Considering Crohn's Resection Surgery

[360Wellness]

So I have been diagnosed since 2016 with Crohn's and a small intestine stricture. Before any meds, stricture described as severe. Currently, I have acheived remission with diet, Humira and Budesonide (3 @3 daily), together. I have been told I would benefit from surgery. My concerns are the disease spreading and the need for a bag, after. Another concern is also a situation of needing an emergency surgery. On a somewhat strict diet, I feel well most days. I am considering trying to taper the Budes and just remain on the Humira. Any thoughts? Any experiences? Anyone able to speak about life 5, 10, 15 years after ileum resection? Thanks in advance.

 

[NuttyGuts]

Hi 360Wellness,
I am in the same boat as you, it seems. I think I have had Crohn's since I was young, although it was not diagnosed until 2014. I have a stricture in the ileum, also diagnosed as severe. I was hoping to control the disease with diet alone, but after terrible pains, a round of prednisone, am now on Remicade and azathioprine. I feel well enough but both the GI doc and colo-rectal surgeon feel that because of the stricture, I should consider surgery now, while it would be a choice. In other words, don't wait until it's a total bowel blockage and an emergency surgery. I am still trying to wrap my mind around this, as I have always been a healthy person that didn't even take aspirin. I am worried about Crohn's reoccurring, about health problems later, and the loss of the ileocecal valve. Hope some post-surgery folks share their experience here.

 

[Dyana]

I had a hemi colectomy in 1989 and no activity or meds until 2003- then an abscess, drain, regrowth then a resection then an illiostomy and reversal. The years between surgeries are well worth the difficulty of the surgeries. Yes, many people do have recurrences but every case is different- there really isn't any way to know your future. Personally I would rather plan and have a needed surgery under my own conditions than an emergency one.
-Dyana

 

[JBMouse]

To give what is a simplified answer to 360wellness, do not be unduly worried if you are being offered a resection to just cut out the stricture, you will only lose a very small part of the ileum, and benefit from being able to eat a less restricted diet, and reduce the liklehood of emergency surgery.
I was diagnosed with Crohn's at 9 years old, was treated on meds until I was 29 yrs old, when I needed surgery urgently. I was expecting an ileostomy, but the surgeon was able to do a sub total colectomy with an ileo rectal anastomosis, and some other small bowel resections to remove fistulea, no further surgery since then, and I am now 69 years old, so longevity is not an issue.
Crohn's is not as yet curable, so you will never be free of it, but with proper monitoring, correct medications, and lots of sensible, informed self help, a fairly normal life is achievable. I have worked all my life, raced motorcycles in my youth, burnt the candle at both ends, travelled extensively, so take heart, trust and question your clinicians, and all should go well.

 

[Guerrero]

I agree with jbmouse, however i'd also ask your doc if strictureplasty is possible. That would mean remodelling your gut instead of cutting it, it's the new conservative aproach

 

[kmole]

I found with strictures it was hard to tell how well I was because they caused pain and digestive issues even without active Crohn's. I had surgery 5 years ago now and I'm still in remission. Another thing to consider is that if you have surgery while you're in remission, it's less likely you'll have complications. You may even be able to have laparoscopic surgery instead of being cut open. My surgeon attempted that method first, but I had abscesses and fistula that they didn't anticipate, so they had to cut me open. It's definitely not an easy procedure to go through, but for me, I feel like it gave me my life back. Also, I had my ileocecal valve removed, and my bowel movements are regular, basically normal, and I have no complaints. The only thing is that I'm still iron deficient, but I'm also a woman and a vegan so...

I wish you luck.

 

[Angie3160]

I can share my experience. I was diagnosed with Crohn’s in 2000. 3 times I’ve ended up in ER/admitted to hospital with bowel obstructions. It is NO fun, I almost had to have emergency surgery but each time I was treated by insertion a nasal gastric tube (that’s a Hell I won’t describe) to suction off stomach contents, I was restricted to only IV fluids for a week and given IV solumedrol to reduce inflammation. This treatment reduced the obstruction size each time so I was not completely obstructed. I always had a partial obstruction but when something got trapped in the narrow opening it became total obstruction. I underwent a capsule swallow test to see if I was a candidate for surgery. The capsule which is suppose to be passed thru bowel movement became trapped in my intestine. I had small intestine resection in 2011. I have not had an obstruction since! On the flip side I began experiencing fatigue that has progressed, I had 3 IV iron transfusions to treat anemia but it did nothing to help my fatigue. All the best to y’all and hope you have positive outcomes.