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.

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 7:43:30 PM (GMT-6)

Hey Live Laugh, Welcome to Healing well.

I am sorry you've suffered so much with this illness over the past year. It must be especially frustrating when you want to dedicate your time to being with your child and you can't because you're sick. I hope you have family close-by who can help you while you heal?

I know the surgery is scary and it's unexpected but it will give you your life back. In some ways, I think surgery would be for the best for many of us with UC but at the same time, I have been fighting very hard to keep my colon. I think the majority of the reason why I want to keep it is because I don't feel like going through the process of having surgery. You're in the situation where you have no other choice so it eliminates a lot of the need to try a variety of medications, waiting for things to work and reflaring over and over. There are a lot of benefits to having the surgery, you will never have to worry about having a flare up again and you also won't have to take medication to prevent future flare ups. Try to think positive. There are tons of people on the ostomy board here who have had successful surgery and moved on with their lives.

Check out the ostomy board, many people there have been through the surgery:
https://www.healingwell.com/community/default.aspx?f=33

live_laugh_love

Can you ask at the hospital whether there is a support group in your area? Or perhaps your surgeon (nurse?) would know of one. These boards are really great online but if it were me it would be great to have someone to call on the phone and ask questions and maybe some show and tell. Maybe the ostomy board could make suggestions too if you name your city and ask if anyone lives there/near.

Being a single mom is tough enough not to mention going though this surgery. It would help to have some local support as well as online. It's great that your family supports you (some people don't even have that) but you're right that they can't really understand what you are experiencing or will go through.

Best of luck.

     God bless.  I will pray for your recovery.  Suebear is a great person to speak with on this board and over on the ostomy support group forum.  She had j-pouch surgery several years ago.  I had a total colectomy with end ileo but my situation was different from yours.  I was 63 yrs old at time of surgery, suffered for twelve years with ulcerative proctitis and was prednisone dependent for two years prior to surgery.  I also had other health issues and was not a candidate for j-pouch.  I feel terrific!

     Where are you having the surgery done?

Hi and welcome. My son, Dillon, went through the same thing a couple of years ago. He is now 20.

I know the thought of surgery is very scary but you will get through it. I cannot tell how well Dillon is doing. He went from being terribly sick, with his life completely out of his control to being healthy in every way. It is true what Sue said....IMMEDIATELY after surgery we could see the improvement in him and he just continued to get better and better.

Any questions that you have we are happy to answer. I know when this was new to us I was craving for information. I can give you my email if you like but I find that what ever questions you have that there is probably many people that are interested in the answers.

Cathy

Thanks everyone. im from houston, tx. i do have questions.
can you swim with the bag? can i run with it? can i go to six flags with it? can i carry my daughter with it? how do you deal with it when you have sex with your love one? whats the worst thing that can happen with the bag? you can email me im going to make it available in my profile. or you can answer here if you feel comfertable.

Post Edited (live_laugh_love) : 9/9/2011 11:00:19 AM (GMT-6)

Thanks ByeByeUC!!!!

Thank you girlzilla! i do need to be strong and brave. and wow we are too young to have this sickness thats so horrible.. well i think anyone shouldnt get this sick ever at any age it sucks but we have it because we can take it. sometimes it can get scarry but thats the real test in live god put me through. So thank you for your words

You can do anything you want with the bag! There are several people on the ostomies forum that are married, have sex and even been pregnant with the bag. Of course you can hold your child, maybe just stick the opposite side from your ostomy until you are healed and no longer sore. It is just an adjustment. Give yourself time to come to terms with your new look and you'll be fine. It took me a few months to adjust, but the point is that i did adjust! Eventually you won't notice the bag, you'll just notice how great you feel. :) I had my last of 3 surgeries for J-pouch almost 3 months ago and I'm so happy that I ended up needing surgery. I feel like a whole new person. God finally answered my prayer for health, it wasn't exactly what I had in mind, but I'll take it! Oh and the worst thing that can happen with the bag in public is a leak. I've had that happen. I was more mad than anything because it was a fresh bag! I went home and changed it before it got all over myself and then went back to work. Think of it like this; the only thing about you that is changing (and only temporarily!) is how you poop. Everything is still the same you can do all the things you did before, maybe with an adjustment here or there. But essentially nothing has to change other than you don't sit on the toilet to poo. You can poop standing up now! in the theatre! in the store! think of the freedom! you will be ok, and you will be free of UC. (and each surgery is easier than the last by the way.) God bless and best of luck. Be sure to keep us updated once you have your surgery!