U.C. now Chrohns

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 12/25/2007 3:03 AM (GMT -7)   
Just some info for you all.  I have had U.C. for about 10 yrs.  Have tried all the drugs, and nothing seemed to work.  My G.I.  told me my large intestine was full of ulcers.  SO they yanked it out.  2-3 yrs later i got really sick again.  They diagnosed me then with CHrohns.  i am now on Remicade, which seems to be doing ok.  Better then using the b/r 10-20 times a day.  3-7 times nightly.  mad Now i only use the b/r 3-5 times a day and 1-3 times at night.  :-) the moral of my story is, if they want to yank your large intestine or colon out, ask if Remicade with help first.  i wish i would have found this site yrs ago.  Could have saved me from having D all of the time. the big thing i am finding out is absolutely no question for your doctor is a dumb question.  the more you ask the better off you will be.  so ask away.
 
 
47 yr old male
Remicade every 8 weeks
immodium 
canasa as needed.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/25/2007 11:39 AM (GMT -7)   
Yes unfortunately this happens when the patient is actually dealing with CD and is DX as having UC especially when the CD is affecting the colon (crohns-colitis) but as you now know CD can affect the entire GI tract whereas UC is limited to the colon/rectom area...surgeons are suppose to quote to their patient BEFORE surgery that there is a possible 2-5% chance that instead of them having UC it could be CD instead and then leave it up to the patient to decide...

There are some obvious differences between UC and CD besides where it attacks, one is with CD the inflammation can go through the many layers of the intesitnal lining, with UC it's basically surfaceable, also with CD there are typically skipped patterns of inflammation, with UC the entire area will be inflammed.

On the other hand, there are many CDers that suffer with crohns-colitis bad enough that they need to get their colon removed anyways, even though a CDer has their colon removed obviously doesn't guarantee that their CD won't affect other areas of the intestines (which it often will) but overall if a CDers colon is bad enough and they have it removed then it can still bring them back some quality of life again...and there would have been no guarantee that Remicade or Humira would have helped your colon either...also don't forget that the longer there is disease activity in the colon from either crohns or UC the slightly higher risk of colon cancer is present, so without your colon you need not worry about that at least.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 12/25/2007 4:15 PM (GMT -7)   
PB,

Are you saying that 2-5% of us who think we have UC in fact have Crohn's. Thats a very interesting stat. I've been looking for that for ages. Thanks for that.

In fact you could make the argument that it is probably (much?) lower than 2-5% since it's only the severe cases that end up with such a consultation and have to make such a decision and are in fact examined to such an extent - not to mention the people who a) never know that they have UC b) never feel the need to report their symptoms.

Any thoughts?

D
800 mg Asacol + 250mg suppositories daily...
 
...but more importantly a Healthy Diet, low levels of Stress and a steadfast belief that "I am a healthy person".
 
 
 
 
 
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/25/2007 4:45 PM (GMT -7)   
I know it's easy for me to say since it hasn't happened to me, but try to look at the positive side of having your colon out.  It is one less place you have to develop fistulas and ulcers.  You won't ever get colon cancer.  A lot of people who have had surgery end up on Remicade afterwards.  I met several.   I have been so confused about whether or not I have UC or Crohn's.  My GI claims it's always been UC, but I asked him how he knew.  I don't remember what he said except it doesn't matter cause the treatments are the same and they are alomst the same.  That ticked me off.  It DOES matter to me.  I think I have Crohn's mainly because I had a fistula and I have never found one person with UC that has had a fistula.  Sorry about your misdiagnosis, it probably happens more than we think.  It is a shame that there is so much confusion and unknown with the two diseases.  You would think by now with all the technology there would be better meds for us.  I am sorry about your situation.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/25/2007 6:57 PM (GMT -7)   
No damo, I'm saying that's what surgeons are suppose to quote UC patients going in for colon removal to cover their butts incase a UCer is mistakenly DX with UC when ifact they might have CD instead....many people are DX as indeterminate IBD meaning the doc(s) aren't sure if it's CD or UC affecting a patient.

:)

princesscolon :) Fistulas are common with CD and not UC simply because with UC the inflammation remains on the surface of the intestinal lining whereas with CD it get penetrate through the many (or all ) layers of the intestinal lining leading to a fistula.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 12/26/2007 3:30 AM (GMT -7)   
Ok but what is the basis for that figure. It surely must have some scientific basis if surgeons quote it to patients? Where did it come from? And if it doesn't relate to CD being misdiagnosed as UC then what does the 2-5% figure mean?

D
800 mg Asacol + 250mg suppositories daily...
 
...but more importantly a Healthy Diet, low levels of Stress and a steadfast belief that "I am a healthy person".
 
 
 
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/26/2007 10:28 AM (GMT -7)   
Well it basically does mean there is a 2-5% chance that a patient actually has CD rather than UC which is why the surgeons are suppose to quote this to UCers looking to get surgery to have their colon removed, and I guess they came up with this figure because of the % of UCers that had their colons removed which instead turned out to be CD and not UC.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 12/26/2007 12:06 PM (GMT -7)   
Ok cool. So it makes sense to therefore say that for any of us suffering from UC there is a 2-5% chance that you actually have CD based on this reasoning. I think the argument (above) for this figure being lower than true figure is still probably true.

Thanks
800 mg Asacol + 250mg suppositories daily...
 
...but more importantly a Healthy Diet, low levels of Stress and a steadfast belief that "I am a healthy person".
 
 
 
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/26/2007 12:41 PM (GMT -7)   
Probably but you know docs they like to cover their butts.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 12/26/2007 12:48 PM (GMT -7)   
Sure and in that case they probably load up the figure and make it even more conservative. I guess from your info we could tentatively conclude that the chances of a UCer actually having Crohns is at most 1 in 20 and more likely 1 in 50-100. Thats really interesting cos no website gives that info.
800 mg Asacol + 250mg suppositories daily...
 
...but more importantly a Healthy Diet, low levels of Stress and a steadfast belief that "I am a healthy person".
 
 
 
 
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/26/2007 4:15 PM (GMT -7)   
I think there's alot the medical community still doesn't understand about IBD. My diagnosis was recently in question and it has been decided - after specialized blood testing - that I do have UC, as originally diagnosed. Yet, I have symptoms and bowel wall thickening on the right side that do not conform to UC and two different gastro docs could give me no satisfactory explanation.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17529
   Posted 12/28/2007 12:29 PM (GMT -7)   

Hi!  I was diagnosed and treated for ulcerative colitis for 11 years before they realized that I really had Crohn's disease.  The Crohn's diagnosis was made at the Cleveland Clinic when they did a colonoscopy.  They went through the large intestine and into the bottom part of the small intestine.  There they found more ulcerations...hence the Crohn's diagnosis.

Several years later, my colon was cobblestoned with ulcers and I was scheduled for the total colectomy.  Having the ileostomy was one of the best decisions that I made.  I now am not "chained" to the toilet and can live my  life freely.  It hasn't kept me from doing anything that I want to do.  I swim daily, been snorkling, parasailing, etc.  The only thing I can't do is move my piano during spring housecleaning!  tongue

It isn't a surgery to take lightly, but it can be a God-send, too.  I fought the idea for such a long time and then, when I HAD to have the surgery, I realized everything I worried about could be handled easily.

I had Crohn's colitis and I haven't had any intestinal ulcerations since I had my colon removed...18 years ago!  I have gotten a vaginal fistula, which caused me to be written up in the medical journals since that's not supposed to happen after a colectomy, and I do get iritises occasionally, but I'm generally pretty "free" from the terrible effects of Crohn's since I had the ileostomy.  I just wanted to share this for any who are having to make that type of decision.  I hope this helps some.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/28/2007 1:25 PM (GMT -7)   
Sherrine, how did you get the fistula when you dont have a colon? I am considering the surgery due to a chance my ulcer may preforate into a rectovaginal fistula. But, I thought that would never happen if I had surgery?!
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade,ulcer shrunk in 3 months August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis? & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Back to Prednisone again :( for joint pain


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17529
   Posted 12/28/2007 1:49 PM (GMT -7)   

Hi, Princess!  I had a recto-vaginal fistula before my surgery.  They took care of all of that.  Three years after my surgery, I had a burning sensation...almost like a paper cut...so I went to see my gynecologist and he didn't have a clue what it was.  So he sent me to a gynecologic oncologist to rule out cancer.  He knew exactly what it was and was so surprised that I had a fistula!  He interviewed me and got my operative report and wrote about it in the medical journals.  They don't know why that happened to me.  I guess it has never happened before.  He stitched up the fistula, with two stitches, and put me on prednisone and flagyl for a short time.  It healed right away and it has never happened since.  This was 15 years ago.  I do seem to get really weird stuff, though, so it didn't surprise me at all.  Hope this helps.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 18, 2017 8:02 AM (GMT -7)
There are a total of 2,906,703 posts in 318,986 threads.
View Active Threads


Who's Online
This forum has 158328 registered members. Please welcome our newest member, Yogabird9.
325 Guest(s), 7 Registered Member(s) are currently online.  Details
EruditePaul, The Dude Abides, UserANONYMOUS, ks1905, PA_grandma, MacroMan, Traneboy