Looks like Crohn's really is an infectious disease

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NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 3/22/2010 7:27 PM (GMT -7)   
So, I have UC/CD in my colon. I had an ileostomy and now I am off all CDmedications! I have no pain. Who would have guessed. I have been off meds before and things were hurting so bad. Looks like bacteria in the stools does cause the inflammation. Thought I would share. I am only on Primaxin, Casofungin...and.....um Amacasin or something to treat 3 types of bacteria.
27m - Dx January 2005: UC/Crohn's
Humira, Entocort 9 mg, Asacol 4 x 3, Flagyl 250 mg x 3
Imuran failed

CD/UC story: I took Cipro. Then, I had diarrhea. It felt like my whole colon was burned. It eventually got extremely painful to even have a bowel movement when only one drop of blood was passed. I was diagnosed with c diff. Took Vancomycin and the blood stopped. Diarrhea persisted. Colonoscopy was done and CD/UC was found. Cipro, I hate you and the doctor who put me on it for an "ear infection."


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 3/22/2010 7:38 PM (GMT -7)   
Sorry, but correlation does not imply causation.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 3/22/2010 7:58 PM (GMT -7)   
If you still have your colon the disease is probably still there:( Have you had a scope? If not, you'll want to keep on a schedule set up by your doc.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/22/2010 8:16 PM (GMT -7)   
To clarify things for you Nostra....UC can be "cured" when the colon/rectom are removed, with CD, having the colon/rectom removed is not a "cure" since with CD it can affect any part of your GI tract from mouth to anus...if you have CD, then expect the CD to re-appear at some point somewhere in your GI tract (that wasn't removed), if you have UC, then because UC is limited to the colon/rectom, having those removed means UC can not come back.
 
Your experiance (with being disease free due to surgery) does not confirm that CD is infectious....neither is UC.

:)


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


chatter
Regular Member


Date Joined Oct 2009
Total Posts : 51
   Posted 3/22/2010 8:38 PM (GMT -7)   
Hi everyone,
This is my first time on the CD site. I was diagnose with UC 28yrs ago and after 12 terrible years i had a total colectomy and ileo-anal pouch. As with UC this should have then cured my UC. It didnt and i spent the next 2 years having terrible trouble with my pouch and kidneys etc. There then followed a further 13yrs of trouble, sometimes worse than others. Finally after 2 further surgeries for small bowel obstructions and regular sub-acute bowel obstructions, they have now told me that i have granulomas in my pouch and very likely have CD. What a bummer, literally!
I knew things could not have been right but i guess you can get used to anything if you have it long enough. My first thought when they said CD was real disapointment, but then i realised that i have probably had it for the last 28yrs anyway and i will just get on with it.
What i am hoping for is that a change of medication may help with the 'flare ups' and the continuing joint pains. Has anyone else been in a similar situation- diagnosed with UC for many years then to be told that it could be CD after all? Sorry this is so long winded but 28yrs is a long time without much opportunity to talk to someone about it. Hope to hear lots of views and experiences if folks don't mind.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/23/2010 1:16 AM (GMT -7)   
Nostrahistoria
PB4 is exactly right about the Crohn's disease coming back. You wrote that you have cd/uc which does not really make sense so I am asking for a clarification please. Do you have ulcerative colitis? Do you have Crohn's colitis? If you have ulcerative colitis then you do not have Crohn's disease. If you have Crohn's colitis then you still have Crohn's disease which is not an infectious disease and has not cure and will return. If you have Crohn's disease you may be experiencing remission and hopefully it lasts a long long long time for you but it is still there. If you have ulcerative colitis, a separate disease, you can be cured by having your colon and rectum removed.
Chatter, I am sorry that you have Crohn's disease and you are right in assuming that you had Crohn's all along. In the past many people were misdiagnosed with Ulcerative Colitis or just given a Colitis diagnosis and went to surgery fairly fast to remove the colon. I had 2 people in my family who had the same thing and it later turned out that they both had Crohn's disease. There are a couple of others on here that have gone through the same experience that you did and would be good to ask questions. Although this is a life long disease, it is not the end of the world and you already have a great attitude with it.

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 3/23/2010 5:20 AM (GMT -7)   
chatter....my sister was dx'd with UC and is just now being changed to a dx of CD. From what I have heard from many people on here and in my CCFA support group, it seems to happen often. I also have a friend from the support group that had similar situation to you. I think she has said she was happy that she was dx'd as UC originally or they would not have done the surgery she had which has limited her symptoms currently and means medication to mediate future symptoms of the CD.
Best of luck to you
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


chatter
Regular Member


Date Joined Oct 2009
Total Posts : 51
   Posted 3/23/2010 7:19 AM (GMT -7)   
thanks to tsitodawg and HabsHockeyfan for your comments. in a strange way, being diagnosed with CD may in the end be a bit of a veiled gift. I know that sounds strange but i have had something more than UC for all those years which continued even after major surgery. Perhaps now there may be some relief from the ongoing symptoms i have been having and accepting as 'just the way things are', so at least there is a change of focus and a bit of hope.
I am due to have a scope next month and i think they also plan to do a white cell uptake and barium meal after that, i really hope that they can change my medication and make life more comfortable, i will be happy with that.
Thanks for your support, i feel much better now.

exit 4
Regular Member


Date Joined Apr 2009
Total Posts : 148
   Posted 3/23/2010 6:41 PM (GMT -7)   
I was told for 15 years that I have UC only. My symtpoms were very mild - lower left pain, rare DRia and mucus. Not until I had fistula removed via surgery-fistulatomy and it's not healing well after 4 months  I was tested for CD. And even then it was not 100% dx - camera pill showed nothing, blood work was non concusive... Gong to try remicade now.redface
Male, 45; UC 15 years, Lexapro helped with stress and UC.

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