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Posted 2/1/2009 6:01 AM (GMT 0)
So my UC is completely out of control.  I am beyond stressed...beyond scared...beyond overwhelmed.  You guys have been so wonderful with your recommendations and suggestions regarding what to expect and what to take with me...but I am just sick over this.  Literally, really...I wasn't able to work Friday b/c I couldn't be away from home very long.  I'm worried that my stress is just going to keep my UC up and active and I won't be able to follow through with my meetings next week.  I think I would use the word 'panic' right now.  The only other time I was like this was two hours prior to my c-section...and I still have five days to go!!! 

I feel like crying but I freeze...I feel like a panic attack is coming on but my body seems too scared to allow it to happen...I am a complete and total mess. 

Do you know what I've spent the last five hours doing?  Detailing my kitchen.  And of course I'm not even close to being done, but I feel better knowing the creases in the rubber seal on the fridge and freezer are clean (along with the fridge and freezer portions). 

What do I do?  How long did you all have to wait for your surgery?  I didn't think I would react this way because I honestly am so happy that this will all finally be over, and I can get on with my life!  But oh my goodness...this is just ridiculous. 

Why is there a smurf emoticons?  I wouldn't know when to use that.  That's weird.

Anyway, I'm sorry to keep bothering you guys.  The past few days have been really tough, and I seem to just be getting worse.  Maybe I'll call my nurse on Monday to see if there's a stronger psych med I can take just to get me through the week.  I try to whoo-sah my way through the painful moments, and when I feel my heart start to race...but that only helps short-term. 

*sigh*

Guys, thank you so much for all your support thus far.  I just cannot tell you how great it has been to have you as my little guardian spirits.  When I start feeling isolated I try to remind myself that there are each one of you that is where I am going to be...UC free...and I really can't wait to join you on the other side of the fence, but in the meanwhile I am just so scared.

Robin

Posted 2/1/2009 1:41 PM (GMT 0)

I don't think your emotions are abnormal; this is surgery and surgery is scary.  It seems that you are getting relief by distracting yourself with chores which can help relieve some of the anxiety.  I only had to wait two weeks from the decision to have surgery to the surgery itself.  I didn't have your level of stress as I was very excited with the idea of being healthy again.  Maybe you can use some visualization skills to help you cope?  Try to picture your life 6 months from now.  You're totally healthy and able to be a 100% partner in your marriage and in your child's life.  Picture yourself being able to move freely through your community without needing to know where all the bathrooms are.  Try imagining the positive changes and freedom this surgery will give you.

And of course, you can always cancel the surgery if you feel that you just can't commit to it at this time.

Sue

Posted 2/1/2009 2:21 PM (GMT 0)
I am definitely going through with the surgery...I just have to. I cannot live like this anymore. I was super excited about getting better too and still am...but I think that maybe I'm just scared about the adjustment process...having a permanet ileostomy is a big deal. I did opt for that b/c I do not want any future surgeries and possible major complications...I've had enough, thank you. : )

I feel better this morning...emotionally. Something else I think I'm battling is that the notion that this is actually happening and I will really get better this time. My heart and spirits were broken each time a different medication or treatment failed. It's also really difficult having constant UC issues for almost two years. Granted I was given a few months break during my pregnancy and nursing...but of course all good things can come to an end. : )

I've started a 911 card to remind myself of why I'm having this procedure...I'm going to add your visual ideas. It will be nice venturing out into the community without worrying about emergency bathroom needs. For instance, I want to go to the store this morning, but I do not feel comfortable going by myself with my son, as he is 1, because I may have an emergency. So, I'm waiting until my husband comes home so he can go with us.

Thanks Sue!!!

: ) Robin
Posted 2/1/2009 5:28 PM (GMT 0)
Your smurf comment had me laughing so hard i had to quit reading! you really were all over the place! i was the SAME way. I was beyond nervous and beyond excited. I'm gonna use him right here smurf   for no reason whatsoever!

This may sound really really stupid, and you can laugh at me if you want. Go in the corner (literally) turn on the absolute saddest music you can find, and CRY alot! that always calms me down and suprisingly makes me feel better. or sometimes i sit in the floor in the kitchen.
Or of course, you could always go on a 5 day bender, lol. rum could be your bestest friend, lol.
I dont think your problem is so much because you are worried about your desicion to have the surgery, you sound liek you are totally happy about that. But it's an unknown and no matter how many great stories you hear from us, it's still something that is something you don't know (that made NO sense, lol) i got rambling there.

I went in August to talk to my Doctor about surgery, he talked me into remicade, which failed me, i regret that decision now, alot.  then i went back in feburary and said that's it i have HAD it.  I actually told my dr either you take it out, or i will.  And i think i was serious.  Then i had the surgery in April.  That was a long couple of months. 

I got through it doing what you are diong though, just kept thinking of wow i can do such and such afterwards. 

 

Posted 2/1/2009 5:54 PM (GMT 0)
I'm glad I'm not the only one looking at the smurf people wondering what the??? I didn't have time to get stressed for my first surgery. I was airlifted and then they had to get me strong enough to endure the surgery. However with my second one, I drove my husband nuts. All of my kitchen cabinets were wiped out, reorganized. I grocery shopped and stocked up until he said, "Tray, there is NO MORE room anywhere for more food." Anything I could control I did, because the surgery was out of my control.
I agree with summerstorm, when this is done and you have healed (for me it is almost always 2 months to the day) you are going to be just amazed that you can get up in the morning and do what you want. Your life will not be controlled by the proximity of the nearest bathroom. I can't tell you how much fun I had going paddle boating with my boys, going for a hike or just going grocery shoppping. The stress will be gone. The bag will probably take some getting used to, Make sure you have a good ostomy nurse and if one type doesn' t work for you there are so many other choices.
You will do well.
My mantra during the hospital stay was "This too shall pass."
Posted 2/1/2009 8:15 PM (GMT 0)
Thank you so much... : )

I completely agree that it's the 'unknown' and the 'control' issues that are freaking me out. I am obsessing about toothpaste, shampoo, bread, diapers...we spent almost $300 at Sam's Club the other day...we now ownn the largest bottles of vitamins this side of the Mississippi and the largest box of Hot Pockets the produce. : ) I had all the intention to make meals and freeze them, but my work schedule has been crazy and then with my UC has been a total cramp in my style.

I just noticed that all the light fixtures need to be soaked and scrubbed... : ) ...my husband keeps telling that everything will okay whether we have scrubbed floors or not. Well...you're absolutely right, if it's within my control it does matter and it 'will' be done. : ) I'm off to scrape and scrub the bathroom. My secret is that my glass top vanity is caked with hairspray and dust...so I doubt one wipe with Windex will do the trick. Yuck.

Gosh...I just really appreciate hearing from you guys...I am 100% against drama's or any movie that's anywhere close to a tear-jerker...(my job gives me the insight to people's real life drama and struggles so I really don't like watching it as entertainment)...but...I do like Fried Green Tomatoes. Maybe I'll have someone watch my son and sit and sob. Or Steel Magnolias (which is where I originally fell in love with the name Jackson, now my son's name). *sigh*

Thanks SO MUCH!!!!!!

: ) Robin

I'd like to have a word with the emoticons people...why a smurf? Why couldn't they have something that relates to conversations? All I think of is their "la la la la la la la la la la" song...when is that ever relevent? If they're bringing back the Smurfs then why not the Snorks too? Hmm...or the Carebears? My personal favorite were the Shirt-tails. Okay, I am definitely rambling...I have a tendency to do that...nervous or not.

: )
Posted 2/1/2009 11:59 PM (GMT 0)
i love the carebears, lol. I have a couple of carebear shirts! really they should have some sesame street emoticons, an oscar for when you are grouchy, a cookie monster for when you are hungry, etc. But of course, NO red menace oh that would be awful.
I dont remeber the shirt tails.
Posted 2/2/2009 1:01 AM (GMT 0)
Robin--I am thinking of you. I think you are being quite a hero. I have such bad anxiety, I'm not working right now, and my surgery is not for 3 more weeks. I was on a real positive trend for a couple of days too and now I'm a bit of a mess. So I'm sending good vibes and prayers your way. And here's a smurf just for the heck of it! smurf
Posted 2/2/2009 2:33 AM (GMT 0)
Funny! I have nothing against the smurfs...but really?...why? I'm going to assume someone was having a little too much fun while designing those little faces. And I agreee. Sesame Street would be awesome! My husband says that each of the Winnie the Pooh characters has some sort of psychosis...of Eeore is depressed...Rabbit has OCD...Tigger is ADHD (and a little narcissistic)...Pooh has an eating disorder...Piglet is agoraphobic (kinda) and suffers from poor confidence. So, they would be good for an emotional decal. : )

We really don't watch adult shows anymore, as Playhouse Disney is on till noon and then it's Nick Jr or Noggin. I'm not saying my son watches TV all day, but if the TV is on that's what it goes to. So, my husband and I have to come up with something to get us through most of those shows after we've seen each episode a dozen times each.

sammies...I've known the surgery was our next step for almost two months, and I was extremely optimistic even when we met with my surgeon and scheduled the date. It's just been this past week or so that has really surprised me. Some days and moments I am just very at peace with the changes about to happen, and then there are my days and moments where I am scared out of my mind and feel very weak. But you know, life goes on...I keep telling myself the surgery and recovery is just a blip in time considering the life I am going to live afterward, as the life I live does not consist of much 'living'.

Oh, and the Shirt Tails were AWESOME!!! I'm saddened that they haven't come back on retro t-shirts b/c I would so buy them up.

Anyway, I think my son has finally dosed off, so I'm going to clean more. I can't leave him unattended when sleepy b/c he breaks ALL the rules. : ) Sneaky little guy. He just started running from us this week when we go to redirect him. Every day is definitely an adventure!!!

: ) Robin
Posted 2/2/2009 3:39 AM (GMT 0)
I have never noticed the surf b4! LOL smurf I have an idea idea I'm going to try smhair and use all the emoticons in this message tongue This is fun smilewinkgrin
I totally detailed my house the week b4 surgery skull Cleaning helps me keep my mind off other things. wink Plus don't do what I did nono and hurt yourself by doing too much when you get home cry (Although I did have unplanned stays at the hospital mad and unplanned houseguests while I was at the hospital confused They tried to keep things cleaned up, but I have a bit of OCD yeah (Like you couldn't tell blush ) and they didn't hang the clothes the right way in the closet..... shocked

We are Noggin o' holics here! Elliott loves that channel. cool and scool

HEY Robin! I wanted to tell you what I had for dinner last night! Bar B Q!! devil I haven't been able to eat that in YEARS! It would've sent me strait to the ER with pain and bleeding. sad And I didn't feel a thing. Then, we stopped and got ice cream (B & J's cake batter) He He He!! :-) So good. Then today I ate spicy chicken wings rolleyes (have I used that one yet?) Another ER visit pre-surgery. eyes

B4 my surgery, soneone told me to visualize all the pizza and chocolate shakes I was going to get to eat turn That visualization helped me so much! I was on such a bland diet b4 to control my u/c that I'm LIVING IT UP! :-) and you will too. yeah (I know I used that one already, but it seemed appropriate).

Why are there 3 smiles? They ran out of ideas? redface

I THINK I did it....Whew.

P.S.-I still have a hard time thinking that I will actually be healthy again. I'm very used to disappointment too, b/c when you expect medicine to work and it doesn't (over and over again) you get used to failure and then expect it. I'm still in recovery, so I don't feel 100 % yet, and I still have some meds to take, but soon I hope to be off everything........THAT'S THE POINT smilewinkgrin
Posted 2/3/2009 12:36 AM (GMT 0)
YOU ARE SO FUNNY!!!

 

I'm using a bold red font b/c I can. 

 

My son is still not sleeping...I think I'll go retrieve him soon. 

 

I'm going to start playing around with the different things I can do on posts. 

 

SO LOOK OUT!!!  smilewinkgrin

Posted 2/3/2009 12:46 AM (GMT 0)
That was GREAT!! I felt like I was reading Mad-Libs.

La la la la la la la la la la la smurf

Posted 2/3/2009 1:38 AM (GMT 0)
Well, you could use the emicons in place of curse words or other unacceptable language .  Just make up our on lingo.  For example-This makes me so mad I could cry .  nono wave that taco in my face or I will do something to make me blush .  I haven't had a smoke for 24 hours, but the devil made me do it.  yeah it was that good. shocked they want to take out what ?
Posted 2/3/2009 2:09 AM (GMT 0)

Robin, the wait is absolutely dreadful. The last few days before my daughter's surgery she got very quiet. The morning of her surgery we had to leave the house around 4:30 am. I decided to take pictures of her then (and throughout her recovery). As much as she wanted the surgery, she stood in the house and said she wasn't going. Six months later she is so happy for the surgery. I watch her enjoying life and know it was the right decision. As everyone has already said, picture all the things you will be doing in the near future. Just remember to give yourself time to heal. Physically and emotionally.

When my kids were little and my mom was still alive, she would stop by and say she needed a "grandchild fix". If she was down about something or just a little lonely, she would grab the nearest grandchild and hug away. Grab your son and squeeze away.

If you decide to start cleaning someone else's house, pick mine! Please! smilewinkgrin

Posted 2/3/2009 2:39 AM (GMT 0)
gutless1der...I like your name.  wink

 

I also like your idea of using the  confused little icons in place of devil   words.  smilewinkgrin

 

I still wonder about the smurf.  Why? smurf   

 

 

Bennie...my mother-in-law says she needs a grandchild fix too.  She just stopped by this afternoon b/c she needed one.  :-)

 

I really have so much I want to do before Friday...or Thursday afternoon/evening really blush    but my UC is super angry and I am currently laying on the sofa listening to The Bachelor, and thinking of all the things I wish I were doing...dishes, organizing, laundry, scrubbing floors... rolleyes

 

 

Don't you just love the names the cursor gives you over each icon?! 

cool I'm COOL.

scool Oh yeah?  Well I'm SCOOL!!!!!

confused  Well, I'm CONFUSED b/c we all look so silly and our names make no since at all!!!

:-)   :-)    We may look like twins but   :-) I'm :-) and   :-) I'm SMILE.

 

I SO have too much time on my hands right now.  mad rolleyes sad nono   UC.

UC is the devil !!!

idea   I KNOW!!!  I'll just get rid of it!!!  This Friday sounds good...a proctocolectomy should do the trick!  With a permanent ileo on the side...my right side please.  smilewinkgrin

Posted 2/3/2009 4:40 AM (GMT 0)
Woo Hoo for FRIDAY. Your new begining. Where did you say you were having your surgery Robin?
Posted 2/3/2009 11:54 AM (GMT 0)
I'll be at Boone Hospital in Columbia. My only concern is that I'll be staying on the surgery floor and I was there for my abscess removals and MRSA staph infection and the nurses there piss me off! I won't be as silent this time when/if they start screwing up like they did last time. I just think that any form of surgery is traumatizing and the majority of the woman the work that floor are crude. There were a select few that were absolutely amazing...but for the most part I was very disappointed.

I am really looking forward to not worrying about the foods I eat. I saw a commercial for the Arby's pepperjack melt sandwiches...they look so yummy...but it makes me cramp just watching it...it'll be an entirely new experience not having to really worry about what food will cause pain!

I'm also looking forward to comparing output stories...I loved reading that you guys find funny situations with syrup, blue gatorade, and what was it?...sesame seeds? Very interesting!

I bought yogurt yesterday so I had it for when I get home...I love yogurt and haven't had it almost two years...I can't wait!!!

Chassity, what kind of BarBQ places do you like in the city? Is Gates any good? Whenever we're up there we normally go for Red Lobster, Joes or something that we can't normally get in our isolated neck of the woods. However, if you ever want to spend a weekend at Truman in Warsaw I could take you to at three different BarBQ places that are AWESOME!!! When I was pregnant I completely oinked out on burnt ends each time I was down there. I also usually have a huge rib dinner from our local establishment for my birthday every year, but I wasn't able to this past year b/c of my flare...but come this upcoming July it is ON!!!!

I know we are really just getting to know one another via this site and our posts...but I think it is really great that we live so close...and our children are really close in age too. Perhaps some day we can meet up in KC and have lunch and do some shopping?

: ) Robin
Posted 2/3/2009 12:16 PM (GMT 0)
mmmmmm... burnt ends! yeah For some reason, I could eat BBQ before surgery, but only the meats and none of the sides nono beans, cole slaw, garlic bread, or corn on the cob, which was no fun. sad I can eat everything now! :-)

Peggy and I met on here and exchanged email addresses and phone numbers. We've been chatting it up for about a year now and are finally going to meet! She lives in Indiana and I live in Florida. Her mother-in-law has a winter home in FL, so we're going to get together while she's down here soaking up the sun! cool I can't wait!!! turn
Posted 2/3/2009 6:12 PM (GMT 0)
Yum, burnt endz...I haven't had those in while! I love summer sweet corn, I don't go crazy with it but once a week, it's great.

Cece, that is great about you and Peggy getting together:) Isn't it amazing where friendships can begin?!
Posted 2/3/2009 8:41 PM (GMT 0)
Robin-HECK YES! We'll totally meet up sometime. After you've recovered and get back to normal.

I wrote about BBQ on my random thoughts page, but I'll cute and paste it here.
Bar B Q- There is not any good place up north in KC with really good barbeque. So we went to Smokehouse. The new one at Zona Rosa. It was pretty good though, since I havent eaten that kind of food in forever. My husband was in heaven b/c he doesn't get to eat that stuff often either b/c of me. He really likes Oklahoma Joe's or Jackstack. I've never eaten Gates, but probably not. I'll ask my hubby what he thinks, but he is really picky about BBQ (you know guys and food)
And the burnt ends were really tender. YUM!

Don't let those nurses push you around! They are being paid to care for you. YOU are paying them. Tell them you'll dock their pay if they suc.
Actually, my secret to good nursing is to be super duper sweet and talkative and respectful to them. Compliment their scrubs or perfume. Then they start to actually Care about you. Make them your friends. I had one guy nurse last time who was kind of "cold." He was obviously homosexual (which is fine, whatever) but he was really pretty, smelled good, and had terrific eyebrows. So I told him that. (i mean he was wearing foundation, so I knew he'd appreciate the compliment) and I told him I felt self conscious b/c of it. He was like my best friend after that!! I really wanted him to do my eyebrows, but didn't ask him to do that......

Bottom line-be your own advocate! and always have someone there with you to watch them. (If you can)
Posted 2/3/2009 9:25 PM (GMT 0)
Chassity has excellent advice about the nurses. My husband is a nurse, and they are way overworked and underpaid for all they do. And while there are some with just totally bad attitudes the majority of the time they are just worn out and stressed and a few nice words go along way!
Posted 2/4/2009 12:58 AM (GMT 0)

Robin-

wanted to wish you the best--- quickest recovery ever....I think you are very brave... I am going to meet a surgeon tomorrow and terrified about the REAL possiblity of surgery.

Will be thinking about you Friday :))

Posted 2/4/2009 2:42 AM (GMT 0)
Robin - you have been asking some really great questions, and you should feel much more confident going into this surgery. You have a really great support system at your fingertips too!
Posted 2/4/2009 2:47 AM (GMT 0)
Ditto on being nice to the nurses!! I loved the vast majority of mine...I've known some of them for more then 10 years!!! I said LOVED because unless I visit the CR hospital floor or see them out and about, I'd like to never see them again:)

P.S. My hubby always brought them some sort of goody before I left...that always made them feel appreciated!
Posted 2/4/2009 6:30 PM (GMT 0)
I know I should be nice to my nurses...the one's I was talking about were just very insensitive and two actually caused me LOTS of pain b/c they didn't think of wetten my wound before pulling out the gauze...which I later learned is a common practice. Another nurse also only brought me 4 of my 6 Asacol b/c that's all she had in the drawer. Seriously. I was appauled.

Though I was pretty pissy with my entire situation and frustrated that my overall nurse care was less than decent, my husband brought them a huge carton of Panera bagels. We'll probably do something similar this time too...I just won't be able to keep any in the room with me. : ) My new favorite is the Cherry Vanilla bagel...YUM!

I'm staying home today b/c I threw up last night each time I had to go to the bathroom...it's so pathetic when you're doing one thing and throwing up at the same time. Eww. I was just miserable all through the night, and woke up very sore and cranky. I had to call my mom to come help with my son b/c he doesn't deserve my snappiness. I try my best to withhold any kind of negativity around him, but it's so hard when I'm in pain and having to constantly get up to redirect him. *sigh*

I have made some work calls and am busting butt to get some services lined up b/c we made our big boss at the Children's Division pissy about closing a case. Oops. So, that's caused me to do a few last minute referrals and stalking of my client to get some calls made herself. : )

But I do get out of never having to see my ucky client ever again! I'm going to visit his son tomorrow morning at school, but for the father...never again!!! I am so happy!!!

Today is quite a strange day. My emotions really are all over the place. I'm crying one minute and completely somber the next. I can only imagine how tomorrow will be. But I do feel MUCH better b/c I got the bathroom floor cleaned and am working on little things around the house I just haven't been able to do this week.

Thank you for all your kind words and encouragement! I will be nice to my nurses...and b/c I'm choosing and planning this stay I may not be as bitter about having to be there. : )
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