Temporary Illeostomy and no active Crohns

[gracifer]

Not entirely sure if I have this in the right sub section so apologies if not.
Basically I had the results of my MRI back the other day, and I was told that I don't have any active Crohns atm. Within the same breath he told me that there was an 80-90% chance of it returning within the first year when it reversed (thanks mate, really wanted to hear that!!) I have been advised, that after the op, I should go on azathioprine to prevent it and because I want to start an MA the stress from that could bring it back.

Now I know none of you have any crystal ball, but what I want to know however is do I not have 'active' Crohns right now because I have the bag? He said he wasn't going to call it remission until that first year was up...

 

[Pointy_ears]

Not sure it's the right forum, but as this is playing on your mind I thought I'd chime in with an answer. I've just had a reversal and at no point have any surgeons or GI's or doctors told me the percentage chance of crohns rearing it's ugly head after the reversal.

I have been told that Crohns can and often does come back after a reversal but this can take years it's not like its suddenly just going to happen over night. I currently take azathioprine to maintain remission and my GI believes this should be enough to maintain remission for a few years.

That being said crohns can occur anywhere along the digestive tract from mouth to anus and as such it may come back whether you have the bag or not! You don't have active crohns at the moment because the diseased portion of bowel was removed.

Your doctor has been correct in saying that stress can be a trigger for crohns, it is usually best for us crohnies to avoid stress or minimise it where possible.

The best thing you can do right now is get as much information about all your options as possible so you can have a good quality and informed discussion with your GI and surgeons before going back under the knife. Also don't be afraid to ask for a second opinion, if you disagree with what you are told or feel you need a check or balance for what you have been told you have a right to a second opinion before starting any treatment.

I don't know if this was the answer you were hoping for but maybe it'll at least help you think about what you want or need to discuss with your doctors. If you want to discuss anything further or have any questions please don't hesitate to ask.

 

[annawato]

Thats a very difficult question. Firstly where was your crohn's? If you tend to get it in the small intestine then a stoma will not necessarily prevent it from returning since this area is not being rested. If your disease tends to be downstream from the stoma then the stoma is probably helping since nothing is flowing thru and so irritating this area. Temporary stomas are usually to allow the join from a resection to heal or to rest an area such as the rectum if disease there is not responding to medication. I can't remember, was your stoma to rest the area after a resection?
Secondly if there are drugs available to help with your crohn's then its probably worth getting rid of the stoma and hope for the best, but of course there are no guarantees. I had a stoma for a year in 2010/2011 and got rid of it only to have the disease come back with a vengeance,but thats cos no drugs are working for me or I've had bad reactions to them so I am probably unusual. Consequently I now have another stoma and had to have another resection etc.
Are you on any crohn's meds now? Or are you in "remission" cos the bad bits have been cut out? I would think it might be good to start on crohn's meds before being reversed but of course your doctor may have reasons not to - he may well think you don't need them at the moment.

 

[elrafantas]

Hi gracifer
I also had no active Crohn's whilst I had the temporary stoma. It has been 6 months since my reversal and I can't tell if my Crohn's is back or if it's still my intestines adjusting to everything. It seems like a flare to me, slowly getting worse not better! I'm waiting for an MRI scan and colonoscopy next month and if there's active Crohn's I'm going back on infliximab. I think it's good to go back on meds asap for maintenance regardless! My surgeon disagreed when I said this after my reversal - "your last MRI showed no active Crohn's so you don't need any meds, your body just needs to adjust" - hmmmmmm.....
If you're offered azathioprine after the op, I'd snap it up xxx

 

[gracifer]

Pointyears; - so your on aza to maintain the remission that you're in? It's nice to know you've been told that! Where you on the aza before or was it after the op that you started taking it? My parents keep asking me, how do you know whether you're in remission when you're taking drugs to maintain it? But at the same time I'd rather be on aza and limit the potential to it coming back.

Anna - My crohn's was in my terminal ileum but had several fistula's, one off which went from bowel to stomach wall :/ Yes the stoma was there to rest the area after the resection. Currently on no meds, as the doctors saw little point when I was in hospital - as before I went in I was on Pentasa which was obviously doing nothing for me - and thus nothing was really done about medication whilst an inpatient, and yeah I personally believe i'm in 'remission' due to the fact the bad bits have been cut out and as of yet not been put together again. The guy I saw last week just said that this was potentially the case!

elra - yeah this is what i'm thinking. I would rather just help my body then just leave it to do it's own thing, though not being on drugs is amazing, at the same time I think I would worry it would come back if I just left it to it's own devices..

 

[Pointy_ears]

Hey! Sorry it's taken me so long to reply I've been busy with my daughter over the weekend. I hope your still feeling well.

My surgeon Prof Morton had removed all the diseased portions of bowel in the terminal ileum as I had fistulated to the bladder. He said in his professional opinion I was in clinical remission if no active crohns or inflammation was shown after 8 weeks post op.

A referral was made for the gastro team to review me before I went home from the hospital, due to how aggressive my Crohns was at the time of my op it was decided to continue azathioprine treatment to maintain remission.

My case is unusual as my crohns until that point had been very mild, it is believed the flare was caused by stress, smoking and poor management of my condition by the gastro doctors at redditch. I have been told that I would have needed far less invasive action should my doctors have taken quicker and more decisive action.

I hope your reversal goes well and doesn't stress you too much! If you need anything feel free to drop me a message

 

[Jaano711]

Hi Gracifier,
Well thats just great that your surgeon has you stressing about a flare before you even have the reversal. I am in a bit of a different category. I have a permanent stoma as 'my undercarriage' was totally wrecked by fistulising disease. Previous to this last surgery I have had 4 other bowel resections including an extended right hemicolectomy removing terminal ileum and most of my large bowel. The next 3 resections were for recurring crohns at the anastamosis sites causing stricturing, and in the last resection I had a pin hole stricture in my small bowel that had led to the upper section creating a fistula so that everything just went round. Surprisingly at the time of my panproctocolectomy most of my remaining intestine seemed in 'good shape' However, I have been kept on humira and azathioprine to help maintain my remaining innards. I think you need to have another visit to your GI and ask him what he suggests to keep you in remission and what are the options for your ongoing treatment.
Good luck and let us know how you get on.
Cheers Janette