Newbie to Crohns

[apopolizio]

Hello. i am 26 years old and was just diagnosed with Crohn's 3 weeks ago. All my life I have had stomach pain and when I was little I was told I was just 'a high stress kid'. When I was 19, I had my first endoscopy and they said there was inflammation and said I had GERD. Have been on meds for that since, but have always had a dull pain in my stomach. Also, I have always had trouble going to the bathroom (constipation) and when I was 23 they did my first colonoscopy and said everything looked fine, but eat more fiber. Well over the past 2 years I have had bouts of softer stools and feel like I am continually going for up to an hour.

Finally when I had my first diarrhea time over the summer I finally told my gastroenterologist. He said since it changed he'd like to do another colonoscopy to make sure its nothing else before saying it is IBS. this was done after Christmas before my birthday and new Years. After the test he said it looked fine, but did take biopsies to see if anything was going on at a microbial level. Well he called me 2 days later telling me he thinks he has a diagnosis. I go in on and he tells me he believes I have Crohn's. He talked about how before there was nothing, but now there are fistulas, and put me on Pentasa 2 pills 4 times a day.


I know medicine can take time to work, but it is almost since I have been on this medicine it has made the situation worse. My stomach aches are worse, I am exhausted, seating more at night and more migraines. After reading about the disease, I know these are all symptoms of Crohn's, but is it possible the meds are increasing the problems, or am I just in a bad flare and am more aware of the symptoms now?

Also, I have no idea how far or bad the inflammation is, and how bad my Crohn's is. I am just confused, scared, and feel like poop. (pun intended)

 

[POTTYTIME!]

I understand what u r going through. I too am going through the same thing. My GI has started the process of getting me on to the humira injections. I currently take 4000 mg pentasa with no benefit. Getting worse, not to mention the lovely side effects of the prednisone. If you are not getting better in 3 weeks, then I would say talk with your GI. They will try to prolong the pentasa as long as possible for the insurance company benefit. Crohn's is a person by person treatment.

 

[apopolizio]

Thanks for replying. I am going back on the 4th and my Mom is actually coming with me. She has been reading a lot and has a page of notes and questions she wants to ask. I know I am not a little kid, but am actually really glad she volunteered to come with me. She will think of things I dont, and she will also listen better than me, I am still kind of in shock.

I just really want to feel better. I am over feeling crappy and never feeling really good.

 

[POTTYTIME!]

It helps to have all the help you can get. Nothing to do with being a kid or adult. Its a life long thing you have to deal with. Refer to the saying, Many hands makes light work.

Sometimes family and friends support can make you feel better than any doctor. Keep you head up. Good idea to write all you questions down. I have a note bbok to track symptoms, and questions, blood sugar, etc.

 

[David]

Hi there and welcome to the community.

I'd be questioning your GI REALLY hard. Why did he say everything is fine and then there is fistulas? If you do indeed have fistulas, there only being on Pentasa for fistulizing Crohn's disease is nowhere near enough. If your GI disagrees with my sentiment on this, I strongly suggest you get a second opinion.

All my best to you.

 

[apopolizio]

Thank you both. After the next appointment if my GI does not give me more / new medicine or doesn't help I will definitely look for a second opinion. This forum is great and don't feel so isolated. It's hard to explain everything to someone who does not understand the pain I have.

 

[David]

Glad to hear it. Please keep us updated!

 

[Nancye50]

I have no idea why GI's prescribe Pentasa to someone in a flare. If you don't walk away from the next appt with at least a short course of pred, make a second opinion appt asap. If there are fistulas, you get the honor of calling it "fistulizing Crohn's" which usually has to be aggressively treated. Don't let them yank you around!

 

[apopolizio]

nancye50, thanks! And Yes I definitly will be. After reading a lot recently, I am very curious to see what he says next week. I need to feel better and this medicine is really not helping what so ever.