Thinking it's time for surgery...
Fri, April 28, 2017 6:31 AM
Hi all,
First time here, wonderful to find out this forum exists. I am a 25yo male, diagnosed with Crohn's in 2005. It's been a rough 12 years dealing with this disease. The last 3-4 years, really ever since I left college, have been especially difficult. Constant pressure in my abdomen, frequent trips to the bathroom, low energy, nausea, bleeding, polyps, benign tumors, the works... not to mention the anxiety and depression that comes with it, and the hermit-like lifestyle from fear of having an attack in public.
I have tried just about everything from steroids to pentasa to stelara and other biologics. About a year ago, I experienced brief remission from remicade, but the flair ups came back after a few months. I've tried diets, supplements, meditation - you name it. Nothing seems to work. My doctor warns against surgery because of the recovery period, the astronomical cost, and the likelihood of the disease returning in other areas. The last thing I want to go through is surgery, but unfortunately it seems like I'm heading in that direction.
Is anyone in the same situation? Has anyone been forced to go through surgery? If so, how did it go? I have read that real, long-term remission is possible, but I am wary of taking the risk of going through all that and winding up no better off for it. Additionally, if anyone has experimented with lesser known alternatives, please do share. I think I speak for a lot of people when I say I am willing to try anything.
Thanks in advance!!
DJNYC Joined Apr 28, 2017
Thu, May 11, 2017 2:06 PM
Reply posted for DJNYC .
Also, this is a ridiculously basic suggestion, but do you carry Gas-X gelcaps everywhere with you? Gas-X is phenomenal for relieving an attack of abdominal pressure/pain.
I've also started taking hemp oil gummies recently, and they are so helpful. I take a few before I go to bed. I don't feel "high" on them, just relaxed and not in pain. You can find some at Lucky Vitamin.com.
Joined May 11, 2017
Thu, May 11, 2017 2:04 PM
Reply posted for akr008.
Hi, DJNYC!
I was 24 years old when I had my first bowel resection. I had it done laproscopically (this is really important! incisions hurt, and the smaller they are the better!).
My stricture was very long and very narrow, and I experienced a much better quality of life for about six years after the stricture removal.
Surgery is not right for every Crohn's patient. It can work very well if the disease is localized.
Do you happen to know the specific area of your bowel that may require surgery? Like, terminal ileum? Where are we talking here?
Also, what diagnostic tests have you had done? Like, have you had a MRI? Or a small bowel X-ray series?
What symptoms are you having now? Are you having any symptoms of possible bowel perforation, like a fever? Do you have any unexplained skin rashes?
I also really recommend attending your local CCFA group. We have two sufferers who are also medical students here in the Richmond, Virginia area, and I feel so grateful to know them.
Best of luck with your decision/the diagnostic process!
Sincerely,
Emily
Joined May 11, 2017
Fri, April 28, 2017 8:57 AM
Reply posted for DJNYC .
Our stories are strangely similar.... I'm 25. Diagnosed with severe Crohn's in 2007. Was doing ok until I graduated college, tried everything, got forced into surgery.
I am so glad I had a resection. I never would have gotten my life back without it. The recovery is terrible. It's hard to move, everything is uncomfortable. But after a few months it gets better. And if they can get the worst of it, you'll have a chance to start over with meds. I had my first resection February 2015. Some complications delayed my recovery but by May I was traveling again. Continued complications meant another surgery that November to take a little bit more of my colon. By January 2016 I had resumed Entyvio and was doing really well. My colonoscopy last August showed I was in remission.
The decision of going through with surgery is not a light one. But I think it's a complimentary therapy to treating Crohn's disease and can really improve quality of life.
Best of luck and I hope everything goes well so you can start feeling better.
akr008Joined Sep 2, 2014
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