Just Got told

[alana]

So just got told this past week I have Crohns..I do not know anyone else who has it so can not ask What is it really about...Looked on goggle and so much information its over load ..Would like to hear from real people about what to expect as I really do not know anything about it as of yet.
I have to go for a colonoscopy as I have two areas of erosion that need to by biopsied next Friday.
Hopefully then I will get more info about a treatment plan..
Thank you for reading.

 

[ronroush7]

Welcome. I am sorry you have this disease but you have come across a very supportive group. Crohn's is a disease that can affect anywhere in your Intestinal tract from your mouth to your anus. I have had mostly a history of fistulas ,an abscess and a bowel obstruction. All of these have required surgery. I hope your doctor can find the right combination of medicines to get you in remission pretty quickly. Feel free to come here often.

 

[marlap2]

I was diagnosed 30 years ago, but for one reason or another all paperwork disappeared. I was on meds for a year and then tried on my own after way too much prednisone. Fast forward. New Doctor. She said there are no records of colitis or Crohns, so I must be imagining it. She gets stool samples from me. Phones and says, you have to go to this GI doc this week. Colonoscopy a few days later. Voila. Crohns. Looking forward to hearing back from my GP. Further tests needed from the GI because she's looking to see where in my GI tract that I DON't have Crohn's. I don't look like your typical Chronie, because I'm obese. But now that I've done some investigation, it looks like I'm pretty typical. Just a little angry, but at the same time, feel a little vindicated after years of apparently "invisible" pain.

 

[jewels63070]

I was diagnosed at the end of March 2015. At the age of 43 was quit a shock. They really have told me to take medicine and gave me a pamphlet to Crohns and Colitis Foundation. I recently have had an "episode" 1st big one since I was diagnosed. I was told I have mild to moderate Crohns. I really didn't take this too serious until this pass week(Take it seriously). All I can tell you is that, from looking things up, this is an autoimmune thing causes inflammation in the intestine. They will give you medication to try to control the inflammation. I am on Entocort and Pentasa, but since I have been having "episodes" may start on Humira(injection). This takes a toll on you and I hope that you find out what you need. Take care of yourself and keep educated(nice people on here told me that). This sight is just wonderful and have been a great help. Good luck and God bless

 

[SB7]

Welcome to the forum. I have been on this site only for a short amount of time. Everyone is friendly and tries to help as we all go through these type of issues.
I was diagnosed at 54 in 2008 with what my doctor said was Crohn's, until proven otherwise. My issue is in the small bowel, where it can only be seen by a capsule endoscopy (camera pill), although I have had small bowel test, ct enterography, and a ct scan when I first was admitted in the hospital. While I do have bouts of diarrhea and have for a very long time, my main issue was severe abdominal pain, due to strictures. The only med I'm currently on is pentasa. Eating the right foods for me and staying away from certain trigger foods have helped with these issues.
I'm sure you'll find a lot of helpful people here. Not everyone has all the same issues but I'm sure you'll find some common ground with good people.

 

[RickS]

welcome as well.
yup, reading up here is way better than google. lots of history/experiences, wish this forum was around when i was diagnosed 20 odd years ago. I bought a book on cd and uc to understand more and what the treatments were, some were scary to say the least.
you are better off being informed, that way you are prepared to ask intelligent questions to your GI and they know you did your homework, get to spend more time with them. somehow you get better results from your dr when you are informed.
i know it is still early but it certainly helps if you explain your symptoms and the area of your GI tract that is involved. helps you get your story together for the GI visit/followup.
describe the food you eat and how your body reacts to different food. food is not the cause, but it certainly can make it worse.
good luck, lots of help and support from cd veterans here.

 

[ronroush7]

welcome as well.
yup, reading up here is way better than google. lots of history/experiences, wish this forum was around when i was diagnosed 20 odd years ago. I bought a book on cd and uc to understand more and what the treatments were, some were scary to say the least.
you are better off being informed, that way you are prepared to ask intelligent questions to your GI and they know you did your homework, get to spend more time with them. somehow you get better results from your dr when you are informed.
i know it is still early but it certainly helps if you explain your symptoms and the area of your GI tract that is involved. helps you get your story together for the GI visit/followup.
describe the food you eat and how your body reacts to different food. food is not the cause, but it certainly can make it worse.
good luck, lots of help and support from cd veterans here.

I too wish this forum had been around when I was diagnosed.

 

[alana]

Thank you everyone for reaching out... You have all helped me to understand this situation more ..
I'm doing good ... I have the bloating and blockage rather than being lose...
Which although uncomfortable is maybe the better situation ... We shall see ..
Hopefully after Friday biopsy I will get more information and I can ask questions I need. I also looked up best specialist in Raleigh for this .. And will ask him for second opinion before I do anything..
Again Thank you Everyone for the warm welcome.. Sending positive thoughts to you all

 

[fuzzy butterfly]

Hi Alana welcome..
Sorry for your need to be here. I agree with what the others say keep notes of how you feel and write down any questions you have so when you see the gi you dont forget to any that you thought of.
Hope can find your right treatment soon. Best wishes ..

 

[susser2000]

Hi, Alana. It's hard to tell you what to expect as everyone has different experiencing with this disease. The only advice that I can give you is to take this very serious. When I was first diagnosed, I was very young and didn't experience any symptoms for a while so I stopped going to the doctor and taking my meds. I ended up paying for that by having a couple bowel obstructions and landing in the hospital.

I hope everything goes well for you and your Crohn's doesn't affect your everyday life too much.

 

[ronroush7]

Hi, Alana. It's hard to tell you what to expect as everyone has different experiencing with this disease. The only advice that I can give you is to take this very serious. When I was first diagnosed, I was very young and didn't experience any symptoms for a while so I stopped going to the doctor and taking my meds. I ended up paying for that by having a couple bowel obstructions and landing in the hospital.

I hope everything goes well for you and your Crohn's doesn't affect your everyday life too much.

I stopped Remicade because of cost and ended up with an obstruction.

 

[Ian_H]

So just got told this past week I have Crohns..I do not know anyone else who has it so can not ask What is it really about...Looked on goggle and so much information its over load ..Would like to hear from real people about what to expect as I really do not know anything about it as of yet.
I have to go for a colonoscopy as I have two areas of erosion that need to by biopsied next Friday.
Hopefully then I will get more info about a treatment plan..
Thank you for reading.

Hey alana, you are not alone! It is a life long endeavor but it can be managed. There are many different treatment options available. I was diagnosed roughly in 2009. Everyone is different with their disease meaning, pain levels, severity, medications treatments that work for them, remission length etc... I hope you find a treatment that works for you! If you have questions about a treatment feel free to let me know. For me, I get 3-6 bad flares a year on average before I started Remicade. I have only been on remicade for 8 months but no flares yet so there are meds that work.

Best of luck!

 

[Ian_H]

I stopped Remicade because of cost and ended up with an obstruction.

Yea it is a pain that its so expensive but works so well. Kinda ironic isnt it.

 

[ronroush7]

Yes