newly diagnosed with crohns

Yes most Crohns patients do feel well again, often for long periods of time. The reason you feel so bad is that you have had active, untreated disease for quite some time. The pred is the first step in bringing the inflammatory condition under control, and the imuran (which is widely and successfully used as a maintenance drug) will very likely put you into long term remission, or at least significantly reduce the severity of your inflammation. If not, there is a major arsenal of Crohns drugs. Fact is most Crohns patients live fairly normal lives AS LONG AS THEY REMAIN ON MAINTENANCE MEDS, something that cannot be stressed too strongly. The danger is when some people say, well, I feel fine now so I no longer need these daily pills. And then you end up hospitalized or having surgery. There is a lot of good info on this and other Crohns sites, although it is important to realize that there are also some sites and posts that border on quackery . . . for example, someone will likely come along soon and tell you the answer is all diet modification or some such . . . sensible Crohns treatment is in fact a combinattion of sensible eating, the right meds and regular care from a qualified gastroenterologist.

charlee, welcome to the forum. I found this site back in February when I was diagnosed. I can definitely tell you even though I have been diagnosed with only mild crohns there were days I thought I would NEVER feel better. But hang in there because it does get better. I am currently on Entocort for inflammation (low dose steroid) and Lialda which is an antiinflammatory. I went for months with cronic pain in my abdomen and finally gave in and saw a dr. I have had mild symptoms on and off for 8 years and was misdiagnosed as having IBS so it is a miracle I had no significant damage. My best advise would be to form a comfortable relationship with your GI and his staff. Never underestimate the power of the drs staff. They are the stopping point between you and your doc. As far as diet my doctor really did not advise me on that because everyone with crohns seems to be different. I can handle just about anything in moderation if my stomach feels ok. It may take you a little bit to navigate foods and see what bothers you and to what extent. And as the other poster mentioned stay on maintenance meds. Diet alone cannot treat this disease. Some people will tell you they are on the SCD diet and have been in remission for years but the problem is this disease can be active and causing damage and you may feel fine and not realize it. The hardest part for me was coming to grips with the fact that I have a lifetime chronic illness. But it can be managed. Get a good support system and know this board is always full of people willing to help.

Hi Charlee and welcome to the best Crohns forum out there. I have to agree with the above suggestions given by MikeB. Right now you are in a flare up, but once the Pred starts kicking in and you start the Imuran you will see better days. But as MikeB suggests if the Imuran is not the one for you, there are always other options. For example, I didn't do well on Imuran, but they tried me on the sister med 6mp and I did much better on that one. I am currently maintained solely on Asacol and it works well for "me". As far as diet goes, its important to remember that diet is very individual for each us. Some follow the SCD or Makers Diets and they work well for them. I personally follow a low residue diet all the time and it works best for "me" and in my opinion less restrictive than the the other diets. But as I said some have had success with those diets too. Also as MikeB stated you should ALWAYS consider diet and medications as complimentary of eachother. I learned the hard way what happens when you do not treat this disease at all times. After my first couple of flares once I quickly got them under control I decided I didn't need to take my meds all the time. What happened is while I was busy getting on with my life, the Crohns was still in there doing its damage on a microscopic level unbeknownst to me until I was completely obstructed and needed emergency surgery. And you will hear many of the same stories on this very forum.

I also want you to know that there is life with Crohns too. I have had this disease for almost 35 years and MikeB almost 40 years. For myself I have had 3 grown adult daughters all conceived and born after my diagnosis, 5 grandbabies, a wonderful husband, and been at the same job for over 20 years.

Again welcome to Healingwell, and feel free to ask any questions you might have, one of our supportive members will be along to answer any questions you might have.

Hugs
Gail*Nanners*

Welcome to healing well Charlee and don't worry about late responces as us members live through out the world. This isn't chat where everyone is on at the same time. For instance I'm in BC Canada and it's just past midnight for me now. From my experience when I came off prednisone away went the fatigue as well, hope you get the same result Rob.

Thanks Rob and Ellie81

This forum is definitely a great part of crohns - yes..I have found something good about crohns!
Heaps of support and advise - probably the best medicine prescribed and you dont need a medical degree! Its easy to feel like your the only one, but a forum like this is a constant reminder that people throughtout the whole world are with you - very relieving.

thank you all

charlee

Hi Charlee,

Welcome to Healingwell!

This is a great web-site! I have made so many dear friends here! I was dx with Crohns in 05' but I think I had it for some time before....ended up having complete blockage! Anyway,  this website is a comfortable/confidential  place to come and talk about ANYTHING...which is super, especially if you are home alot.

I couldn't have wrote it better (what MikeB said!!!) he has a way with words:)

I agree that taking your med's prescribed to you by your Gastro Dr. in combination of diet. You'll become good friends with your Gastro Doc..at least I am cuz' I see them so much!

I was prescribed pred..just like you and then Imuran and Asacol together..then just Imuran over a 1 1/2 year time period.  After a 1 1/2 years of this combo...I needed a resection to remove the infected area and it was the best thing I ever did so far. Now, on Imuran and haven't had a big flare since. I do however have some complications of the area removed...extra D n' stuff! but it is still better than it was. WAY BETTER!! There are up and down days... with any Auto-Immune disease. You will learn to understand what does or doesn't work...and it will all become second nature. truly!

I would sugest keeping a food diary. REALLY helps... to look back on it. Also, it is super normal to feel shock! I couldn't even write on this website for a year! I just would read and get freaked out and go into denial...haha..but in the long run I couldn't deny that all these people are my "peeps"

Good Luck!

Welcome

Heather

I'm copying and pasting my post to a "success stories" thread I just made. I was searching around when I stumbled upon this site. I read a few touching stories that inspired me to join and share mine. In short, yes you will feel well again. It is entirely possible, and has been the case for me, that you will feel entirely disease free for years. Where there is a will there is a way. You need to consider being proactive about your health in general now. This is a life long disease and you will have to forever eat healthy, exercise regularly, and rest your body and mind from daily stresses. You can do it, just like the millions of others who have before you :)

"I was diagnosed with Crohn's when I was 17 years old on March 2, 2005. I'm now 23 and I've been in relative remission since May 2005 and have been fistula and abscess free since early 2007.

Prior to being diagnosed I weighed 174lbs (5ft 8in) and played high school football. I dropped to 135 lbs in less than a month and was bed ridden with a fever for 5 days before the doctor finally decided that imuran, prednisone, and cipro alone wouldn't be enough. With my first dosages of remicade immediate relief came and as I mentioned within 2 years I was complication free. I am still traumatized by the pain I underwent when first diagnosed. I had a marble sized abscess that had to be excised and drained with a catheter thingy (looked like a small straw), which was by far the most painful thing I've ever experienced. The abscess site was SO tender and this rigid straw thing would dig into it bone deep. I had to walk around school doped up on lortab with a straw sticking out of my rear and a packing that absorbed..drainage. I was only 17. After the catheter was removed an EUS discovered several fistula tracts and in order to prevent further abscesses, a fistualectomy was done in addition to a seeton placement. I had the seeton for about 10 months, which meant keeping a packing up my crack to collect drainage from the fistula hole kept open by the seeton. The fistualectomy scared me so bad. I got into the shower post surgery, took my packings off and blood spilled everywhere. It looked like a pig had been slaughtered in my tub there was so much blood. I felt around near my anus and found a hole that I could insert 3 fingers about 2 inches deep into (fistualectomy). It was just scary. I feared I was horribly scarred now. How the hell would a hole like that heal up?(guess what though, it did heal!) And you can imagine how it felt to defecate with all of this going on...felt like acid coming out. I've been fortunate and not had anything removed from my internally though.

That is a small glimpse at my story. I've also battled severe life threatening fungal and bacterial sinus infections that required surgery on many occasions. I've been hospitalized with pneumonia, laser treated hand warts weekly for 2 years (SO PAINFUL), fought off molluscum and even MRSA.

Where there is a will there is a way. Despite all of this, I will be graduating in Fall 2010 with a degree in Civil & Environmental Engineering. I worked all through college, paid my way, dealt with crohn's and all of it's complications, and gained my weight back and more. I now weigh 192lbs...can you believe that!!!?? I have crohn's and I weigh 192 lbs with approx. 10% body fat. I can bench press over 300 lbs, and I've NEVER ONCE taken anabolic steroids. If I can do it, SO CAN YOU!

Please never lose hope. NEVER. This disease attacks your mind as much as your body. Keep your heads up..."

Charlee, my advice to you is learn everything you can about the disease. During the first 2-3 years of college I did several research papers on Crohn's. The refereed journals I had access to really helped my perspective. Prior to any doctor visits with your GI, I recommend you have a list of things you want to ask.

This disease is very different for each individual. Certain meds work for some people that do not work for others, some people can still drink alcohol, others cannot even have a sip, etc etc. So on that token, don't be frightened by stories of surgery after surgery. It's entirely possible that your Crohn's will be under control in no time at all with little to no bumps in the road. And if not, these stories can help you see that regardless of what happens, even in worst case scenarios, you can live a relatively normal life.

OK. Stop scaring yourself by looking things up on the internet .

Remember, even Panadol can sound scary if you read enough info on potential side-effects.

In terms of taking other possibilities to the table, you might like to speak with your doctor about enteral nutrition. This generally has more effectiveness in youngsters than in adults, but you might still benefit from trying it. Basically, it's living on specially-formulated medical drinks for a specified period (usually about six weeks). In some people, this can have as great a benefit as being on high doses of steroids. If you're interested, you can find more information by clicking on the "nutrition" link in my signature (below).

As far as your gp goes, try asking for an extended appointment when you make your booking. That way, you ought to have the talking time you need .

All the best to you,

Ivy (in Aus too).

Oh, boy. How on earth did you manage your colonoscopy, then? I hope you didn't have to prep at home and then drive all the way to your metro hospital?

I'm in regional Aus and am lucky to have a good gastro & basic hospital locally, but have to go to the capital city for senior specialist appts (like you, 4-5 hrs away by car; less by train).

We have a few Aussies here, and three or four other Aus moderators, so don't feel that you're alone or unusual .

Treatments - used up most of the standard options when I was in my teens; now use anti-TNF meds when they are available (things like Infliximab) and languish, sick, when they aren't.

Ivy.

Aah! You should keep an eye out for SydneyJo, then, who lives exactly where her name suggests . She has Crohn's and moderates on the rheumatoid arthritis forum, and might be able to give you some good pointers on Crohn's resources closer to your home.

It sounds to me as if you have a really well-prepared and cluey gp who is already thinking about your future treatment options, and that's really encouraging.

I thought you were living right out in flying doctor territory, and was worried for you. Glad to hear that you have a hospital and gastro nearby: you need to be able to call on someone who lives close to your home (and radio communication doesn't count .

Have you joined Crohn's Colitis Australia yet? They offer good advice should you ever need it, and put out a very informative magazine several times a year - it's a good way to get informed and empowered.

Ivy.

LOL. Moderators look after individual forums and help ensure that the discussions here are kind and supportive. Sometimes people post advertisements here, and we make sure those are deleted before they can do much damage. And we do a lot of extra stuff too behind the scenes, and consult with each other if we're not sure that a member is getting the help s/he needs, to see if we can find some extra resources / support for that person.

Moderators are assigned to individual forums: I'm in Crohn's, for instance. I'm a co-moderator, though, because this is a busy forum and there are quite a few moderators here.

Rheumatoid arthritis, though, is a slower forum so can get by with only one moderator, so SydneyJo is it: she doesn't need another moderator to share the workload, so she is a moderator rather than a co-moderator.

Complicated, innit?