New member living with Crohn's for 17 years now

Hi everyone!

Just found this site and wanted to stop in and say hello and share my problems with all of you

My name is Keith. I'm 45 years old and have been living with Crohn's for 17+ years now. I've been on Pentasa for the last 7 years and more recently my GI doc put me on Entocort (3x daily) for a recent flare up and loss of weight. I lost over 44 pounds in 1 year. He wanted to try Entocort because unlike other steroids, this goes straight to were the problem is in my digestive track and has less side effects. Here's the rub. On some days i feel pretty good. On other days, like today, i have sharp abdominal pain that feels like my lower abdomen is expanding like a balloon. Then it goes away for a few minutes and it continues. My appetite is better than it was when i had the flare up over a month ago, but it's nothing like it used to. I used to be able to sit down to a buffet and eat 3-4 full plates of food but now i pick and peck at my meals like a bird. And when i do eat, it brings on instant pain. This seems to happen with anything i eat. The worst pain always seems to be followed by all day bouts of diarrhea. Some days i have normal stool, which is what my doctor said the Entocort should help with. The inconsistency is what is getting really frustrating for me. Good days followed by bad days and i have no reason why? I'm due to see my doctor this coming monday and i have no idea what he's going to do to me when he hears my month worth of Entocort isn't getting the job done. He'll probably want me to go in for surgery.

I'm sure my problems sound a lot like a lot of people here so i'm really curious how you are all getting through it and dealing with it? Do any foods or supplements help you curb these side effects? I've been trying to avoid a lot of foods i know aren't going to help me but even the safe mild foods are causing me intestinal distress.

Thanks in advance for all of your assistance!
-Keith

I have agree with Zanne, sounds like you might have some bacterial overgrowth going on too. I get that every so often, and they give me a 10 day course of Cipro, and it knocks it right out of me. I am wondering if the good day/bad day could be the result of something you are eating. Sometimes I will get attacks like that, and generally I find something I ate upset the apple cart. Welcome to Healingwell by the way. Hugs!

Hey All...

Thank you all for the comments. I'm sorry i didn't get back and reply sooner, i was having one of my bad days and didn't get back to the computer.
One important piece of info i left out in my original post was that i was placed on Entocort because my doctor did find a partial bowel obstruction and a lot of inflammation. He was hoping the Entocort would ease the inflammation and maybe un-kink any plumbing or at least open it up and make it more comfortable for me.

I think you are right about the eating causing me to go out of whack. Sometimes i'll eat something that never used to bother me and then it drops me to my knees. It gets so bad that only lying down helps. Some days it scares me so much i won't eat at all for fear of creating more issues. It seems like almost anything i eat now causes me some form of discomfort. Usually when i want something lite i'll have a bowl of cereal with Lactose Free milk. I can usually get through that fine, but the wife wants me eating more than just cereal. Tomato and Pineapple juices are my favorite juices of choice. I read that pineapple also helps to relieve gas and bloating. It doesn't make things worse so i always keep a bottle in the fridge.
I also need a B12 shot once a month which the Mrs. is happy to stick me with.

Oh well.. today feels like one of the better days, but i still feel pretty weak. Probably from not eating.

Bosoxx some folks find that the SCD diet works for them, but not all. I am one that finds it too restricting and too much work for my schedule. I follow a low residue diet all the time and that works well for "me". Its easy to chew and easy to digest. The tomato or pineapple juice you drink would really upset my stomach alot, and I am considered in remission right now. They would both be too acidic for me. But hey if they work for you:)

I think diet is a very individual thing for us Crohnies, what works for some doesn't always work for all. Hope you get feeling better. Hugs!

Hi Bosoxx,

I am also going through partial obstruction. It started in August and had been every day until finally in this first week of Oct, it's been getting better. I finally haven't had an ob in about 4 days!!! I went on prednisone, changed my probiotics, took oil of oregano 2 drops twice daily for 1 week (powerful antibiotic which I think ended helping the most), ate lots of soft natural foods and gluten free, and continued with my usual regime of pentasa, chamomile tea, decaf. green tea, digestive enzymes, vitamins, etc.

I saw a surgeon and decided to get the stricture and CD out.

I tend to follow a natural, nutritious and easy-to-digest diet: chicken, fish, potatoes, sweet potatoes, greens (pureed if I can't tolerate them otherwise) organic snacks, honey instead of sugar, no dairy, only sourdough white or rye bread, no nuts/seeds.
Try cutting out processed food, sugar, and maybe go gluten free for a few weeks.

Hope you feel better soon!