Had total colectomy doctor said crohns was not in my small but will it return there

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pombear
Regular Member


Date Joined Feb 2018
Total Posts : 73
   Posted 2/10/2018 10:09 AM (GMT -6)   
In september i had emergency surgery all my colon was removed because it ruptured,,so i have a ileostomy now which im not sure can be reversed anyway they told me at the time i had ulcerative colitis but pathology on the removed colon shows in favour of crohns so i take it i have crohns, it was in my rectum as well but they didnt take that out, im not sure if they will do another surgery to take that out one day im seeing my surgeon soon but im not sure if i want them to take my rectum as it isnt causing problems at the mo really and noone wants more major surgery and i have read its even more tricky surgery then taking just the colon

but my question is about is it likely that i will develop crohns in my small intestine one day , because my gi told me it was not in my small and that normally it follows a pattern an dosent change so he made me think it is unlikely to return in my small,, has anyone had what iv had and it hasnt come back in the small or any other place.?

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10555
   Posted 2/10/2018 12:25 PM (GMT -6)   
Your GI is right. Crohn's does tend to follow a pattern and it does tend to re-appear at the same spots. So if you've had Crohn's colitis for years without any small bowel involvement, it is probably unlikely you will develop small bowel disease in the future. However, that said, there aren't any guarantees. Some people are just unlucky. Hopefully you won't be one of them but there is always that possibility you are and the Crohn's returns.

It's a good idea to get your rectum removed eventually, if you have no intention of being reconnected. There's no rush, but a defunct rectum does more than just sit there and gather dust - it can develop diversion colitis or Crohn's and, in the long term, is a cancer risk. If you start developing urgency and passing mucus or blood, your rectum is almost certainly inflamed. You can treat it the same way you would normal proctitis: with mesalazine or steroid suppositories.

I had a colectomy five years ago, but like you my rectum was left. It was fine for a few months but eventually I started developing symptoms of diversion colitis, i.e. urgency and daily passing of mucus and occasional blood. I had a flex sig where biopsies were taken and I was told it wasn't Crohn's. Partly on that information I had a reversal, but it was bollocks: the Crohn's returned almost straight away. I would probably have elected to have stayed with the ileo if I knew what I knew now, but I'm not in dire straits so I'm carrying on as I am for the time being. If I do go back to having an ileostomy again, though, my rectum is coming out as well. I've had enough of problems in that area to last me a lifetime.

As for small bowel disease, I've always had that so the fact it's come back in my small bowel as well as my rectum isn't a surprise really. At least it's in a relatively small area :-/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

pombear
Regular Member


Date Joined Feb 2018
Total Posts : 73
   Posted 2/10/2018 2:09 PM (GMT -6)   
Hi thanks for your reply , Well i dont know how long i had crohns for i think it must have been afew years maybe as i had some occasional symptoms for a few years which i never got tested out for,, but just a few months before my sudden surgery i was tested with colonoscopy and mri which they found nothing wrong apparently,,, then 3 months later im in hospital on steroids first time ever being told i have ulcerative colitis an then suddenly the pain got terribly worse an i had to go to surgery an have the whole thing removed , i was in so much pain i said i dont care about having the bag,, but it was very depressing for awhile after i hated it so much but now i am more used to it,,i think ill probably stick with it as i am scared about it making crohns flare up again,, im so hoping i wont get it come to my small bowel ,, this is the worse thing though wondering if ill get ill again , its such a confusing and horrible disease , i feel i would ratger not live if crohns comes back as i dont want to be ill and on medications that have horrible side effects for rest of my life,, its so depressing to think it might come back but know nothing i can probably do to stop it

pombear
Regular Member


Date Joined Feb 2018
Total Posts : 73
   Posted 2/10/2018 2:12 PM (GMT -6)   
Do you know if having my rectum removed could trigger crohns ? i dont like to keep it really but more surgery is not a nice thought and as i have been told by my gi that reconnecting things could make my crohns come back im thinking is any operation to the bowels a risk for crohns coming back,, my ileostomy needs redoing as it has a hole in it which isnt meant ot be there

pombear
Regular Member


Date Joined Feb 2018
Total Posts : 73
   Posted 2/10/2018 2:23 PM (GMT -6)   
And also i forgot this,, my stoma nurse told me my stoma looks crohnie,,, i asked do you mean its diseased? she said no but it looks like a crohns one,, dose this mean it is in my small intestine,, i dont trust mri or trust doctors tests because last time they came back normal

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 313
   Posted 2/10/2018 8:48 PM (GMT -6)   
I have the same issues as you, I had to have surgery on the 27th, it was supposed to be j pouch but they are still unsure whether it’s crohns or UC, so I think I am just sticking with a permanent ileostomy, I too am kinda scared to get the rectum part removed, I don’t want it to mess anything up, my doctor told me I didn’t have to decide now though that I could wait as long as it’s checked for cancer. As for the nurse saying that your stoma looks “crohnie” I’m pretty sure everyone’s aromas are different and that she maybe has another patient with Crohn’s that has a similar looking one to yours? I am not sure about that!
Dx with severe pancolitis with appearance of Crohn’s at 7 but actually had it whole life
After failing humira and not responding to IV steroids had to get my colon removed on January 27, 2018!! Still deciding on permanent or j pouch #nocolonstillrollin

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10555
   Posted 2/11/2018 9:20 AM (GMT -6)   
No, having the rectum removed won't trigger Crohn's. You're not joining it to anything, so there is nothing to trigger.

I dunno what your stoma nurse means by a stoma that looks like a Crohn's stoma - all stomas look roughly the same. I presume she's referring to the hole, which could be a fistula or a separation of the stoma from the skin. I would ask the colorectal surgeon to explain what the hole is and why your ileostomy needs re-doing. But stomas can develop mechanical complications that have nothing to do with Crohn's.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1565
   Posted 2/12/2018 9:37 PM (GMT -6)   
I have Crohns Colitis, diagnosis at one time UC, confirmed Crohns from pathology after my resection. I never had disease in my small bowel in the 18 years prior to surgery. Because of that my GI has me on no medication. My rectum was severely diseased, plus I had a rectovaginal fistula so my surgeon took out my rectum at the same time as my colon.

I was really worried about that part of the surgery. It wasnt nearly as bad as I thought t it would be. I have had some minor issues with sex post surgery, but from what my surgeon told me, part of that might be from the vaginal fistula repair not because of the rectum removal.

I also I have no idea what your stoma nurse meant by crohnie stoma.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

pombear
Regular Member


Date Joined Feb 2018
Total Posts : 73
   Posted 2/20/2018 7:23 AM (GMT -6)   
cupcakespinkgal said...
I have Crohns Colitis, diagnosis at one time UC, confirmed Crohns from pathology after my resection. I never had disease in my small bowel in the 18 years prior to surgery. Because of that my GI has me on no medication. My rectum was severely diseased, plus I had a rectovaginal fistula so my surgeon took out my rectum at the same time as my colon.

I was really worried about that part of the surgery. It wasnt nearly as bad as I thought t it would be. I have had some minor issues with sex post surgery, but from what my surgeon told me, part of that might be from the vaginal fistula repair not because of the rectum removal.

I also I have no idea what your stoma nurse meant by crohnie stoma.


Hay my GI also has not given me any medication,, but do you worry about not being on anything as i have just read many posts on here from many different ppl saying you should be on meds to stop it coming back,, but iv never tried those meds so i dont know how bad they are to take,, im thinkin i should ask my gi if i should take somethin but have a feeling he will say no but then it is worrying it could come back again just as badly as last time ,, it could come back out of the blue again

pombear
Regular Member


Date Joined Feb 2018
Total Posts : 73
   Posted 2/20/2018 7:27 AM (GMT -6)   
NiceCupOfTea said...
No, having the rectum removed won't trigger Crohn's. You're not joining it to anything, so there is nothing to trigger.

I dunno what your stoma nurse means by a stoma that looks like a Crohn's stoma - all stomas look roughly the same. I presume she's referring to the hole, which could be a fistula or a separation of the stoma from the skin. I would ask the colorectal surgeon to explain what the hole is and why your ileostomy needs re-doing. But stomas can develop mechanical complications that have nothing to do with Crohn's.


last time i told the surgeon about the hole he didnt believe me,, this time im hoping my stoma nurse will be at the appt i have later today to explain it to him ,, its so stressful i am worrying i have crohns again but maybe all this extra gas an noisy tummy an extra output is because im stressed,, i have to ask the surgeon about this but i dont suppose he will know as he is just a surgeon

pombear
Regular Member


Date Joined Feb 2018
Total Posts : 73
   Posted 2/20/2018 7:37 AM (GMT -6)   
Mak37 said...
I have the same issues as you, I had to have surgery on the 27th, it was supposed to be j pouch but they are still unsure whether it’s crohns or UC, so I think I am just sticking with a permanent ileostomy, I too am kinda scared to get the rectum part removed, I don’t want it to mess anything up, my doctor told me I didn’t have to decide now though that I could wait as long as it’s checked for cancer. As for the nurse saying that your stoma looks “crohnie” I’m pretty sure everyone’s aromas are different and that she maybe has another patient with Crohn’s that has a similar looking one to yours? I am not sure about that!


Hay o thats good you dont have to decide now,, i though cant stick with the rectum if i dont have a reversal because hes attached that to my stomach as a second stoma an its quite painful at times an so if i dont get the reversal which i most likely wont be allowed anyway ill have to get rectum taken out as i hate having the non functioning stoma more then the main one
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