How do you doo

[Mark F]

How doo

I'm 55 and was diagnosed with Crohn's about 2 years ago. I was a little relieved actually because I had never heard of it and I thought I had cancer. Symptoms came on pretty quickly. Diarrhea and bloody stools lasting for about 2 weeks before I got to a doctor.

Doc said I had moderate Crohn's and acid reflux. He started me on Lialda 2 pills a day. After a couple weeks blood stopped and diarrhea subsided a little but was still going about 6-8 times a day.

Biggest problem for me was the urgency and lack of time to get to a bathroom. The constant worry about getting to the can on time when at work or traveling really sucked. I'm an avid fisherman and this forced me to buy a bigger boat just so I had access to a toilet. That's the silver lining I suppose because my wife did not fight me on it.

After reading some posts on here. I see folks say they have Crohn's of the so and so area. My doc never told me where my problem was he just said I had Crohn's. He also did not say much about diet which I will get to later. He just said stay away from greasy food and don't eat spicy stuff. Strange but after getting diagnosed my taste for spicy food changed as if my body was warning me. I used to like to eat hot chicken wings etc. but after getting Crohn's my mouth would burn if I ate moderately hot stuff.

Anyhow, after about a year and a half of no improvement my doc doubled my dose of Lialda. After a few months of no improvement I decided to try one of the diets I read about online. I started the SCD diet after new years and for me, it has been a miracle. After a week I had no more diarrhea. Never thought solid poop would look so good! I now poop about 2 times a day instead of 6-8. As a side affect of this diet I also lost 20 lbs. I have weaned myself back down to 2 pills a day and feel good.

I feel like I learned more about IBD online than I have from my doc. So here's a few questions:

Does it matter what area (intestine, colon etc) is affected by the Crohn's as far as how I deal with it?

Is stress a contributing factor? My doc says no but I got it during a stressful 3 month job certification.

This is my first remission and I'm worried about long term affects of taking Lialda. Has anyone weaned themselves off completely?

I have been symptom free for about a month now. Is it possible I was mis-diagnosed and have some allergy to gluten?

Mucho gassy ass!
Mark

 

[GemmaH]

Did they do some tests to confirm you had Crohns? Have you been tested for Celiac Disease?

 

[susser2000]

I believe it does matter which area is infected as to how the disease is treated. Mine is in my ileum (small intestine) so it may be treated differently than someone with an infected colon.

I felt as though I was diagnosed when I was only a few years in because I was symptom free. I stopped taking my meds and didn't go back to my doctor and it landed me in the hospital with a bowel obstruction. I highly recommend talking with your GI doctor and asking him which area is infected and if it could be something else; however, I would also recommend to keep taking the medication.

I'm not sure if you have ever had a bowel obstruction, but getting an NG tube to drain your stomach is not a fun experience. Good luck with everything and I'm glad you are symptom free!

 

[ronroush7]

Welcome. I don't know for sure but it is possible you are on the right dosage of medicine to get you under control. Have you been tested for Celiac's Disease as suggested above? What type of tests have you had.? I am also on Lialda and have been led to believe that it was to help because part of the Crohns is in my colon.

 

[ronroush7]

I believe it does matter which area is infected as to how the disease is treated. Mine is in my ileum (small intestine) so it may be treated differently than someone with an infected colon.

I felt as though I was diagnosed when I was only a few years in because I was symptom free. I stopped taking my meds and didn't go back to my doctor and it landed me in the hospital with a bowel obstruction. I highly recommend talking with your GI doctor and asking him which area is infected and if it could be something else; however, I would also recommend to keep taking the medication.

I'm not sure if you have ever had a bowel obstruction, but getting an NG tube to drain your stomach is not a fun experience. Good luck with everything and I'm glad you are symptom free!

I stopped taking Remicade and ended up with a bowel obstruction. Keep us updated.

 

[Mark F]

Thanks for replies/
I was diagnosed after a colonoscopy. Never been tested for Celiacs disease.
Have never had a bowel obstruction. After colonoscopy doc said I had Crohns and diverticulitis. Also had some benign polyps.

Looked up a description of Celiacs disease and some symptoms are similar but it says it is genetic. My parents did not have it.
Can it skip a generation?
How are you tested for Celiacs?

 

[GemmaH]

Its not always genetic - you can just be unlucky and just get it anyway. My consultant is sure that I have it and I am awaiting the test for it, none of my family members have it. Tested by upper endoscopy (camera down the throat) with biopsies taken from the very top of the small intestine. I wonder if it could be celiac as you said you did better with a gluten free diet. I would ask for the test to be done.