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Posted 7/12/2011 1:21 PM (GMT 0)
hi all,
my name is Sue. I was diagnosed on Fri 8th july with crohns disease and am now on prednisolone. Stupid to say i was very happy when they told me what the problem was as i was sure i had cancer but am now realising what a crap disease this is. Does anyone have a specific diet that they stick to or do you all eat what you fancy. the tablets don't seem to be doing anything at the moment except my appetite is a bit better. it was nice to read all your posts
thank you for taking the time to read this
sue
Posted 7/12/2011 2:52 PM (GMT 0)
Hi Sue! Welcome to the forum, sorry you have gotten this diagnosis. What dose pred are you taking? Since you've just started the treatment, it will probably be a few days before you start feeling better.

Diet changes are an individual process. If you have a lot of small bowel inflammation, it is important to eat a low residue diet, so that you are at less risk of developing a blockage. Resting your bowel with a liquid diet is also a good choice right now while you are trying to get this flare under control.

Many of us find that we are lactose intolerant, so reducing lactose or increasing lactase will help you feel better because you wil have less gas, nausea and cramping.

Some people find they are sensitive to the proteins in dairy, called casein. Others are sensitive to the proteins in wheat, called gluten. These sensitivities are usually identified. By keeping a food diary or doing an elimination diet.

Some here are following more restrictive diets that eliminate most grains, processed foods and added sugars. You can read about the Specific Carbohydrate Diet and The Maker's Diet here and elsewhere on the web.

As a new patient, I think it is most important for you to get familiar with the different treatment modalities; diet modification is almost always used along with medication. Prednisone is meant to be a short term solution - your GI should be planning a long-term treatment for you, too.
Posted 7/12/2011 3:58 PM (GMT 0)
hi,
thanks for your reply. i am taking 40mg of the pred for 2 weeks then have to decrease it every 2 weeks. i am keeping a food diary but all the different info i have found on the web is making my head reel!!!! i am looking into the diet idea was thinking about trying the specific carb diet. will do more research into this one as it sounds very strict but if it works then it is worth it.
nice to talk to you
best wishes
sue
Posted 7/12/2011 4:34 PM (GMT 0)
SCD is very restrictive. Depending on how you approach food/family/social events it could be a good fit or really hard. My suggestion is to first stabilize your condition medically and then start thinking about diet. Chrohn's is a chronic illness. You have a long life ahead of you to tweak diet. If you start expeimenting right away with diet I worry that you will not be able to separate the improvements you get from the drugs vs food elimination. I'm sure others will have different opinions about this.

40 mg of pred seems to be where most GIs are starting these days. My one experience taking oral pred for Crohn's was started at 60 mg. What is your DR's suggestion for your maintenance med? Do you mind sharing your particular symptoms that got you diagnosed?
Posted 7/12/2011 5:38 PM (GMT 0)
Hi Sue

I was like you. I was diagnosed and wanted to do something about it. I read many books and articles about diet because no matter what the doc said I knew that diet impacted how my guts were feeling. I read Makers, Life Withouth Bread, Low Res, FodMap, Paleo and Breaking the Vicious Cycle (SCD) and others. I decided to go ahead with SCD right away, actually before I was diagnosed 100%. As kasbern said one of the down sides of doing this too early is that you do not know for sure what is making the difference. However, I was so sick of being sick I had to do something. And the upside is that I was taking back some control and was not just counting on more pills.

Unfortunatly it seems there is no single answer. If I had to do it again, I would do the exact same thing. Read until I was convinced I found the right path and jump in.

One more thing. Some say that SCD is restrictive. IMHO I 100% disagree. SCD is about eating healthy all the time. I find having body parts removed restictive, or being sick all the time restrictive. I find feeling better very very freeing. Even if there is a cure for this DD, I will still eat SCD because I made a decision to eat healthy not because someone is restricting me. I will not go back to eating all the garbage I used to.

I know this is a confusing time. I was only DXed 1 1/2 years ago so I remember like it was yesterday. The folks here are great and will give great advice. I hope I gave you another perspective to consider (BUT REMBER THERE IS NO SINGLE RIGHT ANSWER FOR EVERYONE so you will have to find what works best for you and that may not be the same as me or anyone else.

I hope you find what works for you. Please ask as many questions as you want

Dave

Posted 7/12/2011 6:35 PM (GMT 0)
hi,
i don't really know what my consultant has in store for me after the six weeks of pred, i have to go for a cat scan on friday. when i saw him the first time he ordered all the tests and said he would see me again when the results came in. it was the dr who carried out my colonoscopy that perscribed the meds, he wanted to admit me to hospital for iv treatment but i said i wanted to try oral meds first.
i started feeling unwell about the end of march, noticed that after or during eating i had to go to the loo, felt very bloated with pain in my lower right side. then my daughter remarked i was losing a lot of weight and when i got weighed i found i had lost 3 1/2 stone. up until march i was very fit except for a back problem but still managed to walk my dogs everyday but i found once i started with the bowel problems i had no energy everytime i sat down i was falling asleep couldn't keep up with the housework etc. i started making notes how may times i went to the loo, on a good day 10 -12 but on bad days 16 +. i was having to get up during the night. my hubby said maybe i had become allergic to a food so i tried cutting dairy out for 3- 4 weeks, made no difference. all my clothes hung off me i had gone from a size 16 to a 10. just before my hospital appointment i looked in the mirror and saw my legs and i could have been sick it was like looking at an anorexic by then i was hardly eating anything no appetite or if i ate i was feeling sick so it was a vicious circle. everyone (even the supermarket staff) remarked how much weight i had lost so then i really started to get worried, i was convinced i had a cancer so in a way i feel lucky that it is crohns not that i am happy as i said before it is a crap disease
hope i have explained how it all started
thank you both for talking to me it does help
best wishes
Sue
Posted 7/12/2011 7:23 PM (GMT 0)
Sue, are you in a British Commonwealth, US or other? The treatment modalities are different in different places, I've come to learn.

It sounds like you've been through a terrible time! I hope you feel better soon. I think a liquid diet would work well for you - there are meal replacement drinks that you can try to see if you can stop the weight loss. Hugs!!
Posted 7/12/2011 8:26 PM (GMT 0)
hi
i live in the united kingdom. i have thought about replacement drinks.
thanks will give them a try
sue xx
Posted 7/12/2011 8:47 PM (GMT 0)
I suggest starting a new thread to ask the forum for specific drink recommendations you can find in the UK.
Posted 7/12/2011 10:21 PM (GMT 0)
I'm so sorry you've received this diagnosis, but I'm happy you're here!

I remember being so relieved in the ER when they told me I didn't have appendicitis but that I did have "an inflammatory process in the small bowel." I had NO idea what that meant, but I was so happy I didn't have to have surgery! LOL! I ended up with a big surgery 7 years later (May 2011) which included removing 12 inches of colon, 6 inches of small intestine, and my APPENDIX! ;)

It is wonderful that you now know what's wrong and can start treatment. Hopefully you'll find relief soon.
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