Ughhhhhh

Yesterday was rough. Two blowouts. A lap full of shit twice. I thought I did everything right. I've been down on myself for being stupid since that's obviously the issue. I've been trained in this; why am I failing 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 shit 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'm going to go on. I know I'll heal. Not being able to even walk down the hall without getting dizzy and wanting to fall out from the little white sparkles 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 myself. 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, I wouldn't 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 2 pm. I'm looking forward to reducing the pain of my centerline incision, and other pains. Hopefully, they got them right. . .

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.

See Ostomy tips for my post on blowout help. It does try one's ability to go on. Stoma power is what keeps me going. Go to Forum, Discussion Forum, Ostomy Tips, Blowout Help.

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
Bill

Omg- I didn't think anybody could read this thing.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

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 reversed. A lot of us are able to get it reversed. 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 closed. Good luck and keep us updated as you progress.

Folks, thank you. Just thank you. You were kind and supportive. It helps knowing that others who have traversed these paths still have compassion for those learning the experience.
I've been told 90 days for a reversal, but I'm not very confident in that for a few reasons, but they all may be unfounded 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 forward, not down. For this, I am grateful. Truly. Thank you.

Hi, do not give up! On days like this, the rule is one foot in front of the other... baby 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 around the bend. Feeling that relief when you do get them puts you on another plane. Let's face it, the relaxation offered by pain meds, not just for the pain, is really a lifesaver; 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 throughout 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 with a smile on your face.

Eamon XO

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 yet...it'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 meds....so 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 through 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 meds.....how 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! Get 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 8:00 pm sharp in the Rec Center......don't be late!

Regards,
Bob

Hi Lots,
You are in the same basic circumstances as me and a lot of ostomates here have been. Take it one week at a time, and I'm glad you are getting those feelings off your chest. We understand where you're at. After being on an IV, it will take some time, but you will regain your body and strength. You will again take control of your body, and eventually, you'll work out a system for getting your bag to seal. You will start realizing you are getting your self-esteem back; it will happen. Please read through the many forum topics regarding blowouts and bag prep, etc. I hope you'll read and post; you are at the best ostomy site out there. You'll find nice, caring people here who understand, offer support, friendship, and a wealth of experience and answers. You hang in there.

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." You're alive, and this will get better; small steps lead to great strides. Keep your chin up. XX ??

Lots,
I am sorry you are going through 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 through changing everything, but I never had to change anything while in the hospital. The first morning after discharge, I was surprised when the bag was full and I had no knowledge of what to do. My bag was so full I could not 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 through 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 130s). 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 through! It is amazing to me what the body can survive. Good luck, stay in touch.

Clint

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 advice.

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.

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