Still symptomatic, and still no diagnosis. SBFT tomorrow.

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mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 5/13/2010 8:29 AM (GMT -7)   
So I am still having daily bouts of diarrhea, cramping, pain, and as of two weeks ago I have really bad pain in my hips/low back and feet/ankles.  I limp every morning.  It's sooo miserable. Thankfully my GI is not giving up.  I have had a normal colonoscopy (except for the pre-cancer polyps-age 36), normal blood work, and a  normal CT scan (that wasn't done right and didn't give a good view of the small bowel-he said it was a no good test..)  My diarrhea episodes got to over 10-12 a day a few weeks back, and was miserable, so he put me on 10 days of Flagyl as a "trial".  He said that sometimes there is bacteria/parasites lurking that don't show up in the stool cultures, and he wanted to see if this would clear up the diarrhea.  Well, it worked...three days into the med, I had perfectly normal bowel habits again....the most normal poop I have had in over a year.  One a day.  I had more energy, less pain, less cramping...no night time visits to the bathroom etc....I was so excited and sooooo relieved.  I cannot believe how much I got done that week....amazing.  I thought for sure he had discovered this simple miracle cure for my ailment and that this whole ordeal was history. 
 
Well, it wasn't that easy.  Because 3 days after the last dose, everything came back...diarrhea, pain, cramping, urgency....and now all this joint pain too...which seems to have totally come on at the onset of symptoms after stopping the Flagyl.  So I had a visit with my GI about a week later, and he spent about an hour with me.  (he is a really good doc and I totally trust him, and appreciate how thourogh he has been and is trying to be about all this-he isn't one of those who is quick to do the "IBS" thing.  In fact, I keep asking about IBS, and he keeps saying to forget about that for now, that he isn't comfortable yet with assuming it's that.)  Anyway, he said he still thinks there is a possibility it's Crohn's-but maybe limited to the small bowel.  He hasn't had a good look at the small bowel yet, because of the botched CT scan, so he ordered a SBFT, which I have tomorrow, and then if that is normal we will finish off this whole testing phase with the pill cam.  The reason he still thinks Crohn's is a possibility is because of the perianal fistula I had trouble with, and finally had surgery on last fall, and the reccurant ulcers in my mouth in connection with the diarrhea and pain...he said that is too much clinical evidence that he really wants to make sure he totally rules it out.  He said the Flagyl working while I was on it and then my symptoms coming back after finishing is another possible sign that it's IBD....but he also did mention that if all came out normal then he would lean towards diagnosing and treating me for Functional Bowel Disorder/of the Small bowel...from bacterial overgrowth....which he said is similar to a diagnosis like IBS....
 
Anyway, that's where things are at.  I hope there can be some definitive answers soon.  I would love to have something that can be treated, but at the same time something that is not a severe disease.  I am comforted that the Flagyl helped me feel better....this gives me hope regardless of the diagnosis.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/13/2010 9:23 AM (GMT -7)   
Awww good luck with your tests. It sure does sound similar to Crohns. Hopefully the pill cam will provide you some answers. Sometimes the Crohns likes to live in areas the scopes can't reach, so I am glad to hear you will be doing the pill cam. If it does turn out to be from bacterial overgrowth (I personally don't think its that simple, imo), but another good antibiotic with less side effects that might help and you might want to ask about is Xifaxan. Its usually used for travellers diarrhea, but has been getting more use with Crohns lately. It helped me alot recently when I had bacterial overgrowth.

Good Luck
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 5/13/2010 9:47 AM (GMT -7)   

He gave me a bunch of samples of that med you mentioned..the Xifaxan.  He said it wouldn't give me the side affects, which is good.  I was really dizzy on Flagyl and also had the metal taste.  I didn't care much though because of how good I felt otherwise..lol..  I'd be dizzy any day to avoid that other stuff.  I haven't started the Xifaxan though..am waiting until after the tests so it doesn't hide anything going on.  (if there is anything)

IF it were Crohn's, what would cause the bacterial overgrowth...I mean what specific complication of Crohn's leads to that....? 


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 5/13/2010 10:48 AM (GMT -7)   
I don't understand why doctors won't just prescribe one of the 5-ASAs for suspect Crohn's. The SBFT is not likely to show much, and a pill-cam has risks (plus it is $$$). Pentasa is pricey, but it is safe and might be very effective.

I'm sorry you're having so much difficulty. I remember how badly my feet hurt after giving birth (both times!). I never thought much of it, but I've had a lot of joint pain in the past few years (mostly hands and wrists and elbows) that is definitely linked to my IBD. And my estrogen levels.

It's really good information that the flagyl worked so well. What about taking cipro?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/13/2010 10:59 AM (GMT -7)   
I get problems with bacterial overgrowth because of my resections. But I guess its pretty common for us, as we tend to take antibiotics more, and it messes up the bacterial fields in our intestinal tract. Thats also why you should always be taking a good probiotic everyday. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/13/2010 11:18 AM (GMT -7)   
I hope he finds something so that you get some relief. This trying to get a digestive problem diagnosed is for the birds!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/13/2010 1:41 PM (GMT -7)   
Hey MayOk doesn't it seem like its always hurry up and wait with this darn disease? Very frustrating, I agree!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/13/2010 2:05 PM (GMT -7)   
Yes, and I know some who go through all the trouble only to be told their suffering is IBS. I'm not quite there yet, but it's always a possibility depending on what they do or do not find. Someone told me that there is really no test for Crohn's: There has to be some sort of evidence of disease activity for them to make a positive dx. So I was thinking maybe that if you catch it at the very beginning, there isn't any evidence there yet possibly. Could be why so many people initially passed off as IBSers eventually come back with evidence of disease. Who knows?

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 5/13/2010 6:42 PM (GMT -7)   
don't know if this will help you or not but this is what led to my diagnosis. I had a colonoscopy from which he was pretty sure it was crohns but he could not see everything as for some insane reason my stomach was in the way so I also had the barium swallow. But, he also requested blood work while I was in the hospital for the colonoscopy called an immunoassay analyte and immunoassay flourescent study. When I saw him for my followup apparently that blood work was what clinched it for him to say it was crohns. I am keeping my fingers crossed for you that it is not crohns. But know that if it is and you have a good doctor it will be ok. I was petrified when they told me but having more knowledge about this disease has helped the fears. There are people on this board who have been fighting crohns for years and I have so much admiration for them. They had to start the fight when alot of these drugs were not available to them. But I have learned from them it is possible to have a long fullfilled life.  And you are not alone with the flagyl temporarily making you feel better. I was prescribed two rounds. By the second round I was sick as a dog and told the dr I would never take it again..but then once I finished my dose the pain in my abdomen completly went away..for five blissful days...then it came back..


Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)

Post Edited (tewcute) : 5/13/2010 7:45:08 PM (GMT-6)


mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 5/14/2010 2:50 PM (GMT -7)   

Wow...that was super fast.  THe actual test...I was expecting at least an hour or more.  They even commented on how fast it went..does this mean anything?  From the time the barium was in my stomach to the end of my small bowel was less than 15 minutes.  Radiologist didn't see evidence of Crohn's (kind of thought this would be the case though) and asked me questions related to celiac....I also had a genetic blood test today for CLA something or other to test for Celiac..

Ugh...Im glad Im so "healthy" but wish I felt that way too.  Instead I feel opposite...like Im dying of something horrible.  (ok, maybe a tad dramatic.)

Now to wait for the next step...or the official results or whatever!


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 5/14/2010 11:41 PM (GMT -7)   
I know you want answers but I pray that it is not Crohn's disease. Hopefully they will be able to find a diagnosis with a cure for you.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 5/15/2010 4:54 PM (GMT -7)   
I hope you get some answers soon. Not knowing is a pain. It will be interesting to see how the test for celiac comes out. They can get joint pain too. Good luck!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!

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