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I am having issues accepting getting this surgery.

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Posted 1/23/2009 5:19 AM (GMT 0)
Hi again.  I have a very tough case of UC, have had it for 13 years now. The past 4 months have been bad, flares for 5 days a week on average.  I would need a colostomy and removal of rectum and anus so no chance for j-pouch for me.  Now that I have planned on surgery, my UC has been doing a lot better! On good days, I cannot fathom getting the surgery. Then a horrible flare pops up and I think, get me the surgery ASAP! What else can I do to convince myself to do this?  Do you guys recommend anti-depressants? My emotions have been all over the place. Thanks.
Posted 1/23/2009 10:05 AM (GMT 0)
You and I are in the exact same boat! My surgery is scheduled for Feb. 6th! : ) I am looking forward to this procedure b/c I am ready to be done with UC and go on with my life! I understand your feelings about one day you want the surgery and the next you don't. I had a fairly calm UC day about three days ago and wanted to cancel all my appointments...but alas...the evening came and I wanted to bump up my consult! Which, actually did happen b/c they had a cancelation.

Anyway, I started taking Paxil a few months ago and find that it helps a great deal. However, it sounds that you are struggling quite a bit and you may need something a little more potent, so perhaps you could try Effexor? These are just my two medications that I know work well for me. What's great about Effexor is that you start on a lower dose and if you feel that it just isn't doing the trick, after okaying it with your doctor, you can up the dose and effects change. It's wonderful! It's also a great medication for those of us who suffer from basic anxiety throughout the year but then Seasonal Affective Disorder in the winter months. I've had so much going on lately that my SAD hasn't had a chance to be an issue, but I'm sure the when this is all said and done I'll probably have to alter my medications throughout the year and situations.

Also know that anti-anxiety/depression medications are great for situational purposes. For example, you are going through a very difficult time right now. You are being forced to accept a very permanet situation that gives you very little choice or control. A medication would do you good for your current situation and help you get through to a place where you are acceptant of your condition. Which, I feel that once I have my permanent ileo I will no longer have a condition! : ) I will be cured!!! AND SO WILL YOU!!!

I am opting for a permanent ileo b/c I want to get on with my life and never look back. I feel the j-pouch poses too many possibilites for future issues and I'm not okay with that. I'm also not okay with having to use the bathroom several times a day. I don't know about you, but I can definitely live without the urgency and emergency of bathroom use. I love the idea that I get to choose when to empty the bag and never again having a bm. : ) I've been traumatized, as I'm sure you have too, regarding bathroom breaks and the pain that UC causes. I am ready to be done with it!

I feel horrible for you that you've been battling this for so long! My initial flare started in April 2007, a month after our wedding, and I never really have been in remission. We found out we were pregnant a month after my first symptoms began, so that was a very interesting year. This past year was much more difficult, and I am not reacting to any of the medical treatments so my only option is surgery. I was on the fence regarding the j-pouch or permanent ileo, and after speaking with my surgeon and I am 100% positive that the ileo is the way to go. I want future pregnancies and minimal doctor appointments and hospital stays. With the ileo I can basically pick up where I left off and go warp speed if I wanted...you know as well as I do that our current speed is slower than snail.

Please let me know if I can help support you in any other way. I understand exactly how you feel. I am just so relieved that the surgery is scheduled and I'm going to be better!!! Today I'm going for tests to confirm the UC diagnosis and rule out Crohn's completely. However, even for some reason I do have Crohn's we are still going through with the surgery b/c I want this colon out!!!

I hope you have a wonderful day!!! Another trick I like to do is make myself look nicer on days I feel the crappiest (no pun intended!), and today I know I am going to dress super nice b/c I feel horrible...I have a cold on top of my current UC issues. So, even if you're going to the store or sitting around the house, put on some make-up, do your hair...wear some nice jewelry...whatever makes you feel good!

: ) Robin
Posted 1/23/2009 10:16 AM (GMT 0)
Hey Princess,
I think it's normal to go through the emotions you are. I know I did!
They recommended me to have the surgery like 5 years ago, and I just recently had it done. I kept thinking, "I'm so young, the bag is gross, I'll be a freak, I'll be unattractive to my husband, what if this happens or that, I don't want those scars, I don't want a bag on my skin constantly-how will I tolerate that, What about going out in public...." I thought of every excuse and vanity issue. But then I had my daughter and I was so sick after having her. I couldn't heal after her birth b/c of pred. and that's a MINOR thing that pred has done to me. I want off that stuff and the only way was surgery. I had a hard time taking care of her b/c I'd have to rush to the bathroom constantly-on GOOD days 10xday. I even tried drug studies and only got sicker. For everyone, it just takes that "last straw." And I even think you have to go through a grieving process-you know denial, anger, acceptance......and the other ones :) If you think anti-depressants will help you, do them. Only you can make that decision, b/c only you know your emotional limits. I remember having the "good days" and thinking "this isn't so bad, I live like this" I'll just have to mess with a bag anyway if I have surgery. I mess with my bag way less than I pooped and medicated my bum and felt aweful. And having to run to the toilet 2-3 x at the grocery store, with a toddler and full cart of groceries......no more!

For me, the best convincer was research. I got all the info I could. From personal experiences (and you'll find soooo many more people who have positive stories than negative ones), and internet research (what happens if I don't do this-i.e. CANCER, toxic megacolon, perforations, constant pred., extraintestinal symptoms, etc.), Dr. consults, and I go to a support group here locally for Crohns and U/C.

You'll have ups and downs post surgery. I've had a few complications, but most people don't. Emotionally, I've handled things WAY better than I thought I would. The bag they put on you after surgery is the worst. So don't judge them all based on that one, b/c you can get tiny ones. And I wear tight clothes and no one can tell. Someone once told me to try to spot the ostomate at the local Walmart-you can't and you know there has to be one. It's me now /He He He).

I even wanted to chicken out the night b4 surgery, but then I thought "HECK NO, I'll never have to do that horrible prep again!" That was a great thought.
I can even still have the reconnect, but I'm not sure I'm unhappy enough with the bag to go through that stuff. I like not pooping. I thought it'd be wierd, but it's GREAT.

Bottom line:
Don't rush. You need to be there emotionally. Not that you'll ever be %100 ok with it or even %90, but don't procrasinate either to where you'll be so sick you don't get the choice of where, when, and have a harder time recovering. That was also a big decision maker for me. I've talked to people who had it emergency and I just didn't want that.

Good Luck
Keep us posted.
I hope I was helpful,
Chassity
Posted 1/23/2009 10:38 AM (GMT 0)
Chassity, you're right about doing what is best for 'you'.

This really is such a crazy situation, isn't it? It looks as though we all three are the same age, and little did we think that before we were 30 would have a colectomy! Before I got UC I was extremely bashful regarding bathroom issues and never did anyone hear anything from me. So, it was so ironic that I, out of all my family...who each and every one of them show no grace when it comes to bodily functions : ) ...got this form of disease. However, I am now bragging it up that I will never again have to go poo!!! Whoo-hoo!!!

Another great point was made regarding the scares of what could happen if you prolong the surgery. I am so fearful of a megacolon it isn't funny. In addition to the UC issues my immune system has been so brutally attacked that I have gotten some nasty staph infections and had to have three abscesses removed resulting in open wounds. OUCH!!! One of the staph infections was MRSA and that was super scary. Anyway, I feel as though I'm on a time limit b/c I do not want any more infections, abscesses or open wounds. I currently have a skin cyst in my left armpit (yucky, I know) and it's being closely monitored. Since this cold of mine came up the cyst has grown a little and I'm worried. However, my surgeon plans to get rid of it at the same time he does my colectomy...assuming it stays under control till then.

Anyway, it is very important to understand that each situation is different. I too had the final straw when I could not fully care for my son. I hate that I am not able to comfort him to the fullest b/c I have to run to the bathroom. Middle of the night walkings and rockings are difficult b/c both activities cause urgency. He's currently teething and also has a nasty cold, so I am doing my best to withstand the urgency so I can comfort him, and it is SO HARD. He has also learned that the sound of a flushing toilet means that Mommy returns. I really don't like that. So, for me, making myself available to him, my husband and just being able to be me again is what has led me to accept and be excited about the surgery.

: ) Robin
Posted 1/23/2009 1:46 PM (GMT 0)
Ha, ha!! This is so common. Once the colon receives the message that it's history it starts behaving better! Don't be fooled, the minute you change your mind it will start misbehaving again. For some reason this does seem to hold some truth to it. But the you can cancel your surgery. You don't have to move forward with this if you feel you want to hold off longer. As long as your overall health is not in danger, the surgery is elective. I think the best time for surgery is when the patient is 100% on board with the decision.

Sue
Posted 1/23/2009 6:34 PM (GMT 0)
i was having such a hard time at first with accepting surgery, that i actually HOPED i would get toxic mega colon or something else that would take away my choice! how awful is that?

the best way to get over the jitters, is to make yourself a list of pros and cons of surgery. And see how much longer your pro list is! my con list had 3 things, my pro list was 3 pages! it was easy after that.
And also read the stories of people on here, and elsewhere who are happy.
And ask lots of questions!
Posted 1/23/2009 9:05 PM (GMT 0)
I so empathize with you... it is a hard decision to make, and I was a mess too. My GI prescribed Xanax, and I found that taking it in the evening in those weeks prior to surgery (my biggest worry hours) REALLY helped me manage. I haven't had to take even one since surgery! It feels so good to be off prednisone, I can't even describe.

I am a candidate for j-pouch, but even if things do not go well and I end up with a permanent ileo, I know from living with my temporary one that life is SO much better now than it was with my UC.

Hang in there, it's a rollercoaster, but you'll come through it strong!
Posted 1/23/2009 9:47 PM (GMT 0)
Princesscolon, I was/am in the same boat. I spent two plus agonizing months over what decision to make and went through many emotions in the process. I have Crohns and was given multiple options. We finally determined that a permanent Ileostomy was the solution for me. Oddly enough, now that we made the decision, my colon is being on it's absolute worst behavior. I was having 2-3 bad days a week, now I'm having 5-6 bad days a week since the decision. Once I made the decision, I constantly second guessed myself. On good days I told myself the surgery is not worth it and that I should wait. On bad days I wanted it out then. I'm at the point now where I am 100% comfortable with the decision and can't wait to move forward with my life, but it was not an easy road to get there. My surgery is set for next week, January 29th and I'm looking forward to it.

I wish I had a suggestion for you to help you through this period, but I don't. All I can do is wish you the best of luck and offer you any support you may need from this end. The emotions do run wild and I was loosing lots of sleep as a result. Not that I recommend this, but for me I did use Advil PM for a few nights only just to help me get the rest I needed which seemed to help me and get my emotions in check. Just make sure you are close to being 100% on board with the decision and that you are there emotionally. Don't rush it, but don't push it off either putting youself in a worse position or an emergency situation. My prayers are with you and I believe all things do work out for the best - even though it may not seem so right now as you struggle with the decision.
Posted 1/23/2009 10:11 PM (GMT 0)
Oh my Gosh!! Is this the under 30 club..haha...I had my surgery at 30, 3 years ago!! I felt the same way. I was so scared of "living with a bag" and the life change that came with it because I was so young. It's tough getting to accept it. I still haven't accepted it 100% and I don't I ever will but you learn to live with it. I have to say I went through a lot trying to learn how to get through things and how to live with a bag and what to wear. But you know what without this site I wouldn've gone nuts. At least you know you're not alone and there are people out there like you and they all want to help. I got my life back!!! NO MORE PAIN, NO MORE RUNS TO THE BATHROOM, NO MORE MEDS. I'm finally able to wear most of the things I was wearing before. I can go out, eat whatever I want, drink and be normal. I'm very happy I got the surgery. I really think you should go for it. Idon't think I'll do the reversal only because I came a long way and learned to live like this and I don't want to deal with more surgeries and the possibility of the jpouch not working out for me. Why fix something if it's not broken right?

I wish u the best of luck and we're all here for u. Trust me, u'll struggle in the beginning but YOU WILL GET UR LIFE BACK. It's hard to see it now but I was in your shoes and cried myself to sleep many nights and now look at me...I feel GREAT!

R any of u from New Jersey?? I would love to chat and maybe meet up one day.
Posted 1/23/2009 10:14 PM (GMT 0)
What is a Toxic mega colon? My doctors think I should have my colon all removed because of precancer cells and I'm not buying it. I didn't think I could get more miserable with pain but must be so I can change mind.
Posted 1/23/2009 11:08 PM (GMT 0)

princesscolon said...
Hi again.  I have a very tough case of UC, have had it for 13 years now. The past 4 months have been bad, flares for 5 days a week on average.  I would need a colostomy and removal of rectum and anus so no chance for j-pouch for me.  Now that I have planned on surgery, my UC has been doing a lot better! On good days, I cannot fathom getting the surgery. Then a horrible flare pops up and I think, get me the surgery ASAP! What else can I do to convince myself to do this?  Do you guys recommend anti-depressants? My emotions have been all over the place. Thanks.

If I would have known how good life would be after I got the bag I would have had the surgery done 18yrs ago.  Instead I went through the ups and downs you're going through for 16yrs...I regret it!  Not being sick is awesome, and the bag won't slow you down, it's allowed me to do more things then I've ever been able to do previously :)

Matt

Posted 1/24/2009 12:11 AM (GMT 0)
Well said, Matt! I couldn't agree more.
Posted 1/24/2009 1:28 AM (GMT 0)
It is a hard decision and recovery is no walk in the park SO you must accept it 100%!!!!

I wish I had done is many years earlier...ditto Matt and Cece...I don't run around telling people I have an ostomy, but if friends ask about my health/surgery and it goes that direction, I will tell them I have an ostomy. Most people are SHOCKED that I've had an ostomy for 9 years...not because I have one, but that THEY couldn't tell. My clothes don't "look" different and my pouch is not visible to anyone.

As far as talking to someone...can your doc give you the name of someone who is available who has had surgery and living a great life? Talking to everyone here is very helpful but a face to face with someone might be the reassurance you need. Keep us posted!
Posted 1/24/2009 6:17 PM (GMT 0)
Well, I'm still not 100 % with it.
But I do accept it. I'm "ok" with it.
Posted 1/24/2009 8:45 PM (GMT 0)
toxic mega colon is something you get when you get stopped up you can get it from taking too much immodium or something and then it leaks out or breaks like. Im not explaining it very well. But basically if you get it, you dont come back from it with your colon
Posted 1/24/2009 8:57 PM (GMT 0)
Though I'm determined to get better and happy to finally be cured of UC, today is not a bad flare day. So, I'm thinking..."I can do this...today isn't bad..." : ) But, I also think of all the pills I take...I look at the scars from my abscesses, and then I remind myself that if I do not have this surgery I will continue battling immune issues and serious problems in addition to UC. For instance, I currently have a nasty little cold and instead of a few doses of Mucinex working right away, like it used to, I'm struggling to get everything under control and am battling to keep it from getting worse.

Having this surgery is such a big decision. I am positive it's the right choice for me, but now that's it's getting closer to time I'm starting to sweat and panic a little.

My husband is good about reassuring me that everything will be okay, but it's still VERY SCARY!!!
Posted 1/25/2009 1:34 AM (GMT 0)
I think it would be fair to say that everyone going into this surgery, no matter how prepared or on board to have it, is scared.  I guess you just would not be human if you did not have some of those emotions.  That is just life.  But, you know when you look at it logically and from a medical standpoint, removing the disease is the best option to living a happy, Healthy, long life -- not just for you, but for your loved ones as well.  Everyone wants to see you feel better no matter the ladder you have to climb to get there.  That is where you need to keep a positive attitude and be willing to fight to regain your health.  I did not have mine as elective surgery.  I simply either had the rest of my colon, rectum and part of my small intestine removed and have a permanent ileostomy OR I would die.  I was 5'4" and weighed only 82 lbs when I was released to come home after I had the surgery.  They had to do TPN for a few days prior to surgery so that I had a better chance of recovery.   Waiting until my disease progressed that far was just plain STUPID and now I can say with all certainty, that I wish I would have done it years before I Had to.  Yea, I would be scared if I were in your shoes.  I'm just that way.  But accepting it and still being scared is OK.  You will be such a different person once you recover.  Sorry for the soapbox.... I am rambling.

Posted 1/25/2009 8:44 AM (GMT 0)
Peggy, I like your soapbox and rambling...it's very reassuring and comforting. : )
Posted 1/26/2009 3:47 AM (GMT 0)
Hello everyone,

I am going into total colectomy surgery on Jan 30th and I already have an ileostomy and have had it 4 years and it has been the best 4 years of my life sence I was 21 and I am 39 now.

 I am worried a bit about the surgery and the complications that it holds but I am 100% for it, I am most worried about my man hood after this is all over and I guess I should not be.

Heaven for bid that not too work wright.

                                                                          Crazybirdman

Posted 1/26/2009 12:35 PM (GMT 0)

crazybirdman--like the name, do you have birds?!  Welcome to the forum :-)

While I am not a guy....I wanted to mention that you may get more answers to your "man" question by starting a new thread.  There are many guys that post and they'd be more than happy to give the man's point of view.  Just from memory, I don't think they've had any problems after their recovery period!

Is your diagnosis UC or Crohn's?  I had my proctocolectomy(removed colon/rectum) for Crohn's a year ago Feb 8th and I am SO HAPPY I did it...I too had an ileo for about 8 years prior so that part is a breeze, but don't kid yourself about "bouncing back"!  I turned 40 during my recovery and I felt much older:(  BUT the good news is that you get more strength back everyday!!  BTW, I don't feel old anymore...I hope I can be 40 forever!!!!!

Complications may/may not happen for you.  Some of us have had them, but it is not a given.  Mine was easily handled and it is just a minor blip on the rest of your life!

Will your surgery be lapro or open?  Just a few more days....

Posted 1/26/2009 6:11 PM (GMT 0)
Thank you all. I am glad I am not alone in these feelings.  My colon has been on extra good behavior for over a week and right now I am loving it.  I figure if things worsen by summertime I will be getting the surgery then because it will be most convenient anyways.  I am glad I am not crazy for feeling like this!  smilewinkgrin
Posted 1/26/2009 8:12 PM (GMT 0)
ME TOO!!! My colon honestly is trying to suck up...I know it is. But guess what? I'm on to it. I am. I'm keeping the surgery and it's OUTTA HERE!!! : )

I too am LOVING this good colon behavior. I just can't believe it! Did you know I've slept on my side and my stomach for three nights in a row?! AND I'm eating whatever I want, kind of, just b/c I can. It's so strange!!! I haven't felt this good in months!!! I really am in disbelief that I'm doing so well so close to surgery...I've been in pain for so long, and now all of a sudden there isn't any. Symptoms are still present, but NO PAIN!!!

Princess...what is your name? Just curious. I know we're to use usernames to help keep identities secret, but I feel you and I are going through such similar experiences I'd like to bond a little more. : )

: ) Robin

I am SO HAPPY that you're having such great days as well! : )
Posted 1/27/2009 3:16 AM (GMT 0)
Ohio76,

I have been tosed back and forth for 18 years about crohn's and UC. I have always had problems in the large bowl and never in the small but i have had 1 Fistulia in the past and that is why they say Crohn's but I have been bipassed 4 years and had a colonoscopy done in Nov.and my doctor said he thinks it is UC.

Yes I do have birds I raise Peafowl, Rhea,Water fowl and Exotic cattleyou can see at www.andersonsgelbviehandpeafowl.com

I saw in the where ya from forum that you are in the Akron area. Have you ever been to Mt. hope it is wright below you. I love it there and I go to a exotic animal sale there 2 or 3 times a year.

I hope I am well enough to go this spring!!!
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