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New Person with Crohns!

Hello,

I was recently diagnosed with Crohn's Disease in October 2012. It started January 2011. I remember the night very well. I was in law school eating BBQ chicken and watching something on netflix. The time was around 8PM. About 10-15 minutes after I began eating, I had sharp pains on the lower side of my stomach (below my stomach, but right above my 'crotch' area.) I went to the bathroom, and thought it was food poisoning.

These were episodic and, at first, I thought it might have been irritable bowel. Maybe it was irritable bowel because my iron levels and weight were normal. Outbreaks normally happened once a month. The summer of 2011 I went for a colonoscopy and the gastro did not find anything and believed it was irritable bowel syndrome.

About a year goes by. The symptoms stay the same. The cramping becomes a little more frequent. After the first or second breakout, the abdominal pains were mild to moderate, but not painful where it interfered with my life. It normally occurred after I ate.

I graduated law school in May 2012 and started studying for the bar exam. I didn't pay much attention to my symptoms and just focused on my exams.

Once I started work in August 2012, things started to become worse. I had a kidney stone in late August, which was incredibly painful. The flare ups started to become more frequent, perhaps several times per week and the mild abdominal pains started to become a daily event. Finally, in october, after a small bowel series, the gastro diagnosed me with Crohn's...which made sense since my dad has it!

Now came time for the medicine. My doctor prescribed me pentasa and budesinode, but actually just sent me pentasa. At first, I tried to swallow the pills, but I couldn't swallow medicine that well, which gave me another obstacle. What was I to do?? Everyone said I had to swallow it whole, otherwise the medicine would not work properly. Pharmacists believed I could not open the capsule, while the gastro said I could open the capsule.

Well, I finally decided to take the medicine and open the capsule. And it seems to be working! I started on the pentasa regiment (8, 500mg capsules per day) and my symptoms have almost all but disappeared. I still get a flare up maybe once per month and abdominal pain once in a while, but the medicine seems to be helping me.

There are a lot of questions about whether these types of medicines will work if the capsule is open. The answer to that question is YES, the medicine will work, but the tiny granules cannot be crushed. So, the trick I use is to swallow some type of yummy pudding along with the granules and it is a painless way to go about taking these meds.

I'm 25, and I am lucky this was caught early. I guess the good news is my father has mild Crohn's, and was never hospitalized from it. If genetics tells a story, I am hoping a similar outcome will also happen with me.

I knock on wood that everyone continues to have their health and improved health. This experience has really made me realize health is the single most important thing we have in life.
 
Hi Andrew! Continue to look after your symptoms and stay in touch with the drs for testing, colonscopy, etc. Sounds like you are doing a great job - hang in there!
 

afidz

Super Moderator
Hi Andrew! Welcome to the forum!
Thank you so much for sharing your story. I know of a few people on here that have a hard time swallowing pills as well, so your story might be very beneficial to them.
Its great to hear that you are doing better, I hope you can reach remission soon.
I was wondering where your Crohn's is, and if it is in the same spot as your Dad's disease. (My Dad and I are completely different, so I was curious)
 
Hi Andrew! Welcome to the forum!
Thank you so much for sharing your story. I know of a few people on here that have a hard time swallowing pills as well, so your story might be very beneficial to them.
Its great to hear that you are doing better, I hope you can reach remission soon.
I was wondering where your Crohn's is, and if it is in the same spot as your Dad's disease. (My Dad and I are completely different, so I was curious)
Thanks! You know, my dad never likes talking about this stuff. I've tried to ask him several times, but most times he says "I really don't remember" or "Yeah, it's the type of symptoms you had." While we never had a fireside chat about this stuff with milk and cookies and compared test results (darnit, I always did!) I assume it is the same area, the ileum. He didn't actually start to have pain until an ulcer developed in his 40's. He started getting symptoms at 17 and it wasn't until he was in his early 40's when he started to begin treatment. At that point, it had spread, but with medicine, he is completely better now. Apparently, a gastro had diagnosed him with Crohns when he was in his early 30's, but croaked and the information was lost (at least, that is the story I hear, maybe the doc was just incompetent, who knows...) He was never hospitalized, nor did he ever have surgery.

Unfortunately, it seems the severity of this is left to chance--or a roll of the dice. Some people have it really bad where they never leave the bathroom and have hospitalizations and surgeries. Others have this episodically, and less debilitating.

The only thing we can do is....:soledance:
 

afidz

Super Moderator
My dad doesn't really talk to me about it either, I just know that our diseases are located in different parts and I have a more severe case than he does. He had trauma to his intestines when he was 5, he thinks thats what triggered his disease, because his symptoms started shortly after. He was very sick as a child and ended up needing surgery to get a bunch of his intestines removed, I don't know how much or where though. But he has been in remission for over 30 years since then. It really is just a roll of he dice. I don't think there is a pattern at all
 
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