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Crohn's Disease
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Posted 8/22/2007 5:29 PM (GMT -7)
Well, I went to Austin today for my colonoscopy so hoping they would find the problem and be able to start treating me with new meds so I could start feeling better. What my husband heard was that the doctor had never seen a Crohn's pt colon look so good. No inflammation no nothing. So what is my problem! I know I'm not crazy about this. I feel like I'm being cut in half at times, I eat I s**t and start having pain within 30 minutes. This morning on the way down there I had to stop and throw up bile four times. I have not let up on having diarrhea yet and my test was at 7:30 this morning. I have taken immodium X 4 with no relief.

I just want to cry, I'm not faking all this I know I'm not. Now they are looking at doing a small bowel follow through, the scope they used today was not long enough. Does this mean I'll have to do the prep again? My husband met the doc for the first time and said we were definately changing, he would not even stay long enough for my husband to try to find out what might be going on. So as of today I'm no better off than I have been for the last 2 months and not even much hope of getting better any time soon. I'm depressed!!! I just want to have my normal life back and if it's not Crohn's then what is it and can't I get it fixed? Don't get me wrong I'd be very happy to find out it's not Crohn's. I asked in my dopey state if it is not Crohns can I quit taking all these meds and was told no.

Thanks for letting me cry on your shoulders.

Posted 8/22/2007 5:33 PM (GMT -7)
Hi, I would get a second opionion.
Posted 8/22/2007 5:37 PM (GMT -7)
Some places have you drink a Fleets Phospho and others just have you fast after midnight the day before. You basically just drink barium and have x-rays taken.

Posted 8/22/2007 5:38 PM (GMT -7)
yes, a second opinion is a good idea, sometimes if they didn't go far enough they just didn't get to the problem, happened to me before I changed docs, my old one didn't check me all the way and thought I was fine, my new one went far as he could and found where my problems were and got my meds changed and me treated. My intestines all look clean and fine til you hit my Ileum and thats where my problems start, so initially I look fine too, but am not.
Posted 8/22/2007 5:40 PM (GMT -7)
How were you diagnosed with Crohn's?  What did they base the diagnosis on?  Did you have a prior colonoscopy that showed problems?
Posted 8/22/2007 6:12 PM (GMT -7)
Hi Nana CC Sorry your so discourged about your scope but getting the rest of your intestines tested might give you the answer it was just one test and they cain't have all the answers from that. Glad your husband went with you sounds like he is a comfort to you. I am glad though that your scope showed no problems as far as they tested.Did you ever have a IBS DX.Hope your feeling better soon the prep. can be tiring for us.lol gail
Posted 8/22/2007 6:23 PM (GMT -7)
Yes, I was hopitalized for having 20+ BM's a day. At first they thought it was C-diff because I had been on multiple drugs from a melanomana they removed a couple of months before and then had pneumonia a month later was hospitalized and on multiple antibiotics. The colonoscopy at that time was suggestive of UC and they did 5 test to rule out c-diff. After the last hospital stay they did the promethus test and was positive for Crohn's instead of UC. After moving and working with my old GI doc we tried to taper me off the pred and all the symptoms of D, pain, cramping, and mucous came back so I had to go back up on the pred. I have continued to have intermittent problems since and trying to get with a good doc down here. I work and just want to be able to have some type of life. I'm so fatigued all the time all I do is work then come home veg out in the chair for an hour or 2 then go to bed so I can do the same thing the next day. That is just not me. I have always been a kind of high strung person. My husband and I jet ski, camp, fish keep my oldest granddaughter every week end. Now I don't feel well enough to do any of those things but I do keep my grandaugher I'm just not able to all the things I used to do with her, movies, shopping trips ect.) I just can't stand all this. I want my life back and I want it back now!!!!!!
Posted 8/22/2007 6:42 PM (GMT -7)
Nana your story is somewhat similar to mine.  I too was hospitalized (last year) with 20+ BM's a day.  And they suspected c-diff, or possibly a parasite.  I have chronic sinusitis and had taken about 10-15 courses of antibiotics in the preceding 2 years, so that's why they suspected c-diff.  But I kept testing negative for it.  They put me on flagyl anyway and I had a severe allergic reaction to it.  So they put me on prednisone for the reaction.  And, miraculously, my BM's got better.  That was the first clue I had Crohn's, but the docs still didn't think that's what it was.  It took several more months, and another stay in the hospital, to finally figure it out.  I was diagnosed with Crohn's after doing small bowel CT scans and the capsule endoscopy, followed by the Prometheus tests.

Your colon may look good now on the colonoscopy but you still may have some problem areas in the small intestine.  That could be leading to your symptoms.  A small bowel follow through or CT enterography would be a good test to check out your small bowel.

Posted 8/22/2007 6:57 PM (GMT -7)
Have you been checked for Celiac disease or Clostridium difficile I had c-diff twice and it sounds more like what you have they can check for it in a stool sample do it soon before you become malnurished and dehydrated.
Posted 8/22/2007 7:07 PM (GMT -7)

After many tests and a surgery for gallbladder removal with no proper diagnosis, they finally sent me to have a small bowel follow through. There it showed Crohns in my illieum.

If you get no answers there you may want to look into some information for possible Celiac Disease.

Good wishes.....~Sukay~

Posted 8/22/2007 7:16 PM (GMT -7)
We all need a shoulder to cry on. That's why we are here. Sorry you are still in limbo but I would seek out a second opinion. I have CD in my small intestine. I too had a scope today and the GI told me it is in perfect shape. I know it is CD becasue of a resection and pathology to confirm the dx made 36 yrs ago when I was 12. The scope is only good for the colon. Have you had a small bowel series done or CT scan of the bowells with the dye contrast? These tests are being used to monitor the activity of my CD in the areas they can't scope.
Posted 8/22/2007 7:24 PM (GMT -7)
as other said I would get a 2nd opinion, as for the SFT the only prep is nothing to eat or drink after midnight before the test. You may want to inquire about the pill cam endoscopy or a CT enterography. Hope yu feel better soon, Stef
Posted 8/23/2007 12:15 AM (GMT -7)
NanaCC, I know how discouraging it is to be feeling so crappy and be told everything is normal. It took a long time, 13 years before they finally diagnosed me with crohns disease. The colonoscopy highly suggested it, but it wasnt until they went through from the other end did they finally find proof. They did an endoscopy that went right through to my ileocecal valve, pumped some kind of goop down that tube all the way to my rectum.....I didn;t make it to the bathroom in time and pooped right there on the table. Serves them right!Anyway, the resulting exrays showed the diseased section bright and clear.
Dont lose hope....change doctor....keep pushing. What you are going thru is no way normal....something is going on and they need to find out what it is...you are paying them.....find a doctor who listens , and who wont stop until they get to the root of this problem.
We are here for you.....come vent all you want. Someone might even be able to suggest a GI in your area. People in this forum are so understanding and helpful. Good luck.....love and prayers
Mary
Posted 8/23/2007 8:33 AM (GMT -7)
One more thing if you do get tested positve for C-Diff then you do NOT want to take anything to plug yourself up like Immodiume is a no no with C-Diff you want it to come out the spore of C-Diff creates a toxic gas and plugging yourself up and cause the gas to build up and can lead to Mega Toxic Colon that can cause a bowel rupture so I suggest you get tested soon .
Sending you gentle hugs and blessings,sm
Posted 8/23/2007 11:21 AM (GMT -7)
My terminal ileum was viewed during my colonoscopy. I know the scope doesn't go ALL the way up, but mine went up through the terminal ileum. Anyway, you could have IBS on TOP of crohn's and your crohn's may be not as active right now, so maybe that's why the colonoscopy "looked good."

It's all very frustrating. My dr thinks I have IBS on top of my crohn's also, so I am kind of like, so now what?

Hugs
Posted 8/23/2007 12:30 PM (GMT -7)

Bless your heart! I teared up reading that!

That was similar to my last scope at the end of June. How could I possibly be dx'd with Crohn's from four different methods, but not have any sign of it now?!?!!?! But, remission is a tricky thing, especially if it's coupled with something else.

The reason I love my new doc is because he realized that I WASN'T faking it, just like you aren't, and that there was still something very wrong with me. That's when he decided to start treating me for severe IBS-D in addition to Crohn's. I had already done the whole Lomotil, NuLeve, dicyclomine mess...nothing worked. So on to Lotronex...not an easy drug to get, but for me, WORTH IT. I was in denial about having IBS in conjunction with my CD for a long time, and didn't think IBS could cause such severe symtoms. Maybe all that's true, maybe not. What I do know is that I'm starting to feel more human again than I have in over a year and a half since I got sick.

Find a GI who will listen, if Pfanner can't get you in, you may want to see one of the guys at Austin Gastro. I know another of us on here see's another doctor there as well. You might not have luck like I did with the first doc (it's taken me three GI's to find this one!), but keep finding someone who BELIEVES in you and BELIEVES you. We all here know that you are not faking, these symtoms are real. I can't tell you how much a relief it was to know that I had Crohn's! I know that's crazy, but FINALLY there was proof that I was sick, after so many tests showed nothing. And then when I didn't get better on CD meds, but my scopes came back saying I was fine?!?! Oh, I cried and cried. ...and my GI later joked with me about it 'The only person to ever sob when I told her I didn't see any Crohn's!'...but then he said 'I understand. You want there to be something that we can physically see and be able to say, with conviction, THAT'S it! That's what's wrong, and here's the surefire way to fix it! And that's why you cried when we didn't see that.'

He got it. He got me. He promised to have me better by my wedding (in October) and I'm on the way there. Know that you are not alone, and you will get help.

 

Let me know if there's anything I can help you with!

best,
m.

Posted 8/23/2007 12:37 PM (GMT -7)
NanaCC,

the x-ray with barium contrast is very easy to handle. I drank a red juice just before the x-ray started. The juice tasted like strawberry and had a slight bitter taste. No problem at all to drink that. :-)

It's ok that they take this barium x-ray, cause then they may find that your small intestines eventually have a narrowing which often make ppl. vomite a lot and being in a heavy pain after big meals. Pieces of food (often vegetables, fruits and meat) stucks in this narrowing and leads to pain, cramps and sometimes vomiting.

The best of luck to you
From Ingrid
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