New to this forum, definitely not new to this disease.

[cnt]

Hey,
New to the site, unfortunately not new to Crohn's Disease. I plan to add my story soon, just need to find the time, my stories a long one.

I was wondering if any members here on this forum were also members of the Crohn's Sanity Forum? I miss that site more than I could possibly put into words. Myself and my wife, Tara, got through some of the darkest and hardest times due to my Crohn's Disease, because of the support our Crohn's Sanity "family" provided all members.

Anyway, I found this site while searching the web, guess I am hoping it turns out to be a new support system for us.

 

[ronroush7]

Hey,
New to the site, unfortunately not new to Crohn's Disease. I plan to add my story soon, just need to find the time, my stories a long one.

I was wondering if any members here on this forum were also members of the Crohn's Sanity Forum? I miss that site more than I could possibly put into words. Myself and my wife, Tara, got through some of the darkest and hardest times due to my Crohn's Disease, because of the support our Crohn's Sanity "family" provided all members.

Anyway, I found this site while searching the web, guess I am hoping it turns out to be a new support system for us.

Welcome. I wish you the best. There is a lot of support here.

 

[Kero]

Hey there, welcome!!! This site is amazing for support and information Lots of fantastic peeps, and you can ask pretty much anything and get a response, because someone has gone through it

 

[cnt]

Thanks guys! Really busy right now with my boy's different sports, but I am definitely looking forward to checking the site out and getting to know everyone!

 

[Mvan]

Hi there I am new to this site, and I honestly am just looking for advice and information on Crohns disease. I have been struggling with SOMETHING for the past 5 years... I have had a lot of testing done and also a endoscopy and have not been diagnosed, Have spent thousands of dollars on appointments and testing, but now after research I am wondering if Crohns may be the answer... I am looking to see what the symptoms people have are.. and also how they got diagnosed. Thanks in advance!

 

[ronroush7]

Hi there I am new to this site, and I honestly am just looking for advice and information on Crohns disease. I have been struggling with SOMETHING for the past 5 years... I have had a lot of testing done and also a endoscopy and have not been diagnosed, Have spent thousands of dollars on appointments and testing, but now after research I am wondering if Crohns may be the answer... I am looking to see what the symptoms people have are.. and also how they got diagnosed. Thanks in advance!

Welcome to the group. My symptoms are usually going to the bathroom frequently, bleeding, nausea and weight loss.

 

[cnt]

I have lived with Crohn's for the past 25 years (ugh, that is always so depressing to say, realizing I have lived with this over half my life)!

As far as my symptoms go, pretty much the same as ronroush7 said. With some of my bigger flare ups I also can run some pretty high fevers too. I also have a permanent ileostomy too, since I've had that the amount my bag fills up and the consistency of it are symptoms too.

 

[ronroush7]

I have lived with Crohn's for the past 25 years (ugh, that is always so depressing to say, realizing I have lived with this over half my life)!

As far as my symptoms go, pretty much the same as ronroush7 said. With some of my bigger flare ups I also can run some pretty high fevers too. I also have a permanent ileostomy too, since I've had that the amount my bag fills up and the consistency of it are symptoms too.

I had a small portion of my stomach removed five years ago. Think I might currently be in a flare.

 

[cnt]

I had a small portion of my stomach removed five years ago. Think I might currently be in a flare.

I've had 5 surgeries and I'm also in a pretty big flare up right now. Have been for a few months now. Was on Cimzia for a couple years and it was working some, unfortunately my body has built up an immunity to it. Starting Entyvio infusions now. Was told like Remicade,which I was also on years ago, it takes a while for it to build up to where you are feeling the affects from it. This means at least another couple of months feeling like I do. It has been so hard this time! Waking up in pain everyday or sometimes not even sleeping because of it is no way for anyone to have to live their life!

 

[ronroush7]

I've had 5 surgeries and I'm also in a pretty big flare up right now. Have been for a few months now. Was on Cimzia for a couple years and it was working some, unfortunately my body has built up an immunity to it. Starting Entyvio infusions now. Was told like Remicade,which I was also on years ago, it takes a while for it to build up to where you are feeling the affects from it. This means at least another couple of months feeling like I do. It has been so hard this time! Waking up in pain everyday or sometimes not even sleeping because of it is no way for anyone to have to live their life!

Was on Cimzia and it worked for a while and then failed. I was on Remicade and then developed an allergy to it. I am currently on Stelara but I am wondering if it is failing.

 

[Mvan]

Does anyone have any suggestions of questions I should ask or what kind of testing I should ask to be done? I have my appointment on Wednesday with a specialist and its a different one then I went to last year, I want answers and I want to know what the heck is going on with me deep down inside I really feel like its crohns but I don't really even know what kind of questions I should ask..

 

[ronroush7]

What type of symptoms are you experiencing? Have you had any testing?

 

[Mvan]

I have had testing done last year I only had a endosocopy done, and that was super expensive (still paying for it). I am sick all the time almost every single day, Stomach cramping bad that makes me bedridden, vomiting, nausea, diarrhea almost every day..But some days im alright and I can feel some what "Normal" I don't really even know what that is any more.

 

[ronroush7]

What were the results of the test? I think for starters you should mention all of your symptoms. Ask him or her about treatments or medicines or any changes in food you need to make.

 

[Mvan]

I have already done all the food restrictions or any diet under the sun, The results were only that I had a irritation in the lining of my stomach, but that didn't pin point anything!! They never prescribed me anything and its been actually getting worse now, I have lots 10lbs in like 2 weeks from not eating just don't have a appetite.

 

[ronroush7]

It seems like they should have more information than an irritation in the lining of the stomach. See if you can get more information from the specialist.

 

[ronroush7]

Keep us informed.

 

[Mvan]

Will do thanks!!

 

[ronroush7]

You are welcome. Best to you.