New & Going to Surgery!

Hi im 20 years old female been having ulcerative colitis after i had my first child at 19.

Its been over a year and its been a hard one.

Been in and out the hospital month after month

flare after flare and its just been to much been on most meds like sulfasa****ne steroids imuran and asacol .

i tried everything natural medicine

all kinds of diets and nothing. My ulcerative colitis is very agressive.

its been difficult for me since im a single mom and im constantly in the hospital.

Now i have an apses in my large intestine. (which is a colection of puss and infection)

The doctors had me on the strongest antibiotics and nothing has helped get rid of it since its in a very hard place to reach with medication.

So therefore the doctors tried to drain it. Bad news for me its in a small spot and far from my abdominal wall.

Now my only option is surgery.

its schedule for sept, 12 2011

Im mentally not ready and im really scared.

i know i have to do it for my daughter but idk how im going to deal with the fact that i wont have a large intestine.

but this is just going to be the first surgery.

im going to have 3 intotal.

the first one is the removing of the large intestine and since i have an infection in it, they cant create a pouch to connected to the small intestine. so the second surgery is going to be creating the pouch. once it heals the last surgery would be connecting the small intestine to the pouch so i can normally use the bathroom.

its too much for me as a young woman and after everything i been trying to do so i wont get the surgery its just happens like that.

i just need some comfert from other people that have what i have because even though my family is there for me

they dont really understand 100% what i feel what im going thru and whats going thru my mind.

And right now im hospitalized til my surgery. So i found this website and im glad i got to write down a summary of my experience on the making. hope to hear from people soon. Thank you.

Post Edited (live_laugh_love) : 9/8/2011 9:29:41 PM (GMT-6)

Thank you Scrap Girl!

I'm happy for you and I know you will be too. I had diverticulosis with infections every other month. So last year I had a colectomy with ileorectal anastamosis. Didn't go well though, had many complications and had to have an emergency ileostomy, but it's temp and going in soon for reversal. I have 2 small kids, well if you consider 8 & 9 small. I'm a single mom and it was all terrifying and beyond words. I had a prior ectopic pg, appendix removed, so kind of used to surgeries, but this was hard. Probably because of all the personal stress' at that time, my father just passed the month before too. But, now I have my health, my faith/future restored and I'm literally on top of the world. I never thought I'd be here, but it's possible. Best of wishes...inform yourself on prior posts here, and keep positive!! (((Christine)))

I'm glad that you have confidence. I didn't come across this site until 4 months post op. I was so confident when I went in for surgery that all would go well. I had no idea what a stoma looked like, appliances, nothing ostomy related. I had to come home and teach myself. I was really depressed because of it, my personality is 'when I know better, I do better, always be prepared.' Regarding pregnancy, I read a study few months ago that something like > 50 jpouch surgeries, 2 patients were infertile. I can understand your worried, what woman wouldn't have this cross her mind. But, you just never know and have to stay positive and have faith. My sister had her appendix removed at age 20 and became infertile due to adhesions to her fallopian tubes. I was 26 and had an ectopic pg, 25% chance reacurrance, but then had 2 successful pg's at 29 & 30. My bff's husband 11 years ago was told he was infertile. So they adopted 2 children. Guess what...she's 8 months pregnant! Don't worry so much on the unknown, be thankful for what you do have, not so much on what you don't or might not. I can get caught up with the same thought, I'm 38 and been divorced for 7 years, hoped to have found someone, remarried, had another child, but my health got in the way and well, nothing happened. I wonder too if it's just not meant to be, but I do have 2 children, my health, and am thankful and grateful!!

I think it's definitely important to stay positive. I've only had my colon out two weeks but I'm feeling better already. It's a bit of a challenge getting used to having a bag - but, if I think about the pain and illness and frequent toilet trips I had with the UC, it's well worth it!

I'm having the 3 step J-Pouch surgery so I've still got a way to go, but I've got a really good surgeon so I'm staying optimistic (but realistic) about things.

Hopefully you've got some close friends you can rely on, that's been really important for me. I'm fairly young as well so I've been thinking a lot about how it's going to affect me going out etc. Do you know what? I don't think the bag will make much difference, in fact it'll mean I don't have to cancel stuff like I used to because of the UC. Also being young helps get over surgery quicker and means you can get back on with your life sooner.

One more thing - just remember, as soon as that colon comes out, our UC is cured! For me that is still pretty hard to believe!! No more steroids and immunosupressents that do god knows what to your body.

Anyway hope that helps! Keep your head up and stay positive, the UC won't win. You will

You don't believe it now, because it is frightening, but yes...once the colon is gone you will feel well! I thought in the beginning that I wouldn't have a happy and content life until I had my takedown. Well, it's been 13 months and I'm not ready. Actually debating keeping my ileostomy because I'm afraid of getting bloated & constipated as I was prior to colectomy. I've been enjoying life for the 1st time pain free. I've been in marathons, cyclying runs...doing a 100mile next week, beach volleyball (yes in my bathing suit but I do admit to bikini envy ), started back into dance school, vacations, I'm just on FIRE! I'm getting my muscle tone/body back too. Bag...what bag people say, I can conceal it so well, and I'm the mini skirt kindof girl. The other week I saw my surgeon and some of the residents at the hospital and everytime they see me say, I'm just glowing of peace and happiness! They've made a comment that I walked into the room and 'just glowed & owned it'. I never would have thought, all I ever wanted was to be pain free, to live a normal life. My surgery didn't go well, was hospitalized 6 weeks and came home with an open wound, an ileostomy I didn't know how to manage, malnurished, 40lbs lighter, but I was determined to beat this, and I did because if you are positive it is definitely possible. And I'm not a young spring chicken as yourself, so you'll be great! If ever you need to talk, please do!! We are here for you!!!!!!! ((((((Christine))))))))))

I go out with friends to bars and clubs and drink , I go to parties, I do all the fun stuff I missed out when I was sick! Last week, for instance, we went out with some friends and went around to several bars, just drinking and hanging out. There are a few things about drinking to be aware of, it will give you gas, so pop a couple gas before you startt. It makes you have more output, so I take some immodium. We dehydrate easierc, which makes for a worse hangover, so make sure you drink some water too. I just always order a water and my drink.
And the number one thing, emptying while drinking can be dangerous, lol. So be very very careful! Most of us have stories about it, lol. But its not enough to keep any of the ones with the storiesd to stop drinking:)

There is nothing you can't do with your ileostomy. Once you heal from surgery and are feeling well again, the sky is the limit. I am a 3 Step j-poucher, too. I had Step 1 at the end of March and I'm five weeks away from running a half marathon. I will get up tomorrow morning and run 10 miles! My boys were four years old and six months old when I went into the hospital. It was hard being away from them, but I can do so much more with them now that I'm not sick, in pain, or rushing to the bathroom all the time. This surgery has been the best thing to happen to me since I got UC and I would do it again in a minute. There are definitely challenges, but the health that you are about to get back makes it worthwhile.

Keep posting here as you go through the process. This community is wonderful.

Hey, I'm just checking in to see how you're doing after surgery. You've been in my thoughts and prayers, and I hope you're doing well.

Cecilia