Diagnosed 1-27-12

[w_pinkerton]

Hey everyone... just thought I would check this place out and see what kind of help i could get from everyone here. I just found out I have crohns disease. I'm new to this... no one is my family or extended family has it or any other bowel disease. BUT, I use to take the drug accutane about 8 years ago. I haven't talked to my doctor about it yet. Just wondering if this could be the cause. I know it doesn't really matter, because I all ready have it... just kinda looking for answers.

I'm on Prednisone(spelling) now and I'm wondering how much this will help me. My doctor said my intestines are decaying and I have a few ulcers in there too. I'm trying to get this under control. Food doesn't seem to have any effect on my symptoms. I feel the same every day, nothing makes it worse or better. Does anyone have any tips or advice for me? If I'm leaving out any important information, please let me know. Thank you.

 

[xJillx]

Hi and welcome! I am sorry about your recent diagnosis. Accutane could have been the cause, but I don't think you'll ever know for sure.

Pred should help get the inflammation under control quickly. Most see an improvement within a few days. However, you can't take pred long term as it has some nasty side effects. So, you and your GI will need to discuss a maintenance drug once you finish pred that will keep the inflammation from coming back.

Though you find food doesn't make you feel better or worse, I'd start keeping a daily journal of what you eat, symptoms, and bowel movements. You may be surprised what you'll learn and find things that are in fact bothering you.

I hope you feel much better soon!

 

[maria]

Sorry, Hmm not sure if that has anything to do with it but just wondering for my own self haha becuase I think I'm on to something. Were you a health nut or some sort of trainer?

 

[Angrybird]

Hello and :welcome: It is a shame about the diagnosis, I don't know what accutane is so cannot comment on it but please do not ever think this disease is your fault. I agree with Jill, you should notice quite a marked difference in your symptoms in the next few days with the pred. One thing I will ask though is have you been prescribed a calcium supplement? If not get onto your GI/GP straight away, it is very important to be on something like this whilst on steroids as this helps protects your bones. When is your next appt with regards to looking into a long term treatment plan?

 

[w_pinkerton]

Thanks for the warm welcome! Accutane is a acne medication I took about 8 years ago. There are commercials on tv now saying that it may cause a IBD. But like Jill said, I will never know for sure.

I started the medication the day I was diagnosed. My next appointment is February 9th. They said to take 2 10mg caplets a day until then, then probably start weaning me off of it. So far I think I'm feeling a little better. My stomach doesn't seem to be on the move like it was before, and the diarrhea isn't as frequent anymore.

Haven't been told anything about calcium supplements yet... I don't even know if there are certain things I'm not suppose to be eating while on this. I would think if the doctor was worried about that he'd let me know? Again, Thank you everyone for the warm welcome, I really appreciate it. I will post my story with my battle after work. Thanks!

And no, I'm not a health nut or a trainer :tongue:

 

[w_pinkerton]

This all started back in May. I'm 25 years old and have been healthy my whole life. No allergies, or other health problems in my life. It started out as constipation for a few days, then turned to diarrhea. Actually, I would have both. I would have frequent urges to go to the bathroom, but I wouldn't always go. When I did go I never felt like I completely went. I never had any stomach pains, no blood in my stool, never lost any weight, or my appetite. I let it go for a while because I figured it was just a stomach virus or something that just had to work its way out of my body. I'm the type that usually doesn't go to the doctor unless it's very serious (broken bones, can't stop the bleeding). So needless to say I let it go on longer than I should have. I experienced these symptoms every single day until I started Prednisone.

I finally decided to go to the doctor around the end of october. The doctor took blood and stool samples. She said I probably just picked up a virus like chryptosporidium or something along the lines of that, since I work around cattle (dairy farmer), I probably just picked something up from them. she said she's seen this before. Well, all my tests came back negative. So then she said I should watch my diet, try cutting out dairy completely (lactose intolerance), and add more whole grains, and even take metamucil. If that didn't make me feel better in 2-4 weeks I should go back to see her.

It didn't work, at all. I went back, what a waste of time. She said she would refer me to a specialist. About 2 weeks later I went to Dubuque to meet him. I had more blood taken (said they would check possible allergies and who knows what else) and I had an X ray taken. He told me if these tests didn't find anything, I should really have a colonoscopy done.

Needless to say, he found nothing. So I had a colonoscopy a couple weeks later. I was told my colon looked very good and clean. He said no crohns or UC at that time. But, he did take a sample of my small intestine just to have it tested. The test came back saying it was inflamed. So now he needed to find out why. He thought maybe it was stress or anxiety at the time. But we would have to do other tests to find out for sure. My next test would be the CT scan. That test also came back normal.

My next option was the procedure where you swallow a pill size camera, and wear a monitor all day. This was the test that found what was going on inside of me, and this is where I'm at now. I'm very happy they finally found what was going on with me. I wish I would have gone to the doctor sooner, lesson learned I guess. Really hoping they can get me back to the way I use to be, I'm tired of not being able to go anywhere! I'm just keeping my fingers crossed that I will feel better day by day.

 

[David]

Greetings and a most hearty welcome to you! Regarding the Accutane and Crohn's Disease, I have a little reading for you (click that) then come back here for my thoughts and recommendations if you so desire.

Now that you're diagnosed, I strongly suggest you get your vitamin D and vitamin B12 levels checked at the very least. Crohnies are VERY commonly deficient in one or both and proper supplementation can make a world of difference.

I have a theory that some phenotypes that express Crohn's Disease are triggered, in part, by Vitamin D deficiency. The accutane stops vitamin D from being able to do its thing (that's the scientific term ) and because you were on the IBD precipice due to your genotype, it kicked you over the edge.

Again, welcome. I hope our little community is of great benefit to you over time.

 

[Angrybird]

I am pleased the doc did more tests and took a biopsy even though the bowel looked clean during the scope, you would most probably still be undiagnosed if he hadn't done that. I think there are some docs out there who could learn something from this. When you see the doc aon the 9th also ask about diet (perhaps a referral to a dietician?) as having a really good look at this area is definetly beneficial, keeping a food diary of what you get a grumbly tummy is a good place to start. Things with nuts and seeds will aggrivate the bowel and usually caffeine and dairy can be an issue.....I hope this helps and keep us updated on how you get on

 

[w_pinkerton]

Thanks a lot David, that thread you posted is very interesting and I will most definately ask my doctor about possible vitamin deficiency's. Just one question though, accutane stops vitamin D from doing its thing, even though I'm not on it anymore? This deficiency is permanent?

Angrybird--I am very happy with my doctor too, he told me he would figure out what's going on and he did! I'm wondering if my next appointment will go over what I should be doing for my diet, and possible vitamins I should be taking too. I will ask about it if he doesn't say anything. I doubt that will be my last doctors appointment for a while though.

 

[Ducey99]

I was also on Accutane and have Crohn's. I was diagnosed in 2001 but never had any symptoms after that at all. Went on Accutane in 2006 and then had the flare-up to end all flare-ups Jan2007. The connection is definitely interesting, but i've never spoken to my Dr. about it.
Like you, i've never found food to effect me either, feel the same everyday. After reading this though, I think i'm going to start a food journal anyway. Don't really have anything to lose..
With regards to VitD, the deficiency is NOT permanent. With Crohn's though, you may not be absorbing it well so taking a supplement is definitely recommended (especially by David )

 

[David]

As Ducey said, no, the deficiency would not be permanent. But I think that the way it causes your genes to express might be. Again, just a theory.

 

[w_pinkerton]

I am more confused now than I was before. I went to the doctor on Thursday, he asked how I was doing. I told him I didn't feel any better since being on Prednisone. I asked him what he knew about it. He said, "I dont know, right now it's just a mystery". He said he's not positive that I even have crohns, like my symptoms or what the oral camera showed wasn't quite bad enough? He showed me a few pictures from the procedure. I thought they looked bad, but I'm not a doctor. He just pointed out a couple tiny ulcers and some of the decay in my small intestine.

So this is what he decided to do, he said he would up the Prednisone to what he would have put me on if he knew for sure I had crohns. So I'm up to 40 Mg a day, for 2 weeks, then start weaning off. I'm suppose to call him in 2 weeks and let him know how I'm feeling. If I'm feeling better, it's more than likely crohns. If I'm not, then he suggests I have another test done, and I may want to get a second opinion. He wasn't too interested in the vitamin tests yet because he wanted me to try the higher amount of Prednisone first.

I started the 40mg dosage on Friday. Yesterday I thought I felt pretty good, and now today is kind of iffy again. I feel like this medicine isn't working as fast as its suppose to. I'm just a little disgusted with it all right now. I really dont want any more tests, or doctors. Any ideas on what I should do?

 

[David]

I might get that second opinion that your doctor (sort of) suggested.

I ascertain that you had a capsule endoscopy (pill cam). What other tests did you have to try and determine if you have Crohn's Disease or not?

 

[Catherine]

Initial dose of prednisone in smaller then my 16 year old daughter, who started on 30mg and she only weights 44 kg which I think is 97 lb. Hopefully will go better on the higher dose. She still has some stomach pain but is feeling so much better.

 

[w_pinkerton]

Yup, The capsule endoscopy was what found what I have going on. I had a colonoscopy and a ct scan before that. CT scan found nothing, and the colonoscopy said my colon looked clean and healthy, but it also found that my small intestine was inflamed. I haven't had any other tests since the Pill cam. He said the next test he would recommend is another camera, which could be inserted through either the colon or Orally. He said that would give a better "View" than the pill cam, because with the pill cam tossing and turning through my system, it might not see everything it should.

 

[David]

Was he able to take any biopsies during the colonoscopy? Especially of that inflamed small intestine? Did he do any blood tests that came back abnormal?

 

[w_pinkerton]

He took a biopsy of the small intestine. He said all it showed was that it was inflamed. He didn't know why or what was causing it. I had blood tests done when I saw him for the first time. I really dont know what actual tests were done on my blood. All the blood tests came back normal. No blood tests since the "diagnosis".