Termial Ileum Resection

[Shawna13]

This is my first post, so let me start off by telling my story. I've dealt with stomach issues for about 7 years. I was told I needed to eat GF, then I had gallstones so I needed my gallbladder removed. Cut to 2 days after the July 4th weekend. I'm at work and I can fell beads of sweat dripping down my face and I started to have flu like symptoms and then pain on my right side of my stomach. I told my boss I think I needed to go to the ER because I was having really bad stomach pains. I go to the ER and they tell me I'm having a Crohn's flair up. I said, "Oh, I didn't know I had Crohn's. I spent 3 nights in the hospital that time. The second time in the hospital was just a month ago. I had stomach pains that woke me up at night. I took my son to the Dentist and I had to run to the bathroom to get sick. I took him to school and then went to work. 10 mins into my day, I had to leave to go to the ER. So since my 1 year diagnosis of Crohn's I constantly have "fullness" in the right side of my stomach. You can actually see the different in the right compared to the left. I am on Humira which seems to be doing well, along with steroids (not Prednisone, thank goodness, that stuff was horrible). I have another CT on Monday and after that my DR will decide if a terminal ileum resection is needed. I already know the answer is yes, because I can feel that my body isn't right.

My questions are: What should I except from the surgery? Is it painful? How long will I be in the hospital? Will I need a colostomy bag? Is the scar bad? Has is helped anyone else? How do I lose weight after being on the Prednisone?

I can use all the help I can get. Thank you in advance!

 

[ronroush7]

Hi. I had mine removed a few years ago along with a small section of my colon removed. It was only painful the first time they had me get up and walk. After that , it was fine. I personally didn't need a colostomy bag. Walk as much as you can. Everyone is different. I was admitted to the hospital the end of March and released April 22nd. Let us know how everything goes.

 

[Justanothercp]

Hi Shawna. Sorry you are going through this.
I had a small bowel (terminal ilieum) resection about 15 yrs ago. I was in the hospital for 5 days. It is of course painful, but only bad for the first few days, then much more tolerable. I couldn't be real active for about 6-8 weeks, like no lifting heavy things, no golfing or jogging. But I did most household stuff, just at a very slow and deliberate pace.
The resection was very helpful, I waited too long and was miserable for a long time, I kept hoping it would get better, it didn't. I wish I had done it sooner.
My scar is pretty obvious and about 6 in long, which I think is longer than average. But at this point in my life it doesn't bother me at all. As far as a colostomy bag, I would guess not, but they will always warn you about it going into surgery just in case.
I still take a lot of meds to keep things under control.
I would strongly suggest looking its SCD and/or paleo diets. They have helped me immensely.
Good luck, keep us posted.

 

[Justanothercp]

Hi Shawna. Sorry you are going through this.
I had a small bowel (terminal ilieum) resection about 15 yrs ago. I was in the hospital for 5 days. It is of course painful, but only bad for the first few days, then much more tolerable. I couldn't be real active for about 6-8 weeks, like no lifting heavy things, no golfing or jogging. But I did most household stuff, just at a very slow and deliberate pace.
The resection was very helpful, I waited too long and was miserable for a long time, I kept hoping it would get better, it didn't. I wish I had done it sooner.
My scar is pretty obvious and about 6 in long, which I think is longer than average. But at this point in my life it doesn't bother me at all. As far as a colostomy bag, I would guess not, but they will always warn you about it going into surgery just in case.
I still take a lot of meds to keep things under control.
I would strongly suggest looking its SCD and/or paleo diets. They have helped me immensely.
Good luck, keep us posted.

 

[emmaaaargh]

I had 30cm of my terminal ileum removed almost 8 years ago. I was in the hospital for about a week, but would have been out 2-3 days sooner (unrelated issue to the surgery made the stay longer) otherwise. After the surgery, which was laparoscopic, I was sore, but the pain wasn't too severe because I was given lots of pain meds, although I did try to avoid laughing or coughing. I didn't need a bag, and I have just three tiny scars: one around my belly button, and two forming a little triangle around it. It definitely helped and put me into remission for a long while!
Good luck, let us know what the doctor says.

 

[DEmberton]

The pain post surgery was nothing like as bad as the pain I was having beforehand so don't worry too much about that.

I have a one inch scar down from my belly button and had three other tiny incisions that I can't find anymore. That was done laparascopically; if they have to do open surgery for some reason then you'll have a bigger scar. My understanding is that in TI cases needing a bag is rare.

Best thing I've ever done.