Crohns is a disease, not my life!

[Mojo]

I'm a 24 year old male, working full time, going to school twice a week at night, recently engaged and moved out in to my home.

May 2011 I was diagnosed with Crohns disease after having sever stomach pain for almost a month and doctors believing it was simple acid in the stomach.

I've been hospitalized 3 times since the diagnosis and been on and off prednisone for the pain. I've also tried Imuran, which I believe only made me worse. Started having lower back pain and since stopped taking the drug.

I am not currently taking anything and still occasionally have flares. When I'm good, I'm GREAT. When it's bad it IS BAD!

Just wanted to know how people cope and if anyone has any suggestions.

Thanks.

 

[Stacey]

Hi Mojo,
I was diagnosed with crohns at age 22 (9yrs ago) was prescribed meds didnt take them because i cant stand swallowing pills and guess i didnt believe i had it. I have stomach pain nearly everyday but not severe. Now after another colonoscopy i got the hard word as it has got worse without any of my symptoms changing, so now im on the harsh stuff which is the last thing i wanna take but guess i have to as i dnt want surgery or a bag or even bowel cancer.. so i guess the best thing to do is to talk to your doc and try another drug that maybe suited for you.
Congrats on the engagement and new home too.. so to enjoy all the new ventures that life has, so in the end best to do it sooner than later.. all the best.

 

[SarahBear]

Welcome to the forum, and congrats on your engagement.

There are a lot of different medications used to treat Crohn's. Like Stacey said, it might be a good idea to try something else. Not everyone gets it right on the first try (I've been on two so far that didn't work for me). If you don't want to take any medications, or want to try something else while waiting for the right medicine, you could look into trying a few different diets. A lot of people have had success with that.

Other than that, the only advice I can give you is the basic: pay attention to what you eat, and any other factors that seem to set off your stomach. If you pinpoint anything, do your best to avoid it!

Hope some of that helps!

 

[Angrybird]

Hello Mojo and welcome to the forum Is your doc aware that you have stopped the Imuran? If not you do need to speak to them about this so an alternative treatment can be looked into. The flares are indicative that the disease is still active and leaving a disease like crohn's untreated will only lead to bigger problems down the line.

One avenue that some folks here find success with is diet, at least keeping a food diary so you can pin point problems foods may at least help with symptoms. If you would like to look into this avenue in more detail then definetly have a look at out diet and sups forum: http://www.crohnsforum.com/forumdisplay.php?f=17.

AB
xx

 

[CLynn]

I agree with AB, Mojo. You need to let the doctors know you stopped the Imuran. Most of all the meds they give us for Crohn's take a few months to work, at least. Hate the thought of your flare getting worse in the meantime. Over the years I have found that if I can get the flare under control sooner, I am much better off.
Congratulations on your engagement! Love the subject line.

 

[Mojo]

Thank you for the replies. I just spoke to my doctor to see what other options there are for me.

I am slowly learning which foods are more dangerous for me (peppers, nuts, fruits with peals to name a few). I am mostly on a low residue diet.

Has anyone had issues with lower back or joint pain? I started having lower back inflammation a month in to taking imuran. It didn't help that I did a lot of heavy moving at the end of the month but I'm told joint pain and crohns are closely related.

Thank you all for the advice. A co-worker told me to hop on to a forum and I didn't know crohns existed until I was diagnosed but hearing from all of you helps a lot!

 

[CLynn]

When first diagnosed many years ago, I had alot of joint pain. I had been in a flare for a long time before diagnosis, due to an idiot general practitioner not listening to me. And not so much in the flares after, until this flare now. Back, sciatic nerve, fingers and elbow, lots of joint pain. My first GI told me that arthritis symptoms go hand in hand with Crohn's.

 

[Angrybird]

As already mentioned joint pain can definetly occur with crohns, I found it gets especially aggrivated if the tum is grumbling too. I would say it is worth getting on to you doc about getting your vitamin levels checked, us crohnies can have problems with malabsorbtion and therefore low levels and a low vit D level for example could also contribute to painful joints.

 

[David]

Hi Mojo and welcome

What did your doctor outline as additional options for you? I'm personally a big fan of hitting Crohn's Disease from every angle.

1. Western medicine: whichever your doctor recommends
2. Diet - Enteral nutrition slowly transitioning to Paleo or SCD diet
3. Alternative treatments: Medical marijuana if available and/or Low Dose Naltrexone
4. Exercise/stress reduction: yoga
5. Vitamins/minerals - Get as many checked as your doctor is willing and supplement as necessary. Common ones to test for are vitamin D, B12, folate but there are a whole host of others as well.

You get the point

Don't take this disease lightly. Kick its butt from every angle

We're here for you!

 

[Lucinda]

Hi there,

I completely understand not wanting to take medication that doesn't seem to be working. I have gone cold turkey off my meds before. Not the best plan but sometimes a girl gets frustrated. Unfortunately I learned the hard way that ignoring the disease does not make it go away.

I am glad you have spoken to your doctor again. As others have said, there are many medications out there and it can take awhile to figure out which med is best for you. There are so many variations of Crohn's (at least 5) that not all meds work for all people. Read up on the meds as much as you can, take someone with you to your doctor appts. if you can so you have another set of ears listening, track your symptoms and your diet. Gather as much information as you can. Knowledge really will set you free.

David has some excellent advice. That is a great summary of the various approaches. Yes, hit it from as many angles as possible. This is not a sprint. It is a marathon. Slow and steady will lead to improvement. Sadly there are no quick fixes.

Joint pain is a common symptom as others have said. Yes, Crohn's is not your life but it is to be taken seriously. The very best of luck to you.

 

[Mojo]

David- thank you.

I've tried the meds doctors have prescribed me including imuran. The option we hope to avoid is surgery.

I had never heard of 2. Diet - Enteral nutrition slowly transitioning to Paleo or SCD diet. I will look in to this for sure! 3. Alternative treatments were never discussed with my GI, but a co-worker brought that up yesterday.

Yoga has also been suggested and the yoga mat and DVDs were purchased yesterday.

I'm up to date on my blood tests and have been tested for anything under the sun it seems .

Thanks again to everyone.

As it stands right now just a GOOD night's sleep on a low residue diet does the trick sometimes. Anybody agree?

 

[Scaryman]

When you associate lower back pain with imuran I get curious only because of my strange past with that drug.

I was on 700mg a day if I recall correctly, in the 2cnd week I noticed lower back pain and wrote it off to oving servers and racking them in server racks. That was until I got up to go to the bathroom in the idle of the days now with saline and I'm slowly able to walk and move for myself, how do you explain that?

I thought it was the moronic doctors I was seeing until the university of Chicago looked at it. Now this is a school who is truly honestly on the cutting edge of IBD/ and drug studies. As the head of the university's Gastro dept. was at one time on the FDA chair for gastro drug approvals. They told me they can't understand what happened with my immuran "neurological event."

That is why I ask, seems like I was the only one lucky enough to have paralysis related to a toxic or chemical reaction to Immuran. But as others said back pain and crohns go kinda hand in hand in a way.

 

[Susan2]

David- thank you.

SNIP, SNIP
Yoga has also been suggested and the yoga mat and DVDs were purchased yesterday.

David has a really good yoga thread HERE:thumright: