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19 replies

I now have Crohn's.... :-(

OZOZMember
This is what I have been dealing with..

I get the feeling to go.. i hold it just enough to get to the bathroom.. I sit down.. nothing...

in addition to that.. other times.. I go a little. strain to get a little out.. and nothing else... i go back to what i was doin.. not even two minutes i have to go again.. this pattern repeats for hours until i get the "troublemaker" as i like to call it.. and I release a large amount of gas and wet stool.. then i take codeine (as prescribed) and can usually make it many hours b4 i have to go again...

THis above situation makes me feel like i wanna rip my skin off..i feel like i am having a panic attack..(mostly from the stress)...

so now I have been tested for and confirmed that I have Crohn's. I am going to my initial appt., and my doc .did the jpouch surgery told me what to expect from the new doc... he said either Remicade or Humira.. I am looking for feedback on both... pros/cons...ile have head good things about both.. just looking for help..

This le situation has caused great depression for me myhich I intend to address with another doc).. I feel like starting a new relationship would be impossible.. (who is going to want to deal these issues :-(

Thanks for your feedback!!!
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T TroyMember
Oz, I went through a similar situation this past summer. I had similar symtoms and my GI doctor diagnosed Crohns as well. I tried Humira but it did not help. Tried remicade, same result. I finally went to Dr Shen at the Cleveland Clinic and his diagnosis was not crohns. I had a sinus tract and severe proctitis and pouchitis. Not saying this is your case, but most GI's do not specialize in J pouchs.
J jeaneMember
Tdr.
I'm sorry if I asked this before. How did they diagnose the sinus? I really think there is something going on with me other than Popko wants to recommend u fur scholarship to uconn. Just saying standard cuffitus. The anal pain has been unbearable and can take my breath away. My Gi does have jpouch patients and claims all my issues are mechanical. I'm not exactly sure what that means other than I think my stricture reduces blood flow to my anal area which prevents the ulcers from healing. Repeated passes to fully empty my pouch (often many at times) further complicate things. How does one know for sure if they have a sinus and is a sinus the sane thing as a leak?

I think the point here is it can take many tests to figure out what your real problem can be. I hope doctors are not throwing their hands up at times when we present with multiple issues and then want to give your symptoms a diagnosis. I would request further tests if you are not satisfied with your doctor's diagnosis. There are many people on this board with similar pouch issues who have not been diagnosed with crohns.
CTBarristerCTBarristerMember
The Prometheus Test is considered the least reliable diagnostic test for Crohn's, and none of them are reliable. Saying that Crohn's is "confirmed" by a Prometheus blood test is like saying that the Earth was confirmed to be flat in the 12th Century- which it was!!!!!! And Galileo almost was burned at the stake when he attempted to prove otherwise.

The most reliable diagnostic test is the camera endoscopy, second most reliable is the MRI Enterography and 3rd most reliable is the CT Enterography. The Prometheus blood test is far below the other ones in scientific reliability.

Nothing has been confirmed, but it may help you if your doctors treat you as if you have Crohn's.

By the ways, guess what the results of my Prometheus test confirmed? That I have neither UC nor Crohn's!!!!!!!!!!! I guess they took out my colon for no reason?????!!!!!!!! And the pouchitis I have been treating for the last 18 years must have come from aliens who escaped from the set of the movie Prometheus, right?

By the ways have they talked to you about the camera endoscopy or the MRI Enterography?????? My MRI Enterography did not confirm anything but it let my GI know the area of my ileum that is thickened and that area is now being watched. Most of my ileum is normal healthy tissue.
mgmt10mgmt10Member
I would look into this further....you may not have Crohn's. As stated by others, that Prometheus test isn't all that reliable. I would hate to see you on those nasty biologics for no reason. You may really have it but if I were in your shoes I would do more testing. Perhaps the pill camera test that really gets inside and can see what's going on in the small intestines.
J jeaneMember
I tend to agree with all the comments here. Pre jpouch surgery, I was diagnosed with UC and had no anal/rectal issues to speak of. Most of my inflammation was in my sigmoid. Ever since having jpouch surgery, my disease is behaving more like peri-anal crohn's disease.I never took antibiotics with colitis, my pouch is in good shape despite a couple small superficial ulcers and my cuff has gone to complete hell since the operation. Antibiotics now seem to help my anal issues which I do not completely understand either. I was diagnosed with UC when I took the prometheus test last year. Insurance companies put so little weight in this test that most will not even cover it.
OZOZMember
another side note.. my surgery doc did the Prometheus testing.. I am now getting set up with a GI doc who I am sure will do more testing. Trust me.. I have been trying everything possible with the notion in mind it is pouchitis.. I have lost 30-40 lbs in the past few months because I am afraid to eat too much because it kills me after and even the little I eat.. I am going 15-20 or more times a day...

There is something definitely amiss...More testing will be done.. if it isn't crohn's that will suck.. because at least I had an answer then....
Mental KaseMental KaseMember
OZ,

I was Dx'd with Crohn's in 2011 through a series of tests; CT, Scope, and a tissue sample that was sent to lab. I was given a Pometheus test before starting Azathioprine. I'm currently injecting Humira (40mg/0.8ml) and taking a low dose Azathioprine chaser. Is it controlling my Crohn's? I don't really know what I'm supposed to feel like, I've never felt it. My expectations are so low that I guess it is working, sorta.

I feel awful most of the time but I'm so accustomed to it that I consider it my 'normal'. I concur with some of your symptoms. I have an odd feeling of constipation mixed with profuse diarrhea and endless urge. Huge gas boluses bang their way up and down my GI tract all day and all night. Sometimes I can release it, sometimes I can't -it has driven me mad, yes. I can hold an urge for many hours, I've trained myself to hold it since I can't be on the toilet at the whim of every urge -I would never leave the bathroom if I did. I've found that one particular drug (>0.5mg Klonopin) will cause me to lose my ability to hold it in the middle of the night, like clockwork, guaranteed mess. Not worth complaining to my GI Docs about anything anymore, they do nothing and have no answers. So, I've been conditioned -as we all have- to just self manage as best I can and try to live a life. As for a love life, I don't have one anymore. My Libido is so low being sick all of the time, but I do miss just having a best friend and someone to hug and share things with....

MK
Edie A.Edie A.Member

Hang in there oz, you and me both are in the same situation. I am currently in the hospital and have had already three MRIs done, my latest MRI enterography showed thickened walls of my pouch as well as inflammation higher up in my small bowel. So I have just been told straight up that it is very likely to be crohn's. Currently also with C. Diff so I have already started treating that and will start humira as soon as quantiferon comes back negative. This sucks really bad because I was diagnosed with just UC and only had two flare ups in my life (I'm currently 20 years old only) and now they're telling me it's crohn's is like a major blow :/ anyway hope you and everyone else are doing well, we are strong and in it together! 

CTBarristerCTBarristerMember

Edie,

I had similar MRI Enterography findings and similar conclusions but not understanding why you think Crohn's is a "major blow." Would you rather have treatable Crohn's or untreatable UC? The point is you have what you have and either it can be treated or not, and whatever labels we put on it isn't going to change anything. There are some people who have very treatable Crohn's and they don't have any surgery at all and there are some that are hard to treat. Don't fall into the "I have Crohn's And the Sky Is Falling" club of threads we have on this board. It's just irrational fear not based on any evidence. The only evidence that counts is how your body responds to whatever treatments are thrown at it. Mine has responded pretty well.

Edie A.Edie A.Member

You're right CTbarrister, I've learned that during my whole process through this I've been quite anxious the whole time, this time around I'm going to just take my recommended meds and see what works for me and continue living. That being said hopefully the humira treatment I start works well! Luckily we live in a day where we have many options given to us. 

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