Ileostomy : I'm not OK with this!

Newish ostomate here. Permanent ileostomy courtesy of Pseudomyxoma Peritonei discovered late last year. Operated 17 November, five weeks later was discharged (just a couple of days before Christmas!)

Physical recovery going OK. I have many of the same issues people here and elsewhere talk about, notably leakage which seems to come in groups of three in a row, bizarrely. I have to monitor my energy levels carefully to avoid exhausting myself, and it takes me a while to recover from any exercise, but it's slowly improving.

Mentally? Not so much. This whole deal happened really quickly, and suddenly I'm recovering from major surgery, with a scar from my ribcage to my groin, and a bag of sh*t hanging off my belly. I'm not OK with this! I've been all over the web for advice, etc., and found some very valuable resources and YouTube channels. However, they seem to have a common theme: sickeningly positive, optimistic, cheerful, young, good-looking people who are really well adjusted and have everything under control. I find these difficult to relate to. I'm still figuring a lot of this out (understandable), and I'm still hopelessly tired, angry, fragile, worried, tearful, depressed... you name it.

So, getting to the point of this post at last: I'm considering writing a series of articles (and possibly even videos) based on my experience and feelings, in the hopes that sharing my journey from the perspective of a Grumpy Old Fart™ might help other people in a similar position. I'm not OK - and that's OK, sorta thing. I don't have to have all the answers. I don't have to be bubbly and cheerful and outgoing. I'm just me, figuring this out.

Do you think there would be any value in this?

Hi kenpem,

Any value in that? Absolutely! You basically said if it already existed, you'd get some value from it... so you're on to something for sure! Some famous person once said 'Necessity is the mother of the Ostomy'... or was that the mother of Invention? I don't know... doesn't matter... you get my point. It sounds like a positively great idea. Foolproof even.

Now I can't be 100% sure of that, as I try to hang with the swells and pretty folks... but there's a ton of ugly mugs on here that would probably eat that up... no pun intended! I'm sure they'll chime in right after me and give you the thumbs up or down.

Just keep your videos on the 'light' side... because we all (obviously) have to have a sense of humor about this crazy situation we're now in, right?

;O)

Hello there,

I won't call you a grumpy old fart because that would make me an older one, except that would be letting the "fart out of the bag"... hmm.

I know how hard it is to come back from an extensive surgery. I have the same scar after two life-threatening/saving surgeries, 6 months in the hospital, having my heart restarted, relearning to walk three times!!! etc... It took me more than a year... Or was it a couple of years to begin to feel like myself again? I looked like something from the Holocaust; I had lost so much weight. I went through sore-maggedon around my stoma (ileostomy), but I am still here 11 years later :)))) You can cause yourself endless pain and grief resisting what is, but that is like rocking in a rocking chair and complaining that it goes nowhere... OR... use that precious energy to practice gratitude for all that you can still do and enjoy. The key is, what you focus on you attract more of. The question is; do you want to attract more to complain about... or... to be grateful for? The choice is yours. You can fight against it all you want, but that is how the universe works. You can't change that, but you can change your mind. A sense of humor is key to getting through this and making it not so big a deal... because... as we all know... "shit" happens :)) BIG HUG "young fart" :)

Go to the pad and pen and you can download videos there. Posting your stuff I think would help you a lot.

Hello Kenpem.
I think most of us on here can relate to how you feel at present, and it is therefore understandable that many will want to share their strategies of keeping in a positive frame of mind in order to get through the worst of the feelings
I am a firm believer in the process of writing feelings down to capture them for both myself and others to re-read at some later date. My writing is usually in rhyming verse, but it doesn’t really matter which genre is chosen, the end result is that the author has thought it through and come to some conclusion. 
I have found that the more negative feelings I write about the less negatively emotional I tend to be about the subjects when I re-read the manuscripts. I put this down to a variety of different perspectives on the issues which are uncovered in the process of writing.   You may have noticed that many of the rhymes I share  about stomas were written some time ago - - when I was going through the emotional phases that you describe. This is because, eventually there are less and less negative things to write about and we scribes are obliged to find a different angle on those old topics.  I do like the idea/concept/perspective of ‘a grumpy old fart’  and I hope to be reading more about how you feel in future.

Best wishes

Bill

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

You're doing better than you realize. Being honest and admitting how you're really feeling takes courage; so many try to hide it, even from themselves. You will see it often in groups... so you're doing really well in my view.

Early days, you and your body have been to hell and back. It takes time to recover. Energy levels will take some time to get back to pre-surgery levels. Don't push yourself too hard. Your stoma nurse can provide basic counseling if you feel you need any, and keep seeing your stoma nurse for as long as it takes to find the right products for you to stop you from having leaks.

Most of those you see on YouTube/Instagram giving their speeches on life with an ostomy are in denial and haven't accepted it themselves yet and aren't ready at this point in their lives to admit it and reach out and ask for help, not that there's anything wrong with that. We all cope in our own ways. I've done much the same myself in the past; that's why I can see straight through them. If you look on social media ostomy groups, you will see lots of young and old grumpy gits.

Yes, write down how you're feeling, make blogs, videos on whichever social media platforms you choose. It will help you a lot to get everything out in the open instead of bottling it up inside, and hopefully, it could help others too. Most of all, laugh lots; laughter is the best medicine.

Yep, as they say, been there done that - my true redemption is that it happened to me at 76 years old so I don't envision myself as an estimate long term. It sucks and to me, each day, I sincerely try to throw negative badass thoughts to the wind. I find a good way to accomplish that is humor and song-singing. I am the only one who laughs at my humor in this household (my honey never thought I was funny from our youth - 58+ years ago but it's probably a good thing because God knows I have enough laughter wrinkles on my face (and body) at this point!

I tend to stay clear of grumpy old farts whenever possible - avoiding any negativity - living in an adult community this is not always easy. I tend to be attracted by the "smile and the world smiles with you, cry and you cry alone" theory. I have found all the help, advice, chuckles, encouragement, etc., and a path to mental wellness having been a member on this site for a while now. Hope you will find the same.

Kudos to all who have responded to your question regarding value to your idea. I think the value would be to you.

Hi Ken, I think there would be great value in it! Go for it. I also want to reassure you that you are not surrounded by young, good-looking, endlessly positive, and cheerful people on this site! You call yourself a grumpy old fart, but 57 is young in my books. You're a kid! The members on this site are as varied as in any other random group of people. You are in good company.

Terry

Happy morning, people. I can't really stand. I don't understand what makes them that way, and when they know I'm not a morning person, it goes downhill unless they bring me coffee. I found making up new swear words for my stoma helped when she was being a diva. I have a picture when I had an NG tube, and I look so miserable and pissed at the world because I was. My feelings have been all over the place in this journey, and I would say I'm pretty broken, still trying to figure things out and see what can be glued back together, but I know it will never be the same. I think sharing your thoughts with some genuine humor sprinkled in now and then would be helpful.

Absolutely. Write. Vent. Be funny. Be honest. Just don't waste valuable time. Get to it. Now.

Go for it, but don't become the doom and gloom old fart. Most of us, and I include myself, love my stoma because the alternative would have had me sitting on cloud nine. I have now started a new and better life than before and am very grateful to be alive. I hope putting pen to paper helps you to get to a better place. Good luck and remember what you write can either help someone or completely destroy them. Regards, IGGIE

Go for it! Because I can totally relate to everything you wrote. I too have toyed with the idea of making video content for more mature ostomates. I am five or so months ahead of you post-op and like you, it all happened to me very fast. I went in for a routine op and then all hell broke loose! I ended up in the hospital from mid-May till September, during one of the hottest summers and severe restrictions on visitors 'cause of the legacy of Covid-19!! So I spent most days alone after 4 surgeries!!! I still get tired after small exertions and sometimes I lose a whole day to zero activity other than in and out to the loo to empty my overactive ileostomy bag! And on those days, I have longed for some solution where I wouldn't even have to do that 'cause my energy is so low!!! And don't get me started on leaks that come in 3s and 5s and they are exhausting too, even though I do not know why...but always I am whacked after several bag changes.

I am due for reversal surgery next month, and that apparently brings your relationship with the toilet to another level!! Where you still have to stay closely attached!!! I imagine I'll be trading my bag for a nappy initially when leaving the house if people's experiences are anything to go by!!!&zwj

Presently because of the two bags I have, I prefer loose clothing or pjs and rarely go out other than to walk my dogs around the green outside. I cannot stand anything pressing on the bags, (fistula and ileostomy) So when I see other ileostomates wearing fashion clothing and looking bright and happy, I wonder what's wrong with me?? Therefore, I look forward to reversal surgery for that reason alone. Though that has a new bag of problem tricks it seems.‍&zwj

Energy-wise, I work in education, and I am still not fit for work!‍‍ So here's hoping AND praying I get all that back by next year!

Just breathe!! Wow, 76 when it happened to you! You are a legend.

I was 58 last year! But as I say below, reversal surgery for me is scheduled for next month.

For me, living with my ileostomy is a type of jail sentence though. Everything about my life is governed by proximity to the WC and the hope my bag won't leak, burst, or pancake. I read, but it's hard to stay focused sometimes. Crochet (badly!!!) and TV have kept me sane over the winter months, but as the days get brighter, the TV is losing its appeal. I am happy in myself in spite of what I have written here, but I feel my life experiences are limited for the present because of my slow recovery and loving ileostomy!!! Any outings involve forward planning ahead and finding WC locations!!! However, I am a lot stronger since all the surgeries and getting stronger every day!

My hubby has been, and is a godsend to me too. Bless him! You take care Just breathe! Mabsie Moll‍

I'm not sure if you saw my post that there really is life after ostomy. Here is a short excerpt:

I'm sure a lot of you assume that it was easier because I was a trained ostomy nurse. No human being is prepared for having an ostomy. I spent two years bedridden, and the physicians despaired of my life. But at some point, I had to decide to get busy living or get busy dying. I chose to live. Sometimes I still cry, sometimes I have bad days that seem like they are worse than anyone else's, whether they have an ostomy or not. But I read something in a book that helped me decide, "You go on, you just go on. There's nothing more to it, and there's no trick to make it easier; you just go on."

And what do you find, on the other side, when you just go on?

Your life again, what else?"

I hope this helps. I would be happy to provide any resources I can; just send me a message.

My husband had his ileostomy at 79 and also had a stroke many years prior to this. He was really weak afterwards, but eventually got back to his norm. The best thing for him was getting back his appetite and having married a nurse. He can't manage his ileostomy due to the stroke affecting his dominant side and hates that I have to do it. We've gone through the leakage and many other things and this group was an immense help. They know things I, as a nurse, never knew and his ostomy nurse never told him. In fact, it was the ostomy nurse who suggested joining a group.

He's back to working out 2 days a week and we often go out for lunches and dinners with friends and family.

Without the support of this group we'd both probably be in tears.

Hi Kenpem, if you're low on energy, do what long-distance athletes do and load up on carbohydrates and some protein. When I got my first ileo 30 some years ago, I ate a lot of pasta with meat sauce, as well as burgers and fries, but I also got outside for fresh air and went for walks, which helped me get my appetite back. Oh yeah, the different feelings will come and go because your body suffered a trauma and it takes time to adjust itself.

That sounds like a great idea and a new albeit different perspective. Looking forward to the post as I am a grumpy old man as well LOL :)

I agree. The difference between Grumpy and most of us is that we felt lousy pre-stoma and he now feels lousy post-stoma. He has a very rare problem that still could be bothering him. He needs to be in a center skilled in treating his problem. His number one goal should be to connect with an ET nurse who can help him eliminate his stoma problems.

November 17 of 2022? Your surgery date?

I think you should download it if that's how you feel you can express yourself in the best possible way. Light in the best possible way for the truth that you are living now. Those who want to watch the video can watch the video, and those who don't won't.

I think this is the beautiful part of this platform. There are so many choices that we can choose from and interactions we can choose from or not choose from. So, if that is what you feel in your heart and that would be expressing your highest truth for you, then you should probably do it, but that again is your decision. Peace.

Hi, I get what many of the people here are communicating to you, but I don't completely agree with them because when I felt anger, everywhere I turned was another squeaky clean and lemony sunshine positive message. I don't work like they do. I need to go through my anger, even fury at times, and not give up my anger. We all are people, and some of us had no prior warning before waking up with something a toilet saw most of the time, and now it is us becoming a little more like the toilet, and that messed with my mental health so much so that I sought therapy and antidepressants to help me get through - then COVID happened, and all my support went away before I could even start it. So, I had to do it on my own anyway. I say go through the anger. Tell people what you are feeling. Eventually, you will come to your own mental and emotional new level, but I don't believe you can just assume these attitudes. I call b.s.

Yep. In Basingstoke. Why?

I think it would help your recovery to put your story and true feelings in a series of articles. But how many people really want to read about the unvarnished ostomy truth? I believe suffering people need some hope, need a little virtual hand-holding. Yes! The reality of living with an ostomy completely sucks. Especially if the little bastard causes leaks, recedes, develops prolapse, and everyone's favorite...parastomal hernia. Talk about the ultimate "good news/bad news" scenario. You wake from surgery and the nurses and surgeon say "It went well." Then you look down and see something that is usually inside your tummy... now sticking out. WTF!

As you point out, too much happy, happy cheerfulness does not help at all with our new screwed-up "normal." But on the other hand, too much reality darkens our already pissed-off outlook.

My colostomy was the result of emergency exploratory surgery. I never suffered the ravages of Crohn's, Colitis, or Diverticulitis. A 15-year-old migrating hernia repair mesh punctured my intestine. Am I pissed? Do I enjoy seeing this huge bulge sticking out of my abdomen like a 32B single boob?