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Can crohns return

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Crohn's Disease
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Posted 6/9/2015 8:34 AM (GMT 0)
I'm looking for a bit of advice as I was caught on the hop in the hospital recently when I saw my surgeon and my mind went blank.
Trying to keep it brief I had a toxic mega colon removed in 2012 and was told it was crohns , several complications later I was left with a enterocutaneous fistula on the torso and an ileo , I had the ileo reset and the fistula corrected in January this year.
After the op the surgeon said I didn't have crohns anymore as my small bowel was clean and showed no signs , my question is can it come back in the small bowel and what are the chances , also is there anything I can do to help prevent this.
I must say since a couple of months after the op I've been feeling like a new man
Posted 6/9/2015 1:31 PM (GMT 0)
Unfortunately, surgery is not a cure for Crohn's, but it might get you a good long remission. It is not possible to say when or if your disease will come back.

Glad you are feeling well!
Posted 6/9/2015 1:39 PM (GMT 0)
After my re-section surgery, the surgeon came in my hospital room to visit and said "you don't have Crohn's anymore." I corrected him and said "You mean it is in remission." I found his comment quite irritating. You should see your GI doc and ask if s/he wants you on any preventative medication now. They base those decisions on severity of your disease and other factors. I think from what I've read Crohn's generally returns at some point, but hopefully you will have a nice long remission. Glad to hear you are feeling well!
Posted 6/9/2015 2:09 PM (GMT 0)
Thanks for the answers , the thing I can't quite get is I've never had any disease in my small bowel only my colon which was removed in 2012.
The reason for my latest surgery was to remove the rectum which I was told was to prevent future cancer in it and to correct the fistula , I think he just tidied up the ileo at the same time.
I don't have a GI doc as they wouldn't entertain me for the likes of inflixomab due to the fistula which couldn't be cured other than through surgery and an abscess that the drugs could have an adverse effect on so the last few years have been tough to say the least.
I'm maybe looking for some comfort that does not actually exist . Healthy living and eating it is then until I see the surgeon again in 5 months time.
Posted 6/9/2015 3:38 PM (GMT 0)
Hi Schuco,

I'm sorry for what you've been through with your IBD!! It's unfortunate your surgeon would say you didn't have CD anymore after removing your colon since CD can affect any part of the GI tract from mouth to anus. Unless they misdiagnosed you and you actually had ulcerative colitis (removal of the colon and rectum for UC generally means UC will no longer affect one's colon/rectum due to removal but they can still have extra-intestinal manifestations from their UC even with their removal of both affected areas since UC is limited to the colon/rectum but can sometimes even get "backwash UC affecting the very last part of the small intestine that joins the colon).

With CD, having your colon and rectum removed unfortunately doesn't remove the risk that at some point (generally for many, around 5 yrs later) CD may very well likely start affecting the small intestine because that is typically the nature of CD (not with UC). With CD it can affect more than one area at a time including any parts of the GI tract from mouth to anus.

I urge you to discuss this concern with the surgeon in 5 months and ask what the pattern of inflammation was in your colon, with CD it's patchy inflammation and can go through the many layers of the intestinal lining, with UC the inflammation is not patchy but also does not affect any layers other than the surface of the intestinal lining. There's also the fistula, although it's more common to occur for CDers, UCers can also have fistula issues as well. I'd ask for clarification of which IBD you actually have and discuss the chances of CD returning to affect your small intestines.
Posted 6/9/2015 3:46 PM (GMT 0)

schuco said...
Thanks for the answers , the thing I can't quite get is I've never had any disease in my small bowel only my colon which was removed in 2012.

How long did you have the Crohn's colitis for before surgery? Length of time makes some difference here. If you have had it for 20 years without a single sign of small bowel disease, that makes it a lot more likely it won't come back than if you only had it for 2 months.

Nothing can be absolutely guaranteed. There are people with UC who appeared to have every sign of only having UC before the operation only to develop Crohn's afterwards. That is quite rare, though.
Posted 6/9/2015 4:04 PM (GMT 0)
I have Crohn's colitis, or I did until they removed my anus, rectum, and the latter portion of my colon. I have a colostomy. I got three years of full remission out of the surgery and then the disease came back. I switched to Simponi and have been back in remission. Unfortunately, just because the diseased portions of bowel are gone, doesn't mean Crohn's is gone. I hope you get a long remission!
Posted 6/9/2015 4:32 PM (GMT 0)
NiceCupOfTea
Thanks for the reply , that's the strange thing with myself as I never had any gut problems until this happened , I had extreme diarrhoea for around two months and was awaiting a colonoscopy when I became very ill and was admitted to hospital where they discovered my colon had perforated was basically rotten and needing taken out. They said due to the state of my colon they could only say 'probable' crohns then with the sore joints and other issues they said crohns a bit later.
My father has suffered from UC since his early thirties and I was 38 when this all kicked off , I'm glad things have taken a turn for the better at last but this is at the back of my mind.
Looking at pb4's post and the CD going through layers I suppose that sounds like me as well as with the fistula.
From what I had read of CD it's something that's with you forever with periods of remission which was why the surgeon surprised me.
Posted 6/9/2015 5:02 PM (GMT 0)

NiceCupOfTea said...


Nothing can be absolutely guaranteed. There are people with UC who appeared to have every sign of only having UC before the operation only to develop Crohn's afterwards. That is quite rare, though.

It's highly unlikely that those people "developed CD afterwards" it doesn't work that way, what can happen is one patient can have BOTH UC and CD but that's the rarity of 2% approximately, very different from what you wrote. Or more likely as in many cases, the patient actually had CD to begin with but was told they had UC, they get their colon/rectum removed and find out later when their CD ends up affecting their small intestine, meaning they had CD all along and were misDX.
Posted 6/9/2015 10:27 PM (GMT 0)

pb4 said...
It's highly unlikely that those people "developed CD afterwards" it doesn't work that way, what can happen is one patient can have BOTH UC and CD but that's the rarity of 2% approximately, very different from what you wrote. Or more likely as in many cases, the patient actually had CD to begin with but was told they had UC, they get their colon/rectum removed and find out later when their CD ends up affecting their small intestine, meaning they had CD all along and were misDX.

It's not highly unlikely. There's about a 5% chance of being diagnosed with Crohn's after having a j-pouch.

ibdcrohns.about.com/od/pelvicpouch/fl/How-Likely-Is-Crohns-Disease-After-J-Pouch-Surgery.htm

So it does work that way sometimes.

schuco said...
NiceCupOfTea
Thanks for the reply , that's the strange thing with myself as I never had any gut problems until this happened , I had extreme diarrhoea for around two months and was awaiting a colonoscopy when I became very ill and was admitted to hospital where they discovered my colon had perforated was basically rotten and needing taken out. They said due to the state of my colon they could only say 'probable' crohns then with the sore joints and other issues they said crohns a bit later.
My father has suffered from UC since his early thirties and I was 38 when this all kicked off , I'm glad things have taken a turn for the better at last but this is at the back of my mind.
Looking at pb4's post and the CD going through layers I suppose that sounds like me as well as with the fistula.
From what I had read of CD it's something that's with you forever with periods of remission which was why the surgeon surprised me.

That sounds like your Crohn's colitis came on very fast and acutely. Your surgeon should definitely not have told you don't have Crohn's anymore :/ That said, having an ileostomy gives you a protective effect: the Crohn's is less likely to return with an ileostomy than if you were to be reconnected (can you even be reconnected or was your rectum taken out as well?)

However, I do think with your history of Crohn's colitis coming on suddenly, you need to be aware that the same thing could happen with your small bowel. It's probably not very likely, and hopefully it won't happen, but it's a possibility. If symptoms do start up again get them checked out quickly. A healthy, low-sugar diet and prophylactic medication may maintain your remission for longer. If you do decide to take prophylactic medication, don't waste your time with Pentasa: go on an immunesuppressant like 6MP or azathioprine instead.

Me, I have an ileostomy and have gone the unhealthy diet/no med route >_>. My Crohn's got worse over a period of years rather than months, though; therefore I'm banking on it also slowly getting worse in the small intestine, which will give me plenty of time to get on meds, etc. I've been in remission for two and a half years.
Posted 6/10/2015 8:22 AM (GMT 0)
NiceCupOfTea
Unfortunately my rectum was removed earlier this year but maybe that's a good thing after reading your post. I shall enquire about the meds you mentioned when I see my surgeon later in the year to hear his thoughts.
I am glad to hear that you have been in remission for that long as things can certainly be pretty bad with CD and long may it continue.
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