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Posted: Sat Jul 15, 2017 10:08 am

Good evening all,

I've posted my experience with acute severe colitis before, so I'll spare you an essay. Feel free to message me or read through some of my other posts if you'd like to know some more. I had emergency surgery on 17/3/17 and was 17 at the time. Currently, it has been almost four months to the day and whilst I understand that four months is not long, I still feel as though I should have made some progress in regards to accepting my situation. I'm not sure if accepting is the correct word for it, as I totally understand and accept what happened, the significance of the surgery in saving my life, and how everything now works as well as the whole routine of changing and emptying the bag. Nevertheless, I still can't stop myself from having my dark moments. 

It'll happen fairly frequently, usually once every couple of days when I'm not occupied with something. I'll be having a shower, making dinner, or just lying on the couch when my mind will wander for a moment, and a moment is all it takes. I find myself falling into the trap of then thinking about everything to do with the bag, comparing it to life beforehand, thinking about how my I still dislike it, and how it dictates my daily routine in a way, among other thoughts. This thought process inevitably drags my mood right down, to the point of not wanting to talk to anyone or do anything for a while until I snap myself out of it and do something that takes my mind off it. The trouble is that whilst I am completely aware that I do this and that it happens on a regular basis, I still don't notice it happening until it's too late and I'm feeling down again. I've also been getting myself worked up about going back to university in just over a week's time. Whilst I have no doubt that I am going to be perfectly fine, I keep finding myself feeling down when I think about all of the places that I'll going within the campus and all of the classrooms I'll be in, seeing as the last time I was there I was just a zombie, forcing myself to turn up to each class, only to find a tree to sit and sleep under straight afterwards.

I saw a psychologist for about three months after my surgery, as organised by my mum as a preventative measure so as to stop me from developing any issues and not talking about it with anyone. That was helpful, to a point. The issue with not only having an ileostomy, but in having been basically destroyed by colitis in a matter of three weeks is that there is a very small number of people who actually know what you are feeling when they ask a question about your experience. I don't blame him for not really getting it, but it's tough when the conversation with a psychologist shifts from being about living with an ileostomy to an amputee after a car accident because the psychologist can understand that easier because it's a more common situation.

At this point in time it feels like the only way that I'm coping with it fairly well is by having the knowledge in the back of my mind that I'm already booked in for J-pouch surgery in November. I am aware that it is a very risky surgery due to many possible complications that can arise from it, but nevertheless I am trying it simply because it's a far more appealing option in comparison to an ileostomy, at least to me anyway. I also wouldn't forgive myself if I didn't try it.

As usual, my post has turned into me letting off steam because it seems like no one I can talk to in person really knows what's going on. After all of that, my question is this: does the feelings of anger and frustration at the whole situation get better? As I've said, I know four months really isn't very long, but I feel as though the more time that has passed since my surgery, the more I find myself getting frustrated. I can't sit still for too long and I can get worked up over the simplest things. For example, I've been baking bread since I got out of hospital to give me something to work on until university starts again and I bought a new type of bread flour yesterday. Unbeknown to me, this bread flour had seeds in it. Though they were not big seeds at all, they were there, and I ended up getting annoyed simply with the fact that eating whole seeds is something that I even have to consider. Simple things like this still frustrate me and can put me in a bad mood, as I've always eaten healthy, but that is more difficult now, but I'll stop myself here before I get carried away again.

Thanks for reading,

Hamish.

Posted: Sun Jul 16, 2017 1:56 pm

Hamish,

I was just 18 when I had my colostomy surgery - 41 years ago. It was a month after my high school graduation and 3 months before I was off to college where I would be living in a dormitory.

You're facing a lot of changes in a short time period.  And likely questions about dating, sex, friends, ... and how much do I tell people. It's hard, I know. In retrospect I wish I had been more open.  I found out that though I was keeping this secret, everyone in my dorm knew.

I'm glad you were talking with a therapist and you should keep talking till you feel comfortable with yourself.   Years later I found out that all my college friends wanted to support me during a difficult time but I shut them out with my secretive way of dealing.  It was a mistake, an honest one but still a mistake.

Now, I'm not secretive nor embarrassed and it much healthier.

 

Best of luck and take care

 

 

Though I'm old now, I know where you coming from

 

 

Mike Q

If you have any question, send a note

Posted: Sun Jul 16, 2017 4:24 pm

I'd like to reiterate what Mike Q said. Keep talking to a therapist. If one doesn't seem to be helping, choose another. Keep working forward. There should be resources at your school; I know there was a psychologist and counselor at my son's school that was very helpful for him.

The main thing that will drop you in your tracks is trying to keep it all inside and deal with it yourself. There is no need for this. There are many people out there, even besides professional counsellors, who would be eager to help, even if only to provide a shoulder to vent on. Your friends, your pastor (if you have a church), your family. Maybe they won't EXACTLY 'get it', but they get YOU, and want to help YOU.

Don't wait until you are really down; have a few good friends who will be "lifelines" for you, who you can call and talk to any time for any reason. Pretty soon you'll realize that they have problems, too, that you can help THEM with. Remember the words to the somg - pretty soon, we ALL need somebody to lean on!

Good luck!

Posted: Sun Jul 16, 2017 9:39 pm

I believe it does come as it has for me.

It's kind of the idea that if life hands you a lemon.....make some lemonade. We all have times when we think about the way things were before and that's just the way we are but what good does it do? Unless we learn to accept the way things are now and make the adjustments as needed. It's like everything in life, we grow, we change we adapt. We are responsible for our own happiness so when you notice your having those dark feelings, change your thoughts to something you love or are looking forward to. Even though we all have some things in common none of us really lives in each others shoes to "know" what we are dealing with but we're always around to help lift each other up and try to help brush away the sad or stressing parts of life but only you can make it happen. Take one step at a time and keep moving toward your goals.

Best wishes~

Posted: Mon Jul 17, 2017 7:00 am

Hello again,

Firstly, thanks for the replies. They have all been great to read.

mdq58, you are absolutely correct in saying that I have many questions. Unfortunately, due to the speed at which colitis attacked my colon, I didn't really have much time to ask the questions nor did I have time to understand what I would be living with once I woke up after surgery. As I have expressed in some of my other posts on this website, whilst I fully understand how great everyone at the hospital was and how quickly and efficiently the surgeon organised the emergency surgery, I found that the surgeon himself basically did what he had to do and then left. I had about five minutes every morning to ask him any questions that I had, during which time I was still completely overwhelmed and didn't know where to start when it came to questions. I don't think my issue comes from secrecy and a lack of wanting to talk about it, I think it's more a problem of not having much of an opportunity to talk about it. I'm not the sort of person to start a conversation about myself and my problems. I never have been and I might not ever be like that. Whether or not that is detrimental remains to be seen. Having gone to an all boys school for the majority of my schooling, focusing conversation completely around myself and my problems just isn't the way I've been brought up. I have no issue with talking openly about how I'm feeling, but it generally has to be someone else who asks me a question about it first.

Newbie Dana, I graduated from secondary school at the end of last year and so unfortunately I don't have psychologists and counsellors readily at my disposal. If I was still at school, though, I would absolutely be seeing them, especially given how friendly the counsellors were at my school. I agree with you completely about not keeping everything to myself. I've seen the effects of keeping emotions locked up in my brother, and that didn't do him any good until he let it all out. The psychologist I saw was great for the first few visits, but after that it felt like the sessions plateaued due to much of the detail in what I was explaining to him going over his head. It's difficult to find someone who understands what you're feeling and why and how even though you've only lost one simple function, it can affect you so much. It seems to me like a lot of people don't really know until they've had someone they know go through it. Fortunately, I've had my parents by my side for the whole time, and they've been great for letting me talk about what's making me frustrated or upset at any point in time. As I said above though, even with my parents I can find it very difficult to begin a conversation about me. Being an 18 year old guy, and having gone to an all boys school, all of my friends are 18 year old guys as well. At 18 some of my friends are fine with talking about it, one in particular will joke about it with me as well which I like, but some are rather uncomfortable talking about it. I don't know if it's because it's too serious a subject or because they find the concept of an ileostomy gross or because it's a bit of "fear of the unknown" sort of thing. I don't hold that against them at all, as I can understand that it might be a bit confronting for someone our age to be talking to his friends about something so serious. It's all part of the learning curve of life, I suppose. Thanks again for the reply.

Mrs.A, I get the idea of the "if life hands you lemons" thing, but maybe I'm not there yet. As I said in my original post, I understand what the ileostomy does, that it saved my life, and that I can't get colitis again, but I still don't like the fact that I have it and that I have to even consider changing and emptying the bag. It's probably still a bit early on for me to be completely fine with everything and maybe I'm overthinking everything to do with the bag, but overthinking is what I often do, unfortuntately. I also appreciate the concept of bad thoughts providing nothing of value, but I'm also quite a firm believer in the approach to life that we can't be happy all of the time. I think having the down moments and thinking about life before and what will come is good in many ways as I can learn about myself and I can better understand the changes that the ileostomy brings so I can be prepared for unexpected issues. As the old saying goes, forewarned is forearmed. My issue is that I overthink, both about life before and what might come. The J-pouch in November is a "goal" in the way of me needing to get fit and gain weight so that I'm not as weak and anaemic as I was when I was in hospital last time, but that in itself brings stress and frustration. The fact that the J-pouch is as close as I can get to being "back to normal" is frustrating, as I was the healthiest I have ever been before I got colitis. And there it is again. I don't seem to realise that I'm falling into the trap of thinking about things in a negative way until it's already happened. They say time heals all wounds, so maybe I'm expecting myself to be dealing with it in an unrealistic way given my circumstances. Thanks for the reply, you make some very good points, and I will try my best to recognise the stressful thoughts before they get me down and turn them into something more positive. 

I apologise for such a long reply, I felt that it was appropriate to respond to you all as you all made very good points and gave great suggestions. Thanks again.

Hamish

 

 

Posted: Mon Jul 17, 2017 10:21 pm

Hey Hamish, There are a lot of sevens we’re dealing with here. Today is 17/7/17 (your style), your surgery was 17/3/17 and you’re 17. Wow! You’re 17? You write like a very bright, mature lad with a wonderful feel for what’s going on. There’s not a lot I can offer but, for starters, I’m not supersticious so the fact that I’ll be 77 soon has nothing to do with anything. Since I went through stuff similar to what you experienced, suffered through anxiety, depression, and PTSD, I have a pretty good idea of what you’re going through. Way better than your psychologist or laymen you might share with. Still, I can’t feel precisely like you do because I’m not you. You own your feelings as I own mine. I certainly empathise with you and probably can sympathise.
I believe you will handle this adventure way better than most of us because of your surprising wisdom and maturity. My answer to your question is “yes”, the anger and frustration will diminish in time because you’ll learn to mitigate those feelings. Don’t allow yourself to fight those feelings; fight the causes. You’ll figure it out with some help, perhaps, from folks like us who have been there and really care about helping.
Thanks for sharing and please stay in touch.
Respectfully,
Mike

PS:  I didn't read the other replies yet; running late.  Sorry

Posted: Tue Jul 18, 2017 3:32 am

Hi iMacG5,

You're right, that's plenty of sevens, though I've lost one as I'm now 18 as of early June. Thanks for the kind words about my writing; it's thanks to my English teachers throughout secondary school, particularly year 12, that I write the way that I do. I'm glad to hear you managed to get through the anxiety, depression, and PTSD, though I can't say I have any experience with any of that. I wouldn't call being kept awake at night from overthinking every now and then anxiety, nor would I call feeling down or angry over my circumstances depression. If I was to say I had either of those I feel I would be insulting those who have genuine troubles with those sorts of mental conditions. Once again, I'm glad to hear that you have overcome the tough times and are content. As usual, it's great to hear from people who have been where I am and genuinely know what's what when it comes to the psychological impact of having such a life changing surgery. You, and everyone else here, are right in saying that I need to learn to not fight the emotions, but instead work out the cause and learn to deal with that. I'm sure with time I will sort myself out, whether it be on my own or with the help of family and everyone on this site, which, by the way, has been fantastic for answering my concerns whenever I have them.

Thanks again,

Hamish

Posted: Tue Jul 18, 2017 10:52 am

Hi Hamish. I read the replies and I’m just so impressed with the quality of the advice you’ve been given. Even more impressive is the sincerity with which your situation was addressed. Some great folks here at MAO.
You wrote “They say time heals all wounds”. I’ve learned “they” say lots of things that sound good but might not be 100% accurate. The one thing we can never argue about is the phrase, “It is what it is”. We can’t change “IT” but we really need to identify what “IT” is. Then we can address it appropriately to make things better. Like Shakespeare’s reference to a rose of another name, we sometimes label our feelings with the terms that seem to fit best. Hopefully we’re not clinically depressed or anxious and we don’t have PTSD. If, however, we feel like crap and our QOL suffers, who cares what it’s called? Let’s just make it better.
I think you’re in a pretty good place and well on your way to where you want to be.
With respect,
Mike

Posted: Fri Jul 21, 2017 10:48 pm

Hello again,

I'm not sure if anyone is still looking at this thread, but I have another related question. How long did it take you to get past any depressive feelings and totally accept and have no issues with your ostomy? As I said in my initial post, I'm now four months post-op and I still struggle at times with falling into the trap of overthinking everything and comparing life now to life before.

Thanks,

Hamish.

Posted: Sat Jul 22, 2017 4:14 am

G’day Hamish,

I read your initial long post last weekend and felt like replying there and then but I thought it would be better to gather my thoughts for a few days and also give others time to reply which they have. There is some wonderfully sincere people on this site, no doubt.

You describe your posting as 'letting off steam’. So what! There is no need to apologise for that. Good for you I say. You are still obviously struggling to come to terms with your new life……totally understandable. As I have told you in the past, it is no sin to say how you really feel, deep down. There is not one person on this site who would have had their plumbing altered if it had been avoidable.

I was hoping to come up with some words of wisdom or something profound that might help you with your situation but alas I haven’t been able to think of anything, suffice to say you are not alone. If ostomates are totally honest with themself, most would say they have had ‘dark’ times too.

You are an educated, articulate young man with the world at your feet, as others have said, and I agree, give yourself some more time.

V.J.

P.S. There would be girls (and boys) in your age group on this site. Take a chance and reach out to someone….who knows? With the internet, it doesn’t matter where they live.

 



Last edited by veejay on Sat Jul 22, 2017 4:44 am; edited 1 time in total
Posted: Sat Jul 22, 2017 4:30 am

Hi V.J.,

Great reading your message, as always. You make very good points. Whilst I know in my head that probably 99% of people on this site felt the way I feel at some point, sometimes when I feel down I think I just need to let off steam and to have people remind me of what I already know, which is always extremely helpful. I definitely agree with your point about not having had the surgery if there was any way around it. I've told myself before that this is the best outcome in general because the colitis can't come back, but that doesn't mean that if the steroids or Infliximab worked that I would have still opted for surgery. Anyway, what's done is done, as they say. No need for any "words of wisdom", just reading the truth from people who have been where I am is enough to lift my spirits again for the time being.

I'm starting uni again on Monday, which I know will be great for me and will really give me the boost that I need, but I can't help feeling worried about it as well. I'll just take each day as it comes. I'm sure it will be fine.

Thanks for your reply and thanks to everyone else, too. As you said, V.J., everyone on this site that I've spoken to are very sincere and give great advice, as well as being a bit of a shoulder to lean on when I'm feeling worried, down or frustrated, so thank you all.

Hamish.

Posted: Sat Jul 22, 2017 5:47 pm

Good luck to you tomorrow when you are back at university Hamish.

I'm sure you will make some friends but it's probably not necessary to "volunteer" that you are an ostomate. Choose carefully who you release this information to. There is plenty of shallow people in this world, even on this site – the prettier, the more shallow has been my experience.

In all the places I have worked in the past 18 years I have never told anyone I have a hole in my stomach. No-one knows the lengths I go to, to look my very best everyday. (Because of a parastomal hernia, I am currently lying on my bathroom floor to help my irrigation process to work properly). I am far from happy about my AP resection 'experience' and the outcomes but they are never going to beat me.

Once again, good luck. One day at a time young fella.

V.J.  

Posted: Sat Jul 22, 2017 7:38 pm

Hey HH, I for one, will continue reading your stuff with the hope of answering your questions and maybe learning from you. I’m not sure we will ever totally accept and have no issues with our ostomies. We will continue to read, experiment, ask and do everything we can to make the whole thing as comfortable as possible. That’s physically, mentally and emotionally. Not sure there’s a real benefit to comparing life now to before. What’s important, I think, is to recognize how we’ll eventually be able to do just about everything we did before. Four months is not a long time. Things change for lots of reasons. Aging changes us. Considering the alternative, that’s OK. I think you’re doing well and you’ll be good in time. I overthink stuff sometimes and it’s kinda wastefull for me.
Keep in touch.
Mike

Posted: Sun Jul 23, 2017 2:08 am

Hi Mike,You're definitely right in saying that we're all trying to make life as comfortable as possible. I think my current problem is that at the moment when I think of comfort, I think of life without a bag. Not helpful at all, I know, but hopefully with time I'll get past that. I'm having J-pouch surgery in November, so I have hope in that regard, but I'm also very aware of all of the risks associated with the surgery. I have a good surgeon whose main surgeries are colectomies and J-pouches, so I'm in good hands. I'm still nervous for it, though. 

Today I wore a belt for the first time in many months, which may not sound like much, but it was a big victory for me as I have avoided it due to fear of it cutting off movement in the bag, leading to leaks. It all went fine, but I still ended up getting frustrated this morning simply because I even have to consider whether or not wearing a belt can work anymore. As I said, it's a small victory, but every victory goes a long way to boosting my confidence and making me more comfortable with my new life.

Thanks again, Mike, I'll definitely keep in touch.

Hamish

 

Posted: Sun Jul 23, 2017 5:29 pm

Hamish,

 

Sorry for slow response, I find the site a little clumsy.  Just keep experimenting.  I rowed for many years, and yes I wore a unitary, but found that did not work, but I gave it a try.  I have a pool at house and swim daily.

 

When I had my surgery in 1976, the pull thru or jpouch procedure was in its very earliest stages, so i made the decision to give it a pass, I was 18, for a number of reasons.  

 

My best thoughts for you November procedure.  You have to trust your docs completely and not worry.

 

I hope you keep in contact and don't hesitate to ask any questions.

 

Mike

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