New & Going to Surgery!

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live_laugh_love
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted 9/8/2011 7:53 PM (GMT -6)   
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. cry cry
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)


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 9/8/2011 7:59 PM (GMT -6)   
I had the last of my surgeries for the j-pouch nine months ago. Really glad I had it done. The three-step route is not an easy one to take but it's amazing how quickly time flies between the surgeries. You will probably have some ups and downs that first year and there is definitely a learning curve but my quality of life is so much better now than it was with UC. Good luck.

live_laugh_love
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted 9/8/2011 8:33 PM (GMT -6)   
Thank you Scrap Girl!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/8/2011 8:57 PM (GMT -6)   
I know how scared you are! i was teriffied and i had to leave my almost 2 year old for the surgery, and that was horrible.
But it's so worth it! after surgery you will be able to be there for your daughter and do all the fun things moms do, and the non fun things too.
It is weird to not have a colon, and it's kind of hard to wrap your head around at first, but as soon as you realize how great it is to not be sick anymore, it kind of slips to the back of your mind. I chose a permanent bag, so i can't tell you about the jpouch part. But i can tell you life with a bag is great! so much better than UC
Since you are having a 3 step you will have your bag for a while, so make sure you get good stoma placement, and a good stoma. When you get your marking, put on regular clothes. Don't let them do it while you are in your hosptial clothes. Make sure you sit and stand and lay down and do all kinds of stuff, to make sure its in the right place.
And the best thing is, you won't waste your life with UC, you will beat it and get back out there and have a full life again!
good luck
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/8/2011 9:47 PM (GMT -6)   
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)))

live_laugh_love
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted 9/8/2011 10:03 PM (GMT -6)   
Thank you summerstorm and Christine i dont feel so alone anymore!! I have also had my appendix removed and i had a csection with my first and only child. one thing im still concernd is that the surgeons told me that with all the scar tissue that my fertility will drop so it would be hard for me to conceive and have another child later on in life. right now its not really a big concern but in the future this is something that can affect my life. and i just want to know if any women that had this surgery had succesfull pregnancys and deliverys??

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/8/2011 10:34 PM (GMT -6)   
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!!

live_laugh_love
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted 9/9/2011 10:43 AM (GMT -6)   
thanks im still lost i have no idea how im going to do it but i know soon i will find out. ima have to get used to it but as a young person that i still want to hang out with friends and do regular activities i dont know how its gonna effect me and what things i can do and not do.

rich96
Regular Member


Date Joined Jul 2011
Total Posts : 216
   Posted 9/9/2011 11:15 AM (GMT -6)   
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 :-)
Male, 27.
DX UC (Pancolitis) 2004
6 exciting hospital stays in 7 years
Step 1 of 3 j-pouch surgery: 27/08/2011
No more UC!! :-)

live_laugh_love
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted 9/9/2011 1:06 PM (GMT -6)   
Thanks im trying to stay positive and learn as much as i can so i wont be scared or surprised with anything.
Diagnosed with UC June 2010
More than 14 hospitalized in less than a year
Meds been on Prednisone 60mg, imuran 100mg, sulfa 1500mg
Going to have the 3 step jpouch surgery.
First one on 9/12/11
rest not known yet.

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/9/2011 1:20 PM (GMT -6)   
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))))))))))

live_laugh_love
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted 9/9/2011 2:07 PM (GMT -6)   
Thanks Christine! wow i didnt know but after all that your willing to do so many things. well for me as a young mother i want to be able to to play with my child and be there for her. and also as a young woman i would like to party and hang out with friends. And since next year im going to be 21 i would like to do what any 21 year old would do is drink? would i be able to? just curious im not really attracted to drinking but for special occasions i would like to. how do yall manage that??
Diagnosed with UC June 2010
More than 14 hospitalized in less than a year
Meds been on Prednisone 60mg, imuran 100mg, sulfa 1500mg
Going to have the 3 step jpouch surgery.
First one on 9/12/11
rest not known yet.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/9/2011 3:41 PM (GMT -6)   
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:)
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/9/2011 3:41 PM (GMT -6)   
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:)
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 9/9/2011 6:34 PM (GMT -6)   
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. :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Step 2 10/20/2011, Step 3 TBD
http://life-takes-guts.blogspot.com/

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/10/2011 7:50 AM (GMT -6)   
Welcome,
There's nothing you can't do, eat, or drink with an ostomy. Once you're healed up from surgery, you're going to feel SO much better. You'll be UC-free and healthy again, so you can enjoy being a mom to your little girl. :-)

After surgery, make sure you get up and walk the halls several times a day. Walking helps wake up your small intestine. When it wakes up, you'll start having output and will be able to move up from a liquid diet to solid food. The sooner that happens, the sooner you'll be able to go home!

You can live a completely healthy life without a large intestine. The small intestine absorbs nutrients, vitamins and minerals from food and supplements, so you don't have to worry about being malnourished.

Nobody will be able to tell that you have an ostomy, so you don't need to worry about that either. It's completely hidden under your clothes.

I'm sure you'll have lots of questions as things progress, so ask away, we're all here to help! You're in my thoughts and prayers for a successful surgery and smooth recovery.

Take care,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/17/2011 1:54 PM (GMT -6)   
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
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

MotherofTeenwithNoUC
Regular Member


Date Joined Mar 2011
Total Posts : 227
   Posted 9/22/2011 10:34 AM (GMT -6)   
Live_Love_Laugh,
Wanted to check on you and see how your 1st surgery went.   My son is 14 yrs old and just had his 1st of three surgeries three weeks ago.  He also has to have three stage surgery due to how diseased his colon was.  He has suffered from very agressive UC for the past year and has been on every possible medication with including Remicade infusions, with no results.  
 
But he is doing GREAT!!  He went back to High school three weeks after his surgery, has gone fishing, out to eat and to the movies with his friends.   He has his life back! and is not afraid to go out just because he won't be near the bathroom. Noone, other than his close friends, even knows he has a bag, and you can't even tell he has one when he is dressed. 
 
The first words out of his mouth after surgery were " I can't believe how much better I already feel".  And at his first followup with the surgeon one week after surgery, he told the surgeon he feels better than he has in a year.  We had no choice but for him to have surgery, but it was the best thing we could have ever done.
 
I hope that your surgery went well and that you are recuperating and feeling better already.   If you ever want to chat, I would be more than happy to talk.  "MustLoveDogs" is also on this website and her daughter and my son are going through the same thing at about the same time.   We talk all the time and the support from someone who is going through the same thing, is priceless. "Rachel's Mom" and her daughter, "ElddireMsihT" just had her third surgery and I think she is your age.  They have provided us with some great feedback and support.  This forum has been a godsend to me during the last year.  
 
I wish you the best and I am hear if you need an ear.   I find myself coming to this site all the time with questions, and the members on here provide great support and feedback. 
 
Wishing you well!
 
 
MotherofTeenwithNoUC
14 yr old male, Diagnosed February 2011. Phase one of 3 stage surgery on 8/30/11, Total abdominal laprascopic colectomy and ileostomy. UC FREE! No more nasty meds!!!
Previous meds included: Remicade, 6MP, ,Poly-Iron, Canasa, Asacol 800HD, Colazal, Levsin, Pepcid,Sulfasalazine,Prednisone
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