HealingWell
Search Close Search
☰

It's getting close and I'm getting nervous....

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/12/2014 2:01 PM (GMT 0)
As my surgery date gets closer, I'm finding myself in need of a little encouragement . Yesterday I went through all of the pre-admission testing...a long tiring day. Tomorrow I meet with my stoma nurse. The other day I went to a local ostomy support group meeting and I think that brought me down a bit. Everyone there was much older than me, and no one had their ostomy because of UC (it was a small turnout). I kept looking around saying to myself, I don't belong here and I wanted to run. But in a week, I will belong there. It's so hard for me to believe that this is happening. For lack of a better word....This crap is getting real!

I know that I'm doing the right thing....I can't go on this way anymore. I don't have any doubts about that. I guess I'm just getting scared. There's so much information and terminology that I don't quite understand yet, but will soon.

So, what I'm asking is, did any of you experience these feelings as your surgery date got close? How did you deal with it?

Thanking you again for all of the incredible support and information I've received here. You really are a group of very kind, helpful and compassionate people and I am so grateful to have found this board.
xox
Posted 6/12/2014 3:41 PM (GMT 0)
I'm pretty sure everyone feels/felt much the same way. I did before my first surgery, and I am now. I started a thread on this board as I wasn't sure whether to continue with j-pouch surgery, or stick with my end ostomy. I made my final decision yesterday, so with surgery scheduled for 18th June, am starting to feel pretty nervous myself!
Posted 6/12/2014 3:43 PM (GMT 0)
CarenZ,

I was going to write this in embersglow1's thread about what to tell your family/friends of why I chose to have surgery. I did it because I knew that I was going to feel better. As crazy as it sounds to some, I was actually excited to have surgery because I was so sick and I was missing too much of my life.

My situation is a little different than yours because I will have a j-pouch but after living with a temporary ostomy for about the last 8 months of my life it has become part of me. I really do not notice it that much or even worry about it when I am out. At first it was an adjustment for me learning all the terminology and the equipment but that went away quickly after living with the ostomy. As soon as you find the right supplies for you that was my biggest problem was using supplies that didn't work for me. After I got that figured out things were smooth after that.

I remember after living with my end-loop ostomy for over 4 months I really didn't want to go back for the j-pouch surgery because I felt so good but that was my plan from the start so that's what I did.

Good luck on the 20th and keep us posted. You are making the right decision, you've used most of the meds and surgery will finally make you feel well again.
Posted 6/12/2014 6:02 PM (GMT 0)
Hi CarenZ

Yes, I definitely have had the same feelings and thoughts that you have written about. The bigger the decision, the bigger the worry. You said it in your post "you can't go on like this anymore".

Believe in yourself and be gentle and patient during your recovery. Things will be hard for a while, and we will all be here for you. Then, one day you will write in and give advice to others going through the process. We all lean on each other.

Keep us updated :)
Posted 6/12/2014 6:25 PM (GMT 0)
CarenZ,

Yes, all your feelings are normal. We all had them. It is all very scary and overwhelming. I still (2 months after surgery) haven't found the perfect set of supplies and appliance changes take an hour, so it still gets me frustrated. The biggest problem for all the emotions is the illusion of choice. We are acting as if this surgery is a choice, but is it really a choice if the other option is to continue suffering in pain with medications that don't work, having accidents, etc.? If we think it's a choice then we keep second-guessing ourselves. But let's face it, if it's come to this, it really isn't a choice. It's the only way to feel better. And I'd avoid those support groups if I were you. Younger people with IBD tend to stick to online forums for support. My WOCN tried to get me to go to a support group but admitted there'd be no one even close to my age (37) or situation (Crohn's) there. I've gotten much more support and education on these boards than anywhere else.

You're going to be fine, and feeling much better pretty quickly after the surgery. You'll learn everything you need to do and have, and there will be plenty of medical people (and us) to hold your hand through it all. Good luck with the stoma nurse tomorrow. Make sure to wear the clothing you wear most often; it will help in determining the right location for the stoma. I wear jeans and t-shirt probably 350 days out of the year, so I wore that.
Posted 6/12/2014 6:31 PM (GMT 0)
I think the appt. with the WOCN (stoma) nurse will be helpful- they really know their stuff, & to them, the ostomy is no big deal. It's sort of a relief to talk with someone who just takes it in stride. And makes it easy to understand, all the product talk, etc. When I met with mine prior to surgery, I brought up my entire box of product samples & went thru the whole thing! And I have tons- everything from strip paste, to sure seals, to barrier rings, to venting thingies... most of which I've never used! Getting nervous is understandable...
I second bania's post- is it really a choice at this point? What other viable options do you have? Not many, I'd guess. And the support groups do tend to be older people, cancer patients, etc. My WOCN told me that because I was younger, pro-active, computer literate, etc. I'd have much less trouble than an older ostomy patient. Just dealing with everything, supply orders, etc. I can't imagine going thru this without having a computer! I know it seems like a lot to learn, but it really isn't- things just sort of fall into place afterwards, they really do.
Posted 6/13/2014 12:49 AM (GMT 0)
I'm so glad I reached out to all of you. My family and close friends are incredibly supportive...but I don't think you can truly relate unless you've experienced something similar.
Your words of encouragement are exactly what I needed today and I'm feeling so much better. Unlike yesterday's support group meeting, I'm honored to be a part of this group. Thank you all so much.
xox
Posted 6/13/2014 9:02 AM (GMT 0)
I see your surgery is two days after mine, so if it's any small consolation, one of us here will be in Hospital going through the same, when you are.
Posted 6/13/2014 10:33 AM (GMT 0)
@Silent Lucidity, I'll be thinking of you and wishing you well. We'll recover together!
Posted 6/13/2014 2:32 PM (GMT 0)
I just had surgery three weeks ago although I had the jpouch formed. So far, though, I have had no big problems with bag at all. Its so nice to not be on the toilet as much, and after all the diarreah I have dealt with for the past 4 years, it really isnt bothering me. Changing my appliance only takes about 20 minutes I think. Granted I don't have much experience, but I think you will have so much more freedom and you will notice that pretty quickly.
Posted 6/13/2014 5:39 PM (GMT 0)
   Hi Caren!   From the time I decided on surgery...May of 2010 until the day of my surgery...June 28, 2010...things moved so swiftly that I don't think I had the time to ponder or wrap my head around the full impact of my decision.  All I knew was that I was sick of being sick.  I suffered with ulcerative proctitis for twelve LOOOOONG years.  Ironically, the disease never traveled further into my colon.  Unfortunately, as my surgeon explained, with that disease, when the rectum must go, so must the rest of the colon.

     My GI doctor refused to send me to a surgeon.  I suppose he thought since the colon only had minor diverticulosis, it was a crime to yank it all out.  However, that rectum was a mess shocked .  I missed out on so much during those twelve years, weddings, funerals, bridal showers and my grandson's first Holy Communion.  I found my surgeon online.  I knew I didn't want my surgery performed here in south Jersey.   The hospital and surgeon I chose were located in Philadelphia. 

     At my first visit to the surgeon I can remember him looking into my rectum and saying..."OH MY".  He did explain why he couldn't just take the rectum and he said I was NOT a candidate for j-pouch.  It really didn't matter to me.  All I knew was that I wanted my life back.  Dr. Fry wanted me off the Humira for at least six weeks before surgery and he would have preferred me to be down to 10 mgm of prednisone.  I also had to pass a stress echocardiogram.  I believe he requested that because I was 63 at time of surgery and had a lot of other health problems.  The most significant problem, other than the UP, was my uncontrollable high BP.  I had readings of 216/110 even while taking three different BP meds.  That was thanks to prednisone!!!  I also had prednisone induced diabetes.

     Long story shorter....here it is almost four years later....sure I have a "bag"...BUT....I do not have UP...I do not have high BP (easily managed with only 1 pill a day 130/70 yeah )...I do NOT have diabetes!!!

I'll be 68 in August and plan to dance the night away at my 50th high school reunion on August 1st.

     You'll be fine....think how well you are going to feel!!  God bless!

Posted 6/13/2014 5:55 PM (GMT 0)
Seems like a lot of us are having surgery, my 3rd surgery is on June 25th -- the take-down.

I did my bag change last night (after 6 days) and it took me 4 minutes max with all the prepping and cleanup. I remember the first few months of having an ostomy it took me 20-30 minutes to change my appliances and they would only last 2-3 days. It takes a little time to learn what works best for you, which products work best for you and how to use them but if you are patient and ask a lot of questions then it will get easier with time and experience.

Now I bearly notice my ostomy. I'm going to a Mets game tomorrow at CitiField with a bunch of friends and eating overpriced food, drinking expensive beer and watching an underwhelming team. The last 2 years I wouldn't have even dreamed of it because it was so unrealistic for me. CarenZ, this ostomy will make you feel so much better and you'll be able to do things again that aren't currently able to do.
Posted 6/13/2014 6:23 PM (GMT 0)
CarenZ,

I hope that being here, receiving all our understanding is encouraging to you. My colectomy and connection from my small to rectum was elective, and I was nervous but so ill that I couldn't wait to have it a distant memory. Unfortunately, I became septic and an ileostomy was performed. My personality has always been "always be prepared" and "prepare for the worst and hope for the best," and how unprepared I was for an ostomy. I knew nothing. I was so mad at myself. It lead to a deep sadness for the rest of the weeks in the hospital and months at home, until 3 months later when I found this website.

You are far ahead of the game, and going to a support group is fabulous. I was 37 when I started going and I get out what I expect from it. It's all individual. I went to my regular meeting yesterday, and they were discussing an upcoming event. There will be doctors, WOCN's, stoma clinic, etc. Last years, which this years is anticipating to be much larger, was FULL of people, more young than old, that are getting surgery soon. They were happy to have received all the information they did and they were in a better place mentally. These support groups allow me to connect with others, allow me to view vendor appliances, and get needed info from the WOCN.

I hope that your mind will soon ease with anxiety. Surgery is surgery and your emotions are understandable. Again, we are here for you and hang in there!!!!
Posted 6/13/2014 9:54 PM (GMT 0)
    ks1905...the Mets may be underwhelming...but didn't they beat the Phillies?  I am taking my sign down from out front which reads..."HOME OF A PHILLIES FAN"....I think I'm a jinx.
Posted 6/13/2014 10:51 PM (GMT 0)

ks1905 said...
Now I bearly notice my ostomy. I'm going to a Mets game tomorrow at CitiField with a bunch of friends and eating overpriced food, drinking expensive beer and watching an underwhelming team. The last 2 years I wouldn't have even dreamed of it because it was so unrealistic for me. CarenZ, this ostomy will make you feel so much better and you'll be able to do things again that aren't currently able to do.

LOL. At least at Citi Field you can get Shake Shack :-D
Posted 6/16/2014 6:55 PM (GMT 0)

Christine1946 said...
ks1905...the Mets may be underwhelming...but didn't they beat the Phillies? I am taking my sign down from out front which reads..."HOME OF A PHILLIES FAN"....I think I'm a jinx.

The Mets had 2 hits for the entire game, totally underwhelming. It would have been more exciting if they were no-hit. The Mets and Phillies will be battling for last place in NL East this year.

Pluot said...

ks1905 said...
Now I barely notice my ostomy. I'm going to a Mets game tomorrow at CitiField with a bunch of friends and eating overpriced food, drinking expensive beer and watching an underwhelming team. The last 2 years I wouldn't have even dreamed of it because it was so unrealistic for me. CarenZ, this ostomy will make you feel so much better and you'll be able to do things again that aren't currently able to do.

LOL. At least at Citi Field you can get Shake Shack :-D

I didn't make it to the Shack Shack but the game was so boring that we decided to go Pat LaFrieda's Chop House in the Stadium from the 5th-7th innings and have dinner, it was a 4PM game. I would definitely go back again just for the food at Pat LaFrieda's and skip the game entirely.

It was my first time to the new Citifield and I don't know if it was where I was sitting but they had some of the nicest and cleanest public bathrooms that I've used in a long time. I had to empty my bag a few times during the game it was no big deal with plenty of clean stalls.

After the Mets game we went to the Beer Garden in Astoria to watch the World Cup and drink beer.

I was stressing over going through Security at CitiField with my Ostomy bag so I brought along the card from the hospital saying that I had an Ostomy and to please use discretion/courtesy while patting me down. I didn't even have to show the card, they just waved the security wand around my body and that was it.

These are things that I use to do all the time pre-UC or when I was in a really strong remission but couldn't even consider them the last 2 years because I was so sick or worried about being away from a bathroom and eating/drinking. Having an ostomy has allowed me to do things that I want to do and when I want to do them, it's nice to actually be able to do this stuff again.

Caren,

I'll be think of you on the 20th, please post back when you feel up to it.
Posted 6/19/2014 1:52 PM (GMT 0)
Tomorrow is my big day and I'm ready!!! I can't wait to get the surgery over with. I'm excited and looking forward to my life without ulcerative colitis. A new beginning. :-)

Thanks to all of you for helping me get to this very healthy emotional place. You gave me the strength and the confidence I needed, just when I needed it the most. :-)

I'll check in as soon as I'm able. Have a great weekend!!
xoxox
Posted 6/19/2014 2:21 PM (GMT 0)
it's normal to feel last minute jitters. my wife even says that i walked off in the gown to the surgery prep looking like i was headed for the gallows. what helped though was to realize that cancelling or running away would solve nothing and put me right back in my neverending purgatory. so happy i got the surgery but i remember how terrified i was and how wracked by indecision.
Posted 6/19/2014 2:39 PM (GMT 0)
I'll be saying prayers and sending positive thoughts your way, Caren! Relax as much as you can today and try to not worry TOO much!
Posted 6/19/2014 3:07 PM (GMT 0)
CarenZ,

Just a quick suggestion, call the ostomy product manufactures like Hollister, Coloplast and Convetec either today or while you are in the hospital and ask them to send you some free samples so you have some products to try and use when you get out of the hospital.

I'll be thinking of you tomorrow, please update us when you feel up to it.
Posted 6/19/2014 3:33 PM (GMT 0)
Best of luck tomorrow! If you're prepping today- this will be the last time EVER! YAY! Things will work out great, don't sweat the small details.... and yes, post when you're able!
Posted 6/19/2014 8:34 PM (GMT 0)
Best of luck! Welcome to life without UC!!!!
Posted 6/19/2014 9:00 PM (GMT 0)
Best of luck and speedy recovery!
Posted 6/19/2014 9:05 PM (GMT 0)
     Best of luck Caren...sending prayers and wishes for a speedy recovery. yeah
✚ New Topic ✚ Reply