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krw135
Regular Member


Date Joined Mar 2010
Total Posts : 186
   Posted 4/2/2010 9:23 AM (GMT -7)   
Hi,
 
anyone had their colon removed, but still experience multiple bm and pain?
 
Thanks!
Dx with UC in 97, hospital stays monthly, tons of blood transfusion, bowel rest on TPN, prednisone, asacol, sulfa,
99- multiple failed remicade treatments, more hosptial stays
finally in 2001 had enough and had total colectomy (j-pouch) surgery, 1st step was good, then the reversal was not such a breeze, got peritinitis and almost didn't make it.
the rest of 2001-2006 were amazing!
now having problems again- they are thinking Crohns.- have been on Humira with no luck


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/2/2010 11:01 AM (GMT -7)   
Hi come and pop over to the ostomy forum, as well as here there are lots of people who will be able to help you also welcome!! Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


chatter
Regular Member


Date Joined Oct 2009
Total Posts : 51
   Posted 4/2/2010 12:20 PM (GMT -7)   
hi to kry135
Yes, i had a total colectomy and j pouch operation 15yrs ago and have had major surgery since. For the last 28yrs i was under the impression that i had ulcerative colitis. I had UC for 12 yrs before i eventually had my op, it wasn't because i didn't need an op but i just fought against it. I eventually haemorraged for a 2nd time and had to go for surgery I have had continuous problems for the last 15yrs and didn't understand why.
Just recently i have been told it is crohns disease, now it all makes sense. I also have awful joint and muscle pain which never goes away but is always there to varying degrees. Very disapointing but it explains why i wasn't "cured' after my large bowel was removed.
I also had problems after my pouch op, they must have handled my ureters (tube leading from kidney to bladder) you probably know that. Both ureters were paralysed and they had to insert tubes up both my ureters into my kidney to enable my kidneys to drain. Pretty awful for the next 2 years i had these stents removed and replaced every 3 months. My right kidney was damaged permanently. Oh, i forgot, i also had to have my gall bladder removed because of multiple stones.
Apparently it is increasingly common that those who thought they had UC, in fact turn out to have crohns. I had a small bowel obstruction about 3 years ago now and at the moment things are 'revving up' again but at least i know what is going on.
Well, i hope this answers your question, probably more than you wanted to hear. I wish i had known that i had crohns earlier because i now hope they can change my medication and makes things more tolerable. Hope to hear from you soon
Teresa.

krw135
Regular Member


Date Joined Mar 2010
Total Posts : 186
   Posted 4/2/2010 2:33 PM (GMT -7)   

Hi Thresa,

 

Thanks for the info!  you sure have been through it!  not fun at all!!  I also have joint problems, espeically my hands/fingers and knees.  I know all the prednisone has caused a lot of extra problems!  while I have not had any kidney issues, every since my colon surgery I have started having female issues!  I have had 6 abd surgeries now between my colon and ovaries.  i was still in so much pain that they thought it was adhesions.  so I even had adhesion removal sugery- still no luck!

Right now I cant seem to stay out of the bathroom, I am about to OD on lomotil and pepto- I have hardly eaten or had much to drink... I just don't know where it is all coming from!


Dx with UC in 97, hospital stays monthly, tons of blood transfusion, bowel rest on TPN, prednisone, asacol, sulfa,
99- multiple failed remicade treatments, more hosptial stays
finally in 2001 had enough and had total colectomy (j-pouch) surgery, 1st step was good, then the reversal was not such a breeze, got peritinitis and almost didn't make it.
the rest of 2001-2006 were amazing!
now having problems again- they are thinking Crohns.- have been on Humira with no luck


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/2/2010 3:07 PM (GMT -7)   
Just wanted to welcome you and say im glad you got some great input
this definitely is a big caring family
stay with us
lyn
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

I Refuse To Give Up....Others Are Worse Off Than I Am

Donate to WWW.HealingWell.com
MEDS..Lyrica..Dilatin...Pentasa...Folic acid....Ativan..,Diazapam prn..Trazadone at HS..T 4s PRN

NEVER GIVEN UP NOR IN

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