Crohn's And Surgery

[LadyKhan]

I've had Crohn's all my life but only diagnosed in 2007. I am in the midst of having a flare and have been for the past 4/5 months! i have seen my consultant and he has decided to put me on Humira at home which i am glad as i don't have a car to go to the hospital every 2 weeks. So i am kind of happy. Basically I was wondering about surgery as I have read many good reviews on re sectioning. You see I don't really like my Doctor, he doesn't really listen but he is a good doctor, so I let it go. He promised me i would be working, starting a family, and I'm not, i cant work because I'm sooo tired, on the toilet a lot etc.. so anyway, i was wondering on surgery and i mentioned it and he said, "oh no your young, you want to live your life first". To me that was silly so i thought id get a second opinion. So please help. I have Crohn's from the descending colon but they could only go as far as the ascending colon for some reason that wasn't explained. I have had 3 "big" cameras and 1 small one. They also found i have colitis too, though I don't no where or which or how?! so please help as I want my life back and even though the Humira helps, if you cut the whole thing out, or even the most inflamed bit, it might give me a better chance?!
Thank you very much for your time and patience.
Vicky, Cornwall UK

[poseidon5]

Well, I personally would never want to do the surgery unless it was an absolute last resort.  (I too have Crohn's and have been diagnosed for two and a half years.  I am also on Humira and it took a few months for it to work, but it works REALLY well for me now.)  Having any surgery on your bowels is a very very difficult surgery.  It will take a lot of time for your abdominal muscles to heal and for your intestines to heal.

It is my understanding that having surgery is a temporary fix for this situation.  My doctor had the same discussion with me when I was first diagnosed.  Apparently, if you have a bowel resectioning, it is only a matter of time before the disease comes back.  People who have the surgery have an 80-85% chance of needing it again in their lifetime at least once.

Therefore, I understand why your doctor told you that you are too young to get it done right now.  You are also awfully young to have to live with an ostomy bag for the rest of your life if it is all by choice and not by necessity.  But only YOU know how miserable you are with your current disease, so I'm just offering you some information but not trying to force advice on you.

[lizziecee]

Hi - I have had Crohn's for 40 yrs and had my first resection (right hemi-colectomy) in March this year, due to stricturing, ulcers and abscesses.  It is major surgery - I was in the hospital for 2 weeks. I did feel a little better after 2 months or so, but in July I had a major flare, the small and intestine and colon both being severely ulcerated. I was again hospitalised for 2 weeks, put back onto weekly methotrexate injections (which I do at home), and infusions of Remicade.  Mid September I was no better - faecal incontinence, severe bloating and inadbility to put on weight. Hospitalised again, for 5 days.  A CT scan showed I have "pancreatic insufficiency", which is a rare complication of Crohn's - I had never heard of it. I was immediately put on Creon enzymes, thrice daily with food, and am so much better - rarely have diarrhea, bloating has stopped, although unable to get beyond 98 lbs so far.

Both my gastroenterologist and gastro surgeon said I had no option but to have the surgery, and as they are the experts, I had to agree.  I would be guided by your gastro and surgeon before agreeing to major surgery. It is true that Crohn's cannot be cured, and I always knew it would come back, just not quite so soon! My Dr's were amazed at the severe ulceration in July - I put it down to having to stop the methotrexate last Dec prior to surgery, so until July I had no immuno-suppressants. When I pressed my drs as to the reason, they said that after 9 yrs on methotrexate, my risk of lymphoma was exceptionally high, particularly as I have had breast cancer, which had spread to the lymph nodes in my armpit, and my father died of colon cancer.  I am still on weekly mtx, and infusions of Remicade every 8 weeks as a day patient in hospital. My gastro wants to wean me off mtx, but we need to do it slowly.  

Best advice is to be guided by your doctors, and if you don't trust them, find one you do.
Wishing you the best,
Liz.