1st apt with GI today left me hopeful

[kimmysue]

Well...my local Dr.s told me "You have Crohns"....after a scope showed severe ulcerations, and my permethius labs came back positive for Crohns they said...and said I needed to see a gastroenterologist....So we decided to go to Barnes Hosp in St Louis....He said...after reviewing everything, an talking...."I cant sit here and tell you you have crohns...but, I also cant tell you you dont" Apparently by SED rate was high, bit not teriible at 35...he said the permethius di show things consistent with Crohns...but some of the markers they see with Crohns in the test were not there. But, that it also tests some sort of genetic markers and they were there. I have been taking Aleve everyday for about a year...said it could be from that, or an infection that caused the ulcerations. SO he started me on sulfasalazine...but the dosing on the pill bottle from the pharmacy is different that what I thought he said, so I better check on tha before I start it...they are 500mg pills and it says to take 3 pills 2x a day....I thought they said 2 pills 3x day...any of you ever taken this? What was/is your dose? He will rescope after 60 days on the meds...and then hopefully be able to tell me more.

I hate not knowing, but I like the possibility that it may not be Crohns!! But wow..I have sooo many symptoms of what you all talk about as a fleir...with the extreme body aches and tiredness, but maybe that would also happen with a colitis from infection, or other reason also... Confused...but happy!! Hope the meds help! LOVED THE DR!!!

 

[Crohn's 35]

:welcome: kimmysue. First I would like to caution you NOT to take Aleve, or ibuprofen. They are bad for IBD sufferers and makes it worse.

Second I had test after tests,for a year and there is no "set rules" for markers or bleeding, ct scans. Everyone is different. Always make sure your dose is adequate. I had a mix up once and now I am careful what goes in my mouth. Hate taking pills but after20 years you get used to it.

Keep us posted on how you are doing, we are here to help any way we cant. Glad you are here to join us!!!

 

[kimmysue]

Hi Pen, thanks...

Yes I stopped the Aleve as soon as the bleeding started...I have b=had bowel issues my entire life, I had an episode of alot of bleeding one other time when I was like 22, im 40 now.

I know I still have a probably fairly strong chance of having crohns, bt at least there is hope after this appointment!! The last 3 weeks have been a roller coaster...from the start of we think you might have a carcinoid tumor, to a week later that test was OK, and they said you dont have cancer...huge weight off shoulders...then within an hour they called and said they had the permethius (?sp) test back and that I had Crohns...crush heavy weight again...then to St Louis to day for the well maybe crohns maybe not...just ready for the ride to be over...and to know what is happening to my body whatever it may be!! Thanks for all the support on here...its wonderful

 

[Crohn's 35]

I hate that when they suspect something that causes you to go in stress mode and scared and then they say no, it isnt that. Best to say nothing until proof is in the pudding so to speak. There will be more support coming, everyone is great here!! Hugs.

 

[kimmysue]

I have only been on here for a few days, and I already can "feel the love" Its just so great with all of todays technology to be able to get advice, and support from people who understand exactly what your going through. PArt of me hates to "get my hopes up" that its not crohns...but, for now there is at least a little hope. Although, I really think that is it is crohns...it would explain alot of what I have been feeling for many years!!!

Thanks Again!!

 

[Angrybird]

Hi kimmysue, just wanted to say hello and welcome :bigwave: I hope things improve for you soon and that you can get your dosage sorted Keep us updated on how you get on.