Think this will be a good way of putting my thoughts and feelings down in the present, to in time look back and realize what was happening to me.
Had an operation 13 days ago now, took the Seton stitch out and pulled the flap across the fistula and sewed it up. 3 cm wound in the left buttock, it needs daily cleansing and packing put in. Also, some stitching externally right next to my anus. After 13 days, I still can't get comfortable sitting.
I have to go to the doctors EVERY day for the rest of the year, to get the dressings and packings on the wound changed, really doing my head in, the waiting in the surgery with all the germs etc. on a daily basis is getting to me. I'm terrified that I'm going to get an infection from going to surgery every day and also the packing comes out EVERY time they put it in. I get my arse out daily for strangers, every friggin day it's someone different and I have to tell them what I need doing and then drop my trousers, it's humiliating at times, embarrassing at times, sometimes there are 2 or 3 students in as well...all gazing at the war zone that is my arse!!
If the fistula heals, at the end of the year we will be talking about having this demonic thing on my stomach reversed, (stoma). I was attacked in my own home 3 weeks ago, headbutted and punched by a psycho neighbor who premeditated the attack, as he knew I was poorly, since then and with the operation, I've felt totally out of sorts, like I have no home, no safe haven. My home doesn't feel like my home anymore, I'm dizzy all the time, can't relax.
To be honest, it just seems that I may be drawing the curtains on my life. I'm not afraid or panicking, it's like it's a natural progression from the nightmare 8 months I've had since collapsing with the bowel abscess. I'm so tired of fighting and trying to manage things, to integrate into society and be a valid part of it...I feel maybe yes, the curtains are closing. It's a selfish, harsh, cold world I feel I'm living in and I genuinely am not sure if I want to be part of it anymore.
Relationship broke down 7 weeks ago, due to my health and stoma, I push people away...not just because I smell of shit, but because I feel no one deserves to have to put up with me...why should they? You're never more than number 2 in another person's eyes....and in the cold light of day, the human race disappoints me frequently...I'm on my own, I accept that, so this in turn gives me the right to say goodbye.
My post-traumatic stress disorder score was 56...30 or above is bad, ha, I'm a complete fruit loop then, admittedly, I could have a fight with myself in a phone box right now. From being a very calm person, I'm now angry, I lose my temper at minor things and it scares me, that and the nightmares scare me, getting treatment soon for this, but deep down even if they fix the mental side of me, what's to say the physical side will be fixed also? Not being negative, I'm a realist.
Putting it simply, if the fistula doesn't heal, if I don't get rid of this stoma, by the turn of next year, I'm calling it a day...end of.
One thing you're not is on your own. It's only been 13 days and I have met people with permanent stomas with supportive family, employers, and partners. I'm lucky my girlfriend hasn't run a mile. I was sure she was going to!! The anger and frustration will go in time... wounds will heal. Have a read of some of the posts on here and you might find you're actually one of the lucky ones. I know I am. Relax and heal, my friend!
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It sounds like you have already drawn your curtains, Cal. If they actually fix the mental side of you, I am sure your physical issues will become a lot more manageable. With all the problems you have, you should have been getting psychiatric intervention long before you got to this stage of despair. The best news I see right now is that you are taking stock of your situation and reaching out. When you read what other folks have posted here over the years, you will appreciate how powerful an impact a positive disposition can have on the healing process. Good luck, get that help, and keep us posted. PB
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Really, do you think so little of yourself? Snap out of it! Besides, who said you get to make the decision when to close the curtain? You're only 42, and life may hold better things for you. Why would you want to give up on that chance? What does your family think? Relationships come and go for all of us until the right one comes along. It's okay to be concerned about what is ahead, but to do nothing about it sucks. Come on now, pull up your bootstraps. It could truly be worse. Look to those who have less than we do and who suffer a great deal more. They're all around. You will be a great inspiration when you get through this. Stand in front of a mirror, put your left arm over your right, and then your right arm over your left. We're sending a big hug to you. Most of all, remember who put you here.
You need to tell the nurse how you're feeling tomorrow. They should have made a care plan for you with a nurse who is in charge of your case. You can refuse to have any student nurses in the room. You're in the UK, do district nurses come in on the weekend? You could ask if they can come during the week as well. And if you feel that bad, you can call 999 or go to A&E. They can't refuse to see you when you have depression.
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Hi, it's hard, this life, but hang on in there. I too felt not good enough to deserve a normal relationship, not helped by life experiences, but I was wrong too. Why think you're not good enough? You are worth it. You are worth being loved and cared for. And you deserve it, even more because of the problems you face and cope with. Hold on there, esteemed or should I say, ostomy-friend... or simply friend. Hope we are helping, even if just a little. xxx
Yo Bill, I only posted a comment. Caledonia, I hope you're getting better. It will be cool once you settle down. I was really bad-tempered just after my surgery. My wounds are still being dressed every day after six weeks to the day, and it's still pretty big, but it's healing! And so will you!
Was supposed to be getting EMDR treatment for my PTSD. They've decided to postpone that and refer me onto secondary mental health care instead of primary. They said I can't undergo EMDR unless I'm in a safe place... Which means, I'm on my own again and I'm truly nuts, ha! Long waiting list for secondary care, so my therapist has to cut me loose... much like a house cat in the jungle!! I work with children, have studied counseling for 3 years, am empathic and caring, and try to help others, but Christ, when I hear someone say, "Think of others, worse off than you, think yourself lucky," I think, bollocks, bollocks, and bollocks again! Yes, I at times think of others in worse situations than me and I realize they're out there and I truly empathize, but only for a pocket of time, because there are 15 waking hours to my day, that is what I live... every day, angry, frustrated, anxious, irritable, and bloody scared... why? Because it's my life, no one else's and I can't run away from it... but as respite, I can sometimes think and write, as I did with this blog about thoughts of final respite, final rest. Pity reviles me, attention is not a need, to be heard at the moment, serves no purpose, but maybe writing may help. I'm generally, well I was a happy person, fun, active, spontaneous... now, the only spontaneity in my life is shrieks of anger and a bloody stoma that definitely has a mind of its own. Freedom of speech still exists, for myself, to write a blog and for the seemingly decent articulate people who bothered to write on my blog also. What I'm trying to say is yes we have to try to stay positive, think of others worse off... WHEN WE CAN... but in a free world, we can also write, vent, moan, and get angry at the hands we are dealt, some will prosper, some will fall, I don't know which of the two categories I will fall into, but I'm leaning towards falling at the moment, because of things that are and have happened in my life that I have had no control over... that's why I tidy my house incessantly and have an eating disorder, to try and get back some control.
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Caledonia, I am truly sorry that my words were misspoken. I surely misread your post. I am the one who said to think of others worse off than you. My intention was to remind you (and others) that many people have a very difficult time in our journey of life. When I am feeling down, that is what I do and it helps me. I was hoping it might help you as well. You are right, it is your cross to bear and no one else can feel what you feel. Freedom of speech does still exist and I do not want to hurt anyone in any way. I hope you look past my previous post and know my intentions were to snap you out of it.
I do understand the mental health issues, I really do! If writing helps, then carry on. Everyone on here will listen. One thing you don't want is an eating disorder! I was the opposite before my surgery. I was very sick for a long time but still went to work. However, I was very unhappy. Now that I have settled down, I can't wait to get back out once my scars have healed. I hope I get my old body back. I feel like I'm borrowing a 90-year-old body! If all goes well, I will carry on with my job, become an organ donor, and a blood donor. I'm going to volunteer in my community. This experience and talking to people who have had decades of operations make me—as a 27-year-old boy—see that every minute I'm still breathing is good. I have always been the guy who stops for someone that's broken down, fallen over, or needs help. Now, I'm going to spend the rest of my life being the best I can be. On the other hand, if I don't get better and have a permanent stoma and still suffer from strictures, pain, and Crohn's, I'm going to go back to university and study electronics again (higher) so I can have a desk job as a circuit designer. My job at the moment is pretty physical, so I might not be able to carry on. Anyway, the moral of my ranting is I have a plan, good or bad outcome, I'm ready either way! I just had 7 weeks off work, and I'm going to have at least another 7. I don't know when my reversal will be or how it will go. My pills don't let me sleep. I'm on my own 20 hours of the day, but I have my seven guitars for company. They keep my mind off all the bad things, and I lose myself in concentration, and hours just melt away. One day, I might be a man.
Hi Caledonia, it sounds like you aren't coping very well and I can understand that because I didn't at first! It's a big shock to the system! But you mustn't give up! You must have some family or someone you can turn to to talk to, or if not then there is always us! It is a good idea to write down how you are feeling, I did it while I was in the hospital and it is very therapeutic! Don't worry about everyone seeing your bum! Everyone has a bum, all the nurses and students have probably seen worse ones so I wouldn't worry about that, they knew what they were getting themselves in for when they took the job! Ha ha
Hi Caledonia, this is my first post. I just joined here today and was looking for people discussing suicide. I understand how you feel, and frankly, if I didn't believe I had that as an option, I would feel well and truly screwed. I have discussed it with my husband, and he understands, but I have promised to give this my best effort while my elderly mother still lives. That is my responsibility, but beyond that, most days I cannot imagine this being my life forever. Probably like most people on this site, an ostomy is not the whole of my problems. I also had severe bladder damage as a result of chemotherapy and feel as though all my days are spent in the bathroom, a very difficult mental situation for someone who was a long-distance walker all their life. My world went from the limitlessness of outdoors to the closed-door world of my bathroom, and that does not seem to me to be an acceptable alternative. I too am angrier much quicker than ever before. And way sadder. Having said all that, I will tell you something that works for me but might immediately get me kicked off this site, but I COULD NOT do this without weed. I smoke in the evenings and go for a walk and can actually go ten, twenty minutes at a time forgetting my ostomy. I refused most narcotics during my cancer and surgeries recovery and obtained medical marijuana, and it made all the difference, not just numbing pain but actually giving me mental respite. I do not say this lightly (as someone with 22 years of sobriety), but this and Adult Swim cartoons have given me evenings and nights that back in 2011 I would never have thought possible. So Caledonia, I will say although the daily bearing of your arse IS humiliating, try what I did, which was I always aimed to make it easier for everyone around me (don't we all?), laugh it off, etc., and then go home and be about looking to yourself. I promise you it doesn't necessarily get better, but it does get different, and that is something. Please allow yourself more time though, and you may really surprise yourself by how you may have changed for the positive. I, for example, am almost fearless now having faced down what I did. And that, in turn, sometimes makes me like my new self more... So that is something...
Thank you all so much for taking the time and thought to write on this blog. It means an awful lot to me to have help and advice from such resilient wise people. I understand how some people can get frustrated at some of the moaners on here. That was me on the first post of the blog. I know this, but I really was just writing my thoughts down for future reference. Challenges and difficulties, we all have and are still facing. I know this and have a lot of respect for the people on here. Survivors and fighters. Can you come and run my country please? We need some positive, strong-minded, straight-talking honesty for a change, ha. Well, I've been let go by my therapist. They've decided I need to be referred onto secondary mental care. Long waiting list for this, so looking at next year for an assessment realistically. No EMDR treatment in the near future either. They say it's dangerous to do it with me, as they say they need to get me to a safe place mentally. Hence secondary treatment in the new year. So, like a domestic cat set free in the jungle, I'm left to my own devices, I guess. Haven't even got the mental energy to moan about it anymore, to be honest. I've tried this weekend to eat normally. It didn't work. I kinda give up on that one again. Stoma is swollen, stinging, works twice as much, gets really aggressive. Had a disgusting leak all over my bed. My stoma actually makes me nervous. When I've eaten and it parps and shoots out waste, it makes me think, "God, I really am lucky I'm not sitting in the company of a potential love interest while this is happening!" The prison that is my stoma. C'est la vie. "Out of suffering have emerged the strongest souls; the most massive of characters are seared with scars." Kahlil Gibran wrote this and it makes me think of the good people on this site. o)
It's very early days, Caledonia. I think I felt a little like you too initially. We all need to vent sometimes, we all want to help, be that shoulder and a willing ear. It's not a case of pulling yourself together, I wish it was that easy. It's going to take time to heal inside and out. But we are here and we share your grief for who you were, who you are now, and who you want to be in the future. Hang in there, it does get better, I promise. Trish
Star, how long have you had your ileostomy/ostomy? When did you feel you'd think it would be easier to get my head around things if I knew what lay ahead, what challenges I would be facing, etc., but it's the not knowing if my stoma will be reversed, not knowing when and if the PTSD will be dealt with successfully. I think acceptance can come from the given reality with no hope of a reversal, but limbo land sucks. What am I supposed to do with the anger and frustration I feel every day? Any advice, please? Since being assaulted by my neighbor 4 weeks ago, the PTSD symptoms have become a lot more significant... anger mainly, and it unsettles me. The disdain for people that comes hand in hand with the anger, I know, is a malfunctioning part of my mental health, but I can't get professional help, so I am at a loss. I come from a caring background, studied counseling and mental health for years, I try to help people, but ironically now, it's me seeking the help and support, pushing away my family and friends, because it's been 8 months of pain and suffering, it's boring, it bores me. Thank you, Star, your kind words made me smile.
I have had my ostomy for 5 years now. First, a colostomy and now I have a loop ileostomy. I can have a reversal too one day, but in the meantime, I have other issues caused by the surgeries that need to be resolved first. So, I do understand the feeling of limbo and the frustration of it. I get angry too and sad. Sometimes, I realize I have gone a week without it getting me down and now more often a month or so. I get cross with people too. Sometimes, ours is an invisible illness/disability. People look at you and see one thing, and you know better. The anger you feel is the frustration of not being able to grab someone and shake them and say, "Feel what I feel, see what I deal with, then you'd have some idea of what my life is like." I come from a mental health background too. It doesn't help; it makes it harder somehow to try and rationalize it professionally. This is something you can't control at the moment. At the moment, you are led by your stoma and your depression. That will change with time, and those things will be a part of who you are, not who you are. We are all different. Try and be kind to yourself, find something that makes you feel a little peaceful, and give yourself time.
Commitment phobe - goodbye
Disabled, PTSD daily suffering - goodbye
Disabled, PTSD daily suffering, vulnerable - goodbye
Hope - new year, new me, new congruence.
NB. Just notes in my head I needed to jot down.
Appointment this Thursday...very anxious about it now. Will my fistula be healed, have the stitches disintegrated enough to estimate/decide on the reversal??? Will I get a reversal? Will it be soon? It has to be soon as I'm losing the plot at times! My birthday came and went. My lovely ex who deserted me saying, 'Don't take your anger and frustration out on me' ignored my birthday. Positives: Sleeping okay, friends, I have some, sold a couple of paintings online, I still have all my hair, own teeth!
Investigatory op soon, to see if the fistula has healed; if it has, they will reverse it. Anxious. Living in limbo waiting now. I have always felt like an outsider looking in on this site. I've been negative about everything, I know, but it's what's in my heart and head; I can't help but speak the truth. The majority of people on here seem to view their stoma/ileostomy etc. as either a lifesaver or an improvement in their life due to cancer or Crohn's, which is fantastic, really it is. I fall into none of these categories and have always felt like the negative outsider. In 10 months, no, it has not gotten any easier. I hate it, I disgust myself, the smell and noises I make. I spend a lot of time alone and I lost my partner because of this stoma. I isolate myself and suffer from PTSD and depression because of this damned stoma, so no, I'm not going to thank it for anything. I hate it and it has not gotten any easier in 10 months, not one bit I'm afraid.
Love the poem, Bill. You have a way with words. I salute you, my friend! Lose confidence... sheesh, totally. Saw my ex today, thought she'd ignored me. I texted her, she texted she didn't see me. She's on my mind again... not good! Also, my son talked to me today. He's 16 and feeling down to the point that he wants to see a GP. It's got me worried sick. He cried today, broke my heart to see my boy do that. I will have to remain strong for him, as this is why I am here - to be his father and look after him in times of woe... who's gonna look after me, ha! Bill, I'm going to look up your backstory now. You are a legend and thank you again.
I've booked my son an appointment at our GP. He wants me to go with him, so we'll see what they can offer him. Bill, you should just blog all your poems, be they positive or negative! Censorship stinks in my book; people should be free to make their own choices in a diplomatic society/forum, I feel. Ha, Friendship Bank's gone bust and is losing friends, which I can identify with at the moment. The PTSD... I thought I'd gotten a bit of a handle on it lately, then, wham, today, I'm angry as hell and totally distancing myself from my friends and family. I can't help it, just feel so insignificant... first time in 21 years I've been single... single for 4 months now, I can't say I enjoy the single life, but have no choice. I feel the stoma and the PTSD have rendered me undateable... I wouldn't want to date me... I'm waffling now. Bill, do you have PTSD? How long have you had your stoma for?