Dealing with post-surgery anxiety, need advice!

I received my ileostomy on July 12th after emergency surgery. I am experiencing horrible anxiety that wakes me up very early in the morning or doesn't allow me to sleep at all. There are nights I lay awake 2 to 4 hours only to fall asleep for an hour and get woken up with the anxiety again. I have meds but they don't seem to be working real well. Did any of you have this anxiety? How did you deal with it? Any suggestions would be helpful.

G'morning free dancer, I'm a regular and yes I'm an ostamate! I suffer from anxiety, but the doctor has me on medication that helps. Perhaps your anxiety did appear after the life-saving surgery that you received. Because it can and does affect you psychologically!! My suggestion would be that you go back to the doctor and explain what is happening so they can change your prescription to a medication that will help you!! Good luck, freelancer, and best wishes!!

Angelicamarie

Hi Freedancer,

I had my ileostomy surgery more than 50 years ago, when I was a kid of 15. I adjusted to the surgery very well, considering that my goal was to get back to school and to real life. I married a man who also had an ileostomy, but that never really brought us together. We divorced after 24 1/2 years, but we did have two wonderful sons, and so I'm grateful for that. Anxiety has always been a regular part of my life, and I've taken medication off and on for most of that time. But the last 3 years I've had one crisis after another, being robbed, a surgery with complications, months of infections that wouldn't heal, an infestation of bed bugs (an unintentional gift from my sister) followed by an expensive clean up, and then a fall, a bashed leg, and an emergency trip to the hospital. By Jan 2016, I was crying all the time and having more of my anxiety-based nightmares, and was either up all night or slept all day. I began to see a therapist, realizing that I wasn't coping with anything. We worked hard together, and both thought that I was having situational depression, but it soon became clear that I was in the middle of PTSD. I'd become so anxious that I didn't like being out of the house, and driving made me extremely nervous. I found that I had to learn to do things differently. The way I talked to myself was important. I was down on me for not coping with my weight gain and for the difficult relationship with my kids. Everything was making me sad, and I could find no joy in day-to-day life. The medication I was on helped some, but what was really helpful was defining what was really important in my life. I was glad to be alive (grateful/gratitude). My therapist told me I needed to laugh more, so I spent time online, actually reading jokes and watching clips of old funny TV shows. Whenever the anxiety or sadness hit, I listened to "Mindful Meditations" found on my iPhone. Just Google that on YouTube, and you'll find dozens. I was to go through another difficult year (first on 3 months of medication with side effects, then a bout of high blood pressure that kept me from going to the gym). As if that wasn't enough, I developed vertigo and had to go through vestibular therapy to get the ear crystals back where they belonged. I'm still working hard to lose weight and regain mobility, strength, and endurance, which had really taken a toll after all these "ailments". The difference now is that I'm deciding to look at the upside of life and try to cope better with the downside. The mindful meditations really do help. Best of luck to you. Marsha

Hi Freedancer,

I would think something is wrong with you if you don't have anxiety, either mild or severe. I also struggle with continuous severe depression and anxiety which leads to terrible anxiety and panic attacks, and I also have the same sleeping problems as you. I spent the majority of my life in pain, had 3 major intestinal surgeries in a 9-month period of time which has left me with almost constant pain. I was told while going through everything that all of these surgeries would give me a normal life but that's not the case. The problem is I put all my eggs in that normal life basket to get through all the rough times, it was my light at the end of the tunnel and it's what I dreamed about during the worst of it when I just wanted to give up. I am left with so much scar tissue and adhesions and nothing can be done (according to 3 different GI's) so my future isn't looking very bright. All of this has led to many other problems like not being able to work, I really tried but it was just too painful. So money is a huge issue as well. As I write this, I'm about ready to have a panic attack just thinking about everything all at once, I usually try to deal with things one at a time to ease the anxiety. I do take meds and pray a lot. This probably isn't very helpful but wanted you to know you are not alone by any means.

Best wishes

Darlene

Hi freedancer,

I too had emergency surgery because of a very rapid deterioration of my health during my first colitis flare-up.

I had a similar thing after my surgery for a while. I'd be kept awake at night thinking about everything that had happened and that could happen. My mind would wander, and I would spend an hour or two overthinking life in general with an ileostomy. For the first couple of weeks after my surgery, I would wake up in tears because while I was asleep, it was as if nothing had happened and life was just the way it used to be. I would wake up during the night and be kept awake at 3 o'clock in the morning, once again overthinking everything. I hated everything to do with the ileostomy. I couldn't stand waking up on bag change days, and I'd lie in bed dreading having to change the bag. I saw a psychologist for a while who was very helpful for overcoming that initial shock and helped me to accept what was going on and to put things into perspective a little bit more. I stopped seeing him, though, because I became a bit frustrated as he could only talk about what I was experiencing on a general level because he hadn't ever seen a case like mine.

In regards to dealing with it on my own, I had about three months between my surgery and the start of my next university semester, so I gave myself things to do. I chose to cook. I'd cook dinner instead of my parents here and there with new recipes. I taught myself to make bread as it took up quite a bit of time, especially when I was still learning. I'm not saying you have to do anything like this, I have no doubt you know what you're doing in the kitchen, but as a 17-year-old at the time, the best I could do was toast. My point is that I found that choosing a new skill to learn was the best thing I think I ever did, other than joining this site. I think it is very important to just find something that will occupy your mind during the moments when you feel down. I had plenty of down moments in the beginning, but teaching myself to make bread and learning recipes from the internet were great at keeping me occupied and focused on something other than my ileostomy.

I hope you are able to overcome this. It is a very tough thing to go through, both physically and mentally. Don't forget that you're only just over a month since your surgery, so you are still very new to this. It's been five months to the day since my surgery, and I still don't consider myself to be experienced with it in any way at all. I've got other complications that have come up recently, which has made me rapidly get into a routine for my ileostomy and to stop moaning to myself about it.

Best of luck. Don't be afraid to post any concerns or thoughts on here. I was apprehensive at first, but it's the best thing I've done in regards to learning to live with my ileostomy.

Hamish

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

The biggest shock of my life wasn't when I had the ostomy surgery, but a few years before when I was told I had colon cancer. Suddenly my life spiraled out of my control. In less than a month, I had major surgery, and had radiation and chemo scheduled. None of those in and of themselves was so horrendous - they were so big and I was so in shock, I almost didn't even know what to think about them.

What REALLY got to me was the loss of control over my life. Any time previous that there was a big life change, it was due to my own decisions. I was always where I was, doing what I was doing, because I had made a conscious decision to do so. Suddenly, everything I was doing, every place I was going - even what I was eating - was because somebody else told me to do so. The loss of control over my own life was literally staggering. I felt betrayed by my own body, and resentful of everything other people told me I had to do - even though it was to literally save my life. I, too, had the 3 am panic attacks and felt like I was at the top of the track on a run-away roller coaster.

I forget which of the many doctors, nurses, and assistants gave me this invaluable advice which helped turn things around for me. They told me that I needed to "own" my treatment. I needed to regain - in my own mind - control over what was happening to me. I looked around myself and realized that I really had no control over the treatment itself (I still had to do what the doctors told me to do), but I had complete control over my environment outside of the actual treatment. So I literally remade every aspect of my life outside of the actual treatment.

First and foremost, I stopped watching the news. I didn't listen to the news on TV, radio, or anywhere else. I stopped reading the newspaper or any magazines with "news" in them. All the news being reported was negative, and I was determined not to drag down my attitude. I changed my reading habits - I shifted from mysteries and some horror to romances and lighter reading ( I didn't read any Stephen King for over 3 years!). I set up a spare bedroom as my personal activity room, and stocked it with jigsaw puzzles, favorite books, a CD player with my favorite albums, and so on. I made it a pleasant, cozy hideaway I could retreat to any time I was feeling overwhelmed. I tried to learn new activities and downloaded new games to keep my mind active (I wasn't able to exercise much yet or do much physical). And most of all, I kept contact mainly with people who were bright and positive, and helped buoy my mood, and avoided people who would drag me down.

I "attacked" my physical condition like a race to be run, and it worked. I'm not saying I didn't still have my down days - boy, did I! but it went from being all the time to occasional. So that when my peritonitis from the perforated (radiation damaged!) colon struck, and the ostomy surgery that saved (and changed) my life once again, I already had a blueprint for coping, which shortened the time I felt out of control considerably.

Freedancer, this blueprint worked for me, but I don't know you well enough to know what will work for you. But I do know, the feeling of your life being out of your control is most likely at the bottom of many of your bad feelings and panic, and ANYTHING you can do to regain control of ANY aspect of your life will help you. A therapist doesn't have to also be an ostomate to empathize with you - because the real problem is not JUST the ostomy, but the loss of control of your life that the ostomy has brought you. Start with little things. Give up the nightly news - it will only raise your blood pressure, and you can't do anything about what is happening in the world anyway. Actually, that's kind of NOT a little thing, is it? Anyway, since you can't control your ostomy, control some other aspects of your life instead. Check out some mindful meditations, like Immarsh suggested. Keep busy, to keep your mind and body occupied.

And keep on this site - we are all here to empathize, sympathize, and help wherever we can! Keep us posted; I really hope I have been able to help a little.

I've had an ileostomy for 66 years, and I vividly remember having indescribable anxiety. Will, I be able to work, get married, have children, etc.....all these fears. Your surgery was just weeks ago. You're still dealing with trauma, loss of body image, etc. but like so many of us, you will prevail and be strong. You reached out via your post, that is a sign you're on the right path. Regarding insomnia, I think the emotional healing you will experience will help a lot. I certainly pray for that.

Half a lorazepam a half hour before bed. It makes it possible to sleep again with some degree of comfort.

Find someone to walk with. That has helped me lose weight more than anything. My walking partner does not have an ostomy, but she is a recovering alcoholic. We all have some problem or other. We don't talk about my ostomy or her alcoholism while we walk.

We talk about other things or we don't talk at all. We are up to a mile a day, five days a week. We started at a quarter mile.

I take medication for depression which started long before the ostomy. It helps. I am also trying to learn to make bread. So far, I make pizza dough.

There are many good suggestions here. I will pray for you.

I feel so very fortunate to be part of this group and hope the rest of you can enjoy the same.  We've all had some similar, if not identical, experiences.  We've handled most of them and will eventually handle them all.  What we've gone through, how we survived and in some cases got to be way better was through a combination of professional assistance, trial and error, self help and the sharing with others like us right here at MAO.  Despite the similarities we're all different from each other and our responses to therapeutic advice and techniques might be different.  We've all been traumatized in some way and suffered the physical, psychological and emotional symptoms.  We have each other and it's not to be taken lightly that we really try to help each other so our lives might be better and have even more meaning to so many others in need.  

Let's continue to be who we are for each other and cherish the gifts we share.

Sincerely,

Mike 

Wow.

It's weird to wake up from a nightmare that you had a colostomy and to wake up and, by golly! You really DID have a colostomy!! That is my own daily regime.

So... is your anxiety a physical or biochemical thing? Because mentally, you had an ileostomy, it really happened, you can't undo it, time to move on to the next step.

I'm not belittling your experience. But you need to spend your efforts reaching and surviving the New Normal.

Turn your stress energy into sheer ambition. That's what survivors DO.

If you're over 40, you're probably going to spend a few hours awake at night no matter how anxious or happy you are.

Personally, I think 3am Pilates exercises are totally underrated. You might like them--I do!