Hi. Newbie Post.....

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miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 12/28/2007 3:35 PM (GMT -7)   
Well, how is everyone doing in here? My name is Mike. I was diagnosed with Crohn's November '06. I'm feeling better having read some of the things people have gone through. This is a lot to deal with. I have type I diabetes (insulin pump) and Celiac Disease as well, so I definitely didn't need another thing to deal with.

I've been kind of frustrated with all the doctor appointments, and feel like they just keep throwing medications my way in the 'ol, "here, try this..." sort of way. I'm allergic to darn near everything it seems, and the drugs don't always seem to agree with me either. I have not been taking anything really for the last month or so. I'm just fed up with it all. Things like Prednizone really throw my bloodsugar levels out of whack and make it impossible to control them. So that's out. Tried some sort of cortizone suppository and it gave me terrible night sweats (like sweat through the mattress bad.) The docs don't seem to believe I could have such an adverse reaction to it.
I've tried Pentasa, which healed up the fissures I had around my anus, but it upset my stomach. Now they want me to try some sort of colacort? enemas? or rowassa enemas? Ugggh....

I'm not as sick as I once was. I no longer have bowel movements multiple times per day. Usually just once in the morning. Problem is, I have this "discharge" afterwards throughout the day. Through my internet investigating, I wonder if I don't have a fistula? I no longer have a lot of blood in my stool. Just this clearish-yellow watery crud that keeps oozing out of me all day. Infection? My energy levels have been better of late. No fevers. Can't tolerate cold AT ALL any more. Appetite is good. Weight staying on. Having a lot of joint pain like arthritis. Especially in my hands/elbows/shoulders, which I never had before.

Anyone have any ideas what this last "hurdle" could be? Sorry, I don't know what the "getting to know you" protocol is around here. I usually post on golf forums of all things, so this is new to me.

Thanks!

-Mike

Post Edited (miguelblanco) : 12/28/2007 3:52:56 PM (GMT-7)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 12/28/2007 3:52 PM (GMT -7)   

Hey Mike,

Hello and welcome to Healing Well and the CD Forum. I am glad you found us.  I am Kitt.

I have to tell you I admire you, with all that going on you sound like a really upbeat person. Kudos to you.

I did not see that you have had any surgery.  IMHO if you had an infection I would expect you to have a temp.  Do you have a lot of flatus (gas) with the discharge or not?

Hang  on a bit and someone wiser than I will be along.  You should talk with your physician re this new problem. Everyone here is very knowledgable but each person comes from their own knowledge base.  So remember we are here and we are glad you joined us. We are not professionals. :)  We are your support system, use us well 24/7.

Respectfully

Kitt


 
Co-Moderator Anxiety ~ Panic Disorders
Co-Moderator Crohn's Disease Forum
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
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It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/28/2007 3:57 PM (GMT -7)   
Hello Mike! Glad you found this Forum! It has really helped me understand this disease and folks are friendly too.

I had a peri-rectal abcess and still have the fisula. The drainage you describe certainly could be an abcess draining through a fistula. I know I felt better once my abcess popped and the infection could drain. My Drs put me on Flagyl and Levaquin (for cellulitus) and these antibiotics really helpled calm everything down. I now have a seton in the fistula to keep it from clogging and becoming infected again (DON"T want another abcess and one fistula is just fine, thank you). I felt much better after the seton was placed. I am now on remicade only and doing very well.

I suggest you talk to your Dr. about the drainage. It could be something else and it is best to get a knowledgeable Dr to diagnose it.

Again welcome!

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 12/28/2007 4:03 PM (GMT -7)   
Kitt,

Thanks. My gawd, if I got down about all of this, I'd be done for! tongue
I am waiting for my physician to call me back (he's out 'til Wednesday unfortunately.)
I don't really have gas too much. Some. Not a constant problem. Seems to just keep draining out of me all day. Worst in the morning after I've had a BM. Seems to slow a bit as the day progresses. I used to have to go a LOT and things have really calmed down, and less bleeding. But this draining has gotten worse as everything else has gotten better. It's a nasty nuisance for me. I keep having to duck into the restroom at work multiple times a day to "clean up" for fear of leaking through my clothes. The Diabetes makes things much more complicated to treat this disease it seems.

I dunno. Confused. Frustrated. Just need this to stop and life will go back to a more manageable 2 diseases instead of 3. scool

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 12/28/2007 4:09 PM (GMT -7)   
Thanks. Good to be here.

Yep, the call is in to the doctor. I am thinking another "scope" is in order to see what is going on exactly. I am wanting to try some antibiotics. I had a mouth sore in my gums (just learning about all these things that can happen) and my dentist put me on a steroid pack and amoxicilin in case I had an infection in my mouth just to be safe. THAT stopped the drainage for about a week while I was on it. The steroids made my bloosugars unmanageable, but I saw an improvement. I have 3 times mentioned this to my doc. I just don't think he is listening or something. It may not have been the "right" antibiotic to use, but it did seem to help. I had suggested to him I try Cipro, but the enema prescription pad keeps coming out. Sticking things up there makes it more sore! Uggh... I have since tried Pentasa and Prednizone but that didn't give me the same results.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/28/2007 4:34 PM (GMT -7)   
I am sorry to hear you are having so much trouble. Before my abcess popped, I was feeling poorly but had no fever or pain. I had a sinus infection and went on a strong antibiotic. I felt much better but after I stopped the antibiotic, I started to feel poorly again. The underlying problem of the abcess and fistula had to be addressed before I felt better without antibiotics.

Some abcesses and fistulas are hard to spot. A CT scan may be able to spot pockets of infection and the fistula. Does your Dr. specialize in GI issues especially CD or IBD?? If not, I strongly suggest you switch DRs. Many, many posts talk about mis-diagnoses -- I suffered from a bad Dr and mis-Dx too until I found a great CD/IBD specialist.

Let us know how it all turns out.

BitBit
Regular Member


Date Joined Oct 2007
Total Posts : 44
   Posted 12/28/2007 5:19 PM (GMT -7)   
Hi,
welcome to the club... a club none of us would voluntarily join.

I have the same problem you are talking about. I went to the doctor today and he told me it is an abscess with a fistula. he gave me yet another antibioitc in addition to the one I already take. He told me to soak in hot baths with epsom salt to help the drainage.

I will be starting Remicade soon. I have read about it a lot on this site and it seems to help a lot of people.

I, too, am allergic to many antibiotics so it makes it hard to find a good one . I understand your frustration.

Keep belieiving that things will improve, and when they do enjoy those days to the fullest.
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