Sharing a post-surgery story and seeking post-surgery advice
Fri, May 29, 2009 2:32 PM
The story: I have had Crohn's for 34 years and avoided surgery up until now (almost a miracle...). I had my first surgery 2 weeks ago. I had developed severe strictures in transverse & descending colon & ascending had become completely distended. The surgery was laparoscopic (absolutely THE way to go -- I'm going back to work just over two weeks after the surgery); 5 hours, 5 days in hospital. Surgeon removed 3/4 of my colon (and gall bladder for good measure since it was filled with stones, though not yet symptomatic). In the same procedure he connected the end of my small bowel to what was left of my descending (Sigmoid & rectum were disease-free). I am almost having normal bowel movements and have been able to eat things I wouldn't have dreamed of in years. Truly miraculous!
Advice sought: The surgeon was able to removed all the diseased colon (about 10 lbs of it... though not a weight-loss regimen I'd recommend...!),but as we all know the tricky part of Crohn's is that it can reoccur anywhere in the digestive track. For those of you who have had successful surgeries, what are you doing prophylactically? I am still on 5 mg of Prednisone, but definitely want off of that. I HATE Pentassa (and swallowing those 16 pills a day never did anything for me). Does one have to be symptomatic to get humira or the other injuectibles? What other options are there? I have a follow-up with my G/I to discuss this next Tuesday (June 2) and I'd like to have some ideas before going to see him.
Thanks!!
P.S. I've found that humor has helped me through all the years. And fortunatley I have friends with senses of humor too. One gave me a baseball cap before my surgery -- he'd also had a colon resection, but for diverticulitis -- it had the punctuation mark ; on it (I had to explain it to several people -- "semi-colon" -- but my surgeon got it right away.
Joined Apr 21, 2009
Sun, June 21, 2009 11:08 PM
Reply posted for waf.
Hi WAF,
What did you decide to try for preventive meds? I just had the exact same surgery - all of my ascending, transverse and descending colon removed except for a good part of the sigmoid and the rectum, with a reattachment of the small bowel to the sigmoid. Feeling great! Eating salad! Who knew?!
I have Crohn's and want to avoid further nastiness. I'd love to hear what you've decided to try. Thanks.
Joined Jun 17, 2009
Thu, June 04, 2009 12:00 AM
Reply posted for waf.
Pllleeeeeeeeeeeeeeeeease take a second to look at Juice Plus+! I am NOT against modern medicine, but having been through a recent small bowel resection (Laproscopic is great!) I truly believe that this supplement saved me ALOT of wear and tear with the disease overall.
I can't say enough about it...use it with other meds or use it alone. I will never go without it..email me and I'll be happy to talk to you about it.
email GetFitWithAPlus@aol.com
Yours in good health!
April
Joined Mar 26, 2009
Mon, June 01, 2009 10:09 PM
Reply posted for waf.
My GI doc has told me numerous times that the studies show Remicade as being the best form of prevention after surgery. I myself am not going to do it for numerous reasons, but if you are willing, then I'd definitely talk to your doctor about it.
And I really like the semi-colon hat! Maybe the CCFA can sponsor a t-shirt design...
Joined Jan 21, 2009
Sat, May 30, 2009 12:00 AM
Reply posted for waf.
Since bowel resection I take 50 mg Imuran per day and Remicade every eight weeks plus a B-12 shot once a month and montly blood tests. I feel fine and my blood work is close to normal.
Joined Jan 13, 2009
Related Topics
Small bowel resection
jess123Joined Jan 9, 2022
Hi, I'm preparing to have an ileocecal resecti....
read more
Issues after complete sur...
Joined Feb 25, 2024
Hello,
I have had all 3 surgeries to complete m....
read more
Ostomy Support
JohnWalshJoined Dec 11, 2023
Are there wound care experts or professionals that....
read more