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Posted 2/12/2014 1:15 PM (GMT 0)
have you been diagnosed with Ulcerative Colitis?
Posted 2/12/2014 3:18 PM (GMT 0)

Rabbit81586 said...
have you been diagnosed with Ulcerative Colitis?

My very first diagnosis when I had symptoms about 12 years ago was "Crohn's"...I went to a different doctor two months later (still my current doc) and he diagnosed me with UC. My sister had UC as well but she had a full J Pouch 17 years ago. When I went for surgery my surgeon listed me as "Crohn's Colitis". I see my doc again Monday and need this figured out. Crohn's Colitis was the reason they leaned towards doing the bowel resection rather than full removal. I will not be going through that extreme surgery anytime soon again. I just went through 4 months of hell already.
Posted 2/12/2014 8:23 PM (GMT 0)
sheesh, I'll never understand my colon...I had a very loose bowel movement this morning that I could barely control and now this afternoon i was in the bathroom a while and actually had to push a somewhat normal bowel movement out
Posted 2/13/2014 2:54 AM (GMT 0)
@blksteeda - Yea you definitely need to get it situated as to whether or not its Crohns or Colitis, if it is UC then the full colon removal will really help you out. If it's Crohn's maybe not so much. I know its hard to really diagnose but with the section they removed did they do a pathology on it? That should've given them a much more definitive answer and with the temp ileo did you have any issues?

Also, so your sister has had a j-pouch for 17 years? Hows she doing with it? I might end up getting one by the end of the year so I have a lot of time to think about so I'm probing as many people as I can.
Posted 2/13/2014 3:49 AM (GMT 0)
yeah if it ends up being Crohn's they won't touch my colon as far as removal. I'm going to ask my doc to contact the surgeon about the pathology. I would hope they did...he has a pretty good team that does a lot of pathology work. When I had my temp ileo I had little to no problems at all other than an occasional leak with my bag here and there. The stoma was perfect and never gave me any issues. Yeah my sister has had her J Pouch for 17 years now and has NEVER seen a doctor since then. She said she uses the bathroom more frequently but she has full control of it. She doesn't take one medication anymore. She did have hers done in two steps and she said the second surgery was much tougher than her first one. She had a lot of bad vomiting issues initially with the bile...she didn't have an NG Tube.
Posted 2/13/2014 7:58 AM (GMT 0)
Yea hopefully they can square you away pretty quickly, especially after all you've been through to continue having problems. They should've been more proactive with your care. These diseases are so unfortunate but at least the upside to UC is that it is "cure able".

That's really reassuring about your sister. I've heard a bunch of success stories and a few that weren't so successful but overall it seems good. I just sometimes question the longevity of it but I think most people have them removed over complications and not because the pouch "died" or something.

Thanks again for sharing. Keep us posted on the pathology, it should've been done. Good luck!
Posted 2/13/2014 2:31 PM (GMT 0)
Here's what it says on my colonoscopy report from this week...

"Active universal ulcerative colitis with loss of mucosal vascular markings, granularity and friability. No deep ulcers, mainly erosioins - no skip areas"

that's what it says below all the photos that were taken. He also got a small stool sample which he sent for a C-Diff test even though I've done two stool tests over the last couple weeks. We're hoping it's that. I'm guessing the reason I'm not seeing any bleeding is due to no deep ulcers. As I mentioned before the majority of my colon has always been clear except for the part they removed. This is new inflammation to my usually clean colon and it's just starting to damage it.
Posted 2/13/2014 2:32 PM (GMT 0)
also...

"multiple biopsies taken from the cecum, ascending colon, 60cm from the entry site and sigmoid"

"Colitis found in the rectum"

"stool aspirate sent"
Posted 2/13/2014 2:52 PM (GMT 0)
sounds like you have UC (if the cliff check clear). the "no skip areas" is a huge indication. Also, if when you had your loop ileo you didn't experience any inflammation thats an indication of UC as well. Since it came back after the resection that also kind of of cements it as once you have UC in any part of your colon the whole colon is affected. Again, the pathology report of the sections area is still going to be your best bet. Let us know.
Posted 2/13/2014 3:06 PM (GMT 0)
here's the issues I had when I had my ileo. I had issues where I was passing a lot of mucus during the day and I mean a lot. The surgeon felt I had "diversion colitis". I had gotten a remicade infusion during the time I had my ileo and it completely calmed down the mucus issue I was having. There were occasions I would see bleeding during that time as well. The day I got my remicade, by the afternoon those symptoms had calmed down and by the next day they were gone.
Posted 2/13/2014 4:20 PM (GMT 0)
ohhhhh okay...Yea i don't really know bud. Hopefully the pathology will give you something more definitive. Keep us posted.
Posted 2/13/2014 4:26 PM (GMT 0)
Diversion colitis isn't a sign of UC or Crohn's or anything else. Even without IBD you can develop diversion colitis. It's just a sign that the fecal stream has been diverted.

Good luck Gordon, hope you get some relief soon.
Posted 2/13/2014 6:39 PM (GMT 0)
after the surgeon saw that the remicade worked like it did he felt it wasn't diversion colitis after all.

I'm about ready to return to exercising...being on heavy steroids since august has made a lovely steroid gut...gotta love prednisone weight gain
Posted 2/18/2014 1:58 PM (GMT 0)
well I met with my GI yesterday for a followup after my colonoscopy. We got my prometheus blood test results back and I have no antibodies, the remicade is working fine in my body, it's just not working it seems now to control the inflammation. He's put me back up to 125mg of 6mp and has me decreasing my prednisone. He presented my case last night to other doctors and I'm to call on Thursday to find out what they said. He also may send me to the University of Miami to see a doctor there for a second opinion. He wants my inflammation under control. He's put me on short term vicodin treatment to slow down my loose bowel movements as nothing else seems to be working. I take half to 1 pill every 6 hours. I know after surgery they plugged me up pretty good. He's still looking for one stool sample result he took during the scope. We're praying for C-Diff.
Posted 2/21/2014 12:49 AM (GMT 0)
my nurse called today, he had presented my case and the overall majority agree to proceed with my current treatment of the increased 6MP, remicade and decrease my prednisone. There was a mishandling of the stool sample they took during my scope and for whatever reason they didn't do the C-Diff test on it. He's going to see me after a month and if I have no improvement he's going to put me on the new drug vedolizumab and stop my remicade since it doesn't seem to be working at the moment. I'm due for another infusion next week.
Posted 2/22/2014 8:26 PM (GMT 0)
well, I will say the short term vicodin treatment he put me on has officially slowed down my bowel movements to 1-3 times a day compared to 5-10. It's a temporary fix but it has given me some relief. now that they've kicked in and slowed things down I'll be stopping or taking half a pill a day till they're gone.
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