Scared, worried. Big decisions.

Hey, I'm 19 years old and have been living with Crohn's/ UC for about eight years. I've tried all the medication there is... and some of it works for a while, but I always end up flaring up again. I've had one resection before where about a foot of my small intestine was removed. I've hit a rough spell lately and had a colonoscopy done a few weeks ago, results being that my rectum, colon, and a small portion of small intestine are all pretty badly affected by the disease.

Long story short, they want to perform a proctocolectomy with end ileostomy on me, which means removing all of my colon and my rectum, leaving me with an ileostomy for the rest of my life. Another option was to remove only my colon and have a temporary ileostomy to see if my rectum will heal if its not in use. Now, I am terrified about living the rest of my life with an ileostomy, but the surgeon says that if I had it done, I would be free from all the disease I currently have. I guess I am really here to learn what it's like living with an ileostomy, any feedback or stories from others would be greatly apprectiated.

- Scared Boy :(

Welcome, Derillion.

Here are some things about what it's like to live with an ileostomy: I can eat just about anything I want, I never have to run to the bathroom, I have more energy, I've gained weight, I don't look sick anymore, and I take no drugs (only vitamins).

I had the same surgery that they are recommending for you. I'm older, so I know that's different (although you are likely to recover faster, being younger).

The one thing that's really hard to keep in the mix is how much better you can feel w/out your colon. I was so incredibly sick, and I'd been sick for a long time -- long enough that I forgot what it was like to feel better.

There is a learning curve for figuring out what products work for you, and the learning curve often involves some leaks and discomfort, but you'll work it out.

It is very scary to be faced with the surgery, but it can give you your life back.

I'm sure others will be along soon to share more thoughts and stories.

Derillion- I was in pretty much the same position as you. I too, had tried every medicine available, even trial drugs and they just didn't work. When my doctor told me "well it's time for surgery", I was pretty scared. I didn't know what to do, how it works and what people would think of me. My friends kept telling me to go get a second opinion. But it was pointless since I am with the top GI doctor in the country.
I started reading up on here, but sometimes some of the lingo gets a little confusing. I went and saw the surgeon with some of my questions but I really didn't know what to ask. He wasn't really volunteering much information either.
When I went in for surgery I was scared just like most people but I also had to look at the positives. I would not be in pain anymore, I would not need to find a bathroom right away, I could eat pretty much what I want including the greasy food from the local hot dog stand.
There are so many ways around certain obstacles that you may face. For example if you want to go out with friends for a while without any bathrooms around you can always take Imodium to slow your output. If you want to be intimate with a partner, there are things to cover the bag or you can just wear a tight cut-off shirt. If you want to go swimming, there are sure-seals. The list goes on and on..
I had the same surgery that you are going to have. I had crohns in the colon and rectum so I chose to have that all removed because if I didn't I would pretty much be in the same boat and battling the disease.
You can also check out the facebook thread on here where some of us follow some IBD advocates. Some of their videos are very helpful.
If you would like to email me with any specific questions you can. Q U I C K B I R D 86 @ Y A H O O . C O M.

Just take out all the spaces. (Didn't want spam bots finding my email)
Brian

I was 21 when I got sick and missed all my 20s being sick. You are 19 and coming up on what should be the most fun years of your life. Don't let your disease rob you of that when you can get that colon out and have your life back!
I wasn't scared of surgery either, I was excited. Its been five years since I've had surgery, haven't regretted it once! There are possible complications, I actually just had one of those, a twisting that did require another surgery, and I'm still happy with my choice!
Is surgery fun? No. Is the recovery hard? Yes. Does it take a while to get used to the bag? Yes. BUT its worth it all to be healthy and happy and out living life!
I do everything I did before I got sick, wear the same clothes, eat the same foods. We go on vacations, I've been on cruises and to new orleans, never could have done that with uc!
Anyway good luck with your decision and make that pro and con list!

Thanks for all the feedback folks, it's easing my mind a bit.

What's bothering me now is just questions having to do with life: "How will this affect my sleeping? Can I sleep in any position?" "Will I be up all hours of the night having to empty my bag?" "How is this going to affect taking baths?" (I love baths, rather than showers:).

Just simple lifestyle questions, I know that it will take adjusting to, but I just don't know how much.

Here are some specifics:

Sleeping: I sleep on my side as I always did, could do that since surgery. Depending on the type of surgery you have, you might have some restrictions right after surgery. There are others on the list who have mentioned sleeping on their stomachs, and back is fine too of course.

I generally get up once in the night to empty, but it's fast, takes maybe 3 minutes, and often I don't really wake up a lot. Others sleep through the night or take immodium to help w/that (this is way better than when I was sick and when I'd get up in the night it could take a half hour, then I'd have to run back a minute after going back to bed....)

Baths -- I'm with you, love them too. I use a product called a sure seal, which is a clear plastic, sort of looks like saran wrap, but sticky on one side (it's like the tegaderm that holds IV's down). This goes on the outside of the wafer (part that attaches to your skin) and helps hold it down and keep it waterproof. I either take a bath or go swimming and take a shower every day. Others have other solutions but once you're healed, you can definitely take baths.

Feel free to ask more questions -- this was a new world for most of us, and a lot of us (including me) got these kinds of questions answered here.

Great, practical questions!

Yes, you can sleep on your stomach. My stoma is on the right side, so I bend my right leg and hug a pillow, which lifts that side up just a bit, just in case the pouch fills up overnight.

I get up only once a night to pee and then empty the pouch. When I had Crohn's flares with chronic diarrhea, I had to get up every hour throughout the night, so this is a huge improvement over that. When I first got my ostomy, I was so happy to be able to sleep through the night and didn't realize how sleep deprived I had become.

You can also take baths, showers, and swim in the pool or the beach without any problems. I also like to go to waterparks, which I could never do before surgery. Just didn't have the energy to run around and climb all of the stairs, plus I could never be too far from a bathroom before, and now, I have so much freedom. It's truly a beautiful thing.

Keep those questions coming...

No they don't go bad. I don't think there are any long term complications. You may end up with a blockage, or a patch of irritated skin at some time, but those possible things are nowhere close to as bad as the complications of 60 more years of drugs and flares and constant sickness!

It may be different with individual insurance companies? Not sure how that works - my husband is military and I went over my GIs head straight to a colo-rectal surgeon (well, actually during one of my hospital stays I was followed by the surgery team and they direct consulted me into their clinic). So I met with my surgeon and said I wanted to go forward with surgery ASAP, I was sick and tired of being sick and tired.

A good discussion to have with your GI/PCM or both. And, I don't think you are nuts. Only people who have NO IDEA what your life is really like would think you are nuts :)

There are risks with any surgery so I guess you have to weight the potential risk vs. the benefit.

Uncertain Kiwi, there are many degrees of IBD. I knew someone who flared once in her twenties and that was it for twenty years -- she was fine well into her 40's (when I lost touch w/her).

One thing to keep in mind is that you're an exception; in general, people w/mild cases don't post on boards like this and the patient literature etc. is more geared toward more severe cases. So, it's not inevitable that you'll go to the bathroom 20 times a day etc. This is a very major surgery with a lot of risks, and I can see why your doctors would not think it worth the risk at this point.

Great that you're not afraid though -- I was terrified of surgery and waited longer than I should have.

I can't answer your before/after question re surgery because I think IBD affected my energy level years before I was diagnosed.... so you're asking me to compare an energy level in my 30's with when I'm almost 50, and it's apples and oranges...

No pain after eating. Not sure of the risk of sepsis -- I had lapro surgery, so lower there.

Wishing you lots of good health.