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Crohn's Disease Forum » Surgery » What to expect


08-05-2013, 05:07 PM   #1
eddieswood
 
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What to expect

For those who haven't read my other posts, I am Eddie, I am 18, and I just graduated high school. I have had pancolitis since September of 2012 and have yet to reach remission, trying almost every medical option possible. The colitis lead to me missing most of my senior year and kept me from going to the Air Force Academy. Now I am going for a total colectomy on Thursday, and they kind of rushed me into it so I don't know what to expect. I have put off going to college for a semester to allow adequate recovery time, but I have a lot of questions for any one with any advice to share. They plan on doing two or three surgeries, leaving me with a bag for a few months after the first surgery. After the surgery how long am I going to be in pain? Is there anything I won't be able to eat (on a very limited diet now so I'm hoping I can go back to a normal diet)? Will alcohol (not that I would drink because I'm underage) cause any problems? How long before I can do physical activities? Does the ilostomy bag smell or cause any discomfort?

Any advice is greatly appreciated, even if it doesn't pertain to any of the questions I asked. I just want to know alittle bit more about what I am about to have done. (I am very excited to get this to not be in the constant colitis pain and discomfort, but I'm nervous because i know so little about it and can't find that much information online)
08-05-2013, 07:29 PM   #2
BowelMeOver
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Thank you so much for joining us here, and sharing your story with us, Eddie. Like you, my husband was just diagnosed with Pancolitis in March of this year, and we are facing the same surgery on the 30th of this month.

You're going to find an awful lot of great information here from people who have already been through this. Keep in mind though, that everyone will have different stories to tell for the same exact procedure, so the answers will not be specifically what you will experience.

I have heard that it is most common to do the J pouch procedure, or the Ileoanal or Ileorectal Anastomosis surgery as it's also called, in 2 steps, giving the newly created pouch a good chance at healing.

One of the most important things I've learned in keeping healthy after the surgery is to be careful not to become too dehydrated. Those without a large colon no longer have the means to absorb much needed fluids, as well as potassium and sodium. You may also be advised to stay away from nuts and anything else that isn't easily digested, to avoid a potential blockage in the small intestine.

Please make good use of the Search button. I have found so much valuable information just by reading others stories, both past and present.
I'm wishing you the best of health going forward. Please keep us posted on how you are doing.
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Husband diagnosed with Pancolitis 3/2013
Medicines used in the battle: Asacol Prednisone Imuran Humira
Proctocolectomy/Ileal Pouch-Anal Anastomosis 9-6-2013
Contrast enema + flex scope 11-18-2013 = approved for reversal!
Reversal scheduled for December 19th. Egads!

Sometimes hope is the best medicine. Don't give up!
08-05-2013, 09:29 PM   #3
Cosmojo
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Hey Eddie,
I just graduated college and I wish I had taken some time off to do the right thing for my Crohn's, now here I am starting grad school and looking at surgery.

They opened me up for surgery once and sewed me back shut again(long story) anyways I have all the incisions just not the bag, so healing was close to the same. I have a good amount of friends my age who have a bag, and I have never been able to notice them, and they said they don't smell unless there is a mistake putting it on, they said they carry extra supplies with them usually jic. Most of them spend 5-14 days in the hospital and your doctor team should be managing the pain. I remember the morphine drip took care of the pain and I pretty slept the rest of the time. Wish I could be of more help, just wanted to send out my reassurance and support.
08-05-2013, 10:29 PM   #4
PsychoJane
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Hi Eddie,
There is a lot I could say but I probably will forget a few things through. I can't remember exactly everything of my first surgery (It was 14 years ago) but I was in a pretty miserable condition at that time so it would not necessarily be accurate for the healing time. The one I had last year went quite well, I would say you have intense pain for a few days but this is taken care while you are at the hospital. After 2 days I was having tylenol only to give you an idea. It is sure that because my tissues had been cut once, there was probably less nerve sensitivity this time as they probably get numb afterward. Let say it takes a good 2 weeks to feel comfortable walking around after 3ish, some things still hurt like bending to get things on the floor but it's a matter of time. At week 2 I gave up on tylenol and that only could keep me pain free. It gets better rather quickly.

To give you an idea I had my surgery beginning of may, had wound complication that slowed the whole thing down but still, in July I was body boarding at the beach so it can be relatively fast!

When it comes to food, you have to give your body a little time to adapt. Certain people have restriction, personally I eat anything I want my ostomy. You don't want to try everything together, be really attentive to bring elements progressively. Technically with the ostomy, there are a few food you should avoid such as mushroom, corn, nuts, popcorn ... these are the one that comes to my mind at the moment but everyone is different some can, some can't but don't try these unless you are way sure about your digestive capacity. Other than that, for me it is a matter of quantity, I can eat a little bit of everything at the time when it comes to vegetables/fruit/whole grain fibrous things. When you are good to try these food, give yourself a chance and try them pureed or in potage at first and then small portion. For the easy food, you don't have to worry about it. Easy food being the usual white meat, bread, rice, banana, potato, and so on. If you have specific request, ask and i'll let you know.

As far as alcohol go, once again, everyone is different. You have to keep in mind that at this point your body will be adjusting. The colon is normally absorbing much of the water out of your GI tract so at first there are good chance that your output will be quite watery. Alcohol... well it can't help on that aspect so at the beginning, it is all about moderation. With time, the small bowel picks up a bit on the colon function and it gets much better with time. For me, alcohol is not a problem as long as I involve food, otherwise, cider and beer runs through me in no time and gets out as clear as it got in so do your first alcohol experiment at home where you can empty your bag at your ease if needed.

As far as physical activity go, well you will be able to walk around quite quickly... I know, this is probably not what you consider physical activity. Normally it shouldn't be before the 8 weeks post-op for any lifting and then, go progressive to avoid any complication at your surgery site.

When it comes to the bag, normally, your bag should not smell. Keep in mind, if you find it does smell, this is probably not the type of appliance for you. There are many brand and it worth trying a few to find out the one you are the more comfortable with. I don't know if you have some appointment with a stoma nurse booked at some point? To name a few brand around you have salts, convatec, hollister, coloplast. I think these are the brand you will be encountering in the states mostly but I might be wrong. So if ever they start you with some type of appliance at the hospital, keep in mind that if you don't like it, it worth looking for something more appropriate for you! Same goes for discomfort, it should not bring you discomfort. The only part a bit annoying I would say is when you eat a lot before sleeping... then the bag fills and then it can cause some annoyance as you sleep. To prevent that I avoid eating at late hours.

I would suggest you to find some waist band to hug the bag to your body. I don't always wear one but I like to do so. It is not a necessity and does not necessarily bring more security but it feels like it. I feel more comfortable that way and it allows the fact that your bag can fill a bit without having to feel like you need to rush to find a toilet to empty it.

If you have any additional questions, feel free to ask!
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Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

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~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

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08-06-2013, 10:04 PM   #5
Ginger is her name
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Hi Eddie!

The bag is no big deal my first advice is to try out lots of them and see what works out best for you. Most companies send you goodie bags that have supplies you need and a sampling of bags. You can even get deodorizing drops to put in the bag to reduce odor. You will notice it more than others... Most people won't even realize you're wearing a bag much less smell any odors!! Good luck to you!
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