How to be 100% certain it's not Crohn's??!!??!

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princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 3/14/2008 1:35 PM (GMT -6)   
Now that surgery is looming over my head, I want to be definite I do not have Crohn's before they rip my colon out.  I just had an upper GI and small bowel follow through.  The barium D feels like it's ripping my ulcer and rectum into shreds. I have a feeling that these xrays are not gonna show Crohn's.  So then I guess it's endoscopy or pillcam time?  Have any of you done these tests?  Is anyone else frightened that they may have Crohn's and not UC?
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


Sherrine
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Date Joined Apr 2005
Total Posts : 17895
   Posted 3/14/2008 2:02 PM (GMT -6)   
Hi, Princess!  I was diagnosed with ulcerative colitis for 11 years and then they found out it was Crohn's.  It was the colonoscopy that proved it for me.  I had many ulcerations of the rectum and colon, and when they went a little in the ileum, they saw ulcers there too and that proved that it was Crohn's and not UC.  This was done at the Cleveland Clinic.  Then they did all the other tests including the endoscopy (piece of cake!)  I ended up develping a vaginal fistula, too.  YUCK!
 
Princess, two years later I did end up losing my rectum and colon.  My colon became cobblestoned with ulcers and I was basically bleeding to death.  They had to keep giving me blood transfusions and so I was scheduled for surgery. 
 
You know, Princess, that was the best thing I ever did!  The ileostomy has not given me any problems and I can eat nearly everything...even salad and popcorn!  I started out v-e-r-y slowly with the food after surgery, though.  The ostomy has not stopped me from doing anything.  I'm in my pool several hours a day, I've been parasailing, snorkling, etc.  BUT, I can't move my piano when I clean now.  Darn!  Also, I don't have to take any medications for Crohn's now! 
 
I know I have been blessed but it's been 18 1/2 years since I had the surgery!  I'll get other things like Crohn's arthritis, iritises, etc.  I even developed a vaginal fistula after my colon was removed and was written up in the medical journals for that.  But, those things are a walk in the park compared to what I went through before surgery.
 
So, if surgery can't be prevented, just know it's not the end of the world.  I've been having a great life WITH my ileostomy!
 
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


tjf
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Date Joined Dec 2005
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   Posted 3/14/2008 2:06 PM (GMT -6)   
Wow Sherrine! Thanks for sharing your story.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 3/14/2008 2:10 PM (GMT -6)   
Thanks Sherrine.  It is always great to hear of people doing well with the illeostomy.  I am confused, though. I thought if I have Crohn's and not UC then I should not get my colon removed?!? Can you explain this to me? My concern was getting my colon out and then having Crohn's in what's left of me and being worse off. I currently have no ulcers in my colon. Only a horrible one in my rectum. My GI says if my ulcer breaks into my vagina, I have to get my colon out. I am so confused!


Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 3/14/2008 2:16 PM (GMT -6)   

This is a hrad one- my surgeon told me that there really was no definitive test to differentiate between the 2, except when they do a pathology report on the colon after it's been taken out! I'm curious to see what my pathology report turns up, becasue though I was diagnosed with UC, I've had trouble with a fistula which is generally a Ctohn's only issue. And Sherrine- you made my day!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/14/2008 2:26 PM (GMT -6)   
Unfortunately as of now there is no test to prove one way or the other that you have UC and not Crohn's. My GI thought I had Crohn's but I felt I had UC. My pathology indicated UC.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 3/14/2008 3:11 PM (GMT -6)   
My doctor swears I have UC even though I have double checked with him several times. I have patches on imflamation (not continuous) and my rectum isn't imflammed, and I tested negative for uc markers and neg for crohns markers. My biopsies come back UC. I guess I will not be surprised if the eventually tell me I have either....
Jessica 26/F
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Prednisone 40Mg/day taper every 5 days(at 5 mg currently every other day)
Culturelle once daily
Tried (Entorcort EC 9ml/day)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/14/2008 3:35 PM (GMT -6)   
Differences between CD and UC...

with UC the inflammation is surfacable only, with CD it can go through the many layers of the intestinal lining which when it does it's usually what leads to fistulas (which can be common for crohnies but not for UC).

also, with CD there are skipped patterns of inflammation with healthy tissue in between, with UC the entire area will be inflammed.

Most common know difference between the 2 are UC is limited to the colon/rectom CD can affect the entire GI tract from mouth to anus.

CDers that have severe enough disease in their colon/rectom do also get colectomies done and are quite happy and even though you can still have CD affecting other parts of your intestinal tract, having your colon/rectom removed (wearing a bag) is still a better quality of life even if there is disease activity in the small intestines.

Doctors are suppose to quote a 2-5% chance of a patient with UC going in for surgery for colon/rectom removal that it could infact be CD that they may have, they are suppose to make you aware of this, to cover their own butts I'm sure.

It is also super rare but possible for a patient to have BOTH UC and CD, very rare, but it's been known to happen.

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


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 3/14/2008 4:04 PM (GMT -6)   
According to the doctors at the Cleveland Clinic, ulcerative colitis is only located in the large intestine...no where else.  If you have ulcers in other parts of your intestinal tract, you have Crohn's.  I had nearly all of the ulcers in my colon and only a tiny ulcer in the beginning of the ileum.  So, that's how they knew it was Crohn's disease.  Also, ulcers from ulcerative colitis don't go as deep as with Crohn's disease.  Crohn's ulcers can go all the way through the intestine involved and then start burrowing into other organs. 
 
I did eventually have the ulcer chew though the bowel into the vagina...hence a vaginal fistula.  They then ran tests and checked other organs, and I think checked it thoroughly during my surgery, too, and I didn't have any more fistulas anyplace other than the vagina.  I was having bowel movements throught the rectum and the vagina!  Infection time!  LOL
 
They said that sometimes Crohn's patients have what is called "Crohn's colitis".  That means that the ulcers are pretty much in the large intestines and, when the colon is removed, they may not have much problem with Crohn's after that.  Apparently that is what has happened to me.  Now, I still could have problems happen down the road but I'm praying that I won't.  As I said before, I'll get other things that are related to Crohn's but I haven't had the terrible ulcerations in the small intestines that many people with Crohn's have.  (They probably removed that diseased portion of my ileum during the surgery.)  My rectum was removed, too, during the surgery and the opening was stitched closed.  I have a permanent ileostomy.  I was told that pull through surgery doesn't work well with Crohn's patients because they tend to get ulcers again.  But, I don't have a problem having an ostomy so I wouldn't even consider it now.
 
Princess, I don't understand why they want to take your entire colon out if you don't have any ulcers there.  Why can't they remove the diseased rectum and give you a colostomy? Doctors always want to save the good tissue.  I'm just puzzled.
 
I do hope I have answered some of your questions, though.
 
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


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/14/2008 4:31 PM (GMT -6)   
An endoscopy is no big deal at all, so long as you're out. I've heard horror stories from a few people who had the procedure done while they were still conscious.

Some of us are just atypical and may never have a firm, 100% infallable diagnosis. I think I'm one of those. There is a fairly new panel of blood tests called the IBD Serology 7 that is supposed to be very helpful in determining a UC or CD diagnosis. You can download a PDF to learn more:

http://www.prometheuspatients.com/PDF/PRM16038_DX_IBD_S7_client.pdf


Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/14/2008 5:15 PM (GMT -6)   
Sherrine said...
According to the doctors at the Cleveland Clinic, ulcerative colitis is only located in the large intestine...no where else.  If you have ulcers in other parts of your intestinal tract, you have Crohn's.  I had nearly all of the ulcers in my colon and only a tiny ulcer in the beginning of the ileum.  So, that's how they knew it was Crohn's disease.  Also, ulcers from ulcerative colitis don't go as deep as with Crohn's disease.  Crohn's ulcers can go all the way through the intestine involved and then start burrowing into other organs. 
 
I did eventually have the ulcer chew though the bowel into the vagina...hence a vaginal fistula.  They then ran tests and checked other organs, and I think checked it thoroughly during my surgery, too, and I didn't have any more fistulas anyplace other than the vagina.  I was having bowel movements throught the rectum and the vagina!  Infection time!  LOL
 
They said that sometimes Crohn's patients have what is called "Crohn's colitis".  That means that the ulcers are pretty much in the large intestines and, when the colon is removed, they may not have much problem with Crohn's after that.  Apparently that is what has happened to me.  Now, I still could have problems happen down the road but I'm praying that I won't.  As I said before, I'll get other things that are related to Crohn's but I haven't had the terrible ulcerations in the small intestines that many people with Crohn's have.  (They probably removed that diseased portion of my ileum during the surgery.)  My rectum was removed, too, during the surgery and the opening was stitched closed.  I have a permanent ileostomy.  I was told that pull through surgery doesn't work well with Crohn's patients because they tend to get ulcers again.  But, I don't have a problem having an ostomy so I wouldn't even consider it now.
 
Princess, I don't understand why they want to take your entire colon out if you don't have any ulcers there.  Why can't they remove the diseased rectum and give you a colostomy? Doctors always want to save the good tissue.  I'm just puzzled.
 
I do hope I have answered some of your questions, though.
 
Sherrine 
 
 

Well then the docs at the cleveland clinic are wrong because UC can also affect the rectom and often will start in the rectom, not always, but often.
 
There seems to be some other mixed up info here as well, it's inflammation that can go beneith the many layers of the intestinal lining which leads to fistulas not the polyps (which is what it's referred to with CD, and ulcers for UCers).
 
And you can definitely still have issues as a crohnie when having your colon removed because CD can and usually will appear in the small intestines and/or other parts of the GI tract even after colon/rectom removal, but if you're wearing a bag the issues from active CD in other parts will not be as life altering compared to not having a bag.
 
Also, not all crohnies suffer with polyps (similar to ulcers) some or many deal with inflammation only...there's alot to the knowledge of CD..there are types of CD that vary from patient to patient, some suffer with inflammation only, some are prone to fistulization, some are prone to stricturing crohns.
 

Having ulcers alone is not the only issue with UC, if the inflammation is bad enough and your colon resembles hamburger because of severe inflammation, that's reason enough to have it removed, regardless if it's inflammation from CD or UC.

:)


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


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/14/2008 6:29 PM (GMT -6)   
Thank you all for the info and for taking the time to respond. Thank you Princesa, I forgot about the Promethus testing, I will be calling my GI on Monday to ask if I can get it there and I will speak to my insurance as well. Sherrine, my GI says my colon needs to come out so that I will be "cured" of UC. This is why I want to be as certain as I can that I have UC and not Crohn's.

This has been my history for anyone who is interested:

At age 15 in 1995, I had D constantly, cramping and mucous. I had a lower GI barium test which showed nothing. Then I started bleeding with my D and I had a colonoscopy. A GI in Michigan said it was ulcerations on the left side of my colon and it was Ulcerative Colitis. I have always had D or constipation and blood since. In 2004, I was flaring so badly and had a colonoscopy. I had no ulcerations in my colon, but my rectum had about 3 ulcers in seperate spots. The one closest to my anus was about one inch deep, the other two were not deep. The past 4 years I have had more problems with constipation than D. Rarely I get tremendous cramping and I vomit while having D. It is very hard for me to pass my stool no matter the consistency. Sometimes I get very nauseous while going to the bathroom. My GI says my biopsies say UC but he is not certain it is UC.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/14/2008 7:04 PM (GMT -6)   
princesscolon, you posted about how ill you are now- I'm sorry, truly! How do you feel about surgery? Do you like and trust your GI? Do you think he/she is rash to suggest surgery? It's a tough call, either way. I do know that! I like what pb4 said, about how if your colon resembles hamburger.... mine unfortunately does! Right now, I am feeling ok about surgery. I hope you are able to hold out until you stockpile Humira, & that it helps you. When it gets to a certain point, it almsot doesn't matter if it's UC or Crohn's- if you are miserable & sick, well then...

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 3/14/2008 7:30 PM (GMT -6)   
Pb4, the Cleveland Clinic is definitely not wrong.  I think you misunderstood what I wrote, or perhaps I was assuming too much. I thought everyone on here realized that Crohn's disease can affect any part of the digestive system...from the mouth to the rectum.  UC affects the large intestines and the rectum.  That's why I was misdiagnosed for so many years.  My colon and rectum were the parts basically involved.  But, when they found ulcers in the ileum, where the colon and ileum attach, they knew it was Crohn's disease. 
 
As far as the term ulcers is concerned please read this:
 
 

What are the complications of Crohn’s disease?

The most common complication is blockage of the intestine. Blockage occurs because the disease tends to thicken the intestinal wall with swelling and scar tissue, narrowing the passage. Crohn’s disease may also cause sores, or ulcers, that tunnel through the affected area into surrounding tissues, such as the bladder, vagina, or skin. The areas around the anus and rectum are often involved. The tunnels, called fistulas, are a common complication and often become infected. Sometimes fistulas can be treated with medicine, but in some cases they may require surgery. In addition to fistulas, small tears called fissures may develop in the lining of the mucus membrane of the anus.

I had those ulcers.  I saw those ulcers in my colon when I had a sigmoidoscopy.  Those ulcers caused the vaginal fistula that I had to have repaired during surgery.  When I developed the second fistula (where I was written up in the medical journals) they were able to take care of it by using prednisone, flagyl, and stitches.  It cleared up and I haven't had a problem since.

Now, I never said that a Crohn's patient, if having had the colon removed would never have any more problems with Crohn's.  I stated, correctly, that in my case I haven't had a problem BUT I could in the future.  Again,I may not either.  My surgeon, Dr. Victor Fazio, who is well known in the field, said that I may never have more problems with inflammation or ulcerations in the intestines...IF I have what they refer to as Crohn's colitis.  That's why I used the word "sometimes" in my explanation.

I hope this is clearer now.  Have a great weekend!

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

Post Edited (Sherrine) : 3/14/2008 6:34:27 PM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/14/2008 7:58 PM (GMT -6)   

And yet you can still have a colonosopy and a endosocopy and see no signs of CD but down the road be diagnosed with CD when all the information at the time indicated UC.  This is not common but it has happened.  Again, there are no guarantees. 

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/14/2008 8:42 PM (GMT -6)   
After every test that can be done I am still considered "undetermined colitis". I was originally diagnosed with CD and 2 years ago a colonoscopy had my GI thinking it was more UC. I think that it's UC only for the simple fact that most of my flare's were contained to the rectum and I only had flare ups when I quit smoking. When I quit smoking in May of last year by the end of June I was in the worst flare and no meds were working so by August the entire large intestine was inflamed and they removed my colon. Even sending it to the lab, it is inconclusive.

I am just hoping for the best after the final surgery :-)
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/14/2008 10:19 PM (GMT -6)   
Sherrine :)

Yes, you wrote "According to the doctors at the Cleveland Clinic, ulcerative colitis is only located in the large intestine...no where else. If you have ulcers in other parts of your intestinal tract, you have Crohn's. "

That is incorrect as UC can and often does affect the rectom not just the colon....the large intestine/colon and the rectom are 2 seperate parts of the GI tract.

With crohns, the sores are referred to as polyps.

polyps are not the only source of getting fistulas, from my understanding because with crohns the inflammation can go through the many layers of the intestinal lining leading to a fistula.

You also wrote this.... "the large intestines and, when the colon is removed, they may not have much problem with Crohn's after that."

That is also incorrect, even when a crohnie gets part of the small intestine removed (called a resection) CD can easily re-appear in the small intestines again, and getting your colon removed gives you a greater chance of crohns appearing in your small intestines.

I'm a crohns-colitis sufferer for the last 17 yrs now myself.

Hopefully your CD will stay in control, but at the first sign of problems be sure to see your doc, of course wearing a bag will eliminate the common complaints of blood, frequency and those types of issues, but stay on guard if you experiance any changes in anything.

Since many crohnies still have to be on meds even when they get their colons removed because of the CD attacking their small intestines, most commonly.

:)


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


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 3/15/2008 8:27 AM (GMT -6)   
On the chances of having both UC and CD. Well the incidence of both is approx. 1 in 10,000 and if we assume that having one disease doesn't make it more likely of having the second (which seems to be supported on web literature for UC and CD) then the chances of having both are 1 in 100 million. So about 3 people in america are unlucky enough to have both under the above assumption.

D
Asacol and Iron as Needed. <I've fallen back into unhealthy ways and really enjoying it, burb!>
 
"There is no reality. Only your perception of it"
 
 
 
 
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/15/2008 9:07 AM (GMT -6)   
My understanding is that there's also a small percentage of people who fall in the category of "indeterminate colitis" because their colons have features of both UC and Crohn's.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 3/15/2008 9:08 AM (GMT -6)   
Princess - I was just talking to a surgeon about this exact question yesterday. a few thoughts:
1. ulcers in the rectum are actually the reason we get the urgency and lack of control. he said the irritated rectum is actually the cause of a lot of the problems w/ regards to urgency and that even though it sucks, they do surgery when the UC is only in the rectum. if drugs fail to get the rectum healthy, the person still will need the surgery.

2. re: crohns, he said a few things: they determing both with testing and symptoms. usually, not always, patients with UC experience different symptoms than crohns, so if your tests show UC and the symptoms you describe sound like UC, then likely it is UC. He also said that sometimes crohns is just in the colon, and acts just like UC even though it looks like and biopsies like crohns. in those instances they treat it like UC and pull the colon. this is called indeterminate colitis.

he also said that yes, it is possible to be wrong on this one. you pull the colon and eventually find out it is crohns. but that isn't too common and it is just a risk. I know that isn't encouraging, but hopefully the other stuff I wrote is encouraging. basically, the takeaway I had is that if it isn't anywhere but the colon, and the symptoms are UC, then surgery is reasonable. sounds like that's where you are.

I can imagine this must be hard and scary, but hang in there and remember that lots of people have this surgery and say it is the best thing they've ever done. the way my surgeon was talking yesterday, you would have thought he was offering me a free trip to paris, the way he was talking about its improvements in quality of life.....

by the way, maybe you should get a second opinion, or a third?? it is a big decision. get someone else to see photos of your scope and talk with you, to make sure...??? just a thought

i
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Cortfoam in AM, Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 3/15/2008 9:18 AM (GMT -6)   
Pb4, I've had Crohn's, actually, all of my life (I'm 60 years old) but it wasn't diagnosed as  Crohn's until nearly 21 years ago. 
 
I copied an article that said that Crohn's people get ulcerations in the intestines in a previous post.  That's what I had and that's why I had to have surgery for it.  I was bleeding to death from the bleeding ulcerations.  Here is a link from the Mayo Clinic that talks about the ulcerations.  Maybe you'll believe them.
 

We are on the same page with the fact that you can have resections after having your colon removed, but there are some of us that have no more problem.  I'm a walking, living, breathing example of that.

I totally understand Crohn's, since I have lived with it so long.  I've known people with the problem...even family members.  It really doesn't have to be explained to me.  Yes, I made the error of saying that UC was in the large intestine only, but I figured you would know it also included the rectum since it's attached to the end of the large intestine.  I didn't know I would have to be that specific in the UC forum.  I'm sorry if I have confused anyone.

I came here and saw Princesscolon's post and answered it to the best of my ability.  I have given accurate information and I don't want to get in an argument about it.  So, this will be my last post on this particular topic. Besides, I'm far too busy in the fibromyalgia forum.  I have proved my point several times and have accurately written in all of my posts.  I reread them just to make sure.  I sure know Crohn's is a terrible disease, along with UC.  I know Crohn's can affect any part of the digestive tract and I have known many who have had many resections.  I have a friend that ony has three feet of intestines left and uses TPN 14 hours a day, but she lives and very busy and happy life.

Princess, I really am praying that you don't have to have the ostomy performed.  If you do indeed have UC you could possibly have pull through surgery, if your rectum doesn't have to be removed.  If you do have to go through the surgery, contact me.  I have a great story about my ostomy surgery!  Just click on the envelope below my name and you can email me.  I'll be happy to tell you the story! 

To all on this forum, have a wonderful day!

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


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/15/2008 9:42 AM (GMT -6)   

Sherrine,

It is never recommended for a UC patient to have surgery and leave the rectum!  The rectum has to go if a UC patient wants to get off UC medications.  It is also not recommended that a UC patient have "pull thru" surgery.  The pull thru surgery is not successful for adults and has been virtually replaced by the j-pouch.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 3/15/2008 11:00 AM (GMT -6)   
Gee, I wish I didn't read my email!  tongue
 
You are absloutely correct on that one.  Things had changed since I had my surgery done.  Dr. Fazio told me that, at the time, pull through surgery was not recommended because, with Crohn's patients, they tend to get a reoccurance of the ulcerations.  They did the pull through for ulcerative colitis patients, though, back in 1989 when I had my surgery.  I had heard of J-Pouch surgeries but that wasn't recommended for me.  (That to me is a type of "pull through" surgery, since you are connected and have bowel movements the "normal" way.  I also see that they don't leave the rectum for UC patients anymore, either.  I guess I have to be v-e-r-y specific here!  LOL)  He removed the rectum but left the muscles intact just in case a new technique was developed in the future.  But, I don't have any problem with the ileostomy so I wouldn't do anything about it.
 
 
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

Post Edited (Sherrine) : 3/15/2008 10:14:39 AM (GMT-6)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/15/2008 11:27 AM (GMT -6)   
I think that Sherrine has a very inspirational story about her experience after surgery and people should just stop with the angry responses to her. Maybe you could respond in a nicer tone. We are not here to attack eachother, but to support eachother. If someone posts incorrect medical information, then it is good we have people here who can correct it. But why does it have to be done rudely? On another note, thank you all for your information and concerns. My GI has told me that having a deep rectal ulcer for 5 or so years makes me a candidate for surgery. I just want to be certain I do not have Crohn's. If I did have Crohn's, I could get a rectal resection and leave my colon alone.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 3/15/2008 12:09 PM (GMT -6)   
Princess, have  you gotten a second opinion?  When I had my colonoscopy, I had ulcerations of the rectum, some in the large intestine, and then ulcerations in the lower end of the ileum.  They left me intact and tried the prednisone enemas and such.  But, two years later, my colon was severely ulcerated.   They couldn't get a scope in it the day before surgery!  The biopsies taken at the time of the colonoscopy told the doctors it was Crohn's.  I really hope you can get a correct diagnosis.  It would be awful to have a healthy or functioning colon removed.
 
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

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