I have surgery scheduled for next week-- terminal ileum, ileocecal valve, and [...]

Posted by sarahlong @sarahlong, Mar 27, 2015

I have surgery scheduled for next week– terminal ileum, ileocecal valve, and first portion of my colon removed. Any words of wisdom? I am really terrified, not so much of the actual surgery but of the recovery and don’t know what to expect.

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What have your doctors discussed regarding what to expect during recovery and after?

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I have had a couple of resections– takes a while to get back to ‘normal’ and even then you might expect loose stools indefinitely without your ileum. Took me about 6 weeks to really start feeling recovered. I tried starting slow– short walks, smoothies. My doctors were great about telling me what to expect and being available for questions post-op. You might also expect a significant weight loss (I had no appetite for quite a while!). Hope this helps.

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I’ve had crohns since I was 20 am now 57. I have had 2 resections due to complications. I have flair ups off and on and try to lead a normal life. I realize stress effects me. Which you cannot avoid. Am looking to talk to someone with chrons disease. That is a long time to have to live with Chrons Disease. I have done it and had 2 children and now have 4 grandsons. I have to help my daughter with her babies, because I want to and she needs the help. I’ve done it for 2 years now and need a break. I’m getting over whelmed, between the house getting out of hand and money and sick. So I’m taking a break and hope it helps the disease from coming back.

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I haven’t had any meds for 7 – 8 years since last resection which they found in my illium a large rock, which was the cause of the blockage. They never heard of a calcified rock in a small intestine. I was written up in JAMA. It’s never heard of before. Anyway, no meds, just trying to help myself anyway I can. I rest a lot. Eat very little, once a day. The location of the disease is where the large colon meets the small intestine. After my surgery 7 years ago, it came back after a year. That was very sad. It usually last at least 6 years. It was found in a colonoscopy a year after surgery. Sad but true. I never let it get to me. But sometimes it’s hard and it’s also interfering in my normal life. What can you do, it could be worse.

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I have Chron’s Disease since 20, am now 58. I have 2 resections in my lifetime. The first one was due to a complication at 25, second resection was due to a 3 inch rock in my ileum. Complete blockage. Don’t know how I survived that one. When I was 25 they did not have laparoscopic surgery. So since they had to cut me from my pubic hairline to my belly button, it was very painful. But now they can to it laparoscopicly. Is that how they are opening you up? If not I suggest you speak to your Dr. about pain control. As I did not and was in such pain afterwards. There are blocks now and morphine pumps. I have a high tolerance to pain meds. Obviously we know why. So my second surgery was when I was 51 and they found the rock. They could not do it laparoscopicly because they said too much scar tissue. So had to be opened up again and I knew how much pain it would be. Again I only got shots of demeral every 3 hrs. Which was not enough. I was suffering. Like I said make sure you Dr. gives you good pain meds to help you after surgery. So I can only say recovery is not bad it’s just that I was cut open about 12 inch up and down, 2 times. The pain was sooo bad. I don’t know how your Dr’s are planning to operate. Like I said if it’s Laparoscopic, its a breeze if not get good pain meds, morphine pump, spinal blocks for the first few days. After the 4th day it gets better. I was in for 2 weeks both times. But I had lost so much weight. I was 98 lbs and am 5’6″. I know weight about 127lbs. So you should be fine. I live in Fort Lauderdale, FL. Both surgery’s were no fun, but it beats what I felt before. Good luck to you.

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I commented below on my surgery experience. And gave you some tips. Get good pain control after surgery, discuss with you Dr. how is going to help you with the pain. Especially if your being cup open, like me. I can never have laparoscopy surgery because of scar tissue from the first surgery when they didn’t even have laparoscopic surgery. Please tell me if your being cut open all the way or just the laparoscopic. Expect the worse pain. That’s why I said talk to Dr. about pain control after surgery. I didn’t have much and suffered. That shouldn’t happen in this day and age.

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thank you @debfo1, really appreciate your tips and feedback! and so nice to not feel alone, this has been tough.

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well, finally starting to feel better after surgery. I have been back here a few times but just wasn’t ready to post. anyway, nice to have this group. I have had a hard time.

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@sarahlong

well, finally starting to feel better after surgery. I have been back here a few times but just wasn’t ready to post. anyway, nice to have this group. I have had a hard time.

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Welcome back, and glad you are feeling a little better. Did your surgery go as planned and the terminal ilium and first part of colon was removed? What was the hardest part of the surgery for you?

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Curious how the surgery worked out now that its been awhile; i am told i may need similar operation
BTS

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