My Story

[MapleLeafGirl]

I have already had a few posts, but thought I would take the time to share my story. Since my teens, I have always had what I thought was a "sensitive stomach". I can trace it back to a severe bout of food poisoning (or was it - no one else got sick) from chinese food. Ever since then my stomach just wasn't right. I always had a lot of gas, it was kind of a running joke with my roommates in university. Then about five years ago I developed some hemmoroids. I blamed it on sitting on cold benches at my stepsons hockey games. Got them removed after the doctor did a sigmoidoscopy to rule out anything more serious as I was a little young for hemorroids (he didn't see anything). He sent them off to the pathologist and they found evidence of Crohn's. In the meantime, I had decided to go on a health kick and eat major salads loaded with sunflower seeds. Suddenly I had diarrhea everyday and couldn't figure out why cause I was eating so healthy (silly girl). Long story short, after a small bowel meal and a colonoscopy, my new GI confirmed Crohn's - just 5 cm at the terminal ileum. This was August 2006 and since I wasn't really having any symptoms after stopping with the salads, no meds or anything, just a few follow ups. Then in April 2009 I discovered what a pain Crohn's really was. I was in flare up but didn't really know it. I lost 20 pounds and I was only 105 to begin with. Ended up in emergency. My GI saw me that day and prescribed Budesonide - no effect. He did another colonoscopy and prescribed Prednisone. I loved it. It was the best I had felt in years. I didn't even realize how bad I felt until I was on it. I tapered off, but it all came back. So he put me back on, this time with Imuran as well and arranged for a CT scan. The CT showed it is still just the 5 cm at the ileum, but I now also have two small fistulas (both with the intestines). I have now tapered off the prednisone and it is just the imuran. I gained back all my weight and then some and am now at a healthy 115 (I'm 5'2"). I just had a small two week flare but I think I'm coming out of it and I didn't lose any weight so that's good. I hope the Imuran fully kicks in and works, but if it doesn't I do have the option of removing the 5 cm. My GI said that while surgery is usually a last resort, if it is only 5 cm causing me all of the problems, it may be best to take it out. So that's where I am. Waiting to see if Imuran is enough for me...

 

[Tsensop]

Hey Maple Leaf how are you doing? I am from Ontario as well. I was just diagnosed 4 days ago and I am in the same boat as you. (on the Prednisone 50mg and the Imuran as well) Let's keep our fingers crossed and hope they work for us. As for the 5cm, I have no idea what to say about that. This is all new to me too. But I am sure you will find your answers here on this forum. Everyone is so supportive and nice..Good luck.

 

[Crohn's 35]

Hi MLG, it is hard to get the right medication and diet. Diet alone doesn't cause the disease but alot of foods like dairy and salads are best to be avoided because they cause gas and bloat and very hard to digest.

As for surgery, if you have alot of narrowing and constant flaring, having surgery maybe your best recourse only your Gi knows. Laproscopic surgery is less invasive and you heal faster. I had emergency laproscopic and I was good for 7 years, but could of been longer if I wasnt in denial and ate better. Whether you have an illness or not your diet does matter!

Hang in there, you have any questions, just ask, lots of people to give their experiences too.

 

[Meg]

My story (Not sure where I was supposed to put this)

I have always insisted that I was very healthy in my adult life until now. I use a netty pot and read diets books of the healthy sort. I had my second colonoscopy this year. My cecum was a mess, yellow in color, but I had no diarrhea. My doc had me have a CAT scan with a drink and IV. that revealed almost 2 feet of intestine that are inflamed with Crohn's. Now I am on Entocort but my insurance refused my script for the 2nd month so I may have to take something less expensive. I couldn't believe the price. I have a habit of disregarding ill feelings from early conditioning and always thought I could eat anything. I thought that if my stomach hurt putting something, anything, in it always made me feel better. Hardly a sick day did I take. Even now, I am very tired. It starts in the afternoon. I just want to go home and go to bed. When I get there the familiar routine of cooking dinner, eating and watching films or tv takes over. My husband is a barrier to early bedtimes as he enjoys programs and it's how he falls asleep. I like to sleep early rather than sleep late. So I feed the cats at 5:30. But it gives me time on the computer and I find these posts helpful. When we went to the counselor this week my son told her that he is so annoyed because I tell people about my diagnosis and it is tiresome for him. He's sixteen. My mother keeps forgetting why I am taking medicine and going to the doctor. I think she blocks things she doesn't want to hear. All in all I feel a bit depressed and more than a lot alone. My doctor says my case is mild. Before I had the diagnosis I was doing Bikram yoga and felt pretty great except that it was really too much for me with my job which is very stressful but the yoga helped and made me feel like a 60 year old hero. Now I have vowed to do anything I have to, to get more sleep and that includes yoga or tai chi before bed. Another resolution is that I will not stay sitting at my desk all morning and all after noon without taking 2 10 minute walks outdoors. My vitamin D level is low. And I think, although the doctor says no, that I want to change my diet to include coconut water and exclude beef and pork and maybe other meats later. The only thing I can say for sure is hurting me is citrus. The docs says I should maybe cut out raw veggies. Your whole life you try to eat right and then right turns out to be wrong!