Should I have Surgery

[hayhay27]

Hi I am new to the site but have had crohns for 8 years started at the age of 22! I had a rocky start and was really ill for almost 5 years. I tried all sorts of medication but nothing worked I some how got through my nurse training and bought a house before things went from bad to worse. I finally made the decision to stop all medication and go it alone and have since controlled the disease with diet only.i have a beautiful baby girl now who's 18 months old and the pregnancy was normal I never felt so well but Only 6 months ago did I have some pain but nothing like what I had experienced in the begining. I was given a weeks worth of steroids by my gp and re refered to my gastroenanlogis who sent me for a MRI scan. This has showed a 8cm narrowing of scar tissue in my terminal ileum and they want to remove this. I have suffered with constipation for 3 years which would explain why. The surgeon didn't expect me to be feeling to well with what the scan showed but as I said before I feel pretty great. I have been refered for removal of this hopefully laparoscopic with a possible change of stoma bag but won't know until I wake up!my concern Is how I will be after this op and is it worth it if I im not having any problems now! My life is on hold now as waiting for the elective surgery could me months and really want to try for another baby but have been told to put this on hold as if I get a obstuction whilst pregnant could be catastrophic! I totally understand the reason for doing the surgery whilst I'm fit and well, but most of the posts on here and other sites seem like those people are unwell and suffering before hand. has anyone been in the same situation and can give me advice pleaseeeee! Worrying my self and family to death. Thank you

 

[David]

Hi there and welcome to the community.

1. Unfortunately, your disease wasn't controlled by diet, there was smoldering inflammation that ended up causing your narrowing

2. If the narrowing of your intestine is due to scar tissue, there is nothing that can be done except removal. Blockages are very real threat and life threatening. As such, if the narrowing is due to scar tissue and not inflammation, yes I would have the surgery.

All my best to you.

 

[alex_chris]

This has showed a 8cm narrowing of scar tissue in my terminal ileum and they want to remove this. I have suffered with constipation for 3 years which would explain why. The surgeon didn't expect me to be feeling to well with what the scan showed but as I said before I feel pretty great. I have been refered for removal of this hopefully laparoscopic with a possible change of stoma bag but won't know until I wake up!my concern Is how I will be after this op and is it worth it if I im not having any problems now! ... has anyone been in the same situation and can give me advice pleaseeeee! Worrying my self and family to death. Thank you

Hi there, and sorry you are worrying so much about this.

The narrowing that happened due to inflammation over many years will not go away by itself. Not sure where in the terminal ileum it is, but most likely (was the same in my case), it is somewhere in the last 2 feets of smaller intestine before the valve that leads to the larger intestine. At this position, the only option for removing it, is surgery. It won't go away by itself either.

While you can live with a narrowing for many years and feel good, the question is how good you really feel (as in 100% without symptoms or only "sort of" good). Secondly, there is a question of what happens if you get into a bad flare with lots of inflammation that may lead to a blockage and emergency surgery. This is not that likely, but a possibility still. The discussion back in 2003 my surgeon and my GI had with me when making the decision in a very similar case was - a. the surgeon said not to do the OP and try a better drugs management first vs. b. my GI said I won't get better without the surgery and with the narrowings removed I would be able to concentrate much more on a good lifestyle. They also tried to remove the strictures first through the laparoscopic approach, but, as you cannot always see everything perfectly through external diagnostics, the damage was more extensive and they had to also open up my belly on the front. The valve wasn't removed, which was positive, but 60cm of intestine had to be removed and a stricturplasty made. My surgeon, who had been skeptically before, back then said it was the right decision. There was also no temporary bag.

I have to admit, at first I was skeptical if it really was the right decision, but looking back after 12 years it was. I am sure in those 12 years, which haven't been always completely smooth, some additional inflammation has done some damage, but no actual narrowings are showing up. There is a chance for Crohn's patients requiring a second or even multiple surgeries, but the likelihood that only one surgery in a lifetime is required, is still quite good.

Having said all that, it all depends on how severe that narrowing of yours is, if you really feel perfect and whether you rather take the plunge into surgery now or later. But it is likely you will have to eventually remove that scarred tissue.

Hope this helps and best luck to you.