Crohns and Colitis Exchange

My first thought is since I've heard more stories than I can remember of misdiagnosis, when it comes to trying to figure out whether you have Crohn's or Ulcerative Colitis, you might want to get 2nd or 3rd or even millionth opinions after your first diagnosis. I only hope they diagnosed my form of Colitis correctly, I have my doubts about it at times, since I chose J Pouch surgery and am anything but happy with the results. Sorry about talking about my ordeals here with this miserable disease. If it is Ulcerative Colitis though Arbob5 has been reporting good results with her diet here. There's several ways you can go, and several diets you can find via google.

The IBD-9 is to measure an autoimmune response.. That's one of the tests that showed I had Crohn's. For Crohn's I know my Dr wants 3 tests showing Crohn's, just to be sure. So I had an IBD-9 come back positive for Crohn's.. I had CT that showed Crohn's and I had a colonoscopy that showed Crohn's

I was diagnosed with UC 3 years ago and it has been a battle all the way. But, I have a great GI who has guided me through my flares, my ups and downs, changing meds and finally finding a "system" that works for me. I give him all the credit.

Miserable says I found good results through my diet, but this is only partially true. I think eveyone can tell what foods do or don't agree with their digestive systems. So, we try to stay away from them. Not always possible because eliminating all of the good stuff from our diets is really difficult. So, I have learned what I can and can't eat, BUT, my meds have gone "hand in hand" with that. I'm on Lialda (which is mesalamine in pill form), I was on prednisone but have recently FINALLY gotten off of that drug, and my "favorite", is probiotics, namely Dr. Swanson's Ultimate Formula Probiotic. Also, Lomotil was extremely helpful for me when my diarrhea was very severe. I'm not on that med any longer either. Now don't get me wrong...probiotics don't work for everyone, but they have helped me tremendously. My GI was kind of a non-believer in probiotics, didn't seem to have an opinion one way or the other, but he sees how much they have helped me. You can order them on-line at www.swansonsvitamins.com. $14.98 for a 30 day supply. And a complete money back guarantee if they don't work for you. So what have you got to lose, right?

Everyone is different. We have to "work" with our systems to determine what is best for us and what does indeed work. I hope if you don't have 100% confidence in your GI, maybe you should try to find another one. That is up to you. But remember this...there are so many meds out there that it is a process of trying to find the ones that work for us. That can happen quickly, or take quite awhile. And sometimes, unfortunately, none of them work. Then it's on to other procedures, usually surgery. But that is usually when nothing else has helped. And again, remember that everyone is different.

Please try to think positive (I know that is VERY difficult), but that plus trying to see the humorous side of every day occurances, really does help. And remember, we are here for you. We all try to help each other in any way we can. This site has been a tremendous help to me. So, keep us posted on how you're doing. We really do care. God bless.

Ok.. I must have been tired this morning.. I totally read your post wrong, lol I thought you asked what the IBD-9 panel was.. I've been taking waaay too much call at work. I think it's time to get more sleep. Anyway, I hope you get the answers you want.. I think you're safe with a GI specialist. That's what most Colitis Dr's are from what I understand. Maybe I'm wrong. Anyway, good luck!

Hi Arbob5, I see that you speak very highly of the probiotics. I've had UC for about 2 years now. Currently on Asacol and Remicade. I never really have flares and it seems to be pretty mild except for urgency and gas/bloating/cramps. I rarely have blood but sometimes mucas in the stool. I don't seem to have issues with diarrhea but mostly I have constipation issues which will turn into diarrhea eventually. Anyway my question for you (if you know) are the probiotics mainly for diarrhea? The are pretty cheap so I'm willing to try but do you think it is a waste of time for my main symptoms?

Probiotics are not necessarily only for diarrhea, but your entire digestive system. My neighbor has Crohns and she swears by these probiotics, and her main problem was bouncing between diarrhea and constipation. But again, as I mentioned previously, everyone is different and what works for one doesn't necessarily mean it will work for someone else. But, I think we all need probiotics for digestive health in general. My opinion again.

I say give them a try...money back if they don't work so I think that says a lot for the success of these wonderful little capsules. That's my personal description of them!

Let us know how you're doing. We all care here and help each other...we have so much to learn from everyone and get great tips on so many things. Let us know, OK?

Hi, arbob! I just was recently diagnosed with crohn's, and my Dr. put me on Lialda and Entecort. I was also taking Lomotil, which was extremely helpful with my diarrhea. I am also taking a Naturade Probiotics, 30B. I take 60 grams of whey protein powder everyday as well. I'm on a low residue diet, but make exceptions once in a while. Learning what to eat and what not to eat has sometimes been a painful experience. I am going to check out the probiotics that you are taking, as mine are quite expensive. I feel better, and the diarrhea and pain has stopped. It was nice to read all of the posts here, and see that I am not alone with this disease, and that the treatment that my Dr. has me on is very similar to yours. Thanks for listening, and sorry about the long post.

If your probiotics work for you, that is good. Different brands work for some and not for others. Align really never did much for me but I know several people who swear by them, as I do about Dr. Swansons, which are somewhat more inexpensive. They do work for me.

You seem to be doing very well. Diet is important too...and I agree that is is very difficult. So hard to give up something we really enjoy eating. Funny thing is, I find that one of my favorites, Baked French Onion soup, bothers me sometimes, but not all the time. I do try to stay away from it, but every once in awhile, I just gotta have it. And sometimes I suffer as a results of lack of willpower!!

Hope all keeps going well for you. If you do decide to try Dr. Swanson's probiotics, let us know how you're doing, OK?

I will keep you posted! Thanks so much for responding!
And chili is my downfall on this diet!

I hear ya! Love chili too. Can you imagine both together? Egads!

I have been using the Dr. Swanson's probiotics for 2-3 weeks now. I don't really feel any change with them. I have tried Align before as well. I really haven't seen much change with anything (prednisone, lialda, asacol, remidcade, entocort, probiotics, SDC diet.) I keep having this feeling that I have been misdiagnosed. I went to the doctor originally because I had very bloody stools every time I went to the bathroom. I think the asacol and lialda has stopped this. I never had a flare, did not lose any weight. But shortly after I developed urgent and frequent bowel movements. I also get gas and mild cramping. I am going to my GI today for my next remicade session and to speak with him. I have no idea what's wrong with me but for some reason it doesn't seem like UC to me because nothing has helped. But hey, I'm no doctor.

Let us know what your GI has to say, ok? I think sometimes we all feel we've been misdiagnosed. That's because we all have our own individual "symptoms" that seem somewhat out of the ordinary. That's only my opinion. I say this tho because an acquaintance has been diagnosed with UC also, and while we have some similar symptoms, diarrhea, of course, I don't have bloody stools, she does, I have some cramping, she has none, I used to have some nausea, she does also, but there are just little things that seem to be our own. It's frustrating, that's for sure.

I think with some people it takes a little longer for probiotics to work. It happened within a week for me, but I know for others it takes longer. If you're not feeling a difference in a month, remember that you can get a full refund back. That's such a good offer, because I know they don't help everyone. So take advantage of it if you have to.

Again, keep us posted. We're here for you.

I didn't do the probiotics....I just changed my diet completely. I already didn't eat processed foods, but now I only eat meat, veggies, and fruit. I think that has made a good difference for me. I still once in awhile will have some grains, but infrequently. I found that peanut butter really hurts my stomach so I stay away. I do agree that everyone is different - but I also believe there is something to this diet thing.

How long after you changed the diet did you notice a change? I tried the SCD diet for about a month and I did notice somewhat of a change but I also believe it was because I was eating significantly less. Ive been overweight all my life so diets are not the easiest thing for me to stick to. I wish I could just starve myself so I would lose weight and have no UC symptoms.