Recently diagnosed

[wiggles24]

recently diagnosed

Hi, I'm 25 years old and been diagnosed with Crohn's in 2011. I ended up at the hospital with major stomach pains. I ended up staying at the hospital for 4 days on antibiotics and steroids, and had lost 10 lbs of not eating. I was sent home with more antibiotics, predisone, and salofalk and a low-residue diet. The diet was hard to follow, whereas I am a big fan of raw vegetables and fruits of all kind. Went for a checkup to see how I was doing, told the doctor I was ok, so he told me I could eat a little bit more.

I went for my first colonoscopy a month ago, and the results were not as expected. My inflammation of the small bowel is severe not mild, as the doctor put it, so worse then he thought it was. Now he wants to put me on Azathioprine, and I have read all the side effects and they scare me. But he didn't give me another choice to go on. Blood work has to be often, which means it's not a mild drug to take and I don't want to take it but have no choice.

I also have to follow the low-residue diet for a while, now that my I know my inflammation is severe. I have difficulty findind foots that will fill me up. I eat soups and pasta but I still feel hungry. I am looking at seeing a dietitian to help me with my diet, for I do not know what to do.

Any info on the Azathioprine drug?

 

[Crohn's 35]

:welcome: Wiggles! Wow forth Canadian in a row!!! What is going on? Glad you are here and you are being looked after well. Yes there are risks to any drug and fantastic idea to see a nutrionist for digestive diseases is great. I too saw one. Raw veggies are very hard on the digestive system, and some fruits too. For the time being you may have to alter your diet until you get your intestines settled. I reacted to AZA, and my doc wants to put me on it again, but failed with 6pm, and imuran as well. Try getting some ensure to help put back the nutrients and helps you feel a bit fuller. Alot of people make smoothies and fills you up with good stuff but no risks. Trust me a full bowel obstruction isnt pretty. I have learned not to eat certain things but risked it a couple of weeks ago with a few almonds and got a partial blockage and headed for a colonoscopy. Lots of info here and many to help you out. Did the doctor mention surgery? Just wondered. Glad you are aboard. :bigwave:

 

[Angrybird]

Hello Wiggles I am on my second bout of Azathiopriine (re-started one week ago) and the first time round I went over a year without any issues, I then developed neutropenia which is why it was stopped. This was over 6 yrs ago so the theory is that enough time has passed that there shouldn't be an issue this time round. The side effects can be a bit scary but the way I look at it is that these are things that COULD happen, if my crohns doesn't get into remission I have experienced what WILL happen (sept '11) and I know which way I want to go. Have a look at the treatment forum as this will have a lot of info about this med. Perhaps it is worth contacting your GI/IBD nurse about getting a referral to a dietician as well so you can discuss your diet, if this can help with getting your belly settled then perhaps you Aza dose will not need to be too high. Welcome to the forum and let us know how you get on.

 

[owr]

Hi wiggles,

Sorry to hear about your news. I am brand new to this forum but not new to Crohns - its been about 16 years now. I think one of my bigger mistakes was not taking it seriously enough for the first 10 years or so. I was only on Asacol - had a very hands off GI - and we both pretended that it wasn't that bad. My thoughts during those years was that I would rather deal with a little pain and discomfort than risk heavier drugs. In the end I don't think that was a good choice - active inflammation can do major damage over time and thats why many of us end up requiring surgery.

I think its good that your doc is taking it this seriously right away. Ive been on Azathioprine for about 5 years now. I have always tolerated it well and not suffered any of the serious side effects. Your doctor will do a lot of blood tests when you first begin (if you choose to) and any time you increase your dosage. It also is a slow acting drug so will likely take some time to take effect. My GI will look at my blood 2,4 and 8 weeks after I change my dosage. She asks for a CBC (complete blood count) and a hepatic function. The goal of the former is to look at the size of my blood cells. The goal with azathioprine is to suppress the immune system - the CBC tells her how much this is working. The hepatic function measures the health of your liver. Thats to make sure its not putting you at risk for some of the unwanted side effects. There are also some special lab tests from prometheus labs to measure your 6TG levels and some others. Again the goal is to get you on a therapeutic dose without putting you in danger of suffering from the side effects. Thats how I understand it, though Im not a doctor. It is also different for everybody.

I hope this doesn't worry you to much. Unfortunately the disease is a reality for many people, but I have been able to lead a very normal and productive life for most of the 16 years its been with me. What I always need to remind myself (and my GI does often) is that the point of the medication is not only to make your life better now, but to make sure that your life will be good 5, 10, 20 years down the line.

Good luck with everything and take take

 

[wiggles24]

Thanks you guys for the info and advice. It does help with my worries. It helps to be able to talk to people who are struggling with this disease because they know what its like and how things are.

Yes, OWR, i was the same way at first, I wasn't really paying attention to what I ate because I didn't think it was a big deal and not serious. But now the doctor's got me scared and i'm realizing quickly that it is a big deal and have to pay attention to what I eat. I really would like to avoid surgery in the future.

Will be taking the Azathioprine mediation soon and will keep you posted on how it turns out. Thanks again for help!