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Posted by Lotstolearn

Yesterday was rough. Two blow outs. A lap full of sh*t twice. I thought I did it all right. Been down on myself for being stupid since that's obviously the issue. I've been trained in this why am I failning so miserably!?!?

I'm trying to pull back from that bitter edge where everything is black and white and I'm that triggered veteran again in the midst of a ptsd episode, and no one can reach me. I'm angry, frustrated, my ex fiance walked in on me covered in sh*t trying not to cry as I was attempting to figure out how to get to the bathroom. I feel helpless, useless, and because I'm so weak from a month in the hospital, a super fast flow in my ostomy, and 3 weeks with no food initially in my stay, I'm less than 130 lbs of my original 185. With little fat reserves then or now. I know I'ma go on. I know I'll heal. Not being able to even walk down the hall without getting dizzy and want to fall out from the little white sparkleys that appear..... Useless. Fucking useless! I'm so strong!!! Yet right now I'm not! I'm weak, I'm frail, I'm vulnerable, and I hate it! I'm even shaking now from the exertion of trying to hold up this phone to write....I want to cry, but I can't. I won't feel sorry for me. But I want to. I know that road leads to self pity and I have none. I realized that if I'd gotten myself to the hospital instead of waiting a week, if not be in this terrible condition. But I didn't know.....I truly thought I was passing a kidney stone.... So the self blame still dances in my head, while I attempt to wrap my head around how my life will continue as I rehabilitate. I'm 3 days out of the hospital now. I want my life and independence back. And every step I make takes hours to recoup. I guess I just needed to complain for a minute. I'm still feeling down, but tomorrow's another day. Today I'll get my meds, pain meds included, since they screwed up and sent them to the wrong place on Friday, of course too late to change, and now they'll be ready today after 2pm. I'm looking fwd to reducing the pain of my centerline incision, and other pains. Hopefully the got them right. . .

See all blogs by Lotstolearn
Jul 12, 2021
mild_mannered_super_hero : Good morning, we all know what your going thru, I always call my early days with an ostomy the “dark time “. Have faith , while there is a learning curve involved in managing an ostomy you will learn how to master it given time. If you will glance at my photos you will see that I live an active lifestyle, I still do everything I did before and you will to. This forum is a wonderful tool that I didn't have when I was first learning, so use it, ask questions... someone will be able to steer you in the right direction. You can message me anytime if I can be of any help ????. God bless
Jul 12, 2021
Morning glory : I don't know what to say other than I am so sorry that you're going through this. I do hope you're going to contact your doctor and ostomy nurse. I am glad that you're able to vent. Stay strong.
Jul 12, 2021
xnine : See Ostomy tips for my post on blow out help. It does try ones ability to go on. Stoma power is what keeps me going. Go to Forum, Discussion Forum, Ostomy Tips, Blow out help.
Jul 12, 2021
Bill : Hello Lotstolearn.
Thank you for sharing you present situation and, although there is nothing practical I can contribute to this conversation, I would like to say that most of us have had similar experiences and feelings surrounding mishaps but eventually we get through them and hopefully move on to a better place in the scheme of things. In no time at all you will be a practicing 'expert' in the management of your stoma and can then help others to make similar adjustments.
Best wishes
Jul 12, 2021
Lotstolearn : Omg- I didn't think anybody could read this thing.
Jul 12, 2021
lovely : Sorry you are having so many problems. Don't get down on yourself a lot of people have had leaks. You will learn as you go and hopefully you will be able to get it reveresed. A lot of us are able to get it reveresed. WE all understand how hard it is at first. Just check and double check that your bag is snapped together all the way around as you press the bag to the wafer listen for the clicks as it snaps close. Good luck and keep us updated as you progress.
Jul 12, 2021
Ritz : Hang in there …situations will be ok .we're all rooting for you
Jul 12, 2021
Lotstolearn : Folks, thank you. Just thank you. You were kind, and supportive. It helps knowing that others have traversed these paths have have compassion still for those learning the experience.
I've been told 90 days for a reversal, but I'm not very confident in that fort a few reasons, but they all may be il-founded fears. So I'm prepared to have to wait longer. Yesterday was rough. No pain meds since Friday, no psyche meds either, and I felt buried under it all. You folks have helped me pick my head up and reminded me to look fwd, not down. For this in am grateful. Truly. Thank you.
Jul 12, 2021
magoo : Hi , Do Not Give Up !! On days like this the rule is one foot in front of the other steps . Number two , get as angry as you need to , cry as you must . You can throw things but only the dog's soft toys lol..don't break stuff !! I know you don't have the energy to throw stuff and whatever you do , do not kick the Dog / Cat , you're just going to fall over while making the effort and the Dog / Cat will have the last laugh. Not having those pain meds right out of surgery is no fun and can drive you round the bend . Feeling that relief when you do get them puts you on another plain . Lets face it the relaxation offered by pain meds , not just for the pain is really a life saver , they help you forget about the misery , mental and physical for a little while to let you catch your breath . Don't bother looking in the mirror for a while or get on a scale. When you begin to crest that mountain of recovery you will feel the point where you are over the worst , you feel that physical change in your body . Until then , one minute at a time , stay hydrated and eat little bits through the day . I know , it tastes like cardboard and you have to force every bite but just do it anyway , every bite counts .
My first time I had an infected incision because a nurse in ICU messed up putting the bag on and it leaked directly into my fresh wound for a whole day . Almost killed me and I left the hospital with this huge open wound from stem to stern , stopping just shy of my very important body parts !! lol I had to learn to shower and wash and clean the incision by myself and waited about 9 months for the incision to close entirely . I didn't think I would survive it but I did and the scar is barely visible . That scar has been opened about ten times since then and here I am , still writing and complaining and feeling sorry for myself sometimes , you CAN feel sorry for yourself , that's OK . Life took a big shit on you and you are justified in being pissed off at life in general .
Vent, Vent and keep Venting . You will get over this mountain and enjoy the ride on the way down the other side a few pounds heavier and a smile on your face .
Eamon XO
Jul 12, 2021
w30bob : Hey there Lots2.........looks like you've already met some of the gang!! Good folks they are......and you've come to the right place! I would have replied earlier, but I was busy wasting my time seeing an idiot dermatologist.......when I should have known better. I'll give you a good read all about it later. Promise.

Yeah, the first few days/weeks/months can be tough depending on your fortitude and ability to adapt. I'd say get used to having blowouts until you get it all sorted.....and even then things like your stoma shape will change on you, so there are no absolutes. So don't be in too much of a hurry to get your life back just's gonna be a little bit. With the possibility of a reversal you should have all the motivation you need to figure this shit out (no pun intended). But feel free to gripe/bitch/yell....whatever it takes.....we've all been there.

Ok, so let's talk about your two biggest issues....centerline pain and stopping the leaks. In regards to centerline pain you mentioned pain you know what they're for. It's gonna take about 2 weeks for the centerline pain to be something you don't think much about. In the meantime you need to keep moving, or the scar tissue at the incision will have a field day on you. Nothing crazy, just don't lie there all the time. I'm sure they had you up and moving around in the hospital pretty quickly.....don't get lazy. People put Vitamin E on the incision scar tissue to make it softer, bla, bla, bla....I never really dealt with any of that.....just keep it stretched and you'll be fine. If the pain meds you're getting aren't doing the trick...biting on a bullet seems to work well. To get to sleep a little Jack Daniels will calm the nerves and take the edge off....or maybe some Crown Royal if you're a silver spooner and don't touch the Lynchburg fire water.

Now the leakage.......we'll need some more info to help you figure that out. What they tell you in the hospital about all this ostomy stuff barely scratches the surface of what you need to know. Hence the popularity of this wonderful place!!! So tell us what your stoma (that red really ugly looking thing sticking out of your gut that wasn't there before the operation) looks like. Is it at skin level...above skin level....pointing straight out...leaning to one side. And where is it located......above or below the belt line. Is it where you naturally bend when you lean forward....meaning is there a skin crease that runs right thru where it's placed? Then tell us if you're using a convex barrier or a flat one...and if you use a ring or not. With that we can probably get you started down a leak free path.

Also, there seems to be something missing from your story. Just removing 55" of small bowel is not a justification for an ostomy. There's got to be something else going on. Is the rest of your bowel disease free? What caused the sepsis....meaning why did your bowel perforate? Fistula, lesions, holes in the bowel wall from did you get to where you were before they operated?

Anyway.......welcome to the club! I hate to have to say that to anyone......but in your case it may only be temporary. But between you and me....3 months to a reconnection sounds a bit optimistic.....I mean if that were the case they should have just put a zipper in your abdomen instead of sealing you all up, only to have to undo it all in a few weeks. Although, I've heard those medical grade zippers are REALLY expensive. Maybe the VA didn't love you THAT much!!

And lastly......."UGHHHHHH" is MY line cowboy! Git your own!! Ha-ha........just F&*king with ya. All right brother........welcome to the best website on the planet......for people with front asses! Glad to have ya on the team. Dodgeball starts at 8:00pm sharp in the Rec Center......don't be late!

Jul 13, 2021
Caz67 : Hi first of all welcome to the site. Like others have mentioned this is the best site for helping and supporting each other. Just try not to give yourself a hard time, we've all done the what if and could I should I. Your alive and this will get better, small steps lead to great strides. Keep your chin up. XX ??
Jul 13, 2021
Footie97 : Lots
I am sorry you are going thru the pain of no meds on two fronts. I was without psych meds for 2-3 weeks and I am not sure which was harder the pain or coming off psych meds. I certainly hope both get straightened out in short order. I thought I knew everything when I left the hospital after my colon ruptured. It was easy for the ostomy nurse to inspect the bag and talk me thru changing everything but i never had to change anything while in the hospital. The first morning after discharge was I surprised when the bag was full and I had no knowledge of what to do. My bag was so full I could jot see my ostomy. I was so weak after not eating for 14 days, I could not even make it to the toilet. I had to empty/change my bag sitting on the edge of the bed. I had to get a shower chair because I could not even stand for a shower, then my wife had to dry me, clothe me and wheel me back to bed. We have all been thru more than most can understand! Stay positive, look at YouTube for vids on how to tips. I was lucky enough to be reversed at 3 months so it is possible. I had a rougher time with reversal than I did with the initial surgery. That is a very long story. I am a year past my reversal and have gained my weight back (I also dropped down into the 130's). Keep your chin up, take advice from people on this site and move forward at your pace! I look back on the past year and am surprised I made it thru! It is amazing to me what the body can survive. Good luck, stay in touch

Jul 14, 2021
Daanders : Hang in there. We all have been through it. After 2 years I still have ups and downs. We all do. That's why we are all here for each other. I have got a lot of love and support from this group. Also great advise.
Jul 28, 2021
Justbreathe : I remember when I was told I needed an ileostomy (August 2020) ….the doc said they removed 12” of colon, my right ovary and my appendix….I was 76 years old and thought - no thanks, just please let me die. Fast forward - the. day the ileostomy nurse trained my husband and I on how to do a bag change…the nurse said to my husband “oh look, she is turning white and may pass out”. I could not even look at what had happened next to my bellybutton! I was told I could have a reversal in 3 months. I could hardly wait! But then a setback-(Nov 2020) I needed heart stents …are you kidding me? 76 years of a healthy body, no drugs - well except for my drug of choice - Captain Morgan and Diet Coke, and now you are telling me no reversal until heart issues are resolved? Fast forward (well not too fast - trying to make along story short). January 2020 ….heart attack….reversal has been postponed….no really?!!??!! Please can I just die now? I can't possibly deal with this stoma and bag changes for 3 more months! Never mind all the drugs, weakness, and shortness of breath….Please just do the reversal I will sign any medical release forms…just do it Nike (not the doctors name)…March - ah a colonoscopy…just what someone who's colon has not been functional since last August (not even a fart !) needs…a colonoscopy before any reversal can be done. Ah yes of course my lazy ass colon now had a stricture which required some “ballooning” but never mind that…just pour me a Captain and coke and let's move forward to that long awaited reversal!!! I can hardly wait!!! Fast forward to April surgeon appointment to plan this wonderful reversal….not so fast buster…I have developed a weird fondness for my stoma…named Seymour Picklelilly…. It's no so bad after all….somehow I have had a “change of heart” no pun intended…..what will the “trade off be” ? No one knows for sure…what I know for sure is that I feel well, I am off meds (except baby aspirin and Lipitor) Seymour is cooperating…and daughter sez if I end up needing any kind of care, a nurse would rather change a bag than clean my butt !!! Update… I just cancelled my July surgeon appointment to discuss reversal….not sure what is next but have decided I like not being in pain and do not want to spend another day in any pain given that I am 77 years old and thankful for every pain free day that I can enjoy….feeling as though Seymour and I will be together until death do us part….if he gives me any trouble I have made it clear to him….there is always reversal ! LOL…. Kudos to a very caring husband of almost 57 years who stuck to our sickness and in health.
Aug 02, 2021
Artsy Lady : Hi! I have a colostomy so I'm not sure how ileostomys are attached but, I have found that warming the adhesive with a hair dryer helps it to stick much better than warming it with your hands (as I was instructed).
I hear your frustrations and regret. I too delayed getting help because I thought it was something else. I also lost over 50 lbs and lost all my strength. There's nothing to do but move forward one day at a time.
Hang in there.
Aug 09, 2021
Khauni : ????

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