condition and stayed in the hospital for 3 weeks. I have gone through all the treatments from pills to remicade years ago and took a break to try to do a more natural method when I was doing pretty good. It seemed that once a year though my body would no matter what go into a flare. I have never had surgery and the only drug that helps is prednisone which affects my mood greatly and causes my body to break down and break out. Just recently I went into a flare that turned down the same direction as when I was first diagnosed so I started seeing my GI doctor to get on track. He placed me on prednisone, lialda, and omperazol for stomach acid until my humira shots came in which for a little while I was taking the shots and all the above. I just weened off of the prednisone and stop taking the lialda. I know for fact that diet has a big part on this and have a tough time with it. Also I am addicted to dip and cigarettes when I am stressed out and lately it has been alot. My focus is to get off of those and get on a good diet and fix this for awhile. Exercise helps but I haven't been able to do much since the flare so I have avoided this. Since the ween off of prednisone I have begun to again get the symptoms of flare and have a hard time holding in my bowels (which is ridiculously embarassing and degrading) and find it hard to stay positive because of such obstacles. This makes me think hard about dealing with people and scared to approach anyone at this point. Im at a loss on what to do and have no idea on what direction for diet and recovery to turn. I currently take every day a multivitamin, fish oil, and calcium with d3. I am in a position of moving, going to school, working full time, and this. Any suggestions? Any advice at all is helpful and very much appreciated my friends.

Why did you stop Lialda?
It sounds like you may need to find a medication regimen that works to keep you stabilized and then stick with it. Then once things are stabilized you can focus on diet, which I agree can play a big role in how you feel.
Stay on your Meds.

I stopped Lialda because my GI said to stop taking it because I was doing well and to not take it with the humira.

I see. So the humira doesn't seem to be working for you??
Have you had a chance to discuss with GI yet?
Are you currently trying any specific diet?
I stated Paleo diet about 4 mo ago and feel quite a bit better. But it is a lot of work and if keeping weight on is an issue for you it may not be great because most people tend to lose weight on it.

Hi Rob
I understand about the feelings with urgency.I don't have diarrhea,never really have from CD,but I do have the urgent moments.Have you identified what causes these urgent moments?I can't have coffee,for example.Since you are moving,have you contacted a GI in your new locale?

Please don't blame YOU for what your body is going through.You have dealt with this from age nine and you are going to school and working full time.That is a great accomplishment!

I have the urgency thing,when I got a go,I gotta go!and this is even though I,m feeling pretty good just now and now think it's a permanent part of having crohns.

This just started happening again a few days ago so I haven't talked to the GI but from past experiences I have a good feeling he is going to say I haven't been on the Humira long enough give it some time. As for the diet I have been doing a good amount of research and am trying to figure out what I could place somewhat like the Paleo diet but fresh fruits and vegetables really affect me at this point in time.

Dave,
I haven't quite figured out what offsets the crohn's because my body tends to do well on certain items then another day react horribly to the same item that why I was looking at the Paleo diet to be easier on it. Problem is it is very hard to do a trial and error phase when your system is really messed up.
I'm not moving far so I am able to keep my same GI doctor

Surfin,
If you do decide to go Paleo: i mostly juice my fruits with veggies in morning, and then any other fruit (usually one piece) is Low FODMAP.
And the veggies are always well cooked, mostly roasted root veggies. I was actually a bit surprised by how much my bloating, pain and gurgling decreased with the Paleo diet. My Crohns is mostly the stricturing kind, not a lot of diarrhea.
I am not on Humira, but I am on Remicade... Even with Remicade I also have to stay on Budesonide and Lialda. It seems like a lot, but it keeps me moving forward.
It was tough to decide whether to stay on so much meds, or just have another resection (Ive had one so far), but in the long run decided it was better for me to hold onto as much gut as I can for as long as I can.

I know I can not juice because the fiber makes it hard on my digestive tract but I am really interested in this. I use green tea with lemon and ginger root to help but as for other items I have not got into a regular routine. Organic meats and certain items are really expensive and I am not in a position to buy them as I am on a budget at the moment till I am done with schooling. I know and applaude your courage and positivity. Keep on my goal is to beat this. My fear is having my colon completely removed and the bag on my hip.

Surfin,
Juicing actually removes all the fiber, so it is typically very easy for crohnsies to tolerate. But it can be expensive.

It is unfortunate that it costs so much to eat well,i.e. organic. I am fortunate to work in a health food store and I receive a discount,otherwise I would not be able to afford such foods.

I follow the SCD.I have been following it for approx. seven months now.I like how I feel on this diet.I have been very strict and have decided to cheat a little this Holiday season.I definitely have noticed when I stray.My one year mark for my resection was this past Tuesday and I celebrated with a GF pizza and a beer!

I hope you find a diet that suits you.