Hi Michelle, 

First off, welcome.

Next, yes, it is normal to be nervous. It is normal to have questions. Most of us have had good experiences, good surgeons, and great staff. 

Some of us not, but that is rare.

Yes, you will most probably lose some weight post op...The day of surgery alone along with the 1st-week post op you will not be eating much but you will be able to get back to eating rather quickly.  Just depends on how your ileo behaves. 

Do not worry too much about your weight for the moment, it is really not important...what is important is the surgery, how your heal, your recovery time and the long term.

Aim for healthy and not heavy. Trust me, that will come later. 

Once you are healed, get control of your body and figure out your new plumbing and what it likes to eat you should be fine.

Generally, for most of us, the usage of meds is much lower post op than it was pre-op...but you may still need some help along the way. Do not sweat that either...Time will tell and worrying will not help.

My bottom line is that most of us come through this with a few scars (pun intended) and battle stories. But most of us end up perfectly healthy...the ones that are not are the people that you meet here (other than some angels of mercy who still hang around to help others)...the others are too busy living healthy and happy lives.

So ask away...

Good luck

Sharon

Yes, don't worry about the weight.  I had the 3 step procedure, so end and then loop ileo for 8 weeks.  I did gain some weight with end but it took a while, and with loop it was only 8 weeks between step 2 and 3, so just maintained my weight.  I am also small-my healthy weight is around 115 so as of now I weigh just over 100lbs, 6 weeks post takedown.  However, I do feel much healthier and more energetic than before surgeries.  I also came to this site several times before surgery and also since then.  Lots of good information.  Good Luck!

skn69 posted:

Hi Michelle, 

First off, welcome.

Next, yes, it is normal to be nervous. It is normal to have questions. Most of us have had good experiences, good surgeons, and great staff. 

Some of us not, but that is rare.

Yes, you will most probably lose some weight post op...The day of surgery alone along with the 1st-week post op you will not be eating much but you will be able to get back to eating rather quickly.  Just depends on how your ileo behaves. 

Do not worry too much about your weight for the moment, it is really not important...what is important is the surgery, how your heal, your recovery time and the long term.

Aim for healthy and not heavy. Trust me, that will come later. 

Once you are healed, get control of your body and figure out your new plumbing and what it likes to eat you should be fine.

Generally, for most of us, the usage of meds is much lower post op than it was pre-op...but you may still need some help along the way. Do not sweat that either...Time will tell and worrying will not help.

My bottom line is that most of us come through this with a few scars (pun intended) and battle stories. But most of us end up perfectly healthy...the ones that are not are the people that you meet here (other than some angels of mercy who still hang around to help others)...the others are too busy living healthy and happy lives.

So ask away...

Good luck

Sharon

 

thank you Sharon. I guess the closer I get to having these surgeries the more overwhelmed I get. I am in full remission!! And I am making this choice to have my colon out. Am I crazy?? Then people I read have all these terms and stuff that I have no idea what they mean-i.e. take down, 

All I know is I am 54 and super active. I ride horses, I go fishing we camp and backpack and are outside a lot I ride my bike miles and miles. I am afraid now that I will be dependent on being super close to a bathroom-kind of like it was when I had bad flare-ups.

Will I still be able to do those things and not have to wear depends if i am hiking for 3 or 4 hours? or on a long horse back ride? Am I always going to have diarea? I know I can;t spell that word.

I notice you have a lot of comments on peoples posts and they are encouraging. thanks for that. 

Michelle

CTB23 posted:

Yes, don't worry about the weight.  I had the 3 step procedure, so end and then loop ileo for 8 weeks.  I did gain some weight with end but it took a while, and with loop it was only 8 weeks between step 2 and 3, so just maintained my weight.  I am also small-my healthy weight is around 115 so as of now I weigh just over 100lbs, 6 weeks post takedown.  However, I do feel much healthier and more energetic than before surgeries.  I also came to this site several times before surgery and also since then.  Lots of good information.  Good Luck!

 

wow. I am sure a newbie..."loop ileo" "Post take down"? I am confused. My doctor said he could do mine in 2 surgeries- I don't know all the terms yet but I do know he is taking my entire colon out and building a jpouch in one surgery. Then he puts it all together after 3 months... I'll get the terms eventually.ugh

Yes lots of people get it done in 2 steps.  I was pretty sick so my surgeon opted for 3.  For me, it worked out well.  He also gave me a packet that explained all the steps and terms really well prior to surgery.  It is called  Ileoanal Resevoir Guide and was put out by The United Ostomy Association., some info may be a little different but in general it has good information.

I had my surgeries at 61 and hiked with my ileostomy with no problem.  No depends since my days with UC.  However, I have used pads at night and liners during the day for leakage.  Nothing like when I had UC.  I have been able to go for hours without using the bathroom and do not have the urgency I had before.  Sometimes loose stools mostly due to something I ate.  

@Mhand I too had UC for 20 years. I had the 2 step surgery, second part "takedown" scheduled for tomorrow as a mAtter of fact. I would say yes prepare to lose weight. I lost a lot of weight but I'm sure my case is not the norm. I went in at 125lbs (highest I had ever been due to being on steroids for 4months) came out at 112 (my normal weight varies from 112-115). I'm convinced our colon weighs quite a bit lol!! During my first two months with loop ileo I was so scared of an obstruction I wasn't eating enough so I lost much more weight. I am now  just under 100lbs but hoping to gain more after my ileo takedown. I think my weight loss was a combination of not eating enough, stress and anxiety, and loss of appetite due to the weight loss because of the aforementioned. My advice is to seek help from a dietician as soon as you can about post op eating. I waited a bit too long! I share this not to scare you but to try and help someone to not make the mistakes I did. And most importantly walk as much as you can post op, this will help wake up the bowels after surgery and help with your recovery. Best of luck and will be praying for your upcoming surgery!