I'm really struggling..

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gracifer

Joined
Feb 22, 2011
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I had surgery - bowel resection / illeostomy 3 weeks ago. I had to have the illeostomy to 'rest' my bowel because I had two fistula's - one to my abdominal wall which was pretty damn painful even though small and was a general mess inside.
The thing is though, I was kind of hoping i wouldn't need one, the surgeon always told me that it was a 50:50 kind of thing, and I'm sorry to say this, but I've always considered having one to be my worst nightmare. When I woke up with it i thought I could cope with it. I could, as other people - nurses etc- where dealing with it. I got really ill in hospital during recovery - my bowel obstructed itself and so i vomited none stop for a week until they put in a NG tube. Then, on Friday I had to go back as I formed an abscess as the bottom of my wound, and for a while people thought it was a fistula again but its just an infection - phew.
But... I'm really struggling with the stoma. Yes, it's only poo and yes it's temporary (3 months / year tops) but I hate it. I can't clean it myself because it's constant and so I have to get help from my parents (i'm 22) and it always leaks at night. I feel so alone though, everyone I know seems to think that because I've now got rid of the crohn's in their eyes and have this thing I should be happy. I'm not. I seem to spend my time with fluacting emotions ranging from frustrated, angry to crying in shops changing rooms. I don't know how i'm going to cope with this for so long. All I want to be is normal.I'm scared of the future. I know I should be happy - I just wish people would understand how I feel about all of this..I just feel so alone. Will this pass? How did you guys cope?
 
I am sorry you are having trouble adjusting Gracifer. It's always more difficult in the beginning. If it's a surprise as well...even worse. However, you have got a stoma, and you have to deal with it as best as you can.

Your stoma should settle down as far as output goes, the first 6 weeks can be the worst for output. As for not being able to clean yourself, you will learn because you must. Stan likes to 'cause a scene' when I'm changing occasionaly..and that's what those wipes are for...so I can shove it in his gob! Not literally of course, but to catch and wipe.

If you continue to have leaks, keep measuring the stoma it will keep shrinking for the first 2 months. And get hold of that stoma nurse and tell her, 'this isn't working!'

It WILL get better!! I promise you it will. You just have to get your head around it, and deal with it the best you can for the time being. You are also just out of major surgery, and being emotional is par for the course. Give yourself at least 6 weeks after surgery to feel like an almost normal person.

If you need help with depression, and it isn't unusual in the circumstances, your GP can help too.
:ghug:
 
Hello Gracifer,
Terriernut has put it so very well,I have nothing to add except a deep sympathy
for what you are having to endure.
It is everyone's nightmare and to waken from surgery with a stoma cannot be easy to cope with.
You are allowed a few tears with this situation., I am sure I would feel the same as you.
At least it will not be forever and it does relieve some symptoms.
Hope you will adjust very quickly .
Feel better soon
Hugs and best wishes
Trysha
 
You have been through a lot in a very short period of time. It is a big lifestyle change you have to adjust to now and it is absolutely understandable for you to feel the way that you do.

I just wanted you to know that you are not alone and you have all of us here to help you through. I hope you start to feel better very soon.

:hug:


gracifer said:
I had surgery - bowel resection / illeostomy 3 weeks ago. I had to have the illeostomy to 'rest' my bowel because I had two fistula's - one to my abdominal wall which was pretty damn painful even though small and was a general mess inside.
The thing is though, I was kind of hoping i wouldn't need one, the surgeon always told me that it was a 50:50 kind of thing, and I'm sorry to say this, but I've always considered having one to be my worst nightmare. When I woke up with it i thought I could cope with it. I could, as other people - nurses etc- where dealing with it. I got really ill in hospital during recovery - my bowel obstructed itself and so i vomited none stop for a week until they put in a NG tube. Then, on Friday I had to go back as I formed an abscess as the bottom of my wound, and for a while people thought it was a fistula again but its just an infection - phew.
But... I'm really struggling with the stoma. Yes, it's only poo and yes it's temporary (3 months / year tops) but I hate it. I can't clean it myself because it's constant and so I have to get help from my parents (i'm 22) and it always leaks at night. I feel so alone though, everyone I know seems to think that because I've now got rid of the crohn's in their eyes and have this thing I should be happy. I'm not. I seem to spend my time with fluacting emotions ranging from frustrated, angry to crying in shops changing rooms. I don't know how i'm going to cope with this for so long. All I want to be is normal.I'm scared of the future. I know I should be happy - I just wish people would understand how I feel about all of this..I just feel so alone. Will this pass? How did you guys cope?
Click to expand...
 
I'm so sorry you're struggling Gracifer.
I found the first three months with the Stoma a real struggle - on all levels. It was physically painful, it just poured its guts out, it was psychologically challenging and emotionally draining. And I hated it. I cried most days and was just miserable.

Misty (Terrier Nut) and some of the others in the forum gave me some great advice to follow. Have one little thing to achieve every day. Something like walk five minutes, or walk from the kitchen to the study and back. Something achievable. These little goals got me through.

I had never really been depressed before either - so found that really confronting. But I got through it one day at a time.

Hang in there - it does slowly get better.
My first day back at work - I wasn't sure if I could walk the 50m from my car to the classroom. But now - I could easily jog it.
You will get there. Just be patient.
Also draw on the collective strength and wisdom and support on this forum.
It was this that got me through it.
I'm not sure I would have survived without it.
I hope you start feeling better soon.
 
Dear Gracifer, My first stoma was a surprise too. The surgeon had mentioned it in passing and the stoma nurse marked a spot on my abdomen but I didn't really think that it could happen to me. I mean thats the sort of thing that happens to other people right? When i woke from surgery and realised I had one I was really upset too. Pooing into a bag is the most unnatural thing in the world. I was worried that it would show, that it would smell, and of course had to deal with changing the bag and cleaning up the poo. My stoma put out a huge output, 3+ litres a day so there was never a time it wasn't spurting out. Waking up with a leaking bag was frequent.
However its amazing how quickly we adjust to changes in our life. The first couple of months were hard but I soon learnt to do everything and you will too. I realised that other people couldn't see it or smell it and unless i told them no-one knew I had it. You will naturally be feeling more depressed as you are recovering from major surgery but that will pass and if it doesn't go and see your doctor - lots of us have sought help for depression or to help us deal with this illness. Strong people seek help when they need it.
Its totally understandable to be feeling the way you do, all I can say is that it does get a LOT easier to deal with, to the point that a lot of people wonder if its worth having the reversal.
If you are having any problems then there are heaps of people here willing to give advice, your stoma nurse can help plus all the companies that supply the bags etc can help with advice about the different products available to help. Don't hesitate to post any questions here - doesn't matter how personal or embarrassing the question, we've all been there.
And no, there is no reason for you to be happy about it, all I can say is that in time you'll be fine with it and before you know it you'll be getting the reversal.
 
Hi Gracifer.

There seem to be two things that need attention - 1. thickening up of your output and getting some control over it and 2. stopping the leaking.

You are only a very short while away from your operation and your body needs more time to get over the trauma of it. Most people find that their output lessens as time goes on and they also find foods that will help to thicken up the output. There are medications like Imodium that can help with this, too.

Then you need to try different brands and types of stoma bag combinations until you find one that suits you and doesn't leak. Unforunately, this is really just trial and error, but there are lots of us ostomates here to give you help with this.

Do you have a stoma nurse? She should be able to help you, too.

And don't worry, lots of us have cried in shop's changing rooms and all sorts of other places. Before I had my major op, I couldn't even talk about having a stoma without bursting into tears. :hug:
 
I don't have anything new to add that everyone else has already said. I just wanted to offer you my support and tell you that it will get better!
 
Me too. I can agree with the shock, the depression and the feeling of wanting to be 'normal'. I think most of us ostomates have been there. Please know that I am thinking of you and sending my support.
 
I also just wanted to jump in and tell you aren't alone. I'm just over two weeks out of surgery and still learning to deal with everything that comes with life with a stoma too. The people on this board have been a fabulous support for me. Reading others Stories will give you hope. It's tough but so are we and we can get through this.
Just keep looking forward and remember that it's all going to get better.
 
You are not alone. There are those who care deeply, while it is embarrassing, they will always help you, and only want to try to make you happy. And you will be happy. It's an awful age for this to happen, but you will be happy buddy. Take car of yourself.

Twitter:- _IJP_
 
I don't have a stoma so can't say I know how you feel but to me everything you have said your feeling sounds very natural in your circumstances. Why should you be happy? You feel how you feel, especially in this adjustment period. Just try to stay positive that things will get better and you will learn to deal with it. x x
 
I had this same surgery and found output to be almost uncontrolable. I found that if I changed first this in the morning before I got moving around too much I was ok. Eat banannas and marshmallows to thicken up the output. I would do several bannanas and serveral big marshmallows a day. Also immodium in liquid form was a godsend at first. Can also do a tablespoon of metamucial several times a day. You need to talk to your doc fast. As for the leaking, yes, as the others said, the area is still shrinking. I went though 5 changes in one night when I first got my stoma and several different brands and styles before I found what worked. Be sure to call Convatec, Hollister, and other companies. All will send a stoma kit with several samples. They also have great stoma nurses on staff that I found quite helpull. Also there are several peiple with You Tube vids that can be a big help in seeing how to change your bag. You WILL get this down. After the first month, I could wear a bag for 7 days. I HIGHLY reccommend using eakin seals and using the whole ring not just a rope section. Convatec can help with that one. Let us know how you come along.
 
I'm 24 and have a temp. stoma. I know exactly how you feel-- I was never supposed to have one. I went and consulted with a surgeon 2 years ago when they wanted to do a resection surgery on me and she told me they could probably do it without a bag (unless something happened they didn't account for). Well in September I had a colonoscopy and ended up needing emergency surgery for a bowel perforation. I woke up with a bag.

I couldn't even look at it for the first 4 days I was in the hospital. I was pretty down about it all up until 2 months after dealing with it. You are still so soon after surgery. Just let yourself feel the negative feelings you have and process them, realize they are normal and move on. Things will get better with time. And things will backtrack after you think they are better.

I had a horrible Christmas with leaks and a stomach bug--- I'm still trying to fix skin issues with that. But I'm not upset about it, I'm moving on. I think my husband was super surprised when I had a leak in the car on the way home from seeing family and I didn't freak out. At this point I'm just trying to get through until I get my reversal on Jan 28th.

I hear everyone tell me "but you're so young to go through this crap". Yeah I am, but I couldn't control it and I have to move on. What else can we do? I'm not going to sit at home in self pity and spiral into a hole, that just isn't me. So I have leaks outside the home? Better make sure I have supplies to fix it so I can keep going. All we can do is live. We have control over how we handle the things we don't have control over.
 
I just wanted to say thank you for everyone's support.. I really really appreciate it. I seem to be incredibly up and down. One moment I'm fine, the next I'm crying which has alarmed my poor father somewhat. I guess I'll just get used to it and then it'll be taken away from me. It's just nice to know I'm not the only one out there who feels like this, and that life does continue..probably sounds daft..but thank you :)
 
Doesn't sound daft at all.

Just a thought but are you on prednisone? Cos that can make you feel teary and depressed and sometimes knowing whats causing it can help...............
 
I hope this isn't too long to post here, but I came across it when I was looking for peristomal care for myself and thought it may be helpful to Gracifer and others who are struggling. I think we all fit the bill for an ostomy support group, don't you?

From: http://www.ostomy-medical-supplies.com/
Finding Support
In the midst of all the physical changes you face after ostomy surgery, it’s easy to forget that you also need to deal with major self concept changes. Physically, ostomy surgery does not interfere with the ability to enjoy satisfying social interactions. Physically, ostomy surgery does not interfere with the ability to have fulfilling sexual relationships. But a person’s social and sexual lives are heavily influenced by his or her self-concept—so dealing self-concept changes is a critical part of the healing process.
Your doctor will probably send you home with checklists of things to do (walk, do your exercises, take your medications) and not to do (heavy lifting, housework, driving.) Unfortunately, no simple checklist exists for “dealing with self-concept changes.” So how do you heal emotionally as well as physically?
1. Find an ostomy support group. This is probably the single best thing you can do to help yourself heal emotionally. An ostomy support group can provide answers to your practical questions, reassurance when the going gets tough, and true understanding of what you are experiencing. An ostomy support group can help you connect with others who have faced—and conquered—the problems you’re facing. You can find both local and online support groups through the United Ostomy Associations of America, Inc. (www.uoaa.org.)
2. Recognize that grief is a normal reaction to any loss—including surgical losses. Accept and express normal grief emotions such as sadness, fear, anger, and denial. Allow yourself to cry, to get angry and pound your pillow, to journal about your fears, because these things help you to work through the emotions rather than getting stuck in them.
3. Educate yourself about the phases of recovery most patients go through after a serious accident or illness: shock, denial, acknowledgment, and adaptation. Different people go through these phases in different orders and at different rates. Understanding the phases of emotional recovery will help you to understand that your feelings are normal and that you can get through them.
If you remember to accept your feelings, take care of yourself, and connect with others, you will progress toward emotional healing. Most important, know that you aren’t alone.
 
Last edited by a moderator:
Usually a minimum of two weeks after surgery. Reason being in General anethesia can stay in your system for quite awhile.

You wont feel like driving in that time though. Especially with a standard gearbox.
 
My surgeon said not to drive for 4-6 weeks after surgery. You need to feel that you could comfortably do an emergency stop. I was back driving 5 weeks after my surgery, although I have an automatic, so it's a bit easier than a manual.
 
hmmm i was driving the week after my hemicolectomy back in 2003, only because i felt it was no problem, even started fishing the river a week or so after that, i felt so good, but i did keep in mind not to strain at anything, yep im an auto convert the last 3 cars, just cant see past them now
 
Misty the site is ostomy-medical-supplies.com Its got heaps of really good info for anyone about to get a stoma or who already has one plus lots of links to other sites. Doesn't appear to be a commercial site despite its name, more just has links to commercial sites and does has advertising on it. I'd recommend it to anyone interested, theres a blog about a girls journey with crohn's and surgery and ostomy. I didn't read all of it but it looked good for anyone struggling with the whole ostomy thing.
 
My prayers are with you. I too go through those low moments, I have not found motivation for the 'up' moments but, they will come.

Also factor in the meds because those can throw you for emotional loops.. especially the pain killers. I think they make me emotional so.. when I take them, I get emotional because I feel like I'm giving up by suppressing the pain instead of 'fixing' the problem.

Again, my prayers are with you. Having the drive to complain is a great thing!!
 
annawato said:
Misty the site is ostomy-medical-supplies.com Its got heaps of really good info for anyone about to get a stoma or who already has one plus lots of links to other sites. Doesn't appear to be a commercial site despite its name, more just has links to commercial sites and does has advertising on it. I'd recommend it to anyone interested, theres a blog about a girls journey with crohn's and surgery and ostomy. I didn't read all of it but it looked good for anyone struggling with the whole ostomy thing.
Click to expand...

Thanks Anna, I put the link in the post, hope you dont mind? That way it can be easily accessed by people. Looks a good site!
 
Gracifer, I had emergency surgery in october and ended up with a stoma...the whole thing was so quick and such a shock!! Mine is also temporary and should be reversed in 6months to a year. I am 21 and I struggled in the beginning to. Ive had mine nearly 3months now and it does get loads easier and the output does slow down a bit although mine seems to work all the time i have managed to work out when it has a little break and quickly change it then, although i am still having a bit of help from my mum with passing things to me so i can get it changed as quickly as possible! you can read about what happened to me in my story, and also message me if you want to speak some more. I hope youre doing ok :) amy xxxxx
 
Hi
Anna - No i'm not on any drugs currently, and that's a really great article there! Every day I seem to go through all those emotions . I also find I'm crying every day!! I just wish I could pull myself together and just accept everything, and I'm worried that people will start to think that i'm a drama queen or just looking for their attention.When actually I'm not. I just want some support, someone to give me a hug and tell me it's all going to be OK.. not that we know. I just want to stop feeling so completely and utterly low.
But again I really want to thank everyone with their support. Amy - Im going to check out your story in a minute!! But I'm glad it's getting better!! Thank you for saying I can message you, I really appreciate that!
 
Dear Gracifer, You are young to be going through this, but you have the maturity to reach out and get the support you need! I wish I had been as together as you are now at 21. When I was your age, I was always secretive about having an I diagnosed intestinal disorder that no one knew about (this was back in the 1980s!). Thank goodness you have support! After my surgery, I was really weepy and continued to taper off Prednisone really slowly and carefully... Eventually, I started to feel empowered and the forum will really help you. There are some good tips here, and remember to take control and see the light at the end of the tunnel! I am praying for you. I am also humbled by the many corageous people on this forum. I am dealing with a severe recurrence of Crohn's right now, and trying to stay positive. Thanks to everyone for being so honest and open and caring!
 
Sometimes all we need is a hug and some understanding but people on the outside get all practical and try to solve problems when all you really need is the emotional understanding. As for being a drama queen; no-one here thinks that AT ALL. We all completely understand and sympathise with what you are feeling.
Just remember it will pass, its part of the grieving process. And if it becomes unbearable get your gp to recommend a counsellor, or get on some antidepressant medication. As I said before, strong people get help when needed.
And dont hesitate to keep posting here what you are feeling and how you are coping. We are all willing to help even if its only to listen (or read :) )
:heart: Anna
 
I kind of know how you feel, I am about to have a permanent ileostomy because of severe leakage problems with my colostomy.I know its really hard to believe but you will get better and feel normal again,it just takes time.I thought I would never get through cancer treatment,many days I admit I thought death would be better than how sick I was.The thing that helped me was my Grandchildren,no way was I going to miss seeing them grow up.All things pass,and you will get through it,don;t let it beat you.Good luck honey and I hope your reversal comes soon and you can concentrate on living your life.
 

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