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surgery in a few hours, not doing well mentally

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Posted 8/24/2015 11:09 AM (GMT 0)
Hello all, I am going in for my first surgery in a couple of hours. I am going to do do a Jpouch but first need to do step one. I am freaking out about waking up with the bag. I went to a support group for ostomy wearers and met some very helpful people. I know I am doing the right decision, but am afraid of my reaction when I wake up. I am afraid I will loose it, either have a panic attack or get"violent" like loose my temper and start yelling or swearing. AS practice for the surgery, the support group gave me some 2 piece Hollister bags to wear as a dummy run. It did help me feel better at first. I feel like such a baby that I am afraid of this, even though I have UC for 15 years and now have a cancer scare. I think I needed to vent as I have only slept for a few fitful hours.
Posted 8/24/2015 12:32 PM (GMT 0)
Good luck!!!! you're probably already under, but... don't worry about the aftermath, you will find a lot of support & advice here. And barring any complications, you're going to feel so much better, physically. Give yourself a break, go easy on yourself, & just rest & heal.
Posted 8/24/2015 12:54 PM (GMT 0)
I agree with Eva Lou. When I had my surgery, despite the pain and other discomforts from the operation, I felt better in some sort of fundamental way as soon as I was out of the immediate fog. The bag I had been dreading was just an item of curiosity. Someone brought in a newspaper, and I found myself looking at the travel section for the first time in a year. And I wasn't nearly as sick and especially not for as long, as most of
the folks here who have dealt with UC and Chrohn's for years and years.

Good luck, and let us know how it goes.

Ann
Posted 8/24/2015 2:18 PM (GMT 0)
You will do fine. Just think, you do not have to worry ever again about colon cancer. I have had two blood cancers. No fun. The bag is kind of a "trip." I am not one bit turned off by my new plumbing; rather I am obsessed by my stoma; it is my new best friend. The whole appliance thing becomes second nature very quickly. Just make sure you have a good WOCN (nurse who specializes in stomas) and stay on this site. I am 9 weeks out and the veterans on HealingWell are a wealth of info. And, remember to walk, walk and walk some more. Best medicine for recovery.
Posted 8/24/2015 2:34 PM (GMT 0)
Guess I am the odd one here. My surgeon told me from the get go that I was NOT a candidate for j-pouch. This was for several reasons. I was a LOT sicker than I thought I was. You can say I was in a state of denial. I suffered with ulcerative proctitis for twelve years before finally deciding on surgery. I ran the gamut of meds and they were killing me. So it was a toss up on what would kill me first, the disease or the meds. My GI doctor refused to send me to a surgeon!! All he wanted me to do was try more and more meds. I suppose because I was one of his "older" patients I was disposable, at least that is what I came to believe. Long story short, I welcomed "the bag". It saved my life! I am now 69 yrs old and have been living with the bag for over five years. Best of luck to you! You are probably undergoing surgery at this moment. I am keeping you in my prayers. OH...I forgot to add, I found my surgeon online, researched him and decided to go to him. He did things a little differently than most, he left my anus, but did take the rectum and colon. Last year the disease came back and attacked my anus, but things are under control now and my new surgeon (the one who operated on me is now retired) does not see any reason to remove the anus.
Posted 8/24/2015 3:17 PM (GMT 0)
I will be going under in a few more hours so I have had the pleasure of reding your posts and they are an inspiration to me. thanks
Posted 8/24/2015 6:01 PM (GMT 0)
I just wanted to offer you all the best today. You are not a baby, this is life changing stuff. All of your feelings are completely normal! I am going to tell you what my surgeon told me as they wheeled me into the OR for my first surgery for a J-pouch (I was crying on the way in). She said if you aren't nervous or even a little scared then we would be worried about you. I had 2 days to prepare for my first surgery of three towards a J-pouch. I was terrified of the surgery and having a stoma. I found it hard to see the stoma for the first time but understand you will be able to manage it. I was so ill before the surgery that it was amazing to me at how quickly I started feeling better once the diseased colon was out. In a few weeks managing your stoma will become as routine as brushing your teeth. There are many people on here that helped me tremendously with their posts and information. I am not going to tell you there won't be frustrations, because there will be but the end result is worth it. I had my last surgery 6 months ago and my life is great now. I know yours will be too. When you are feeling up to, do let us know how you are getting along.
Posted 8/24/2015 6:12 PM (GMT 0)
Best wishes for your surgery. Unlike others here, I only had a temporary ileo due to a sigmoid volvulus. I went into the hospital and was immediately given some pretty hefty pain killers. Then, the next thing I knew, I woke up in a hospital bed with a bag on my lower right abdomen. Truth be told, I was too out of it to fully comprehend what had happened for at least a few days. When I could comprehend, I didn't get mad or upset. That might have been because I was told I would be reversed in 4 to 6 weeks (actually took 10 weeks due to some complications as well as a bout of hospital induced pneumonia).

Once I got home, yeah, it was a pain in the abdomen to have the bag. It was probably harder on my wife, as she had to help clean me and had to help put the bag on and, most of all, had to listen to me. But it all worked out.

My one piece of advice for you is to get up and walk just as soon as the medical folks tell you to. It'll help the healing processing immensely.
Posted 8/24/2015 6:52 PM (GMT 0)
thanks to all, I am loading up the car and heading in. All these posts mean the world to me
Posted 8/24/2015 7:03 PM (GMT 0)
Good luck! Having the bag sounds like the most awful thing in the world but once you get used to it, it's really pretty easy. I woke up this morning, emptied, showered, got ready, been working. No issues, no emptying since when I woke up. Bag isn't full or uncomfortable. i don't even feel it. It's definitely difficult to get used to and at first, it's scary. You don't know whether you can trust it, will it leak or bulge, look awkward.. After a while, it's not really something you think much about. It's also temporary so that is something to keep in the back of your mind.
Posted 8/24/2015 11:06 PM (GMT 0)
Best of luck! The end result of these surgeries is so worth it. I only wish I had done it sooner. Wishing you a speedy recovery!
Posted 8/25/2015 2:02 PM (GMT 0)
keep us posted on your recovery, I hope you woke up in a good state of mind in the recovery room! Everyone here can definitely relate to your concerns and any issues you'll encounter. I'm only a few days post op and have learned more from this site in a week than a WOC nurse could probably have taught me in a 6 hour session! I can tell you like every has told you so far, the bag is not going to be your enemy, I'm already used to mine being there and I'm 8 days post op! You'll do great. Hope to hear everything went well for you
Posted 8/26/2015 11:58 AM (GMT 0)
HI johnlamb. By now you are out of your surgery.Take one day at a time....wishing you all the best!!
Posted 8/29/2015 2:36 AM (GMT 0)
Just got home from Surgery. 5 days. The stoma had instant output, which allowed me to go on clear liquids right away. Some nurses and CNA's wer great, they literally saved me. Some were not going to be welcome into my personal journey back to life. There are those out there that do things for a JOB and then there were the ones with passion. An elderly CNA would wake me up as her shift started at 3 AM just to hug me. Just to do that was worth more than its weight in gold. 2 young studs who were RN's, literally bent over backward to make sure I would be cleaned up and fresh for my wife's visit, shaved me, fixed my hair, cologned me, told me that there was no way she would be afraid of of me having a stoma.
Posted 8/29/2015 5:09 AM (GMT 0)
That's so cute. Sounds like you had a good experience. I had a few really great nurses too, and a few who were just not around at all. Most of them were women. I had one man who was really caring, he went above and beyond for me. It's weird how much these people impact us. Are you home now? Get lots of rest, that's the best thing for you.
Posted 8/29/2015 3:10 PM (GMT 0)
So glad you are home!! Seems like there were no setbacks for you while in the hospital.....am I correct you had no setbacks such as infection etc? Yes there are many wonderful and caring nurses out there. Sounds like you were mostly blessed in having such great caregivers.

Was wondering if after the surgery, did you have some drains in you?
What kind of diet have you progressed to at this point?

I am scheduled for my surgery (total proctocolectomy ) this Friday.
Any tips to share to help me get through this next week?
Posted 8/29/2015 3:53 PM (GMT 0)
Great news, John. Best wishes for a strong recovery!
Posted 8/30/2015 3:01 PM (GMT 0)
twingirl, It was not as easy as the Docs and nurses made it out to be. Waking up from the surgery, none of the pain meds or anti anxiety meds were there as they promised me pre op. They said that they had loaded me up with plenty and i would not get to self administer for at least a couple of days. not having control pissed me off.

you do wake up in a new reality, there is definitely something missing from your body and new things are hanging off you like a gypsy caravan from 1500. there is still a drain, I called it the grenade, and it filled up every hour. did not hurt a bit but it is still a bit freaky to see it.

People in the hospital were downplaying everything, saying, "it really is not a big deal, ....." that kind of BS. Well, it still is a big deal because you can not even do a sit up and move your self over in bed. Small things, yes, especially in the larger picture. But to have people down play got annoying. Also be prepared to have a lot of stuff still come out of the anus to greet you. like shutting off a garden hose, there is still a lot of stuff left in the line. I could not sleep at first because I felt like I was having diarrhea every half hour. A nurse finally stuffed my butt up with feminine products and I wore a diaper for night one.
lastly, PAIN is highly subjective. after first day the pain subsides mightily: it is more of an annoyance. Just walk around the ward. The more I walked, the better I felt. I was able to joke around more as people start to know you and they would make it more fun when walking. I used to ask a couple of nurses to help me dance. One CNA would hug me after every 5 laps.
Posted 8/30/2015 4:18 PM (GMT 0)
Thanks for your honest input johnlamb. I agree some people sugar coat the reality of it all. My feeling is I rather know things ahead of time.
I hope you are feeling better every day.
Posted 8/30/2015 7:58 PM (GMT 0)
Any surgery and going under anesthesia is a big deal. Anyone who says otherwise is full of crap. And this is a big surgery. I guess they downplay it as to not get people too riled up about it. But I'd rather someone be honest with me.

Hope you're feeling stronger each day now that you're home. :)
Posted 8/30/2015 10:53 PM (GMT 0)
Glad to hear you are getting along very well. You are absolutely right that the walking helps so much. Sounds like you had a fairly good experience at the hospital. I had my surgery at Cleveland Clinic. They have a whole floor for people like us recuperating from this type of surgery. During one phase of surgery, a fellow patient, an older gentleman would always ask me if I wanted to race. I told him he would win. I loved how some of the aides and nurses remembered me from my previous surgery. They were wonderful. One aide came on night shift and she said I remember you. I didn't remember by name but when I put my glasses on I said I remembered her smile and how nice she was to me. She said I've been her 20 minutes and you're already my night. I could not have asked for better care. Keep up the good work johnlamb!
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