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Hey guys! I've had Crohn's for the last 15 years. Mine is in the terminal ileum. I've never had an obstruction before but last year i developed air when I would pee. WBC was over 100+ and nasty UTI. I was hospitalized for 9 days and 4-5 times over this pass summer from the UTI. I still have the UTI but I am on Keflex to keep it at bay. Started Humira and Imuran and both are working great. My TI is very narrow and basically have a year of tests we have discovered that the fistula is connected to my bladder from my TI. Plus there is a fistula attached to my Sigmoid colon that he said wasn't all the way through. So I am scheduled for open surgery on July 27th. He wants me to stop all meds 2 weeks before and start back a month after surgery. He will be taking out my TI, valve, appendix and cecum. And doing a side to side anastomoses. Soooooo my questions are is there anyone out there that has been down this path??                 IF SO My QUESTIONS ARE: How long was your stay? Did you have any complications? If so what? How what the D afterwords? How long before it came would again? Did you take meds to help? How painful was the surgery? Did they put a nasogastric tube in your nose before surgery, during or after? And would you say that the surgery was the best thing fir you and are back to normal and have an active life without the pains and such from a narrowed TI or fistula? And should I stop my meds or not? 

Reply posted for PonchoRider1389.

When they remove your illeocecal valve you'll probably have chronic diarrhea. For me it got better after a few months but I still have it multiple times a week. I tried taking something for awhile (giant yellow/tan pills, I don't remember what it was called) but I don't really like taking daily meds and things seemed to get better with time.

As for a time frame for biologics, your doctor knows best. I'm not sure how well Humira does stopping and re-starting but if this is his game plan then I would assume it will be okay. 

Good luck!

Reply posted for akr008.

Hey thanks a lot. D is diarrhea. Are you taking anything to help with that? And I am on Humira. My surgery is July 27th. He wants me to stop two weeks before. July 6th. The start back up 6 weeks from that. So a month after surgery. Is that a good time frame? 

Reply posted for PonchoRider1389.

I'm doing really well. After the second surgery (Nov 2015) it took a few more months to recover but by August 2016 I was in clinical remission (post-scope). I still have symptoms, I no longer have an illeocecal valve so diarrhea is a common occurrence but I'm able to go back to normal life. I eat pretty much whatever I want, which is pretty healthy and just avoid trigger foods. For me that's no corn, no fish, no lemonade or pineapple. I eat tons of fruits and vegtables with no focus on how large or small my meals are. 

What is "D"? I don't know what you're talking about. 

I had no problems re-starting entyvio and I did it twice but other meds can be more fickle so you'll want to work with your doctor. Honestly, most of the biologics have such a long time between doses that if you time the surgery right you don't really need to stop it. 

Reply posted for akr008.

Heyyy. Wow! Thanks for sharing. It's been a process huh. So here you are now how are you feeling and doing now? Any recurrence? How is you D? Or is things back to normal? How is your eating? Big meals? Small meals? Eat anything you want or healthy? Did you have a problem going off your meds and then them not working post surgery? 

Reply posted for PonchoRider1389.

Hi, I had a very similar surgery as to the one you are describing, however all of my fistulas were intestinal, so no repair to the bladder was needed. Going off meds is normal, it makes you higher risk during surgery. Listen to your doctor. I was off entyvio before and after my surgeries. I was on steroids pre-surgery and had to taper those as well which landed me in the hospital earlier than expected. My total stay for the 1st surgery was 15 days (11 post-op) and for the 2nd surgery was 5 days (I was significantly less sick at this point). Complications I experienced: DVT blood clot in my pelvis one month after surgery which turned into a host of problems, slight leakage post-op which resolved on its own, scrunching of the anastomosis seen in my scope about 6 months later which after continued debate resulted in a second bowel resection. 

I'm not going to lie---it was extremely painful. It took me months to finally regain full mobility. I think it's highly dependent on how sick you are going into surgery. My 1st had a much longer recovery period. In the hospital I took diludad, I also had an epidural for a day or 2 post-op. I don't handle pain meds well so after I was discharged I quickly weaned myself off of vicodin. I did not have an NG tube at any point. It took several days (like 4-5) for my bowel to "wake up" after the 1st surgery so I didn't eat anything for about a week and several days with just ice chips. 

I wouldn't say surgery was the best thing that ever happened to me... it sucked. But I got my life back and was extremely beneficial in the treatment of my crohn's disease. 1st surgery was February 2015, second surgery was November 2015. I was probably feeling most myself by May 2016 and have continued to make improvements in the year since. 

Listen to your doctor about the meds. 

Good luck.