Surgery Consult end of June

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New Member

Date Joined Jan 2010
Total Posts : 13
   Posted 5/29/2011 10:44 PM (GMT -6)   
Well I didn't think it would come to this.   Was diagnosed with UC in 2007.  I've had flares on and off since then.  Now being the second worst one (first being when diagnosed).  I've basically been steroid dependant since '07.  Tried Remicade, and it worked great, but unfortunately caused my hands to go numb (still some numbness after a year).  Tried azathioprine in 2007, which caused me to have a platelet problem (ITP).  My doctor has sent me for a second opinion in Vanderbilt, about 2 hours away, and they suggested surgery or a nicotine patch (strange...they think my quitting smoking may have been a culprit).  That was last October when I got the second opinion.  My local GI did another scope and determined I only had 45 cm affected and has never had to send anyone for a colectomy with that small of a section affected.  We tried meds and unfortunately after having a minor surgical procedure, the antibiotics caused me to go into a huge flare.  My GI says he cannot keep me on Prednisone because it's so bad for me and said we are running out of options.   I could do Humira but with my platelet problem, we don't think that will solve anything and the flares will just continue.  He said that the doctor he sent me to at Vandy has a surgeon that does the colectomy/j-pouch laprascopically (sp?) whereas our local surgeon does not.  So between he and I and the walls, and obviously you guys, he suggested I do it there.  So after lots of tears, I have scheduled my consult.  It is the end of June.  The thing is, I'm nervous.  This is a big deal, but basically I made this decision because I basically just want my life back.  I've been sick for 4 years.  If it's not the colitis, its the ITP.  I have no energy.  I'm a 33-year old wife and mom of 2 small babies.  I don't have the energy to keep up with them because I'm sick all the time.  I'm thankful for these boards.  I have come here to know that having this surgery is NOT a death sentence.  My GI said to me "everyone that I have had to send for this surgery comes back and says I wish I would have done this sooner."   I know not everyone has had the best experiences, but I also know that there are a lot of positive stories out there, it's just a lot of those people are out living their lives and not on these boards.  I want to be one of those people.  I want to come here and tell my story and give people hope but I want to be out living my life and enjoying my husband and kids.   My biggest fear is being grossed out by my stoma, which by the way I want to name.  Another big fear is just the overall recovery time.  I'm very overweight (I hate the term obese, even if I AM). I've been on weight watchers and recently lost 20 lbs.  Now, being sick, I've lost another 12 pounds.  I am going to assume I will probably need to lose about 100 pounds before they hook up the j-pouch, correct?  I guess the purpose of this post is just to share my fears and tell my story.  If you have any positive things to share please do.  Please also include any kinds of questions I should ask my surgeon at the consult.  I have some already but would love input from people that have done this before.  I wish all of you the very best and thanks for listening to my story. 

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/29/2011 11:14 PM (GMT -6)   
i can't answer your jpouch weight question, i decided on a permanent bag.  I think that once you have your surgery and are able to exercise and eat healthy again, you will lose weight.
I was 29 when i had surgery, with an almost 2 year old at home, and i was letting him down, and missing his life, and that was just not acceptable.  so i said, forget this crap (literally) and take this colon out!!! 
So i went to surgery, it was hard, it hurt and it took a while to recover.  It was gross at first, but my mom put it this way she said, "will it be any grosser than having diaherra and pooping all the time?" 
She was right.  You've got small kids, so i'm guessing you are used to having all kinds of disgusting things put on you at any given time, lol.  I've been thrown up on, had chewed up food put on me, pooped on, peed on, sneezed on, all that good stuff so that kind of helped me be ready for the gross factor, lol.
My main reason for surgery was my son, i couldn't even take him to the store, cause i had to go to the bathroom all the time.  I kept thinking, how am i gonna sit in car line, or go on field trips, or ball games, or his wedding.  (I ramble btw) I was at the beach, watching him leave with my family and my husband to go play on the beach, and i couldnt go cause i was having to go to the bathroom.  And that was my final straw.
Anyway, the first few weeks are really hard, cause even though, the minute you wake up, you can feel the UC is gone, its a clean feeling, you still have the surgery pain and the weakness from that.  But even then, i felt better than i had felt in years.
It''s been four years, and i do all the things a mom should do, and a wife should do.  I have enough energy to clean and mow and plant flowers, and i can sit in car line, and volunteer at school, and go on field trips, and take my son to the store, to the beach, whereever.  We are actually going to disney for his bday in a few weeks, and i'm so excited, because this time i get to eat the mickey ice creams without spending two hours in the bathroom!!!  You will find there are little things like that that make you so glad you had surgery.  Today, it was being able to spend the four hours outside it takes to drain, clean and refill the hottub. 
I always tell this, and it's corny, but  when i had UC, my son had to play in the bathroom all day, and i had those supposed washable crayons and i let him draw on the shower walls.  Well, after surgery, the first time i took a shower alone and got out and saw myself, it was horrible.  I looked like a heroin addict, track marks from iv's, i was so skinny, that big scar on my stomach, bag hanging there (and i promise I'm not saying this to scare you!) and i cried and cried, and then i caught sight of the crayon on the walls, and i remember why i had surgery and what i was gaining!  And i realized that the scar would fade, the track marks would go, i would get some muscle tone back, and it would be ok, it would be great!
And it has been! 
This may help you, make a list of all the things you wish you could do, all the things you are missing out on now.  And if you want to, ask us if we do them, or ask your surgeon.  And keep a pro and con list, mine had three cons, and about 300 pros!
Anyway, like i said, i ramble, but my point was, i was right where you are, and i took my life back, i  beat UC and its been great!
good luck!

New Member

Date Joined Jan 2010
Total Posts : 13
   Posted 5/29/2011 11:24 PM (GMT -6)   
Thank you! My UC drains my energy more than anything. I've never had to plan my trips around bathrooms, weird I know but I have always been able to "hold" it for at least a little bit if need be. My problems is I always get the little flares and I've just become so darned prednisone dependant. No other drugs help and I'm tired of being 33 and taking enough medication to kill a pony. It started with UC, then I had a DVT, then ITP. I figure if I can get rid of 1 problem, then I can start feeling better and tackle the next. Because of all the issues, the doctors advised against having a biological child because I was always in a flare (small ones but flares). So last year we become foster parents. We adopted our daughter (she's 21 months now) and have a 4 month old. I'm just tired of missing out on things because I am stuck at home due to lack of energy (because of the diarrhea). I almost feel like a fraud for getting the surgery because I read of so many people of have it worse than me or being hospitalized. But I look at my kids and know that my life is worth it for them. Even though I am not really one to scope out where the bathroom is on most trips. I just want this done so I don't have to deal with the nasty side effects of the medicine and feeling so drained because I'm having diarrhea 10+ times a day.

Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 5/30/2011 6:54 AM (GMT -6)   
So much of what you personally detailed is also what happened to my husband leading up to the decision to finally have surgery.

HOWEVER he is a lot older and retired with no real obligations. He and I both say over and over again we don't know how so many of you deal with this on a day to day basis and are raising young families, going to school, holding full time jobs etc. We marvel at what so many of you have to do while battling this disease.

Yes it is a big decision and there will be a few months bouncing back from it. But like most every single person says - us included - "should have done this sooner". When you have tried every single thing to no avail it is time to get your life back.

If you are a good candidate for the j-pouch and can put yourself into the time, effort and recovery required for the additional one or two surgeries, you may want to try it. Hubby was hoping for the opportunity to give it a try but it was not meant to be for many good reasons. However, having a permanent ileostomy in our lives isn't the end of the world and the benefits far outweigh what he endured for 5/6 years. The success rate is high from everything I read but for some they breeze right through it and others it takes longer.

The main thing right now is to deal with your upcoming appt and discuss the different options to help you decide. Ultimately to get your life back and be able to enjoy your children and family will be such a reward.

These forums and having the experience(s) of others to draw upon are invaluable. Even though it is 5 months ago he had his surgery and with a few bumps along the way he is doing very well I still come here as this is definitely a great resource. Like others I want to try to help share our experience and success to hopefully help people like yourself who are understandably nervous just like we were not so very long ago.

Good Luck!
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 5/30/2011 7:16 AM (GMT -6)   
No need to feel like a fraud -- everyone is different, and frankly, you can always find someone worse off. I think it's great if you can avoid some of the pain and hospitalizations and just get to what works. I tried more things than you did, because I tolerated the drugs better -- so I was on remicade, humira,cimzia, etc. Got a relatively good year on remicade, the rest didnt' do anything. I relate to what you're saying about cascading health problems, although mine were different. Before surgery it just felt like my body (or just my immune system) was going crazy. I had boils all over my butt, EN nodules all over my legs, and I had a painful eye condition where I had to wear sunglasses inside and I called myself bat girl because the light was so painful for me. Last straw was a fever that got up to 104.6.... I thought I was going to die being on immunosuppressive drugs.... got me 10 days in the hospital and pretty much to the same point as you: only drug that worked at all (not always) was prednisone, simply not a long term option.

Those extra drugs and hospitalizations did not make me better. They could have, do for others, but not for me. If you know they are unlikely to work for you, skip all those steps..... the multiple hospitalizations, drug side effects etc. My life was so small for so long, and I just got used to it. I have a full time job and a partner, and mostly my life was work and collapsing from work. It's no way to live. I am so much better already 3 months after surgery (see my post "Good Stuff" from yesterday). The cascade of symptoms just stopped, everything is better. Can't guarantee that for you, but if your immune system is attacking your colon all the time, it's not there as much to help out w/other issues....

So, please drop the fraud thing if you can..... the only situation you have to deal with now is yours, and get the info you need to make the best choices for your future health. Good luck!

ps Summer your story about your son and the crayon made a big impression on me when you responded to my first post.... and sitting in at the beach....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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