Update on me (the case of the "maybes")

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MathGeek
Regular Member


Date Joined Feb 2008
Total Posts : 23
   Posted 4/16/2008 8:53 AM (GMT -6)   
OK, so for a recap: (and there may be TMI , so I apologize ahead of time)

My history:

I was diagnosed with erythema nodosum at age 16 -- unknown cause. Been dealing with it for 15 years off and on.

At age 20 I went through a "phase" (as the doctor put it) of constipation and what they thought at the time was IBS, but after about a 7 month run and a round of antibiotics for h.pylori, i was better, so they retracted the IBS diagnosis. I also had a colonoscopy that I believe was "normal" (i need to hunt down my medical records)

OK. so now age 30, start noticing small amounts of mucous and blood in stool, blow it off as hemorrhoids (had those from age 17 or so). In January I got a pretty bad sinus infection and was put on antibiotics which I only took for 2 days (Yes, bad me.) After that the "D" started and blood increased a lot, was having a lot of urgency and most times it was nothing but mucous. By the end of January I was going to the bathroom at least 10 times a day and 3-4 at night. I started to get freaked out so made an appointment with my general doc.

He ran a "stool analysis" which came back normal (NO, he didn't check for c-diff). And while that was going, he sent me for a colonoscopy. It was a general surgeon who did the scope, said I had "active" colitis -- unknown cause -- no evidence of chronicity. Told me to pop some imodium and head home. Nice guy.

Well I did what I was told and the imdodium didn't do anything. So I called general doc again and asked for a referral to the GI. So into the GI I go. He looked at colon pics and made diagnosis from that and my history. AGAIN NO REDO OF LABS, NO RESCOPE. So this is early March. I start Asacol 12xday, rowasa 2xday. The GI wants to see the erythema nodusm go away on my legs, so I call back in 2 weeks to let him know nothing has changed. He pulls me from asacol and rowasa and puts me on 40 mg of prednisone.

So about March 20th I start 40 mg of pred. Symptoms get a little better, and then after a week take a turn for the worse. Back up to 8 times a day, more pain and mucous, but no blood. Joint pain which has started to plauge me has eased up. So there's that bonus. Had an abdominal CT scan though, and it showed thickening of the left side of my colon (which they expected to see). On April 2, 3 and 4 they bump my pred to 60 mg. Again, no change. Just 13 pounds of weight put on, a nice round face and moods to match my daughter's.

So GI doc calls for another round of lab tests. Specifically to look for c-diff. Hmmm, i say, what's this "c-diff" you speak of? Well, guess what. I'm positive for c-diff. And prednisone makes c-diff WORSE. So that's awesome. So now I'm on day 6 of Flagyl and finally slowly starting to feel better. I'm down to 10 mg of pred, and the joint pain is returning. THe shooting pains in my gut have never gone away and now on top of that I have odd "tingling" sensations there also.

The dilema you may ask? Do i really have UC? OR has it been c-diff all along?

The GI can't say for sure since I didn't have a neg c-diff test before. She's pretty sure I have underlying UC complicated by c-diff. Her reasons? The erythema nodosum I have and my joint pain.

So I had a choice.

#1) Assume I have UC and resume Asacol.

#2) Finish off Flagyl and pred and wait and see.



I chose door #2. I want to know for sure what this is. Any opinions or suggestions? I would greatly appreciate them!!
31 yr old female
Dx'd in 2/2008 UC (not sure how much, or where, LOONG story there, i'm sure i'm getting another scope soon)
Asacol 12xday, Rowasa 2xday (off these for now waiting for pred to work)
Prednisone 40 mg/day


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/16/2008 10:34 AM (GMT -6)   
Wow, I could've written your story...lol. My whole nightmare w/UC started with c.diff. Fortunately mine was diagnosed right away as c.diff but it took FOREVER for it to go away. Now every time I have a "flare" I know it's c.diff but my GI swears it's UC. We do stool tests and SURPRISE, I have c.diff again. It's so frustrating!!!! I used to think I was misdiagnosed as having UC and thought my underlying issue was always c.diff but since I've had so many scopes and things, I'm pretty much confident that I suffer from both. Somehow c.diff started this whole nightmare for me but I definitely battle both.

I would see where the Flagyl takes you and go from there. It never worked for me, I always have to take Vancomycin. I would recommend some probiotics and sacchromyces boulardii. Jarrow sells a good one that doesn't have to be refrigerated. BTW, Asacol and Rowasa (and all other "UC" meds) make me worse! I would try to get rid of the c.diff and not worry about the UC meds right now if you're not even sure you have UC.

**Please edit your signature to 10 lines or less.**

Post Edited By Moderator (tjf) : 4/16/2008 12:43:09 PM (GMT-6)


MathGeek
Regular Member


Date Joined Feb 2008
Total Posts : 23
   Posted 4/16/2008 12:23 PM (GMT -6)   
It's good to hear that I'm not the only one! :-)

I've been soooo frustrated. I just want to know the answers... I suppose like anyone else too. I just really need to know if I have underlying colitis... So I am skipping the UC drugs for now to see if the UC declares itself.
31 yr old female
Dx'd in 2/2008 UC (not sure how much, or where, LOONG story there, i'm sure i'm getting another scope soon)
Asacol 12xday, Rowasa 2xday (off these for now waiting for pred to work)
Prednisone 40 mg/day


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 4/16/2008 4:41 PM (GMT -6)   
isn't erythema nodosum associated with IBD? I don't think that taking the asacol would hurt - it is a pretty safe drug just in case.
Jessica 26/F On Entorcout again...
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)


MathGeek
Regular Member


Date Joined Feb 2008
Total Posts : 23
   Posted 4/17/2008 7:40 AM (GMT -6)   
Yes, I think that's part of the reason she's so sure it's UC. But I really just want to have a definite diagnosis and she's not willing to say 100% sure until the c-diff is gone.

And now, down to 10 mg of pred, the blood is back.
31 yr old female
Dx'd in 2/2008 UC (not sure how much, or where, LOONG story there, i'm sure i'm getting another scope soon)
Asacol 12xday, Rowasa 2xday (off these for now waiting for pred to work)
Prednisone 40 mg/day


quincy
Elite Member


Date Joined May 2003
Total Posts : 30842
   Posted 4/17/2008 11:14 AM (GMT -6)   
MathGeek....I think you should consider to get back on the Rowasa at least while tapering. OR....ask the doc for steroid enemas/foam enemas.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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