The doctor says its not Crohns now

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I hope he has more than the endoscopy to go on. A stricture will cause similar symptoms, and that seems more likely.

H-pylori infection will cause some of the symptoms.

Dan
 
Wow, quite the turn of events....I know I don't have that, at least from judging the symptoms....BUT, I'm very concerned that due to the failure I've seen with treatment that Crohns may or may not be what I I have....I've feared it's something very similar to Crohns, so much mystery and difficulty when diagnosing IBD's....

How has this changed your view of your "disease"? Does this set you at ease or bother you?
 
Eye opening bit of reading... Never heard of it before. Has your GI given you any timeframe or testing framework he/she will pursue to confirm this new diagnosis?

Drew, I don't know whether you've dodged a bullet, or walked into a bear-trap. I am guessing you don't either, at the moment. Take whatever time you need to... (jeeze, I was going to say 'digest' this, but that seems way inappropriate, and 'absorb' it doesn't sound much better... and I'm not trying to be funny for a change).. aclimate to this potential 'new' diagnosis, and let us know how you are doing. I mean, if this dx is right (is that still up in the air?) then you have a brand new learning curve ahead of you... And, if you feel up to it, then maybe you can share that here... for those whose symptoms MIGHT be similar enuff to your own to make them possible candidates for this dx too. It's not like there isn't a history of delayed or incorrect diagnosis with IBD, or is it Gastroparesis?
 
Non of the symptoms on that sight mention diarrhea. Has that not been an issue for you? Is it possible that you have both???

Are you disappointed by this potential diagnosis or releaved?

Amy
 
I'm neither disappointed nor relieved. I did ask him about the diarrhea which has been a huge issue of course. In fact I went in initially because i thought I had the flu of all things. And he did say it is characteristic of this issue.

I guess I'm praying, though I'm not a religious type, that this is it, if only because I finally have an answer. I'm still on the fence. Maybe it is both. I guess I'll know over the next couple weeks.
 
When it comes to situations like yours, Drew, I get frustrated with physicians. I know it's not their fault but I wish that things were more obvious or cut and dry. It just seems so radiculous that doctors can't figure this out.
Have you had the prometheus lab test yet? If not, I would ask your doc if they could run it.

Amy
 
If you have not had a CT scan, it may be a good idea to ask about getting one. My major problem was not detectable with a scope and only was visible via CT scan.

Maybe they have already done this but trying to cover all the bases.

Let us know how it turns out. It is a frustrating process.

Dan
 
Yea I'm definitely frustrated and maybe thats why I'm latching onto this. Whether it be this or Crohns or whatever else may come. I just want to know. I have no problem doing battle provided I know what I'm battling. The Dr seemed pretty damn certain that this is the Super Sekret answer(tm). 7 days will tell me (us) whether he's right or not.

FWIW I've had the following;
4 CT scans + 1 CT enterography
6 sets of xrays
1 Small Bowel Follow Thru
Colonoscopy/Upper Endoscopy (Upper Endo x2 now)
I've tried Pred, Pentasa, Entocort, Cipro, Flagyl and Imuran

His suspicion is that I got some weird viral/bacterial infection that caused/s/ing the inflammation in the small intestine and that started the issue with the stomach.

I'm going to call my GP on monday and see if he'll put me back on Cipro to see if it helps prove the infection theory.
 
I feel your frustration as you know.....it's like playing 20 questions with your body...."is it the flu?" nope guess again...."is it Crohns?" maybe...."is it a tape worm?" getting warmer....."is it Ulcerative Colitis?" getting cold............

Such an enigma is the human body and its quirks.
 
Day 3 of regulan and get this folks ..

I feel ..... better .. I can't believe it ...

I really hope its not just anecodotale coincedence . but I actually feel better. No pain, I was able to eat pretty much whatever I wanted yesterday and today with absolutely zero pain .. and I passed my first "normal" stool in over a year ..
 
I hope it continues to work for you.

If the problem was caused by a bacterial infection, I would think you would want to get rid of whatever is causing this.


Dan
 
As someone else stated, I would get the prometheus labs test as it is a highly regarded test for crohns. Its a bit costly (~$250-$400 I think) but having the peace of mind it gives is sort of nice, especially in your case if it can actually rule crohns disease out. Otherwise, goodluck with this treatment and hopefully the good feelings continue!
 
I forgot to mention I did have the prometheus test and it came back negative. Thats whats been so puzzling. I know I'm excited over these inital results and it could turn out I don't have this, don't have crohns, have both or some weird combo.
 
drew_wymore said:
FWIW I've had the following;
4 CT scans + 1 CT enterography
6 sets of xrays
1 Small Bowel Follow Thru
Colonoscopy/Upper Endoscopy (Upper Endo x2 now)
I've tried Pred, Pentasa, Entocort, Cipro, Flagyl and Imuran
Click to expand...

Man, that sounds so familiar. I really do hope this is finally an anwer for you. I keep getting more and more worried about myself, as I keep developing more problems that seem to come out of nowhere. Celiac was enough, but in these 27 months of the IBD constant pains, you can add Hypothyroidism, worsened Asthma (i will find out in June just how much worse), Esophogitis (STILL untreated), and a Hiatus Hernia.

As far as tests goes, my count is also ridiculous:
2 x Pelvic/Abdominal ultrasound
2 x Colonoscopy
2 x Barium x-rays/Small-bowel follow through
2 x Endoscopy
(i haven't kept track of the x-rays, but it's at least 5 times)

Believe it or, I don't even know the results of my ultrasound and small-bowel follow through from September :ybatty:

I've also been accused of it being an infection, and have also been on Cipro and Flagyl (and Prednisone for a very short period of time).

If this your answer, it will sure give me the extra hope that maybe one day I will solve this mystery too.

~ Lisa ~
 
Well I hope that each of can find an answer and get to a point where we're not hurting so much and we can all enjoy one anothers company and commiserate about "old times" when we were hurting so much. I don't even know how much blood I've given but I know its too much as I'm sure we all have.
 
drew_wymore said:
Well I hope that each of can find an answer and get to a point where we're not hurting so much and we can all enjoy one anothers company and commiserate about "old times" when we were hurting so much. I don't even know how much blood I've given but I know its too much as I'm sure we all have.
Click to expand...

That's for sure about the blood. Last week I got blood work done twice in a 3 day span! At it seems to be at least once a month, now. My vein is un-usable already on my right arm, they can't draw (without it being PAINFUL) from the centre anymore...and bloodwork is not fun when you're terrified of needles =(

~ Lisa ~
 
Not to derail things but re: blood .. there's a comic by the name of Mitch Hedberg who does a bit about doctors.. he says "I went to the doctor but all he did was suck blood from my neck, don't go see Dr Acula .. " and everytime I'm getting blood work done I think of that bit in my head.
 
drew_wymore said:
Not to derail things but re: blood .. there's a comic by the name of Mitch Hedberg who does a bit about doctors.. he says "I went to the doctor but all he did was suck blood from my neck, don't go see Dr Acula .. " and everytime I'm getting blood work done I think of that bit in my head.
Click to expand...

That's a good one..

~ Lisa ~
 
Oh God, Mitch is the best

"I bought myself a parrot. The parrot talked. But it did not say, "I'm hungry,"... so it died. "

"I don't have a girlfriend. But I do know a woman who'd be really mad at me for saying that."

"I once saw a forklift lift a crate of forks. And it was way too literal for me."

"I remixed a remix, it was back to normal. "

"A severed foot is the ultimate stocking stuffer."


Edit: I forgot to mention congrats on the results Drew, never heard of regulan, is that an antibiotic?
 
I've had a small set back today. I ate salad yesterday and that seems to be causing some issues but we'll see.

Regulan is something that stimulates the stomach muscles since mine apparently aren't working properly.

Mitch is definitely awesome..

They say Diet Dr Pepper tastes just like regular Dr Pepper, well then they fu*ked up!
 
Some of my favorite Hedberg quotes:

"Someone once asked me if I wanted a frozen banana. No, but I do want a regular banana later, so yes."

"I like escalators because an escalator can never break: it can only become stairs. You'll never see an Escalator Temporarily Out Of Order sign, just Escalator Temporarily Stairs. Sorry for the convenience. We apologize that you can still..get up there."

"I hate turtlenecks. Wearing a turtleneck is like being strangled by a really weak guy. All day. Like, if you wear a turtleneck and a backpack, it's like a weak midget trying to bring you down."

"I ordered a chicken sandwich but I think the waitress mis-understood me because she said, "How would you like your eggs?" So I tried to answer her anyhow. I said "Incubated, and then raised, and then beheaded, and then plucked and then cut up then put onto a grill then put onto a bun, damn it's gonna take awhile. I don't have time, scrambled!""

"I used to do drugs. I still do, but I used to, too."

"I'm against picketing, but I don't know how to show it."

"I saw this wino, he was eating grapes. I was like, "Dude, you have to wait.""

"One time, this guy handed me a picture of him, he said,"Here's a picture of me when I was younger." Every picture of you is when you were younger. "Here's a picture of me when I'm older." "You son-of-a-bitch! How'd you pull that off? Lemme see that camera!""

Hope you all enjoyed them
 
GregD said:
Some of my favorite Hedberg quotes:

"Someone once asked me if I wanted a frozen banana. No, but I do want a regular banana later, so yes."

"I like escalators because an escalator can never break: it can only become stairs. You'll never see an Escalator Temporarily Out Of Order sign, just Escalator Temporarily Stairs. Sorry for the convenience. We apologize that you can still..get up there."

"I hate turtlenecks. Wearing a turtleneck is like being strangled by a really weak guy. All day. Like, if you wear a turtleneck and a backpack, it's like a weak midget trying to bring you down."

"I ordered a chicken sandwich but I think the waitress mis-understood me because she said, "How would you like your eggs?" So I tried to answer her anyhow. I said "Incubated, and then raised, and then beheaded, and then plucked and then cut up then put onto a grill then put onto a bun, damn it's gonna take awhile. I don't have time, scrambled!""

"I used to do drugs. I still do, but I used to, too."

"I'm against picketing, but I don't know how to show it."

"I saw this wino, he was eating grapes. I was like, "Dude, you have to wait.""

"One time, this guy handed me a picture of him, he said,"Here's a picture of me when I was younger." Every picture of you is when you were younger. "Here's a picture of me when I'm older." "You son-of-a-bitch! How'd you pull that off? Lemme see that camera!""

Hope you all enjoyed them
Click to expand...

Heeey Chuck's bringing it down, I like it ..

Maybe thats another link in the Crohns chain, we all like Hedberg :eek2:
 
We all like Hedberg...once you find the cause, you can find the cure...headline "Hedberg found to be cause of Crohn's...further research underway"....first acids and alkalines, now comedians...what the hell makes me so inflammed?

If you like Hedberg, you'd probably like Demetri Martin too, similar styles....

May Mitch rest in peace, so sad to have lost him...
 
BWS1982 said:
We all like Hedberg...once you find the cause, you can find the cure...headline "Hedberg found to be cause of Crohn's...further research underway"....first acids and alkalines, now comedians...what the hell makes me so inflammed?

If you like Hedberg, you'd probably like Demetri Martin too, similar styles....

May Mitch rest in peace, so sad to have lost him...
Click to expand...

Heh .. We'll all be forced to drink battery water and eat oranges while watching Lynn Shawcroft perform (Lynn is Mitch's wife)
 

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