Jun 11, 2016 | Healing, Mostly Me, Tummy tales |
Well… everything is first!
For those who don’t know I lost my colon in 2004 and therefore I have an ileostomy…. It basically means I don’t poop the usual way but my ‘waste’ is collected into a bag stuck on my belly….
Sometimes… unfortunately I have problems with my stoma… nothing big though… but I’ve been dealing with leaks which have caused the skin around my stoma to brake and because of it the bag won’t stick properly… which again… causes more leaks… so I have to take care of this whole thing very carefully so it will heal… Not much to say about that really except… this morning my wife and I went to the mall… We had to be there a little longer than we originally planned …no big deal really as I always have an emergency bag in the car with extra set of cloths and everything needed for my stoma care and more … and of course my poop decided to go the wrong way … again no big deal… shit happens 
So after getting the emergency bag…. I go to the mall’s public toilets… they are actually very nice… but the normal stalls in the men’s room are small… and really not much space to change your clothes or do much of anything other than do your normal thing This is why I normally use the disabled bathrooms… I do have a special card I can wave around if I need to… but I’ve never really had to do that before… nor have I really had any problems or ‘looks’ in the past….
Obviously someone got up on the wrong side of the bed this morning… As my wife and I were walking through the door… inside the bathroom… a woman… maybe in her sixties… shouts up at us… and starts ranting about ‘perfectly healthy people using things that belong to the disabled’ such as toilets, parking spaces and getting disability payments from the government… but this has actually been on the media here a lot recently…
My wife calmly smiled and told her she agreed and wished her a good day… and that was really the end of it… except my mouse heart was beating like crazy….
I know I don’t look sick… or seem disabled (unless maybe when I speak)…. It’s a message never spoken too often…. There are a lot of us out there….
Feb 22, 2015 | Healing, Just Ramblings, Mostly Me, My family, Tummy tales |
We all have to do it… just some of us do it a bit differently than others… This is a post about eating or getting nourishment so you won’t starve to death …and returning the extras or what you don’t use any more out of the body… better known as pooping…. or what in my family is often referred to as the input and output of the human body…
My wife and I sometimes have the strangest conversation about this subject BTW… and we use strange/weird words or language to express us on the subject…. A lot of the time we think we are very funny, laughing and giggling like school girls… we know our place though and don’t do it everywhere… Unfortunately I can’t really give you any good examples of the words we use as they don’t really translate that good into English… but if something pops in to mind… I’ll try to include it…
I realize that not everyone feel comfortable when that particular subject… poop…is brought up and may probably find it quite disgusting or gross even… If you are one of those people that are easily grossed out by a little poop talk consider this a warning and don’t go any further with this reading….
When I met my wife over 30 years ago… and shortly after that most of her brothers and sisters but she is one of 14 siblings. I had already met her little brother Chris. He, like the rest of his brothers and sisters, was one of those people who always had the need to get people laughing… Some people may have found his jokes gross or even childish as they were often about stuff we all do but never quite talk about all that too much… like burping, pooping or farting… I admit that I had a hard time adjusting to this sense of humor and was quite embarrassed when Chris started off especially when we were among other people… but I did sort of play along maybe just to keep my cool as I was desperately trying to fit in to the social side of things at that time… but mostly just by laughing or… at least… pretending it was funny…
As a child I was brought up to stay silent about everything that had to do with the subject (well most subjects actually) …that is if you can call it upbringing …being punished physically and/or emotionally to say or do the wrong thing… Anyway… to me this subject was kind of off limits and really it stayed that way for a long time… maybe too long… except maybe when Chris was around… and then for the humor side of it only…
I say too long because since that particular subject… my poop… was a sign that probably I should have taken more seriously… I was however more concerned about keeping it a secret but also not having to deal with that subject with a stranger …a doctor… but I was also terrified of doctors of any kind… still am in many ways…
I have had problems with my digestive system as long as I remember… I know some of it may very well be caused by my mother who had pleasure of torturing me in many different ways… making me eat all sorts of things that were not meant for eating or starving me by not giving me anything for days… I remember waking up in the middle of the night having to run to the bathroom with diarrhea and even not being able to make it… I remember the most painful constipation lasting for quite some time… and having to deal with horrendous physical injury for months (even years) from the age of nine….consequences from being anally raped by a grown man…. and I am leaving out more that happened… things that were done to me…
It wasn’t really until 2001 or maybe 2002 that I couldn’t stay away from going to a doctor …and then at first it was a psychiatrist…. I wasn’t eating enough and I couldn’t give any logical explanation for it… Yes I did have lots of issues with food… I didn’t want it in my mouth… For one… it triggered memories of events I didn’t want to remember…. and at times…when I felt ashamed and/or hated myself…. I didn’t feel I deserved it and what I didn’t tell people… it was painful once it was in my body… especially if it was left there but if I ended up eating I felt I had to throw it up as soon as I could…. that was to me at the time a lot less painful… and I was pooping blood… I had either diarrhea or couldn’t go for days….
Around that time I was very thin… dangerously thin … malnourished and weak… was dehydrated a lot…. I was also very sick mentally… but being an expert of acting as everything was fine I was able to keep a lot of what was going on inside of me a secret… not all though… I don’t have any memory of it…but my wife told me later that in those years I talked about food being spoiled or I thought I was being poisoned… or about the food “eating me from the inside out”… However that was taken as just another excuse for me to justify my self-destructive behaviors…
I was diagnosed having Anorexia (purging type) and was getting professional help according to that diagnosis… I was told that I would get permanent organ damage if I’d continue to do this to myself… and there were even signs that it might already have happened… That gave me a bit of a scare so I wanted to at least try…
Mentally I did make some progress and even though I really wanted to change things around and try to eat properly… I was not ready to come out with my “pain and poop” problems… I couldn’t think of the idea having to talk about that to anyone… I started eating…. baby steps …it went alright at first… but I was nauseous all the time… and I was in pain… felt bloated and as if my stomach was going to burst anytime I ate something…. Then after a while I couldn’t keep the food down… and it came up no matter how hard I tried to keep it in there… Of course my doctors thought I had just fallen back to my old habits and was having a relapse in my attempt to recovery… This turned out to be the first step for me to talk about my physical aspect of things… I told them I couldn’t keep the food down… I tried to explain what it felt like but no they didn’t believe me… not at first… and I really do understand why….
This is when I got my first tube… an NG tube that went through my nose down to my stomach… That BTW was horrible time… That tube brought up many painful memories from my childhood…. The whole time it was in was like an endless flashback or being exposed to triggers constantly for weeks… I can’t for the life of me remember how long I had that tube… it felt like months… but I ended up throwing it up a few times… and that was not very pleasant thing to do and moments that I don’t really want to remember…
But anyway, when the docs I was seeing finally got what the deal was with me and NG tubes he wanted me to have a surgically inserted g-tube… a tube that goes through my abdominal wall straight into my stomach…. and the ‘fun’ went on… more problems… the ensures came up, my stomach couldn’t handle it… and another type of tube… that would bypass my stomach …was placed… a j-tube… That one worked for a bit… without too many problems but then my small intestine started to rebel and started going backwards among other strange things…. and finally ….what it seemed like them just shutting down…. more visits to the hospital… and also somewhere in the middle of all this I was diagnosed with gastroparesis… severely ulcerated stomach and some more I can’t really name… I had to have an operation where large portion of my stomach and parts of my small intestine were removed… I was still severely malnourished and underweight. In May 2004 they gave up on tube feedings and I was put on TPN or Total Parenteral Nutrition but with that I was given nutrition straight into my blood stream… Like with the g/j tube it went well at first… even better than with the tubes as I was feeling much better not only physically but mentally as well…. I had to stop that when my already weak organs started rebelling…. and I was back on tube feedings and after a while I was also eating orally along with the tube… This was July/August 2004…
I had a hospital bed reserved in mid-August for a couple of test and procedures, colonoscopy, endoscopy, CT scan and more… but my body couldn’t wait that long… I woke up one beautiful August morning in so much pain… Somehow I got out of bed but I could hardly stand or walk… and I was sweating like hell… but still shivering and feeling cold at the same time… My wife called the hospital and they told her to bring me in right away….
That’s how I lost my colon, anus and rectum…. and gained a new “output” hole, my ostomy… I can say ever since I was nine I hated the “output” hole I got at birth… There really isn’t much more to say about that one other than that I don’t miss it one little bit… and I’m quite happy with my Ken/Barbie-butt. Now what is that?… you might ask… Well that is what you get when your butt is sewed up (no butt hole) and well like a Ken or Barbie doll though I must admit mine is not nearly as pretty as Barbie’s or Ken’s butts… however not nearly as bad as it was when it first came into existence…. but I have a feeling that when they got theirs it didn’t hurt as much when I got mine…. I won’t complain though…. Recovering from a major surgery is never fun and takes time and patients… and for most of us it won’t last forever…
As much as I love my stoma I would be lying if I said that having one is a dance in the woods… though for me, compared to my old butt hole it feels like that sometimes… Occasionally I’ve had to relay on my wife helping me to take care of things… especially during periods of severe depression or when symptoms of the schizophrenia get bad… For me the hardest part especially at first was to take good care of it… I wasn’t exactly taking care of the rest of myself at the time either so there is no surprise that I had quite some problems with my skin around my stoma… I had/have multiple scars that almost cover my whole torso including the area around the stoma so getting the bag to stick was quite a challenge… but with good help and patients it got easier…. I do get occasional “run-away” though but that’s just one of those things that happen…
Embarrassing maybe…. if it happens out there in the world or out of the safety of your home… but no real harm done …except if you run into a prude who can’t respect diversity of human life… just remember it’s them who have a problem not you!
Another thing with leaks… For me… waking up in a puddle of poop is also one of the things my wife and I have to deal with… We both like to cuddle so unless we would give that up (difficult when you do it while you’re sleeping) Sunna can’t escape this one… Maybe unfortunately for her, I move around a lot while I sleep… something that I have always done I guess and I can’t really do much about it… but hey I used to sleep walk so maybe I will slow down once I get older… I have woken up lying flat on my tummy with the bag squished under me… sometimes with poop all over the place… sometimes not… It’s just one of those things and something you deal with when it happens….
My wife’s family has this thing about coming together and eat… where each family brings some food and share with the others…. It’s something they do very regularly and one of those things where I have had to be the odd one who doesn’t eat much or at all… but even though my stomach can now mostly tolerate food at least in small doses…
I’ve written about some of this before or at least mentioned it a few times but I’ve had difficulty swallowing for a while… causing food to get stuck in my throat, or my esophagus or even going up, out through my nose or down my windpipe… so I am still relying on tube feedings…. and may have to do that for the rest of my life…. I really don’t think too much of it… I can’t say that I have ever really enjoyed eating and if anything it has really been more of heartache than anything else for me… I won’t deny it however that sometimes… and in spite of my mental/emotional difficulties in those kinds of situations… I do miss the social aspect of eating… especially going out to restaurants with my wife and kids… and/or sometimes… my wife’s family-get-together events….
I wasn’t going to write my gastro/colitis story in this post… or not in much detail anyway… I was going to write about all of this in a much different way… but hey… this sort of thing happens quite easily with me…. And as I am writing this in MS Word it has reached 8 pages…at least if you count the picture…. so I think I will just end this right here….
I’m not writing any description or info for those pictures BTW… but as I was going through my phone’s picture folder and throwing out stuff or moving to a different storage I found those lying around… I might even take those out as I don’t feel 100% comfortable showing the world my tummy like that in all it’s glory… but for now it’s there….
As always feel free to ask any questions you might have… or leave me a comment, an email or a message on Facebook…. I’d be happy to reply…. and all sorts of feedback is always appreciated…
Dec 29, 2014 | Healing, Mostly Me, Schizophrenia, Tummy tales |
I had two doc appointments today…. The first appt was with my GI doc… where among other (boring) things…. I got a brand new tube… yet again… and he joked and told me I was “the tube terminator” which apparently… my loving wife thought was very funny…. but for some reason I have had to have it replaced quite frequently lately….
The second appt was with my p-doc… Last time I was there he talked about switching my meds…actually he has been talking about it since August…. but this morning he gave me my first dose of Invega which will hopefully work for me… The downside is however that I will have to swallow pills for the next 4 to 6 weeks as I’ve never taken those before… I must admit when I saw the pill he wanted me to swallow I didn’t think I could do it… as it was HUGE… but …with a ton of water…. I did it!
Now we just have to wait and see how it goes tomorrow… and the next day… and well… until we know how my body reacts…. and if all goes well I can have IM injections, like with the old one…
Jul 7, 2014 | Healing, Just Ramblings, Mostly Me, The Disordered Files, Tummy tales |
“Remember only a very few people have earned the right to hear those parts of us & only if we want to reveal”. ~ Mary Ann Goughler
In the past I have openly discussed some of the ugliest sides of my life… Although I haven’t exactly described them in much detail I have tried to express my emotions, that is, if they were available…
I have an ‘ugly side’ I want to talk about today… but although it is about desperation, fear and sadness there is something beautiful that has come out of it…
I think I’ve mentioned it here before… and although I’ve wanted “it” before this, somehow I didn’t want it as much until then… This was 2004-2005…
I was going to kill myself…
To the outside-world I was working towards a better life for myself…
The truth was I was tired of the game of listening and thinking the opposite… I was tired of listening to my family, my treatment team and with my inner turmoil not being able to do what I was supposed to do to ‘recover’… In my mind… in my delusional mind I knew I could never ‘recover’… It would be too much risk to take…
In a way I was living two separate lives… one that focused on ‘getting better’ and which is what I wrote about here on my journal during that time… and one that focused on dying… I never talked about that side… unlike in the past… I didn’t tell anyone how I felt as I didn’t want to risk a failure… and in the process I wanted to keep a distance from all my dear friends I had made online over the years…
I wasn’t going to hurt them anymore… I wasn’t going to hurt my wife, my sister, my children or my friends… and that is why I was going to kill myself…
I needed time however… I had to make sure they would know why… They had to know I was doing it to set them free from myself… my pain… and my evilness… I needed time to write each of them a letter…
I had to suffer through it… just like in the past…. worse even… Everything that I’d done to myself in the past wasn’t enough… I spent time surfing the internet looking for ideas… methods of killing myself… I got some ideas… some from online surfing… and some just from my head…
Months passed… even a year…. but finally… it was time….
I’m not going to talk about how I did it… That is for me only and maybe the medical team that treated me afterwards… It’s too private… and it’s too ugly…
I didn’t want to do this inside my home so sneaked outside one night when the time came for me to carry out my plan… I didn’t think twice about it…
It was like I was in a trance of some sort… or like an actor on a movie screen as the ongoing story went on… No feelings… no regrets… I was going to succeed this time…
Somewhere in the “process” I passed out from the pain… or maybe it was something else that made me pass out… I don’t know…
A thought imprinted in my memory… It could have been my last thought…
…the moment you realize what you have done… that you know you are actually going to die… and there is nothing you can do about it… that’s when you know you really want to live…
I was unconscious when I was found… rushed to the hospital…
I don’t remember any of that… I don’t remember anything until maybe four weeks later… as I was in ICU being waken up… a very vague memory… tubes… not being able to move… pain …but not unbearable…
At that point I didn’t realize what had happened… That came later…. I was in and out… Heavily sedated, still connected to a ventilator and all sorts of ICU equipment… Although this time is pretty much a blur in my memory… I do remember being afraid… I remember seeing images from my past flashing in front of me… I still couldn’t move… My hands and legs were tied to the bed as at one point I had somehow managed to rip out some tubes… For a while there I felt I was back in the past… as a child… being tortured… alone and betrayed…
After “it” I was hospitalized for almost three years total… most of it in psyche-ward… under intensive care, medical observation, physical therapy… therapy for my body and for my mind…. It took a while to put my shattered, at first, still suicidal, mind back together… I had to learn how to speak again and how to swallow food and liquids again… but somehow it happened… I didn’t hate myself anymore… I didn’t want to die anymore… I didn’t feel I had to free my family of me anymore or think they’d be better off without me…
Needless to say… Mentally I’ve come very far since this time… even counting a mental relapse in 2011-12 leading to my diagnosis was changed from Major Depression with Psychotic Features to Paranoid Schizophrenia… where I was hospitalized without my consent…
I have not fallen into such a deep depression nor have I hurt myself intentionally… and I hope it will never come to that again… ever…
The physical consequences of my “plan”… my “it”… are permanent… and can not be undone… and I am still dealing with the effect this had on my body…
I already had a damaged and diseased body before all this…
I already had problems eating food the normal way…
I already had problems speaking before all this…
“It” left me with even more problems eating food the normal way… difficulty swallowing, muscle damage, scaring and deformation of my tongue and inside my mouth, my throat, esophagus and stomach…
I have been absent for the last couple of weeks… I am having some health issues… and with that my mental health gets down as well… I’m hoping things will start getting better… but until then I focus more on my family and friends… and what’s most important… myself …than this journal…. I’m always ready for an email though 😉
My fears, my demons, my….. my ” it “…
I now direct them to take careful note of…
My middle finger.
They can go to hell…
They can go to the hell they have created for me…
The hell they did their best to get me into and keep me in.
I have to believe that I CAN win the battles.
And I *do* believe that.
Noah Grey
Nov 9, 2014:
Part two is here…
Jun 11, 2014 | Mostly Me, Tummy tales |
For those who don’t know… I had an ileoscopy this morning… Basically I had a tube with camera showed in through my stoma…. Apparently when I had my PEJ-tube put in a bit ago they saw something that looked like “something-that-shouldn’t-be-there”… Well, today they took a biopsy for further investigation but also saw some swelling but other than that nothing new, really… just my usual scarring which I have plenty of in there…
I’m sort of feeling “under the weather” at the moment so sorry for a short post….
Oh and btw I have quite a few emails left answering from last week and today apparently I’ve had a handful…. you’ll get a reply…. just later…
Jun 2, 2014 | Mostly Me, piano, Tummy tales |
Sometimes, even though you try with all your power to stay on the right side of OK, you can’t succeed… and sometimes when it rains it pours! With ‘old thoughts creeping’ in… and a lot of other stuff going on as well it’s fair to say I’m not doing to hot these days….
Not to worry though… I am fighting… and I have help to do so…
In case you didn’t see my last post I’m having some not so fun issues with my GI atm… dead or sleeping stomach… (j-tube feedings) and what’s left of the rest…working on overtime… and maybe in a not too good shape to be doing so but I guess I’ll find out in a couple of weeks… as I’m scheduled for ileoscopy… Now aint’ that something to look forward too…
But anyway, I’m still having issues with high output from my stoma… and I’m still not getting full dosage of the formula… To prevent an incident like the one in my last post I need to wake up every two hours to empty my bag… which is not good since I need my beauty/stay-sane sleep… Sunna talked with someone today to find out if there is something that can be done so I can get a full night sleep or at least something more than I’m currently getting as this is just a ticket to disaster… We’re expecting a phone call tomorrow…
I have to drink extra amount of water to avoid dehydration… and for now it seems it just runs through me like a river…
I’ve also been experiencing some weird side-effects from my meds…some that are making it harder for me to play the piano and some that I won’t talk about here… but Mr. P.doc is talking seriously about med change… not something to look forward to…
Now of course I saved the best news for last …. I’m going to be a grandpa in November! 😉
May 28, 2014 | Humor, Tummy tales |
Sorry, this post is not for the squeamish… You’ve been warned…
I’ve had my share of those in the past ever since I first got it back in 2004… It’s not something I like to talk about though… I guess that’s one of many things I hide even though for me at least it’s a lot better having one than to piss blood with our but all the time…. but then again who wants to read about my poop?
The ‘wows’ me and my Winnie (Yes it’s named after Winnie The Pooh) have sort of a love hate relationship these days…. along with my PEJ-tube which has been feeding us since the beginning of the month… They, Winnie and MR Tube, are keeping me busy all day as every hour I have to run in to restroom and empty my bag… Although there is no blood involved (like before Winnie was born) it sure reminds me of those days… (or what I remember from that time) …sort of like run before it goes all over the place… Even during the night I have to be sure to wake up every now and then and check if the bag is getting close to exploding…
So last night I didn’t wake up in time…. and no alarm either as that would have woken Sunna up in time for sure… So while we were sleeping Winnie decides to play naughty and me and my wife wake up in the middle of the night (well morning for some… at 5:30 am) with output, enough to make an elephant (with diarrhea I might add) proud… all over us, the bed and sheets…. Now that’s not something that hasn’t happened before as I’ve had my bag fall off during the night before… but this was quite over the top…. for both of us I might add… I don’t think I need to tell you hove much better it was to have a shower and clean cloths… then clean up in the bedroom… and another shower after that… I guess the window will stay open until tonight at least…
How is that for a fun waking up in the mornings?
May 25, 2014 | Healing, Mostly Me, Tummy tales |
May 10, 2014 | Mostly Me, Tummy tales |
I’ve been wanting to finish some of the writings I’ve started the last couple of weeks… There are over 15 “drafts” in my WordPress… but as come back to those and read them over I start editing, changing or (mostly) delete what’s there…
However my website host has also been giving me a hard time.. either being extra slow or not loading for me at all… and that’s just discouraging me from writing/posting (even though I write this mostly offline). Then again I’m also struggling with words… even though I have lots of things i feel I need to “get out” of my head… Maybe that the problem or at least a part of it… having too much to write about… so I guess I just post music instead… (like my previous post) as it doesn’t require too much thinking…
But anyway… I saw my GI doc Friday.. and Wednesday …and my P-doc on Thursday… It’s pretty much decided…. I have to get a tube inserted… not much more to say about that really…. Had it done before…. last time it was in 2011… before that in 2005…. and before that in 2003…
May 8, 2014 | Healing, Schizophrenia, Tummy tales |
Yes… I really am OK… or at least OK-ish… I’m just having some tummy/GI problems at the moment as sometimes they want to “play dead” on me and/or do what they are supposed to… and now my GI doc is talking about a j-tube…
Been there… done that before so no big deal really….
Because of this my meds will have to be changed a bit too…. I don’t want to go all psychotic on people online so I might not be around much if that happens… However it’s not really likely that will happen but you’ll never know for sure… and I want to be on the safe side.
