Flare? Docs are confused need help plz!!!

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TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/11/2010 12:11 AM (GMT -7)   
hi, everybody i started  to get a severe pain in the lower right abdomen, (your left if your looking at me) and i also have a 40 degree fever at night accompanied by insane nightsweats.  The weirdiest part is i have extreme pain when I urinate, and I cant hold very much urine in my bladder so I am up multiple times a night.  I have been checked for UTI and STD's all came back clean and the abdomen pain is not appenix they did an ultrasound.  I saw two doctors and both said they could do nothing for me go home.  Confused about what to do next has anybody had anything similar happen to them, any advice is greatly appreciated im in tons of pain.

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 8/11/2010 3:56 AM (GMT -7)   
That is/has totally happened to me with my most recent flare. I had the worst pain while going to the bathroom and I had to pee like a gazillion times every day. My doc put me on Flagyl and it helped clear it up a bit because I suspected I had a UTI. It cleared up for a week, but now it's back a few hours after I eat a large meal. So I'm assuming it's Crohn's related since my pain while peeing feels like it's also on the same side as my Crohn's pain. My problems didn't start until a few weeks after my Crohn's had been acting up though...

Do you know if your Crohn's is active or not? Any other Crohnie symptoms?
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

75mg Imuran, 750mg Balsalazide 3x day, Tapering Pred (almost done).

Flaring...

Attempting SCD...fingers crossed!

TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/11/2010 2:11 PM (GMT -7)   
Yes my crohns is active, I have problems with fatigue and urgency and sometimes cramping, before this situtation i wasnt in remission but kinda had it under control with Humira and diet. Everything was good until bang all this stuff started happening and doctors are confused and keep telling me they cant do anything, just live with it.

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/11/2010 2:22 PM (GMT -7)   
TookieWilliams.....pain is pain! I think you need to stick your ground and go back to the Dr.!! Just a few months ago, I had terrible pain and went to the E.R. long story short I was there 10 hours because they couldn't figure it out. I told them I wasn't going home in my condition. So, they admitted me and after a series of tests they found that I had a hernia which was right in the incision area of my re-section. They didn't find it with a regular CT...had to have one where I drink barium. Guess I needed to light up more!lol Thank goodness I had a Dr. who gave a crap and gave me the test over with the barium. Anyway, my intestines where krimping in my stomach lining (obstructing) it in 2 places....OUCH!
If I would have gone home...it wouldn't have been pretty.
I had my appendix out ...after the Dr. got in there he said..It wasn't bad but we took it anyway. He then said...You have Crohns. That was more or less the first time they saw it.
Best wishes to you...let us know
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!


Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

tuper
Regular Member


Date Joined May 2010
Total Posts : 28
   Posted 8/11/2010 2:40 PM (GMT -7)   
I'm sorry I won't be much help, but please know you are not alone! My husband has been having the pain and urgency as well. He also has extreme thirst, but only when the low dose steroids he's on are out of his system. (He takes 10mg every other day....it's odd.) So he basically gets these symptoms every other day. We also had a rheumy who told us that there isn't anything we can do. So we are getting a second opinion. If you get it figured out, let us know, and we will do the same!

TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/11/2010 11:45 PM (GMT -7)   
Thanks for the support everyone,  I did the barium x-ray (I live in a small town in northern British Columbia) and the doctor said it looks like my intestines are inflamed but he cant do anything about it. He said 'this is crohns its just the way it goes" So i wasnt happy with that result so I faxed my results and list of symptoms to a gastro in a larger town.  His secretary called me this morning and told me to get to the hospital in Kamloops B.C. NOW!!! and the gastro will meet me there, said he wants to do a bunch of tests.  I will leave tommorrow morning its a 5 hour drive.  Thank god this doc is taking me seriously.  I will stay overnight in Kamloops and then meet him at his office for test results, I will update friday night hopefully I can get some answers that will help everyone with these symptoms.  Wish me luck!!!
 
Diagonsed in july 07, symptoms since 05, on Humira, VSL #3 Probiotics, insane amount of natural supplements (calcium, serrapetase etc..) and a strict diet, including gluten and lactose free.

TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/12/2010 1:13 AM (GMT -7)   
no they havent done a CT scan yet, healthcare might be free in Canada but its like pulling teeth trying to get a doctor to get you anything that costs alot of money (at least in my experience).  I will definatley ask about kindey stones and bladder fistula. writing a list so i dont forget to ask.  Thanks for the advice!  

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/12/2010 7:41 AM (GMT -7)   
Just wanted to wish you good luck Tookie! Keep us posted on what the doc says, ok?? Hugs!
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"*

TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/13/2010 7:00 PM (GMT -7)   
So had an emergency CT last afternoon, doc said results were horrible, addmitted me and now I am in kamloops hospital for at least three days. On an IV of Cipro, Flagly and a steroid. They think they see bad lower bowel inflamation with a thumb sized abcess pushing on my bladder, no fistula but they said it's close to happening. He is also switching me from humira to remicade. So I guess I sit and rest and hopefully it will clear up without surgery. Thanks for the support I will keep updating as well. Thank god for my kamloops docs, and nurses, iPhone and wireless net package!!! Lol

Ps, would like to thank the doctors who told me to go home "this is ur life". You idiots, this is not a crohns patients life and we will fight to get better!!!

tuper
Regular Member


Date Joined May 2010
Total Posts : 28
   Posted 8/14/2010 9:43 AM (GMT -7)   
Wow! SO GLAD you listened to your body and pushed for a better diagnosis! Take care of YOU, get better soon! (((HUGS)))

TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/14/2010 2:25 PM (GMT -7)   
Ya feeling better, less burning urination (knock on wood) just hoping no surgery. Having first infusion on remicade right now, just wondering cause I'm going off Humira, if remicade stops working, will I be able to go back to Humira or will be outta options? Thanks for the support ppl I look forward to reading ur posts while I am boreddddd in the hospital from home

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/15/2010 5:36 AM (GMT -7)   
Whew, Tookie!!! I am so glad you had the confidence in yourself to NOT listen to those idiot doctors and kept pushing until you found a doctor who would LISTEN to you and THINK for him/herself!!! May all go well w/you now w/the Remicade. (((hugs))) Good luck and God bless!
My computer says I need to upgrade my brain to be compatible with its new software.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/15/2010 6:27 AM (GMT -7)   
Sorry you had such a bad ordeal with those bad docs. You should write a letter to the hospital management to let them know how poorly you were treated and how bad the docs were! I am glad you finally got some treatment!!! Wishing you good luck and a speedy recovery!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

crohnniegurl97
Regular Member


Date Joined Jul 2004
Total Posts : 57
   Posted 8/15/2010 7:09 AM (GMT -7)   
I had excruciating pain in my LRQ and thought I was gonna die along with the feeling that I had to go to the bathroom. It started in my lower back but didn't take long to work around to my abdomen. I thought for sure it was the Crohns again but after being admitted because I was in such pain, they did tests and it came back as kidney stones. I had 2 stones lodged in the duct that leads from the kidney to bladder and urine couldn't pass through so it was backing up...that's where the pain was coming from. Needless to say when they were removed I had instant relief and also relief that it wasn't the Crohns back.

Just a thought if they haven't looked for this. Hope you get some relief and they find out whats wrong!

:)Sharon

TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/15/2010 12:59 PM (GMT -7)   
So true, how do they drain an abcesses? Still waiting here in the hospital on antibiotics, hoping to see the doc tommorrow. Now that this has happened does it make me more prone to abcesses or fistulas? I love this site, everyone on here has given me better advice than the docs. Without this site who knows where I would be today. I will update tommorrow hopefully good news!!!!!!

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/15/2010 2:05 PM (GMT -7)   
You don't want to wait to get treatment for abscesses and fistulas. You can get septic. I am a woman, and a worrier. LOL.... Glad it worked out ok for you though.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

TookieWilliams
Regular Member


Date Joined May 2009
Total Posts : 37
   Posted 8/16/2010 6:03 PM (GMT -7)   
I'm going home! Thank you guys I'll never know how much I appreciate everyones advice and support, I'm saved from the operating table for now. Just need some suggestions now, going on Cipro, Flagly, and Prednisone orally. Should I keep my diet soft until my doc appointment and CT scan in two weeks. And what about physical activity, I like to play tennis basketball etc to stay in shape as well as weightlifting at the gym. Should I stop for awhile. Any after hospital care advice would be huge, this is all new territory for me. Thanks again :)
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