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Posted 6/11/2010 1:57 PM (GMT 0)
Christine,

At this point it doesn't matter what your diagnosis is because no matter which illness you have your colon and rectum must go. The same was true with Pam. However, had Pam's surgeon and GI known that she had Crohn's she most likely would have not been offered a jpouch and would have had to have a permanent ostomy.

Sue
Posted 6/11/2010 3:59 PM (GMT 0)
I'm still overall glad I got the j-pouch, because like Sue said, had we known it was Crohn's right away, it wouldn't have been an option offered to me. However, there's still like a 50/50 chance I can keep it or least keep it for a while. I'd rather have that option. Maybe I'll end up with the perm. ileo and maybe not. Maybe treatment for Crohn's will work just fine and I can keep the pouch and get on with my life. If not, I would have ended up with a perm. ileo anyway. There was no sudden fix that would have happened for my colon. It was too far diseased. And who knows maybe I'll end up with some plastic surgery and a better looking abdomen than I ever had before with a nice, better functioning stoma. Who knows

The skin tag I have is above a fissure my surgeon said. It isn't really bothersome so I never had it removed or anything. I've had it for well over a year.
Posted 6/11/2010 4:21 PM (GMT 0)
Pam,
Sorry to hear about the diagnosis. I hope the treatment goes well and gets it under control.

Thank you for your post though. Some of the responses have given me a lot to think about.
I'll be headed to surgery myself before long and haven't any real investigation of my small bowel done. My colonoscopy showed severe UC with my whole colon involved - doc said he didn't see any indication of Chron's. I did do blood tests this week that supposedly can identify Chron's, though, and while I don't have a barium x-ray scheduled yet, I believe the doc wants to do one.

Currently, my GI doc is referring me to a surgeon at Shands Hospital (in Gainesville, FL - I'm in north Florida myself) for an evaluation and consultation prior to scheduling surgery, and from what I've read here it sounds like I should request a capsule study before getting cut (or at least discuss it with the surgeon).
Does that sound right? If the blood tests (and potentially barium x-ray) don't indicate Chron's, do you think the doc (and by extension the insurance company) will argue that a capsule study isn't medically necessary?
Posted 6/11/2010 6:33 PM (GMT 0)
He might say it's not necessary. I was always told no indication of Crohns. I had the blood tests done more than once. I still have Crohns. I had CT scans, too, and x-rays and barium tests and nothing ever showed Crohns. So who knows really? But it's also possible it was never visible before more recently. I did have a lot of nausea/vomiting back way before surgery even. If it would make you feel better to ask about a capsule test, why not ask?
Posted 6/11/2010 8:56 PM (GMT 0)
     I never had any issues any further than the rectum.   I do have a slight diverticulosis and stay away from nuts, popcorn, corn anything with seeds.  So, I guess they are correct in my diagnosis.

     How you feeling Pam?

Posted 6/11/2010 9:56 PM (GMT 0)
I'm feeling pretty well Christine. The IV steroids are helping slow things down, so I only go every 2-3 hours at night instead of every hour. I'll be here for the weekend on the steroids. They still have me on the Flagyl...not sure if they will still send me home on it, though. The pain and pressure in my rectum is gone, so the pouch seems to have cleared up. I haven't had any bleeding today. I am still getting stomach pains, but the pain meds help so I feel fine. Now let's just hope I get a maintenance drug that works well, and I can go on and be happy from here on out (or at least for a while). I have a GI appointment for next Wednesday and my GI's secretary was already instructed by him to get the insurance moving on approving Humira.
I am taking B12 and Iron now, too, and between that and the steroids, I have more energy. My hemoglobin went up to 9 so I won't need a transfusion. I have been staying up all night and don't even feel tired :D
I'm on the TPN for 24 hours here, instead of 14, but it's a smaller amount. They took me off the IV fluids since I'm pretty well hydrated right now and my electrolyte levels are ok now
Posted 6/11/2010 10:30 PM (GMT 0)

pam222 said...

pb4 said...
My crohn's was quickly and easily DX for me, having the perianal crohn's skin tags was one thing that made it easy to help DX...plus at the time of DX I had classic symptoms and the scope clearly showed patches of inflammation which is quite different from the complete inflammation that goes with having UC, so there are definitely distinctive differences (aside from perianal disease) that a good GI will notice in order to make a correct DX.

I have an anal skin tag. My surgeon commented on it but never said it had anything to do with Crohn's

It may be a skin tag from an old hemmie (that is if you've ever had hemerhoides before, perianal crohn's skin tags have a distinctive look to them and are quite different from hemmies (mine were actually mistaken for hemmies cuz the colon/rectom surgeon that saw them was an idiot) mine were banded while in a flare and have remained in a flared state ever since.

I'll post a link that shows the difference between hemmies and perianal crohn's skin tags (which BTW, you're not suppose to have surgery on cuz it tends to cause more grief than good)...

Be warned, these pics are gross but informative, the first set of pics is hemmies, the pics down below are perianal crohn's skin tags (aka: elephant ears)....

http://www.emedmag.com/html/pre/fea/features/011504.asp

Posted 6/11/2010 10:40 PM (GMT 0)

Christine1946 said...
     Not to sound dumb...but what exactly is a perianal skin tag?  I have what I would call skin tags located on the top of my legs and arms....is this consistant with Crohn's?  I have never had a small bowel study done either.  Gosh. ...I hope and pray I don't have Crohn's with surgery looming a few weeks away.  I never had any issues with UC other than the proctitis....no ulcerations in my colon.  Now I really am worried.

 

 

 

Check out this link Christine, it shows perianal crohn's skin tags compared to hemmies (some docs (that are useless) get them confused which is ashame since they're suppose to be the experts....BTW, they are nothing the same as other skin tags on the body...that's why they're specifically called periANAL skin tags, cuz they're on the anus...

 

Here's the link....

 

http://www.emedmag.com/html/pre/fea/features/011504.asp

Posted 6/12/2010 12:11 AM (GMT 0)
Thanks for that link! It looks like the elephant ear picture--not like the hemorrhoid pic. I've never had hemorrhoids. My surgeon said there was a fissure below it
Posted 6/12/2010 12:45 AM (GMT 0)
     Pam...is your rectum still intact then? 
Posted 6/12/2010 1:06 AM (GMT 0)
Well that's the anus. They take the rectal tissue out but leave the muscle intact
Posted 6/12/2010 1:52 AM (GMT 0)
Pam, is it the chrohn's causing the tremendous output???? I am searching for answers because Lizzie, on the ostomy site, is having so much output from her BCIR, internal ileostomy, that her body can't keep up....she is VERY sick! As far as I know, they haven't done any cultures of the output??? She has to get extra fluids and is supposed to have a new PICC line inserted today. This can not be normal for her as she has been without her colon for 2 years...so, this is a new symptom, the extreme output....

I have been following your case and am very sorry to hear it is chrohn's. I have a niece and nephew, both have the same mom and dad, that have chrohn's. They are both on remicaid and doing pretty good. My niece was dx at 4 years old and my nephew, just last year after losing a tremendous amount of weight in a short period of time. They both suffer with fistulas and both of them had a piece of thread inserted to drain the fistulas...sorry, not sure the exact name.

So glad to hear your output is slowing down. That is great. And good luck on the plastic surgery.
Posted 6/12/2010 2:14 AM (GMT 0)
Thanks!
Yes, I believe it is why I have had such diarrhea. It is slowing now with the IV steroid. It is also thickening some. Yes, it's still liquidy but there are some solid pieces, and it's been easier to pass. I am upset I have to deal with this forever, but I'm happy to have an answer and I actually feel optimistic for once that things will really improve. I can do this.
Posted 6/12/2010 2:31 AM (GMT 0)
Pam, yes you can do this....you are one strong woman and I have been rooting for you ever since you posted on the ostomy board....have you tried the remicaid? It has given my niece and nephew a new life. Thanks so much for your response....I am having surgery, June 21st, and will have a subtotal colectomy and will get hooked up to a temporary loop ileostomy. I am very nervous, but when I read about what all of ya'll and you have been through, I think, I can do this! This is just another step to hopefully, give me a more normal life. Good luck, Tracy
Posted 6/12/2010 4:48 AM (GMT 0)
Yes, I tried Remicade last summer. That's why we're just going to move onto the Humira now.
Good luck with your surgery!! I'm sure it will be great
Posted 6/12/2010 3:45 PM (GMT 0)
Sorry to hear you have Chron's. I wouldn't wish that on anyone. No matter how bad my colitis can get, I'm always thankful it's not Chron's.
Posted 6/12/2010 4:13 PM (GMT 0)
You know what irks me now? Some of the same people who used to say "well, at least you have UC and not Crohn's because I know someone with Crohn's and it's BAD" are now saying "well, Crohn's can be managed by diet, though, right? My old nanny had Crohn's and she just had to eat chicken and rice and was fine" or "my friend just takes medicine and is fine". Ugh, frustrating.
Posted 6/12/2010 4:39 PM (GMT 0)
UC can be managed through diet/supplements for some patients as well, just as with CD it's individual, not all CDers can manage via diet alone so I wouldn't put any faith in those comments....The reason crohn's is considered worse is because it can affect any part of the GI tract from mouth to anus (and UC is limited to the colon/rectom) which can make it harder to control and/or treat, as far as symptoms go, they're basically the very same (CD has a much higher risk of fistulas compared to UC in which it's very rare to get fistulas) the extraintestinal manifestations are pretty much all the same as well for both UC and CD....you can take a very mild CD against a very severe UCer and the UCer would be clinically worse off, difference being, that UCer could get their colon/rectom removed and recover from having UC, doing that to a CDer doesn't work, cuz as you cut away the diseased area(s) it tends to move to new areas (anywhere from mouth to anus).
Posted 6/12/2010 4:57 PM (GMT 0)
yep, that's why it can get annoying when people who understand nothing tell me things like this. I tried telling them it's not as if I suddenly have something drastically different. it will really be managed in much the same ways, and the drugs I've already tried would have also been tried had my diagnosis always been CD
Posted 6/13/2010 7:13 AM (GMT 0)
I guess I should have explained. For me, if my colitis gets really bad, I can get my colon taken out and be done with it. I wouldn't have that option if I had Chron's. So, yes, it is horrible to have UC. It is horrible to have blood coming out the butt, be running to the toilet and not always making it, and to be exhausted in exercise classes. But at least I do have the option of getting my colon taken out. Knowing that makes it a lot easier for me to deal with this disease mentally. Now for those that don't have that option, that's another story.
Posted 6/13/2010 6:14 PM (GMT 0)
But getting your colon out, Pam...was necessary, even though you had CD. If you were diagnosed with CD...would they not have taken out your colon and would they have said...suffer, even though the meds don't work for your colon, but they might work better if we take it out and there's less inflammation creating so many problems?

if any of that makes sense?

q
Posted 6/13/2010 10:49 PM (GMT 0)
they still would have taken my colon out. i just wouldn't have been given the j-pouch and would have had to go straight to the perm. ileo. i think it's better that i am getting a chance at the j-pouch. you're right that maybe meds will work with all the colon out of the way. at least i have control now without the constant colon spasms
Posted 6/14/2010 5:35 AM (GMT 0)
Ah, you did understand..lol. I know I can look this up, but since you're in this situation, I'm directly asking for that specifically.

What if you were to go for a permanent ileo...what would they have to do?

And if you do go for the j-pouch...if that doesn't work, can you still have a permanent ileo?

I haven't treaded much on that topic...I should because there are so many who are having the surgery and the choices aren't as straight forward as I previously assumed...

Thanks Pam for answering all the questions..much appreciated.

q
Posted 6/14/2010 5:47 AM (GMT 0)
Generally CDers are not good candidates for the j-pouch because they use part of the small intestines with the j-pouch and since CD typically affects the small intestines, that alone is why CDers are not good candidates for the j-pouch...good chance that possibly some time in the future a bag will be needed.
Posted 6/14/2010 9:13 AM (GMT 0)
Yes, what pb4 said. I may be ok with meds that can control the CD so that the pouch can still function. I may not. yes, if the pouch doesn't end up working out, they can do another surgery to take out the pouch completely and give me a perm. ileo. So In a way I'm somewhat glad about the misdiagnosis, because I did not do well with an ileo and I MAY be able to keep the pouch this way. I am not entirely optimistic, and realize I may end up with a perm. ileo, but at least I will know it had to be that way. True, it would ultimately be a lot of major surgeries when one at the beginning would have sufficed, but oh well. Also, temporary ileos are harder to manage and I may not have as many problems as I did then with a perm. ileo.
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