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Crohn's Disease Forum » Your Story » Lessons on taking care of yourself


04-03-2013, 06:48 AM   #1
NewRoad
 
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Join Date: Sep 2012
Location: Texarkana, Texas
Lessons on taking care of yourself

I've been off this forum for several months, I THOUGHT I was feeling better, I THOUGHT I had this Crohns in the bag, i.e. watching what I eat, getting proper rest, etc. I had not started any medications, since the doc I was going to didn't prescribe anything at the time... (The doc had me chasing a bladder condition before I could start anything).

My horrible pain went away, the diarrheah went away, I went back to work and put the whole thing into the dark recesses of my memory and went back to self-treatments. WHAT I DID NOT KNOW:

The supposed bladder condition (pressure, urgency) was apparently a recto-vaginal fistula festering. Now I have vaginal bleeding (no parts in there to bleed anymore, hysterectomy 10 years ago) so that development was a wake up call. Then stool matter coming out the wrong hole, UH OH! Now a secondary infection, what a mess I have!

I'm out of work for the week until I see the colo-rectal surgeon on Friday. So my advice: If you think you feel better, you might, but do NOT just walk away and pretend you're all better! Follow up with your appointments, take your meds, continue watching your diet. Why?

I had NO idea my intestines were SO inflamed, since I had no pain anymore. I had NO idea a fistula was in there happily tunneling it's way into places off limits until I found myself in an emergency situation.

Another thing: My local doctors did NOT take proper care of me, I am now driving 180 miles one way to a University Hospital that specializes in Crohns among many other things. If you feel you are not getting answers, find a specialist. Crohns is nothing to play around with, as I'm finding out!

That's my lecture, (to myself more than anything), and I'm sticking to it!
04-03-2013, 07:36 AM   #2
Astra
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Thanks NewRoad, wise words indeed, and something that a lot of us advocate too, not to become complacent and flippant about this disease.
Take care xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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04-03-2013, 12:37 PM   #3
Angrybird
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So sorry to hear this nastiness has been bubbling away inside have you now been started on a treatment regime for the fistula and inflammation? Please keep us updated on how you are getting on.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
04-03-2013, 04:14 PM   #4
NewRoad
 
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Join Date: Sep 2012
Location: Texarkana, Texas
I found a new GI, she's trying to get me in tomorrow. Friday morning I see the Colo-rectal surgeon. my bottom (front part) hurts SO bad, it's red and inflamed. I sure hope they can fix me up and fast! Thanks for your replies, I'll keep you posted.
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