Reprint from Crohns... so many questions.

As you all can see I'm new to this site..quick I just turned 29 March 4th.. I have been diagnosed for almost 7 years.everyone I talk to feel I'm lucky because I haven't experienced the worst that crohns has to offer...i hear them but its hard to accept. Right in the middle of what should be the best part of my life my freedom, control, dignity and so many other things were stripped from me. And now I'm preparing for an ileostomy! Ugh, although I appear to be fine on so many levels i haven't sat comfortable in 2 plus years and times before that were often with pain. One of the post I read today said I have no 1 else to talk to...i think mine is I have no 1 else that really understands to talk to.
The reason I'm writing this post is in regards to the ileostomy.. I keep thinking bit the little things I take for granted (funny I had some of these same thoughts when I 1st got diagnosed). I have a cruise planned in july, can I swim? How often do you have to change the bag? Can I wear belts? Can I sleep on my stomach? Can I hold a child? Is there ever a time it comes off?

Welcome, Finding Joy. Glad you found us.

Here are some answers to your questions:

Swimming: Yes, absolutely! I had a complication that made it so I couldn't swim for a while (open wound), but I just went yesterday! When is your surgery? You'll probably need a few months recovery before you're ready to swim. There are some tips and tricks that can make swimming easier, and we can tell you about them when you're ready.

Changing the bag: It varies, due to personal preference and circumstance. I change every 5-6 days now. Some people change more often, some less.

Belts: Depends on your stoma location. Meet with a stoma nurse (WOCN) before surgery to decide on where to place the stoma. Wear the kind of clothes you want to be able to wear.

Stomach sleeping: I don't do that, just personal preference, but once recovered, a lot of folks do.

Hold a child: Absolutely! Again, right after surgery, you'll have restrictions on how much weight you can hold, but that should only be for a few weeks. You will be at a higher risk of hernias, so you need to be careful. There are many parents on this list.

That "should be the best part of my life" thing is not true for a lot of people in their 20's, even when they're not sick..... for a lot of us, things get a lot better when we're older -- so don't despair, you have the chance of many, many good years.

Is your Crohn's all in your colon, or is it elsewhere too?

Feel free to ask more questions...

I had surgery on a Thurs and got out on Tuesday. I did have an abscess a week after I got home though, and I had to go back for a few more days.

Have you been on prednisone a lot? That makes the healing go slower, and that was the issue w/me.

The nurse will mark the spot for your stoma. It has to be along the vertical ab muscles, but there usually is some choice in how high or low it is.

The most amazing thing about surgery was how much better I felt w/out the gi symptoms.... I'd been sick for so long that I'd lost perspective on how ever present it was....

It is pretty overwhelming, but many of us had our quality of life get so much better afterward! Good luck next week

Just because others think 'you are lucky' doesn't mean you haven't suffered from this disease:(

You'll be surprised once you get through surgery and recovery what you'll really be able to do...live without pain will be the BEST part! Everyone is different but about 4-7 days is the 'norm' for a hospital stay. Make sure you get up and walk...even when you don't want to...it really helps with recovery!

Is it a fistula that keeps you from sitting comfortably? I still won't watch youtube videos of any abdominal surgery...I just don't want to know, lol!

Think of your cruise as the light at the end of the tunnel...with FOOD!! You will have a blast and swimming won't be an issue because of your ileo (I just got back from the Bahamas...had a great time and the water was so nice!).

When you ask about belts...are you talking about ones for your ostomy or your pants? Yes, you can wear them with your pants. In fact, I wear one daily (I wear jeans a lot) and don't have an issue...I just had to find the right style for me (and they are not 'mom' jeans!).

I change my wafer every 4ish days...some weeks i get more some days less...but you'll learn to tell when it's time.

Glad you found us...and make sure you let us know how things go when you can after surgery!

Hi FindingJoy!

I had such a similar situation to you. Thought I was one of the "lucky" ones, had Crohn's for 10 years from 18-28, and then had surgery at 28 to have a permanent ileostomy.

I came on here a few days before surgery and everyone really helped me see the positive parts of this surgery, and I literally don't live ONE DAY now where I am not incredibly grateful for the surgery. I feel SO MUCH better, I'm not on meds, I can do all of teh things you mentioned above, and more.

I change my appliance every 3-4 days. I was in the hospital from Thurs-Monday when I had my surgery, and honestly the pain when I woke up wasn't bad compared to the pain I had before the surgery. Plus they give you good drugs in the hospital.

I'm 30 now and still never regret this. It gave me my life back!!! I no longer live life as a sick person. Please feel free to email me if you want; I feel that we have really similar stories.

Don't worry; you will get through this!!! We are here to help.