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Crohn's Disease
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Posted 7/27/2011 12:16 PM (GMT -7)
Hi all, I have had Crohn's for about 8 years and just had my first resection. I am looking for any advise or information I may not know. Any pointers or tid bits would be great. I am currently on a soft diet and wondering how in time my body will deal with food. Will I notice a big difference?
Posted 7/27/2011 12:19 PM (GMT -7)
How long ago was your surgery? I have no advice (no surgeries so far), but welcome!
Posted 7/27/2011 12:24 PM (GMT -7)
I just had surgery Monday 7/18 and got home from the hospital yesterday.
Posted 7/27/2011 4:35 PM (GMT -7)
Just rest and being able to eat is the best thing.No lifting anything heavy ,how are you doing?
Posted 7/28/2011 8:39 AM (GMT -7)
Did they send you home with a diet plan? After my last surgery they gave a list of foods and a time line of when I could start eating them again. I didn't try anything with fiber for quite awhile (too scared I think). And rest while you can, but try and do a little more each day to build your stamina back up. I was driving in 3-4 weeks, back to work in 6 weeks.
Posted 7/28/2011 12:18 PM (GMT -7)
Hi Zoei and welcome. It's been a long time...20 years since my resection. All I can tell you is rest, rest, rest. Ease into eating. Depending on your own personal path and where you were resected, your diet will be different from others. I had issues because my surgery was my TI and that left me with horrible D no matter what I ate. I have a med for that and do quite well now. Food will be an experiment as you find what bothers you and what does not...sorry we are all so different it is hard to pin it down.
Posted 7/28/2011 7:16 PM (GMT -7)
I am doing really well. No tummy issue. Still have D but I think that is the antibiotics and the fact that I am on a soft diet right now. I am so surprised how quiet my intestines are. So far no issues with what I have eaten. I had CD in my iluem nad they took about 18" out between it and connecting it to my large intestine. Won't have to worry about any problems with my appendix now...lol
Posted 11/15/2011 12:22 PM (GMT -7)
My daughter had resection surgery around the same time you did. What maintenance med if any did they put you on and how are you doing?

Thanks for your reply.
Posted 11/15/2011 2:27 PM (GMT -7)
I had a resection where they took out 18" of small intestine..oct 21st. I have started eating some regular foods but having major D. They told me to take it easy for at least 2 months. It is hard. I started driving too soon i think.

They did ask that I go dairy free for 2 weeks. I have to say that I was having less bm...and more solid ones. Now i am having dairy and the D is back. Something you might consider?

I am wondering what maintenance drug you are on as well...as all the ones I have tried made me bleed and bad side effects. (pred, Pentasa, & asachol so far) I am back on Entocort for now.

Sorry I am not much help, but I wish you a very quick recovery & and LONG remission! Kathy
Posted 11/15/2011 2:44 PM (GMT -7)
So far she's doing great. Has had two blood work levels that have been normal. No anemia either. Great news!!! She eats what she wants, aside from corn and lettuce and does go basically dairy free except for cheese. She had 12 inches of small and three of the large intestines removed. She had C diff before this from lots of antibiotics. Basically her doctor told her to treat it as if she no longer has Crohns because it was removed, but we are maintaining rigorous testing to make sure everything is at bay.

Keep in touch and I wish you well.
Posted 11/15/2011 2:45 PM (GMT -7)
the only 'advice' my surgeon gave me was don't eat cauliflower, cabbage, brocolli or beans - the windy greens :) I just reintroduced food gradually and now eat really well. maintenance meds are what you need to stop the inflammation and prevent the crohns fibrosis coming back - good luck with your recovery :)
Posted 11/15/2011 2:50 PM (GMT -7)
She was on 6mp (mercaptopurine) before her surgery and it did not seem to help. She lost half her hair and had no energy at all. Maybe a little of this was due to blockage but the doctor elected not to put her back on it. I asked about Pentasa or Asacol, had heard they were not as harsh as 6mp, but he said they were found to not work as well with Crohns but were mostly for UC. We are taking it a day at a time but like I said we are monitoring it closely. She felt so bad on the medicine and now at 19 has her life back for now. I feel hers was brought on to lots of antibiotics for kidney infections and we were popping Advil left and right due to her backaches from the kidney problems, she had five kidney stones.

I feel the antibiotics coupled with all the Advil brought her flare on. I am praying that now that we have the diagnosis and can avoid those things this may never return.
Posted 11/15/2011 2:58 PM (GMT -7)
Margie63, I would talk to her GI again as with CD it can come back even after surgery to remove the affected area it can occur somewhere else. This is why it is important to keep up with maintainence meds, the azathioprine may not have helped get her active disease under control but it may well keep it from reoccuring in the future. I have had numerous surgeries and have had an ileo for 20 years and had all colon, anus, rectum removed and lots of small bowel and azathioprine has been my saving grace. It is the only thing to keep the CD in remission and so happily keep taking it for that reason.
Posted 11/15/2011 3:01 PM (GMT -7)
What is the other word for that, I haven't heard of it, is that also Asacol?
Posted 11/15/2011 3:07 PM (GMT -7)
Margie63 I was told after my first resection that I no longer needed meds, so I didn't take any. Ended up having to have another surgery only 3 years later becuz I had developed scar tissue at the resection site and obstructed again. I would get her back on some kind of maintenance med. I am on Asacol myself and I have only had one flare in 6+ years, and luckily no more surgeries. Good luck!
Posted 11/15/2011 3:32 PM (GMT -7)
Thanks for the advice. I really appreciate it. Experience sometimes is definitely the best teacher. Good luck to you.
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