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Anyone Surgery free w/ disease in terminal Ileum?

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Crohn's Disease
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Posted 8/15/2017 2:42 PM (GMT -7)
Just curious how many have the disease in the terminal Ileum and are still surgery free? have just been stressing on what the future can hold and the fear of so many things that could go wrong or end up with SBS. Trying to overcome all the fears I guess.
Thanks

Malinda
Crohns Disease 2012
Current Meds Prednisone taper
Lialda
Posted 8/15/2017 3:07 PM (GMT -7)
In this day and age, you'll very likely find quite a lot of Crohn's patients that have been able to avoid surgery. With the new treatment meds available, the disease is able to be controlled much more successfully than a decade or two ago.

It certainly doesn't mean that surgery is obsolete by any means though.
Posted 8/15/2017 3:46 PM (GMT -7)
Many people with mild disease (approximately 20-30% of the overall Crohn's population historically) have never needed surgery. And as 73monte points out, that figure will probably be even better as newer treatments have come out the last 10-15 years.

But needing a resection of the terminal ileum is still a long, long way from a person having SBS.

If you are really concerned about the possibility of surgery, and your disease isn't well-controlled, you should look into proper medication treatments. Prednisone and Lialda are not proper treatments for Crohn's disease.
Posted 8/15/2017 3:47 PM (GMT -7)
SBS is rarer than it used to be, partly because of newer medication (i.e. biologics) and partly because surgeons have finally learnt that the small bowel is a finite resource and it's much better to cut out as little as possible. Statistically, you are fairly likely to need surgery eventually although there is still about a 30% chance that you won't need it.
Posted 8/16/2017 4:14 AM (GMT -7)
I have my TI and ascending colon removed 36 years ago plus a further surgery to remove about 5 inches of stricture at surgical site. And I don't have SBS. I hope that gives you some hope and helps deal with your worry.
If I've learned one thing dealing with CD, don't worry until you have to...
Posted 8/17/2017 9:17 AM (GMT -7)
I have it in the terminal ileum and although I have had two surgeries, both were for rectal issues (fistula and still not sure about what happened with the second surgery...).

But no real intestine issues, so I consider that a win.
Posted 8/17/2017 11:37 AM (GMT -7)
I am surgery free (crohns dx '09 and plenty of flares). I had it in the TI and almost needed surgery due to a stricture but luckily it was scar tissue and I was able to avoid surgery after several dilation procedures and remicade.
Posted 8/17/2017 12:04 PM (GMT -7)
I was dx'd at the time of an emergency resection at the TI 2002. Developed a complete blockage & abscess. Had a very lengthy history of gi issues & no one ever considered crohns. I was on steroids for other issues, gi feels this probably helped keep things at bay for so many years. 2005 got sick, knew it wasn't a usual flare. Scope & biopsy came back pancolitis added to the mix. Back then the odds of having both were like 7%. Talk about a shock, my gi just kept saying after the scope I can't believe this, I have seen your colon too many times & it has always been clear.
Posted 8/26/2017 6:18 PM (GMT -7)
I was diagnosed with TI in 2007 and have had a few hospitalizations and a few related surgeries to remove growths, deal with some gyn / rectal stuff - but no major Crohn's surgery.

When I had the obstruction in 2007 many nurses told me that most other GIs would have done a resection - but he gave me 10 days inpatient to try to work it out non-surgically and I've always been grateful.

He thought I should prepare for surgery 'within 10 years' of diagnosis - and I'm just at that point now. Although I range back and forth from mild to moderate disease, so far so good in terms of surgery.
Posted 8/27/2017 4:57 AM (GMT -7)
diagnosed about 20 years ago. just recently had my second resection at the TI. total length of small bowel lost from both surgeries is about 24 inches plus total of 8 of large. No signs of SBS as the surgeons said and confirmed by NCOT above, they are vey aware of this in today's surgeries and how to be careful. As Beave stated many with mild disease never have surgery. Unfortunately, I have a severe case and it is hard to control. But even with the surgeries, I have gone back to work, travel for work, try to enjoy my family. the surgeries have helped me

hope this helps that having surgery is not the end of the world.
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