Another Newbie - I might have Crohn's?

[MN34]

Hello,

I was recently (5 months ago) diagnosed with Colitis after a colonoscopy. The only symptoms were blood in the stool and occasional diarrehea. I was put on Mesalamine and the symptoms went away

The blood in the stool came back about a month ago - this time very little blood
The GI doctor did some more tests. I just got the test results back in the mail today. The note from the doctor says that some antibodies to "Saccharomyces cerevisiae" were positive. This may indicate Crohn's
Now I am all confused. I have an appt with the next week
Wouldn't they have noticed that I have Crohn's during the colonoscopy or from biobsy?

I don't have any of the other symptoms


Any help would be appreciated

Thanks

 

[Cara Fusinato]

Crohn's and colitis often appear the same from the inside. Bloodwork can show the difference due to white blood cell count and a few other blood test items that shows active immune response.

 

[kpratte]

This has a good list of the differences and good overview: http://www.ccfc.ca/English/info/diagnosed.html

Like Cara said, very similar, yet different.

- Ken

 

[Kev]

The fact that you were told colitis didn't mean it was ulcerative colitis... it may have been crohn's colitis... Typically (and keep in mind that this is amatuer advice from a totally disreputable source... me. I'm not a doctor, tho I played one as a child).. the visual discriminator visible to the colonoscopy exam is that u.c. is ususally continous, whereas c.c. is splotchy... i.e. in a number of different locations. But not always. My disease starts at the bottom of the colon, skips a small area in the middle, and then continues up the rest. They haven't looked into my ileum (yet). Another visual sign is that crohns affects more than just the initial layer of colon... so deep scarring is an easy indicator. But, that takes time to develop, so new or fresh scars only on the initial layers could be either new c.c. or u.c. ... And, blood tests and biopsies can differentiate between c.c. and u.c. a lot of the time, but not all. That pretty much sums up my situation... and it happens in about 10 percent of the cases.. People have a form of IBD that could be either c.c. or u.c., and they can't tell... It makes a difference in long term options, as generally surgical colon removal cures 'u.c.'... in the majority of cases. Not in all of the cases, just most. If my case could be determined to be 'u.c.', not 'c.c.', then any future consideration of
surgery would be easier. Like, if it is 'u.c.', then there's a great chance surgery can cure me... I'd just have to adjust to the concept. Now, are you totally confused??
With the recent diagnosis, and relatively tame symptoms, you are really new to it..
Anyway, welcome to the forum. I wish you all of the best, and keep us posted, OK?

 

[sueberry]

Hello,
I'm a newbie too. I was diagnosed with Ulcerative Colitis AND Diverticulitis in January of this year. I got the one two punch. Needless to say I lost 17 lbs in two weeks! And, I'm already underweight. I'm 5'4" and I was 110lbs and went down to 93lbs. I look very unhealthy and that led to depression. The Doctor put me on Colazal for three months and it tamed my symptoms, slightly, for almost two months, but alas, it came back full force.
I watched a program on the Discovery Channel about the "Habba Syndrome" and, fortunately, my GI listened to me and researched it. I has to do with my gallbladder not funtioning right. He put me on a cholesteral lowering powder and it worked OVERNIGHT! Which means.... I can take off the diapers! LOL So, now I have three different IBD problems and I wouldn't be surprised if I had Crohns too. I can't seem to gain weight even though I've been eating better since that miracle powder! Plus my tryglicerides are high and hopefully that stuff will help lower that.
As to your question, and you probably thought I forgot!, lol,
Anyhoo, don't be surprised if you have both. I have three IBD problems. The difference between Ulcerative Colitis and Crohns is, Crohns is in the Small bowel (which the scope cannot reach to see) and Colitis is in the Large Intestines. That is what my GI Doc told me anyway.
Good luck and take care.
>
>
"Never, ever, trust a fart!"

 

[Kev]

Ahh, if only it were that simple... first, wise move to never trust a fart, there full of hot air... but, as for colitis... there are several forms.. There is diverticular associated colitis (colitis is inflamation of the 'colon'), ulcertive colitis, crohns colitis... I believe there are at least 2 other varieties of 'colitis' Check the web for more info. A person can have 'crohn's colitis' ... ie crohns in just the colon. Or, you may have it in the ileum... but since the ileum isn't the colon, they don't call it colitis, they used to call it ilietitis (sp?), but that was in the old days... typcially now its called crohn disease... There is several distinct differences between the diagnosis of 'crohn's disease' Vs just a 'colitis'.. One is that crohns attacks deeper than the lining, but that takes time... the other, 'colitis' where the disease is just in the colon, is considered 'cureable' by opting for surgical removal of the colon. I was first diagnosed as having DAC (diverticular associated colitis), which is also considered 'curable' via surgery. I had the surgery, by the very best surgeons, and was told I was 'cured'. within 2 months I was worse than ever.. Anyway, thats not relevant... your doctor may suspect you have colitis, it could be crohns colitis (in that it only is in your colon)... if they find it beyond your colon, then 'they' stop calling it crohn's colitis, they call it crohn's disease... And if they confirm it's crohns disease, then they'll only propose surgery to correct a situation... not hold it out as a probable cure (as they would for any of the colitis.. even crohn's colitis - altho this is rarely done)... Otherwise, the treatment for one is pretty much identical to all the others. The symptoms are pretty much identical, which adds to the whole confusion.. Inflamation of the ileum adds to the pain of CD, whereas typically UC has greater amounts of bloodloss (i.e due to it's ulcerative nature and non blotchy extent - U.C. covers entire areas of the colon.. top, middle, bottom, all of it, etc..)

So, have I really confused you now? next week, you can ask your doc for specifics.

 

[sueberry]

I do so agree with you, that it's not that simple......in fact....it's probably the most confusing of all diseases. And I have been confused for a long time...nothin' new here!
I happen to love your wit, by the way. You are funny! Thanks for the chuckles.
I did manage to get the big D under control, but the pain is still lingering. I don't think I will opt for surgery unless it gets so bad that I have to. Like my Father, he almost died from acute pancreantitis. Knowing I have a bad gallbladder and gallstones, I just hope I can keep away from it.
Take care....from one ol fart to another!
Peace,


Sue

 

[Kev]

sue... If you have a bad gallbladder, and definitely gallstones, you may want to look at getting that taken care of ASAP. the reason I say this is my current situation ALL started with gallbladder problems... Actually, severe pancreatitis & pancreatic cysts due to g/b. I had only the mildest form of colitis, literally only very min. inflamation, (I know, I saw photos of the scope they did at the time).. Problem was pancreatitis, then the cysts... apparently caused by wonky g/b... Anyway, the cycsts resulted in a long delay getting my g/b removed... months and months of waiting. In the interim, my g/b stayed wonky.. By the time they were in a position to remove my g/b (they did it laproscopically), my colitis had gone from a mild inflamation involving only a few inches, to a life threatening case involving 1 & 1/2 feet... pancreatic enzymes controlls food digestion, lots of other VIP stuff, not just insulin... Anyway, IF my g/b had come out sooner, then my pancreas wouldn't have taken such a big hit, and my IBD (U.C., C.C., or whatever) probably wouldn't be the extreme it is now. Like, I normally wouldn't try to talk anyone into surgery, but if you have a known situation with your g/b, and stones to boot, plus a family history of pancreatitis, i'll break my cardinal rule and advise to talk to one doctor, ABOUT all of the issues you're currently facing, and ask what he/she advises ASAP

I'd hate for anyone to be in my shoes because they were afraid of some surgery..

Know what I mean???? Like, if the g/b & stones are a complicating factor, be nice to remove them from the equation before they play hell with your gastrointestinal tract... It can take years for the pancreas to bounce back after g/b or stone issues

 

[sueberry]

Hey Kev,

It's almost like you already know me! I was thinking the same thing about my G/B. I mean, really, why keep it if it doesn't work, right? I agree with you. I got a hysterectomy because it was causing me so much pain and when they went in, they took everything but my cervix because it was so bad and they couldn't detect it until they actually saw it. So, I'm not too bothered by surgery if it actually will increase quality in my life. I'll take the pain from surgery if, in the long run, it reduces it!

Back to the G/B..........
Luckily, my GI Doc actually listens to me and takes my words seriously and researches, does the tests and calls me himself. That, I am grateful for. I will make an appointment first thing, come Monday morning. And I will express my concern.

Another thing to add from my Family history is, about two years ago, my Mother almost died from a stomach ulcer covering half of her stomach! They thought it was all in her head because she had a "normal" blood pressure. They (the ER) goes by the standard, "If you are in pain , then your blood pressure spikes." That is a load of crap! They kept her over night for observation (thinking she was nuts) and did a scope (finally) in the morning and, believe me, it was a shocker! Even the Doctors were shocked and rushed her to the operating room where they took out half of her stomach! The ulcer was >< that close to perforating! I have the same problem with my blood pressure. It is always low, hence, they think I have no pain. What a great history of health, huh?
To top it off both of my parents think I'm not really ill! Why? Because they were taught to "suck it up" and take the pain because it's just "old age aches and pains." My Mother has even gone so far as to ask me to release all of my medical records for proof. I declined her request at the advice of my Doctor. If she doesn't believe me, that's her problem. She knows I've been on Disability since February of 2004. And getting on Disability here in the states is almost impossible. I went to the Disability Doctors assigned by our state and they immediately put me on Disability because I've been so sick. Anyhoo...enough venting for the day.

I hope you're having a better day!
Take care,

~Sue~

 

[Kev]

Well, I'd hate for anyone to run into the complications I had cause I kept my too big mouth shut for a change... My first pancreatic attack put me in the ER. First doc had bloodwork done... thought it was my g/b, and being a young surgeon, he was all set to cut it out. The bloodwork showed extremely elevated enzyme levels... but Xrays did not show any stones... they did show a blockage of the GI tract, but nothing they could pinpoint. The fact that no stones showed up, and the blockage scared him off. Good thing, if he had operated, it's likely the cycsts that he didn't know about would have ruptered, exposing me to very nasty peritonitis.
The next doc took one look at me, and assumed my pancreatitis was the result of hi blood pressure AND/OR hi chlorestoral... I mean, I am 6' 3", and 240 lbs. So, she had more bloodwork done.... and you should have seen the look on her face when she saw my b/p was normal, and my chloresteral perfect.. ( I ate healthy & hiked about 20 k each day... I was in better shape than most men half my age)..
Anyway, with no stones, no hi b/p, and great chloresterol (sp?), they fasted me for a week... and it all went away. I did have a scope done, and all it showed was old scars from colitis I'd had for 1 1/2 months a decade before. everything else was A OK. then, a few short years later, the pancreatitis came back, this time it didn't go away with fasting, and soon after, I started bleeding.. which lead to 2nd scope (a mild case of colitis)... problem is that they didn't go after the g/b soon enuff. By the time they decided to, the cysts were too big for them to operate on, and I had to wait for them to shrink enuff to make the surgery safe. By that time, my mild ol case of colitis was life threatening... Now, here I am, years later, 1 & 1/2 ft of my colon is gone, and now the rest of it is enflamed... and they don't know if it is CC, UC or CD... (they can't get the scope into my ileum because my colon is too bad)..

My ex. was plagued with bad cramping, her OB/GYN was old school, and an old man too. He just put it off as 'normal' female pains. She finally got to see another OB/GYN.. He was smart, young, trained at McGill, and willing to listen with an open mind. He decided to look further, found severe endiometreosis (sp?)and advised a hysterectomy. He was pretty sure it would just involve part of the womb, and only take 2 hours. When he opened her up, it was soooo bad, she was close to death.
Op took 7 & 1/2 hours. In the end, all he could salvage, apart from her life, was 1 ovary. I blessed him for it at the time, course that was before our divorce

Anyway, if one is accustomed to the idea of surgery, and you are fairly certain the item in question is bad and getting worse, and you can thrive & survive without it, then don't drag your feet procrastinating. Putting off something like this can KILL.
I'm not suggesting a do it yourself surgery, or getting the 1st quack that comes along to cut you willy nilly, but if you've got a good doc, and they suggest it, and a second opinion confirms that surgery is a good idea, then I wouldn't sit back and wait. Course, I've had a number of ops in the last few years, yet currently I am in a fight to avoid another.. Go figure... I'm a paradox... or is that a pair of ox? ;-)

 

[sueberry]

Kev,

I'll keep ya posted on what my Doc says. He's a rare one, indeed. One of the top Docs here in Arizona.
I gotta get away from the computer cuz my body is aching from my Fibromyalgia. Yeah, I have a list of problems...most consist of pain.......ain't life grand!!
Take care.....