Hi! I'm new... Idk what I'm doing... Help!

[Melly]

Hey guys! I think I've figured it out. So here I go.. I'm gonna do a short story since I'm on my phone...
I was diagnosed with Crohn's a little over a little over a year ago. I originally thought I was having problems healing after my c-section with my son. I was wrong! After 5 trips to the ER within a week for severe heartburn they finally diagnosed me with HPylori. During the process of that, they saw my intestines was a little bit inflamed and gave me antibiotics. I thought nothing of it.... When I went to check up with my regular doctor she told me I needed to see a GI for everything that was going on. We did a colonoscopy which determined the Crohn's. I've never really heard of it before.. I was scared. I still am, I really don't know much about it. My GI told me it has nothing to do with diet... But I know there is certain foods that make my stomach hurt bad. He put me on pentasa.. Which seemed like it made my stomach hurt worse then before. I've had a couple of flare ups, but nothing to serious. He tells me I'm his "healthiest patient"... I stopped taking the pentasa. I'm now eating healthier & taking all natural vitamins & probiotics. My stomach has been feeling pretty good. Except when it's that time of the month for some reason. I just don't really know what to do sometimes... & my GI doc isn't very helpful.. Seems like all he wants to do is sell me pills. Blah
Okay, I'm rambling... I'm hoping to make some new friends here so I have someone to talk to when I'm feeling down. Sometimes I get depressed....
Anyways
Thanks for reading!

 

[pink&green]

Hello Melly and :welcome: glad you found the forum there is lots of support and advice on here so don't hesitate to ask.

 

[Melly]

Thank you

 

[scottsma]

Hi and welcome.This darn IBD can be scary,especially if you've no one to talk to about it.Even so,I hope you get support from family and friends.But unless they have Crohns etc.it's very difficult for them to relate to us,even though they care.This is where this forum wins hands down.Although each of us are different we're all in this together.So don't be afraid to ask questions.You'll get lots of support and advice and make many friends.Best Wishes.

 

[mdd]

Hi welcome your in a good place. Do not worry to much about pills. Compare to others I read on this site. Better than surgery. That is tough. I never had surgery just meds for over 20 yrs. you will have good days and not so good . But you can get though it . We are here to get you though it all. Knowing others have is thing helps. You may get depressed it's ok . I cry once in a while it cleanses me and I move on and fight. You can also. Ask questions to your Gi doctor. I have a list and he does not leave till we go over every question. Unless he has a emergency! ( they could be me) ha, keep not book on how you feel. I do I list my appt. and what meds they give me. Their will be weeks months nothing in my book to right and times ouh days of feeling bad. It saves time to remember stuff. Sorry went on and on :smile: I hope I help you Maria

 

[Noxxia]

Hello Melly! I'm new as we'll to this site as well, although I was diagnosed 8 years ago.
I saw in there hat you stopped talking your pentasa. Of course you do have your own choice about whether to take your medication or not, but it's not good to stop it. I stopped mine 2 years into diagnosis because I changed my diet and felt better. I thought eating healthier would be enough. But it isn't, inflammatory bowel disorders dot have a cure and will continue to get worse without proper medication. Because I wasn't diligent with taking my pentasa I now have to start remicade. It's a 2 yr infusion every six weeks for the rest of my life. I would much prefer to get away with just talking pills, but sadly it's progressed far beyond that. I hope this helps you reconsider your meds.it can really keep future surgery away for many, many years.
As for your GI, there are some good ones and bad ones out there. My first couple of GIs didn't really like to help people. They just wanted to get me in and out and onto the next person. The one I have now though truly cares about his patients and takes enough time to answer all my questions. If you think your GI is trying to blow you off and just sell you pills, I'd try another doctor!
But, this forum is great! There's lots of good ideas about diets to keep symptoms down and people who are here to help you through your worst days.

 

[Melly]

That makes me worried a little bit! Did you also have just a mild case? I don't want to end up having my colon removed or something... But I know that pentasa really hurt my stomach worse then now, on nothing,. & I'm hate needles & probably could never give myself a shot. Is there any other form of pill that I could take?

 

[Noxxia]

I started off with crohns so mild it took 3 doctors across 2 years and a colonoscopy with biopsies to get diagnosed. I had minimal symptoms - mainly pain passing stool and blood on my stool. Other than that I was healthy, playing sports and lots of energy. Now a part of my colon is so swollen it's almost swollen shut and I'm on an extremely low fiber/low residue diet and starting the infusions.
I do remember before I was trying the pentasa my old doctor did prescribe me a different pill. I had an effect with it so I couldn't use it anymore. But definitely speak with a GI about other medication options if you're having a reaction to it.
Also there is a blood test that you can have done that will tell you your future compilations due to Crohn's disease - basically how bad it will progress. That gives the doctor a very good timeline on how bad your disease is and the best course of action to avoid surgery.
Also about surgery, my GI and rectal surgeon told me that they will try every single drug possible for you before they consider surgery as an option (unless it is life threatening to not have surgery).
Anther thing to help your doc is to take note of all food, work outs, symptoms (even head aches and stuff, not just stomach issues) and bowel movement. This can help the doc create a good plan for you as well and help develop a diet that will irritate your colon/intestines the least. I got an app for my iPhone it was $4 but well worth the cost. It's very specific with details and my Gi loved the info he got from it. It's called my symptoms. It looks like a little note pad with a ! Inside a triangle. If you want a free one I know the crohns colitis makes one too but it didn't offer as much detail.
Wow I'm sorry this is so long, but I hope it helps!!

 

[Melly]

I will definitely have to talk to my doc about a different medication then.. I'm terrified of having surgery. & want to avoid that at all cost!
I did not know that they could do a blood test to determine how bad it could get! I'm going to make an appointment with my doc on Monday... I'm not sure how good of a doctor he is, but I don't have good insurance, & I know GI visits can get quite expensive if you don't have regular insurance. Hopefully it will all work out in the end.
& I literally downloaded that app a couple hours ago!! I hope it helps!

Thank you guys so much for the advice. I truly appreciate it! There's no one for me to talk to with similar issues... So it feels good for a change to have people who know what they're talking about talk to me!

 

[Noxxia]

Hey no problem! I know it's scary going through this alone. Do you know if there's a support group in your area? If you don't know your doc might know.


Noxxia
8 yrs with crohns

 

[Melly]

I'm not sure.. I live about 60 miles from Chicago, IL, so I would assume that there would be something! I tried googling it before but found nothing in Chicagoland area.. I'll have to ask my doc about that as well..